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  #1  
Old 05-09-2008, 04:33 PM
downwinder
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Posts: n/a
Default Pathology Confusion

I'm newly diagnosed with invasive ductal carcinoma and am mystified
about the Grade part of my pathology report. SBR says 3 tubules 2
nuclear, 1 mitoses = 6 SBR. I'm guessing this is bad news good news
time, gnarly abnormal cells which are hopefully not dividing too
fast. SBR is the same on both tumors, sizes 12 mm and 5 mm.

Shortly after I was born in Utah in 1952, the first of 814 nuclear
tests began in Nevada. The test site always waited till the wind was
blowing toward us. Fallout was a common sight, and we were told never
to eat snow. There was some debate whether children should be
drinking milk, as the cows were eating grass coated with radiation.
We were also downwind from Standard Oil and Phillips Petroleum
refineries. I just heard that there's a large cancer cluster around
the Standard Oil refinery at Richmond, California. This is my second
bout; first was cervical cancer in 1985. I've since been the world's
biggest health nut, to no avail apparently.

Am still waiting on HER-2 results and hormone receptors. Perhaps
someone can shed light on my SBR results.

Les Wood


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  #2  
Old 05-09-2008, 08:04 PM
Tim Jackson
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Posts: n/a
Default Re: Pathology Confusion

downwinder wrote:
> I'm newly diagnosed with invasive ductal carcinoma and am mystified
> about the Grade part of my pathology report. SBR says 3 tubules 2
> nuclear, 1 mitoses = 6 SBR. I'm guessing this is bad news good news
> time, gnarly abnormal cells which are hopefully not dividing too
> fast. SBR is the same on both tumors, sizes 12 mm and 5 mm.
>
>
> Am still waiting on HER-2 results and hormone receptors. Perhaps
> someone can shed light on my SBR results.
>
> Les Wood
>
>


According to this paper
http://www.asco.org/ASCO/Abstracts+&...tractID=102006
the initial SBR value alone is not very meaningful in terms of
prognosis. Things like tumour size, lymph node status and hormone
receptor status are more important. It is however taken into account in
determining treatment. Logically it can indicate where a cancer is
growing rapidly and treatment is more urgent, for example, or it can tip
the balance where a decision is marginal on the other factors.

The above paper suggests that what is significant is the change in SBR
after neoadjuvant (ie pre-surgery) chemotherapy, where used. It then
gives a useful measure of the degree of response to therapy.

So I wouldn't worry about grade, it's not extreme and the mitosis rate
is low, so it's not going anywhere.


Tim Jackson
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  #3  
Old 05-10-2008, 02:17 PM
judy.n
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Posts: n/a
Default Re: Pathology Confusion

On May 9, 3:14*pm, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> "downwinder" <desertny...@cwo.com> wrote in message
>
> news:604f5cf1-fa6a-4453-9891-685d9b027676@s33g2000pri.googlegroups.com...
>
> > ... I've since been the world's
> > biggest health nut, to no avail apparently.

>
> I was very sad when I was diagnosed because I've put a huge amount of effort
> and energy into our health.
>
> But sh*t happens :-)
>
> Mary


I've just received a presumptive diagnosis: I'm in the early stage of
the work up--felt a lump, despite negative mammogram 9/07, got a
diagnostic mamm on Thursday, and the radiologist bluntly said--this is
cancer--had the biopsy yesterday and see the surgeon on Monday.
I kept thinking, "this is not in my plans."
I completely understand how it's just not something you see coming.
I sounds like your pathology report is actually reassuring.
Good luck.
Judy
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  #4  
Old 05-11-2008, 01:25 AM
downwinder
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Posts: n/a
Default Re: Pathology Confusion

On May 10, 5:16*am, "judy.n" <judy.nudel...@gmail.com> wrote:
> On May 9, 3:14*pm, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
>
> > "downwinder" <desertny...@cwo.com> wrote in message

>
> >news:604f5cf1-fa6a-4453-9891-685d9b027676@s33g2000pri.googlegroups.com...

>
> > > ... I've since been the world's
> > > biggest health nut, to no avail apparently.

>
> > I was very sad when I was diagnosed because I've put a huge amount of effort
> > and energy into our health.

>
> > But sh*t happens :-)

>
> > Mary

>
> I've just received a presumptive diagnosis: I'm in the early stage of
> the work up--felt a lump, despite negative mammogram 9/07, got a
> diagnostic mamm on Thursday, and the radiologist bluntly said--this is
> cancer--had the biopsy yesterday and see the surgeon on Monday.
> * I kept thinking, "this is not in my plans."
> * I completely understand how it's just not something you see coming.
> * I sounds like your pathology report is actually reassuring.
> * Good luck.
> Judy


Thanks Tim, Mary and Judy for your reassurance. It means a lot right
now. It is maddening to be surrounded by people with unhealthy
habits, and I'm the one who gets cancer--AGAIN. The doctor tells me,
it's time to beef up your immune system, and I really can't see what
more I can do. Life is unfair, not to mention full of surprises.

Sounds like you're a few days behind me, Judy. If the radiologist is
right and you're anything like me, first you'll cry, then shock-
induced dementia will set in. Suddenly I can't remember anything I'm
supposed to do. I'm starting to pull myself together and put things
in perspective. Maybe we can go through this together, across the
ether.

Luck to you too,

Les
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  #5  
Old 05-11-2008, 12:33 PM
Mary Fisher
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Posts: n/a
Default Re: Pathology Confusion


"judy.n" <judy.nudelman@gmail.com> wrote in message
news:117011a4-04da-4af6-a198-af3b4e28d3d2@34g2000hsh.googlegroups.com...
On May 9, 3:14 pm, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> "downwinder" <desertny...@cwo.com> wrote in message
>
> news:604f5cf1-fa6a-4453-9891-685d9b027676@s33g2000pri.googlegroups.com...
>
> > ... I've since been the world's
> > biggest health nut, to no avail apparently.

>
> I was very sad when I was diagnosed because I've put a huge amount of
> effort
> and energy into our health.
>
> But sh*t happens :-)
>
> Mary


I've just received a presumptive diagnosis: I'm in the early stage of
the work up--felt a lump, despite negative mammogram 9/07, got a
diagnostic mamm on Thursday, and the radiologist bluntly said--this is
cancer--had the biopsy yesterday and see the surgeon on Monday.
I kept thinking, "this is not in my plans."
I completely understand how it's just not something you see coming.
I sounds like your pathology report is actually reassuring.
Good luck.
Judy

Judy, Mammograms can't be expected to 'see' everything, the equipment is as
imperfect a tool as most things devised by humankind are.

In UK technicians aren't allowed to make diagnoses, results are sent to a
doctor who takes it from there. But when my consultant told me that I had
cancer I was grateful that he wasn't using euphemisms, that he expected me
to be intelligent enough to understand that I had a condition which he would
be dealing with to the best of his and his team's ability. I was in the
hands of experts, it was far better than having cancer and not knowing about
it.

As for 'not in my plans ' well, what is? We can't plan everything. If it
hadn't been cancer it might have been a bus :-)

I'm glad you have a positive diagnosis because now you're on the treatment
timetable, that's far better than ignoring a problem. Well done for seeking
advice when you found a lump.

Mine couldn't be palpated even by the specialists, it was too deep. But the
mammo found it by comparing one film with the one from three years before.
If I hadn't had that routine mammo I wouldn't have known until it was too
late.

Hugs,

Mary


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  #6  
Old 05-11-2008, 12:33 PM
Mary Fisher
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Posts: n/a
Default Re: Pathology Confusion


"downwinder" <desertnymph@cwo.com> wrote in message
news:923a84ad-c222-42d9-a171-b81c1aa530b2@j33g2000pri.googlegroups.com...
>



> Thanks Tim, Mary and Judy for your reassurance. It means a lot right

now. It is maddening to be surrounded by people with unhealthy
habits, and I'm the one who gets cancer--AGAIN.

I know!

My GP keeps telling me that I've had rough times despite being one of his
healthiest patients :-) I dread to think what life would have been like if I
hadn't been healthy :-)))

> The doctor tells me,

it's time to beef up your immune system, and I really can't see what
more I can do. Life is unfair, not to mention full of surprises.

But good surprises among the less good ones! And at least we have the
experience of life, I'd rather have that than not have been born - not that
I'd have known if I hadn't if you know what I mean!

> Sounds like you're a few days behind me, Judy. If the radiologist is

right and you're anything like me, first you'll cry, then shock-
induced dementia will set in. Suddenly I can't remember anything I'm
supposed to do. I'm starting to pull myself together and put things
in perspective. Maybe we can go through this together, across the
ether.

That's what this group is about.

Mary


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  #7  
Old 05-11-2008, 03:48 PM
judy.n
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Posts: n/a
Default Re: Pathology Confusion

On May 11, 5:09*am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> "judy.n" <judy.nudel...@gmail.com> wrote in message
>
> news:117011a4-04da-4af6-a198-af3b4e28d3d2@34g2000hsh.googlegroups.com...
> On May 9, 3:14 pm, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
>
> > "downwinder" <desertny...@cwo.com> wrote in message

>
> >news:604f5cf1-fa6a-4453-9891-685d9b027676@s33g2000pri.googlegroups.com...

>
> > > ... I've since been the world's
> > > biggest health nut, to no avail apparently.

>
> > I was very sad when I was diagnosed because I've put a huge amount of
> > effort
> > and energy into our health.

>
> > But sh*t happens :-)

>
> > Mary

>
> I've just received a presumptive diagnosis: I'm in the early stage of
> the work up--felt a lump, despite negative mammogram 9/07, got a
> diagnostic mamm on Thursday, and the radiologist bluntly said--this is
> cancer--had the biopsy yesterday and see the surgeon on Monday.
> * I kept thinking, "this is not in my plans."
> * I completely understand how it's just not something you see coming.
> * I sounds like your pathology report is actually reassuring.
> * Good luck.
> Judy
>
> Judy, Mammograms can't be expected to 'see' everything, the equipment is as
> imperfect a tool as most things devised by humankind are.
>
> In UK technicians aren't allowed to make diagnoses, results are sent to a
> doctor who takes it from there. But when my consultant told me that I had
> cancer I was grateful that he wasn't using euphemisms, that he expected me
> to be intelligent enough to understand that I had a condition which he would
> be dealing with to the best of his and his team's ability. I was in the
> hands of experts, it was far better than having cancer and not knowing about
> it.
>
> As for 'not in my plans ' well, what is? We can't plan everything. If it
> hadn't been cancer it might have been a bus :-)
>
> I'm glad you have a positive diagnosis because now you're on the treatment
> timetable, that's far better than ignoring a problem. Well done for seeking
> advice when you found a lump.
>
> Mine couldn't be palpated even by the specialists, it was too deep. But the
> mammo found it by comparing one film with the one from three years before.
> If I hadn't had that routine mammo I wouldn't have known until it was too
> late.
>
> Hugs,
>
> Mary


Mary and Les,
Thank you both: I am in the shock stage.
I did make my way to a general info site and learned some
information.
I'm a doctor, and many of my patients go to the breast surgeon
whom I'm seeing, but I'm a family practice doctor, and really didn't
know the specifics until I had some energy to look at the site--
written for lay people.
I think the radiologist was blunt with me because I'm a doctor. (I
hadn't told anyone I'm a doctor, and then when she came in to tell me
I needed a biopsy, I told her who I use and asked her to make the
appointments, because it was getting late in the day, and the report
wasn't even dictated yet While we waited, the ultrasound tech shared
that I had done her first pap smear 20 years ago--it was a very
surreal moment. So, I got a biopsy appointment the next morning, and
the tech the next day--supposedly trying to be friendly, gave me a
lecture about how doctors get special treatment, but all patients
deserve it. After the biopsy, she kind of kicked me out into the
hallway, still reeling, to wait for the mammogram I didn't know I was
getting.)
My gyn called and was surprised at the radiologist's bluntness, but
to be honest, I appreciated the radiologist's concern, where my own
gyn was sort of covering herself: "There was no delay here, you came
in, I didn't feel anything, but I ordered the mammogram. I have to go,
but call me anytime." Delayed diagnosis is a big lawsuit issue, but
that's the last thing on my mind, and unfortunately the first thing on
hers.
I had to call my office and cancel my schedule for Monday. The
practice manager tried to get me to come in and do paperwork.
Les, I'm in shock and all I can think or not think about is what
comes next, and how do I minimize the impact on my daughters and
husband.
This is life altering,
Thank you for your support and I will let you know what she says on
Monday--the radiologist had me get all my films to bring to the
appointment and that caused a ton of grumbling in the department. It's
so hard to deal with all of this and then deal with techs who have to
editorialize and "punish you" for some presumed special favor.
Judy
I didn't ask for special favors. Actually, I'm feeling guilty as hell,
because I watched the lump for a few weeks through a cycle before I
made the appointment with the gyn, who thought there was nothing
there. I feel like I delayed the diagnosis...
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  #8  
Old 05-11-2008, 03:48 PM
Mary Fisher
Guest
 
Posts: n/a
Default Re: Pathology Confusion


"judy.n" <judy.nudelman@gmail.com> wrote in message
news:5ecf41b7-aa0f-47f5-a17f-2954072804d9@l42g2000hsc.googlegroups.com...

> ... Actually, I'm feeling guilty as hell,

because I watched the lump for a few weeks through a cycle before I
made the appointment with the gyn, who thought there was nothing
there. I feel like I delayed the diagnosis...

As a doctor you'll know that a few weeks won't make any difference. Guilt
won't bring back those weeks - or even change anything. Tell yourself what
you'd tell a patient ...

I'm really surprised that you're in a state of shock though, you must know
that bc is very common and that recovery rates are increasing all the time.
As a complete lay'man' I'd say please don't worry, it won't do any good and
could make you very unhappy which won't aid your well-being.

You'll also know that a positive attitude won't influence the progress of
your treatment or recovery - what it will do is make that time happier. It's
going to be an interesting experience and a learning one too, that can only
be good.

Stick around here too! I doubt that there's anything you can say which we
haven't heard before :-)

Hugs,

Mary



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  #9  
Old 05-11-2008, 03:48 PM
judy.n
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Posts: n/a
Default Re: Pathology Confusion

On May 11, 9:41*am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> "judy.n" <judy.nudel...@gmail.com> wrote in message
>
> news:5ecf41b7-aa0f-47f5-a17f-2954072804d9@l42g2000hsc.googlegroups.com...
>
> > ... Actually, I'm feeling guilty as hell,

>
> because I watched the lump for a few weeks through a cycle before I
> made the appointment with the gyn, who thought there was nothing
> there. I feel like I delayed the diagnosis...
>
> As a doctor you'll know that a few weeks won't make any difference. Guilt
> won't bring back those weeks - or even change anything. Tell yourself what
> you'd tell a patient ...
>
> I'm really surprised that you're in a state of shock though, you must know
> that bc is very common and that recovery rates are increasing all the time..
> As a complete lay'man' I'd say please don't worry, it won't do any good and
> could make you very unhappy which won't aid your well-being.
>
> You'll also know that a positive attitude won't influence the progress of
> your treatment or recovery - what it will do is make that time happier. It's
> going to be an interesting experience and a learning one too, that can only
> be good.
>
> Stick around here too! I doubt that there's anything you can say which we
> haven't heard before :-)
>
> Hugs,
>
> Mary

Mary,
Thanks for the hugs and comments.
The state of shock is that I've been called back every mammogram and
had ultrasounds because of dense breasts, and somehow I just through
that that's how it would go last week.
I know the guilt is useless, and I'm the one who didn't like what I
was feeling--my gyn thought I was over-reacting.
The shock is that it's happening to me: my plans for the immediate
future were all about my daughter's wedding, and not being a patient.
I know that breast cancer is common, but it's still a shock when the
radiologist sits you down and says, this is cancer.
My gyn was humoring me by ordering a diagnostic mammogram, she
thought I was just being anxious.
There is a part of me that says I've examined a lot of breasts in
the last 28 years of practicing medicine, so when I felt it, I could
tell it wasn't just the usual fibrocystic lumpiness, so I didn't put
any faith in the normal mammogram 6 months ago, I watched it through a
cycle and made the gyn appointment.
Having something happen to you is a shock.
Working on the positive attitude: when I was a resident, another
resident's husband was part of the book about spiritual healing, and
for a while his laryngeal cancer was in remission, and then it came
back, (I think it was Bernie Siegal's book) and the poor guy was
beating himself up that he hadn't done enough visualization and
positive thinking, that it was his fault--should they edit him out of
the book.
Judy

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  #10  
Old 05-11-2008, 03:48 PM
Mary Fisher
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Posts: n/a
Default Re: Pathology Confusion


"judy.n" <judy.nudelman@gmail.com> wrote in message
news:d945dffe-1b1c-4f42-ae29-8a7b169e4165@8g2000hse.googlegroups.com...

Hello again Judy,

....

> The shock is that it's happening to me: my plans for the immediate

future were all about my daughter's wedding, and not being a patient.

Well, there's never a convenient time to have treatment for anything. I
discovered that when the neurological surgeon rang one lunch time after a
dramatic diagnosis of a brain tumour three days before (this in 1993). He
offered me two the next day or two weeks from then so I looked at my wall
planner. Every day for months was busy and I'd be incapacitated for about
ten days.

I said that I'd go the next day :-)

I also asked what the risk of a craniotomy was, he replied that brain
surgery is never without risk. I considered that for a second, thinking that
travelling in a car is never without risk and I did it almost daily in those
times. So I drove to the hospital, knowing that it would be two years before
I could drive again.

We in UK don't usually have the option of choosing a date for surgery, the
urgency of mine was unusual. When I had breast surgery it was determined by
the surgeon's holidays. When my husband had an RRP in 2006 he was given two
dates, because I'd been jumping up and down about delay. But if there had
been a family event such as a wedding coming up I'm sure all the surgeons
would have taken that into consideration. In fact the prostate surgeon did
agree that a family visit we'd organised was more important than immediate
surgery and that two weeks would make no difference. It was more important
for us to see our RAF son before he went to Afghanistan (which he didn't, in
the end).

If you have surgery you know that you'll be in for a very short time and
that most women are back to work soon. Radiation and/or chemotherapy times
aren't critical. What I'm saying is that every part of your treatment can be
accommodated so that you enjoy your daughter's wedding to the utmost. You're
not going to be ill, just temporarily incapacitated.

> Working on the positive attitude: when I was a resident, another

resident's husband was part of the book about spiritual healing, and
for a while his laryngeal cancer was in remission, and then it came
back, (I think it was Bernie Siegal's book) and the poor guy was
beating himself up that he hadn't done enough visualization and
positive thinking, that it was his fault--should they edit him out of
the book.

I specifically said that a positive attitude won't cure you, it just makes
life more enjoyable. I know that some people practise visualisation, I never
did, I'm not much good at that sort of thing. I reckon that the doctors are
there to do the healing job, I'm just there to make the most of it - and be
grateful :-)

It really is a most interesting experience, honestly. Not all beer and
skittles but, as they say in your part of the world, do-able.

More hugs,

Mary


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  #11  
Old 05-11-2008, 09:20 PM
xela56
Guest
 
Posts: n/a
Default Re: Pathology Confusion


> advice when you found a lump.
>
> Mine couldn't be palpated even by the specialists, it was too deep. But
> the
> mammo found it by comparing one film with the one from three years before.
> If I hadn't had that routine mammo I wouldn't have known until it was too
> late.
>


My gyn called and was surprised at the radiologist's bluntness, but
to be honest, I appreciated the radiologist's concern, where my own
gyn was sort of covering herself: "There was no delay here, you came
in, I didn't feel anything, but I ordered the mammogram. I have to go,
but call me anytime." Delayed diagnosis is a big lawsuit issue, but
that's the last thing on my mind, and unfortunately the first thing on
hers.
I had to call my office and cancel my schedule for Monday. The
practice manager tried to get me to come in and do paperwork.
Les, I'm in shock and all I can think or not think about is what
comes next, and how do I minimize the impact on my daughters and
husband.
This is life altering,
Thank you for your support and I will let you know what she says on
Monday--the radiologist had me get all my films to bring to the
appointment and that caused a ton of grumbling in the department. It's
so hard to deal with all of this and then deal with techs who have to
editorialize and "punish you" for some presumed special favor.
Judy
I didn't ask for special favors. Actually, I'm feeling guilty as hell,
because I watched the lump for a few weeks through a cycle before I
made the appointment with the gyn, who thought there was nothing
there. I feel like I delayed the diagnosis...


It is a life altering way, I am a RN. When I had my first mammogram there
was a very large lump. The tip off to me was the tech ( who I knew many
years and was not always kind) was very nice to me. I found it difficult to
be a patient where everyone knew me professionally. I had my surgery and
treatment in a very large medical center, which know one knew me, it some
ways I found this re assuring.

Good luck, don't think the worst. Chemo was much easier than I had seen
professionally ( chemo use to be done inpatient and the patients were
miserable. I worked a reduce schedule. Don't beat yourself. You can't play
what if's.

Alex, an eleven year survivor

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  #12  
Old 05-11-2008, 09:20 PM
Tim Jackson
Guest
 
Posts: n/a
Default Re: Pathology Confusion

judy.n wrote:
> On May 11, 9:41 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
>> "judy.n" <judy.nudel...@gmail.com> wrote in message
>>
>> news:5ecf41b7-aa0f-47f5-a17f-2954072804d9@l42g2000hsc.googlegroups.com...
>>
>>> ... Actually, I'm feeling guilty as hell,

>> because I watched the lump for a few weeks through a cycle before I
>> made the appointment with the gyn, who thought there was nothing
>> there. I feel like I delayed the diagnosis...
>>
>> As a doctor you'll know that a few weeks won't make any difference. Guilt
>> won't bring back those weeks - or even change anything. Tell yourself what
>> you'd tell a patient ...
>>
>> I'm really surprised that you're in a state of shock though, you must know
>> that bc is very common and that recovery rates are increasing all the time.
>> As a complete lay'man' I'd say please don't worry, it won't do any good and
>> could make you very unhappy which won't aid your well-being.
>>
>> You'll also know that a positive attitude won't influence the progress of
>> your treatment or recovery - what it will do is make that time happier. It's
>> going to be an interesting experience and a learning one too, that can only
>> be good.
>>
>> Stick around here too! I doubt that there's anything you can say which we
>> haven't heard before :-)
>>
>> Hugs,
>>
>> Mary

> Mary,
> Thanks for the hugs and comments.
> The state of shock is that I've been called back every mammogram and
> had ultrasounds because of dense breasts, and somehow I just through
> that that's how it would go last week.
> I know the guilt is useless, and I'm the one who didn't like what I
> was feeling--my gyn thought I was over-reacting.
> The shock is that it's happening to me: my plans for the immediate
> future were all about my daughter's wedding, and not being a patient.
> I know that breast cancer is common, but it's still a shock when the
> radiologist sits you down and says, this is cancer.
> My gyn was humoring me by ordering a diagnostic mammogram, she
> thought I was just being anxious.
> There is a part of me that says I've examined a lot of breasts in
> the last 28 years of practicing medicine, so when I felt it, I could
> tell it wasn't just the usual fibrocystic lumpiness, so I didn't put
> any faith in the normal mammogram 6 months ago, I watched it through a
> cycle and made the gyn appointment.
> Having something happen to you is a shock.
> Working on the positive attitude: when I was a resident, another
> resident's husband was part of the book about spiritual healing, and
> for a while his laryngeal cancer was in remission, and then it came
> back, (I think it was Bernie Siegal's book) and the poor guy was
> beating himself up that he hadn't done enough visualization and
> positive thinking, that it was his fault--should they edit him out of
> the book.
> Judy
>

Judy, you know you did exactly the proper thing, you did it by the book
and if you didn't get a diagnosis earlier that was because it *wasn't
diagnosable* earlier. Yes technically it might have been 'detectable',
but as a GP you know well that that is only part of the story of making
a diagnosis. If you hadn't waited out a cycle your gyn would probably
just have told you to go do that anyway instead of booking the mammogram.

So forget the "if only", a) because for every "if" there's a "yeah but",
b) because we have to live our lives from where we are, not from where
we would like to be, and c) because it's already been there about 10
years and another month beyond the threshold of detection really isn't
going to alter your risk noticeably.

I know well the tyranny of the "positive thinking" brigade, my wife
suffered terrible guilt that she couldn't bring herself to think
positively enough about her cancer. But this has been researched and it
has been shown fairly conclusively that positive thinking or otherwise
does not affect cancer outcomes in any real way.

Yes this is life changing. We come face to face with our own mortality
and we have to suddenly do that bit of growing up we neglected for all
those years. It's demanding, it breaks up your sleep and gets into your
dreams, it makes you forget things, it makes you react in unpredictable
ways. That happens when your life gets changed. It passes.

It also means that people you thought were your friends suddenly avoid
you: not because they think cancer is catching, but because they aren't
ready to do that bit of growing up they need to stay with you.


Tim Jackson
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  #13  
Old 05-11-2008, 09:20 PM
downwinder
Guest
 
Posts: n/a
Default Re: Pathology Confusion

On May 11, 11:40*am, Tim Jackson <t...@tim-jackson.co.uk> wrote:
> judy.n wrote:
> > On May 11, 9:41 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> >> "judy.n" <judy.nudel...@gmail.com> wrote in message

>
> >>news:5ecf41b7-aa0f-47f5-a17f-2954072804d9@l42g2000hsc.googlegroups.com....

>
> >>> ... Actually, I'm feeling guilty as hell,
> >> because I watched the lump for a few weeks through a cycle before I
> >> made the appointment with the gyn, who thought there was nothing
> >> there. I feel like I delayed the diagnosis...

>
> >> As a doctor you'll know that a few weeks won't make any difference. Guilt
> >> won't bring back those weeks - or even change anything. Tell yourself what
> >> you'd tell a patient ...

>
> >> I'm really surprised that you're in a state of shock though, you must know
> >> that bc is very common and that recovery rates are increasing all the time.
> >> As a complete lay'man' I'd say please don't worry, it won't do any goodand
> >> could make you very unhappy which won't aid your well-being.

>
> >> You'll also know that a positive attitude won't influence the progress of
> >> your treatment or recovery - what it will do is make that time happier.It's
> >> going to be an interesting experience and a learning one too, that can only
> >> be good.

>
> >> Stick around here too! I doubt that there's anything you can say which we
> >> haven't heard before :-)

>
> >> Hugs,

>
> >> Mary

> > Mary,
> > * Thanks for the hugs and comments.
> > The state of shock is that I've been called back every mammogram and
> > had ultrasounds because of dense breasts, and somehow I just through
> > that that's how it would go last week.
> > * I know the guilt is useless, and I'm the one who didn't like what I
> > was feeling--my gyn thought I was over-reacting.
> > * The shock is that it's happening to me: my plans for the immediate
> > future were all about my daughter's wedding, and not being a patient.
> > * I know that breast cancer is common, but it's still a shock when the
> > radiologist sits you down and says, this is cancer.
> > * My gyn was humoring me by ordering a diagnostic mammogram, she
> > thought I was just being anxious.
> > * There is a part of me that says I've examined a lot of breasts in
> > the last 28 years of practicing medicine, so when I felt it, I could
> > tell it wasn't just the usual fibrocystic lumpiness, so I didn't put
> > any faith in the normal mammogram 6 months ago, I watched it through a
> > cycle and made the gyn appointment.
> > * *Having something happen to you is a shock.
> > * *Working on the positive attitude: when I was a resident, another
> > resident's husband was part of the book about spiritual healing, and
> > for a while his laryngeal cancer was in remission, and then it came
> > back, (I think it was Bernie Siegal's book) and the poor guy was
> > beating himself up that he hadn't done enough visualization and
> > positive thinking, that it was his fault--should they edit him out of
> > the book.
> > * *Judy

>
> Judy, you know you did exactly the proper thing, you did it by the book
> and if you didn't get a diagnosis earlier that was because it *wasn't
> diagnosable* earlier. Yes technically it might have been 'detectable',
> but as a GP you know well that that is only part of the story of making
> a diagnosis. If you hadn't waited out a cycle your gyn would probably
> just have told you to go do that anyway instead of booking the mammogram.
>
> So forget the "if only", a) because for every "if" there's a "yeah but",
> b) because we have to live our lives from where we are, not from where
> we would like to be, and c) because it's already been there about 10
> years and another month beyond the threshold of detection really isn't
> going to alter your risk noticeably.
>
> I know well the tyranny of the "positive thinking" brigade, my wife
> suffered terrible guilt that she couldn't bring herself to think
> positively enough about her cancer. *But this has been researched and it
> has been shown fairly conclusively that positive thinking or otherwise
> does not affect cancer outcomes in any real way.
>
> Yes this is life changing. *We come face to face with our own mortality
> and we have to suddenly do that bit of growing up we neglected for all
> those years. *It's demanding, it breaks up your sleep and gets into your
> dreams, it makes you forget things, it makes you react in unpredictable
> ways. That happens when your life gets changed. *It passes.
>
> It also means that people you thought were your friends suddenly avoid
> you: not because they think cancer is catching, but because they aren't
> ready to do that bit of growing up they need to stay with you.
>
> Tim Jackson- Hide quoted text -
>
> - Show quoted text -


Tim, about the people who avoid you, I find myself wishing more people
would do that! As a social-avoidant hermit, I'm very sick of all
these people fussing over me. Having had cancer 23 years ago, I
vaguely remember acquiring coping skills, but this time the
treatment's going to be much harder.

Judy, make sure you get a copy of your pathology report. I got mine
from the doctor who did my biopsy, and was bewildered to find that she
knew less about its meaning than I did! I too was unhappy about
having to get more mammograms after the biopsy. I've probably had my
tumors for a number of years, and they never showed up on mammograms.
Having soaked up all those rads from being downwind from the 814
Nevada nuke tests, I'm just now wrapping my head around the idea of
post-lumpectomy radiation.

Are you having a tough recovery from the biopsy? Blood still oozes
from one of mine and they still ache, almost a week later. I also
have a five-inch wide purple bruise. Mere trifles compared to what's
to come, I know.

Contrast your situation with mine, Judy. I have no health insurance,
but am getting bare-bones treatment from the federal Breast and
Cervical Cancer Treatment Program. I must pay for things like second
opinions and implants myself. It's hard to find a doctor who will
accept patients without health insurance. I just discovered that one
of the two doctors I've been assigned to is a back surgeon. The other
is a cancer specialist, but she's an hour's drive away. I have to
take matters into my own hands and call around to see what I can find
on my own.

I don't mean to sound like I feel sorry for myself here--just trying
to make you feel better about the advantages you do have.

Thanks to you all for being here.

Les




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  #14  
Old 05-11-2008, 09:20 PM
judy.n
Guest
 
Posts: n/a
Default Re: Pathology Confusion

On May 11, 12:55*pm, "xela56" <noacco...@nw.nl> wrote:
> > advice when you found a lump.

>
> > Mine couldn't be palpated even by the specialists, it was too deep. But
> > the
> > mammo found it by comparing one film with the one from three years before.
> > If I hadn't had that routine mammo I wouldn't have known until it was too
> > late.

>
> * My gyn called and was surprised at the radiologist's bluntness, but
> to be honest, I appreciated the radiologist's concern, where my own
> gyn was sort of covering herself: "There was no delay here, you came
> in, I didn't feel anything, but I ordered the mammogram. I have to go,
> but call me anytime." Delayed diagnosis is a big lawsuit issue, but
> that's the last thing on my mind, and unfortunately the first thing on
> hers.
> * I had to call my office and cancel my schedule for Monday. The
> practice manager tried to get me to come in and do paperwork.
> * Les, I'm in shock and all I can think or not think about is what
> comes next, and how do I minimize the impact on my daughters and
> husband.
> * This is life altering,
> * Thank you for your support and I will let you know what she says on
> Monday--the radiologist had me get all my films to bring to the
> appointment and that caused a ton of grumbling in the department. It's
> so hard to deal with all of this and then deal with techs who have to
> editorialize and "punish you" for some presumed special favor.
> Judy
> I didn't ask for special favors. Actually, I'm feeling guilty as hell,
> because I watched the lump for a few weeks through a cycle before I
> made the appointment with the gyn, who thought there was nothing
> there. I feel like I delayed the diagnosis...
>
> It is a life altering way, I am a RN. When I had my first mammogram there
> was a very large lump. The tip off to me was the tech ( who I knew many
> years and was not always kind) was very nice to me. I found it difficult to
> be a patient where everyone knew me professionally. *I had my surgery and
> treatment in a very large medical center, which know one knew me, it some
> ways I found this re assuring.
>
> Good luck, don't think the worst. Chemo was much easier than I had seen
> professionally ( chemo use to be done inpatient and the patients were
> miserable. I worked a reduce schedule. *Don't beat yourself. You can't play
> what if's.
>
> Alex, an eleven year survivor


Thank you all for the helpful comments:
Tim, what you wrote is so true.
Les, I worked in community health centers and I know how hard it is
for people with little or no coverage: it's appalling that you have to
fight that battle too. My biopsy site is a bit oozy, sore and bruised,
and I'm cleaning it with hibiclens and putting bacitracin on the
bandage. It is sore.
Alex, I know the desire to be anonymous. I'm sticking with the local
breast health center for now, I do know the surgeon and oncologist,
but only professionally. I respect both of them. If needed, I'll
consider Dana Farber.
It's so hard not to think the worst, when we've worked with it and
seen it.
One of my colleagues just called to wish me luck and to tell me that
all my office work is covered, and that kind of concern goes a long
way.
Thanks.
Judy
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  #15  
Old 05-12-2008, 11:56 AM
Mary Fisher
Guest
 
Posts: n/a
Default Re: Pathology Confusion


"Tim Jackson" <tim@tim-jackson.co.uk> wrote in message
news:m--dnRqoH9QHoLrVnZ2dneKdnZzinZ2d@posted.plusnet...
....

>
> Yes this is life changing. ...
>
> It also means that people you thought were your friends suddenly avoid
> you: not because they think cancer is catching, but because they aren't
> ready to do that bit of growing up they need to stay with you.


And that's the very worst part of the process - well it was for me

Mary


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  #16  
Old 05-13-2008, 01:03 AM
downwinder
Guest
 
Posts: n/a
Default Re: Pathology Confusion

On May 12, 12:55*am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> "Tim Jackson" <t...@tim-jackson.co.uk> wrote in message
>
> news:m--dnRqoH9QHoLrVnZ2dneKdnZzinZ2d@posted.plusnet...
> ...
>
>
>
> > Yes this is life changing. * ...

>
> > It also means that people you thought were your friends suddenly avoid
> > you: not because they think cancer is catching, but because they aren't
> > ready to do that bit of growing up they need to stay with you.

>
> And that's the very worst part of the process - well it was for me
>
> Mary


Judy, hope you got your pathology report and can share it with us.
I'm three days ahead of you, and right now three days is forever. My
attitude hit rock bottom Friday, so you may turn the corner any time
now.
I got the rest of my pathology, and it sounds okay. Her-2 negative,
estrogen and progesterone are plus 3. This latter is confusing; I was
expecting a percentage, but was told this is quite high. So the
tumors can be starved (?), which I'm already doing. Since I've never
taken progesterone, I'm wondering where the tumors got that fix.
I have appointments with two surgeons who accept my program, so now
just have to choose between them. Am hoping lumpectomy might suffice;
may not have to go to India for reconstruction. One doctor is a
thoracic and general surgeon, the other I got myself--a cancer
specialist but farther away. My only concern is that I don't get an
overzealous lymph node remover, as I'm an active hard worker and not
ready for that level of disability at the age of 55.
Les


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  #17  
Old 05-13-2008, 12:32 PM
Tim Jackson
Guest
 
Posts: n/a
Default Re: Pathology Confusion

downwinder wrote:
> On May 12, 12:55 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
>>

> I got the rest of my pathology, and it sounds okay. Her-2 negative,
> estrogen and progesterone are plus 3. This latter is confusing; I was
> expecting a percentage, but was told this is quite high. So the
> tumors can be starved (?), which I'm already doing. Since I've never
> taken progesterone, I'm wondering where the tumors got that fix.
>

They don't need a 'fix'. The receptor status of the cancer has nothing
(or little) to do with hormone levels in the body, and even less to do
with external input. The hormones don't directly affect the DNA that
codes for their own receptors. They stimulate division of the cells,
and lead to random DNA damage, which among other things may include
multiplication of of areas that code for hormone receptors - which makes
the progeny cells prone to overgrowth, in the presence of that hormone.
Not necessarily the one that stimulated it in the first place.)
This is just one of the ducks on one of the reels in the cancer slot
machine. It also needs for example a mutation that shuts down the
mitochondria and the DNA repair mechanism, and one to turn on production
of telomerease, before it can really be called a cancer.

ER+3 means hormone treatment can be expected to have a strong effect in
suppressing further tumour growth.


Tim
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  #18  
Old 05-13-2008, 12:32 PM
Mary Fisher
Guest
 
Posts: n/a
Default Re: Pathology Confusion


"downwinder" <desertnymph@cwo.com> wrote in message
news:8d3484a2-9fbc-4df5-93d0-f37c9259d5bb@c19g2000prf.googlegroups.com...

....

My only concern is that I don't get an
overzealous lymph node remover, as I'm an active hard worker and not
ready for that level of disability at the age of 55.
Les

Les, I hope I can re-assure you on that matter.

ALL the nodes were removed from my axilla, the only result of that has been
the occasional ache in my arm. It's no worse than other aches I get in this
poor old body :-)

Lymph node removal doesn't necessarily cause disability.

Mary



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  #19  
Old 05-13-2008, 09:27 PM
downwinder
Guest
 
Posts: n/a
Default Re: Pathology Confusion

On May 13, 1:59*am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> "downwinder" <desertny...@cwo.com> wrote in message
>
> news:8d3484a2-9fbc-4df5-93d0-f37c9259d5bb@c19g2000prf.googlegroups.com...
>
> ...
>
> *My only concern is that I don't get an
> overzealous lymph node remover, as I'm an active hard worker and not
> ready for that level of disability at the age of 55.
> Les
>
> Les, I hope I can re-assure you on that matter.
>
> ALL the nodes were removed from my axilla, the only result of that has been
> the occasional ache in my arm. It's no worse than other aches I get in this
> poor old body :-)
>
> Lymph node removal doesn't necessarily cause disability.
>
> Mary


Mary,

That is encouraging, but I'm wondering how hard you've been able to
work your arm without getting lymphedema. I do lumberjack work like
clearing and burning brush, and carry some heavy loads. My neighbor
had all but two of her lymph nodes removed; if she tries to do much of
anything, ends up with terrible swelling. It's also my left breast,
and I'm left-handed. Thanks for any insight,

Les

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  #20  
Old 05-13-2008, 11:15 PM
Tim Jackson
Guest
 
Posts: n/a
Default Re: Pathology Confusion

downwinder wrote:
> On May 13, 1:59 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
>> "downwinder" <desertny...@cwo.com> wrote in message
>>
>> news:8d3484a2-9fbc-4df5-93d0-f37c9259d5bb@c19g2000prf.googlegroups.com...
>>
>> ...
>>
>> My only concern is that I don't get an
>> overzealous lymph node remover, as I'm an active hard worker and not
>> ready for that level of disability at the age of 55.
>> Les
>>
>> Les, I hope I can re-assure you on that matter.
>>
>> ALL the nodes were removed from my axilla, the only result of that has been
>> the occasional ache in my arm. It's no worse than other aches I get in this
>> poor old body :-)
>>
>> Lymph node removal doesn't necessarily cause disability.
>>
>> Mary

>
> Mary,
>
> That is encouraging, but I'm wondering how hard you've been able to
> work your arm without getting lymphedema. I do lumberjack work like
> clearing and burning brush, and carry some heavy loads. My neighbor
> had all but two of her lymph nodes removed; if she tries to do much of
> anything, ends up with terrible swelling. It's also my left breast,
> and I'm left-handed. Thanks for any insight,
>
> Les
>


Where's Ann when we need her? She had lymph nodes removed and does
heavy exercise - rowing. It certainly can be done.

I believe the incidence of lymphedema in patients who have had this
surgery is about 25%, of course the degree can vary considerably within
that.

It is not clear what the risk factors are, most of the advice around is
based on theory, not evidence. Advice used to be to avoid heavy
exercise and not to lift more than 10lb, but things are clearly not that
simple. My personal belief is that exercise is double-edged. In the
short term it causes increase lymph flow, which no doubt increases the
risk of edema, but in the longer term it enlarges the lymph ducts, and
so reduces the risk. By that reckoning exercise that build up
progressively and fairly gently over time should be the best bet for
avoiding problems. The usual process for avoiding injury, but with more
care taken.

It does seem that lymphedema involves some sort of elastic failure of
the skin, so one it happens, the change is permanent, so it is important
to avoid high-risk events, whatever those are. Infection obviously,
probably muscle strains, and anything that constricts lymph flow, eg
tight bracelets (remember there are lymph ducts on TOP of your shoulder
too, so heavy carry-straps are a bad idea).


Tim
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  #21  
Old 05-14-2008, 01:28 AM
xela56
Guest
 
Posts: n/a
Default Re: Pathology Confusion

With sentinel node biospy it is so much lower

http://www.ncbi.nlm.nih.gov/pubmed/12678476

http://www.surgeryencyclopedia.com/P...de-Biopsy.html

I would try to have a SNB since it lowers your odds of lymphedema.



"Tim Jackson" <tim@tim-jackson.co.uk> wrote in message
news:_6udncvd6ZwshbfVnZ2dnUVZ8szinZ2d@posted.plusn et...
> downwinder wrote:
>> On May 13, 1:59 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
>>> "downwinder" <desertny...@cwo.com> wrote in message
>>>
>>> news:8d3484a2-9fbc-4df5-93d0-f37c9259d5bb@c19g2000prf.googlegroups.com...
>>>
>>> ...
>>>
>>> My only concern is that I don't get an
>>> overzealous lymph node remover, as I'm an active hard worker and not
>>> ready for that level of disability at the age of 55.
>>> Les
>>>
>>> Les, I hope I can re-assure you on that matter.
>>>
>>> ALL the nodes were removed from my axilla, the only result of that has
>>> been
>>> the occasional ache in my arm. It's no worse than other aches I get in
>>> this
>>> poor old body :-)
>>>
>>> Lymph node removal doesn't necessarily cause disability.
>>>
>>> Mary

>>
>> Mary,
>>
>> That is encouraging, but I'm wondering how hard you've been able to
>> work your arm without getting lymphedema. I do lumberjack work like
>> clearing and burning brush, and carry some heavy loads. My neighbor
>> had all but two of her lymph nodes removed; if she tries to do much of
>> anything, ends up with terrible swelling. It's also my left breast,
>> and I'm left-handed. Thanks for any insight,
>>
>> Les
>>

>
> Where's Ann when we need her? She had lymph nodes removed and does heavy
> exercise - rowing. It certainly can be done.
>
> I believe the incidence of lymphedema in patients who have had this
> surgery is about 25%, of course the degree can vary considerably within
> that.
>
> It is not clear what the risk factors are, most of the advice around is
> based on theory, not evidence. Advice used to be to avoid heavy exercise
> and not to lift more than 10lb, but things are clearly not that simple.
> My personal belief is that exercise is double-edged. In the short term it
> causes increase lymph flow, which no doubt increases the risk of edema,
> but in the longer term it enlarges the lymph ducts, and so reduces the
> risk. By that reckoning exercise that build up progressively and fairly
> gently over time should be the best bet for avoiding problems. The usual
> process for avoiding injury, but with more care taken.
>
> It does seem that lymphedema involves some sort of elastic failure of the
> skin, so one it happens, the change is permanent, so it is important to
> avoid high-risk events, whatever those are. Infection obviously, probably
> muscle strains, and anything that constricts lymph flow, eg tight
> bracelets (remember there are lymph ducts on TOP of your shoulder too, so
> heavy carry-straps are a bad idea).
>
>
> Tim


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  #22  
Old 05-14-2008, 12:02 PM
Tim Jackson
Guest
 
Posts: n/a
Default Re: Pathology Confusion

xela56 wrote:
> "Tim Jackson" <tim@tim-jackson.co.uk> wrote in message
> news:_6udncvd6ZwshbfVnZ2dnUVZ8szinZ2d@posted.plusn et...
>>
>> I believe the incidence of lymphedema in patients who have had this
>> surgery is about 25%, of course the degree can vary considerably
>> within that.
>>

> With sentinel node biospy it is so much lower
>
> http://www.ncbi.nlm.nih.gov/pubmed/12678476
>
> http://www.surgeryencyclopedia.com/P...de-Biopsy.html
>
> I would try to have a SNB since it lowers your odds of lymphedema.
>
>

Sorry, I wasn't clear. By "this surgery" I meant axillary clearance.
Indeed the Sentinel Node procedure obviates many unnecessary clearances,
where the node is found negative, and does not of itself give rise to
much (if any) lymphedema.

I think a figure around 25% still applies where the node was found
positive, although some centres may show lower rates.
www.ncbi.nlm.nih.gov/pubmed/15213610

SNB does lower the rate of lymphedema quite a lot, but on the down side
it has a small number of false-negatives. In the early days of the
procedure this was a significant argument against widespread adoption of
the technique. Improvements in technique and training mean it is now
less of an issue, especially in the major hospitals, but there still
seems to be some debate.

Tim
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  #23  
Old 05-14-2008, 12:02 PM
Mary Fisher
Guest
 
Posts: n/a
Default Re: Pathology Confusion


"Tim Jackson" <tim@tim-jackson.co.uk> wrote in message
news:_6udncvd6ZwshbfVnZ2dnUVZ8szinZ2d@posted.plusn et...
> downwinder wrote:
>> On May 13, 1:59 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
>>> "downwinder" <desertny...@cwo.com> wrote in message
>>>
>>> news:8d3484a2-9fbc-4df5-93d0-f37c9259d5bb@c19g2000prf.googlegroups.com...
>>>
>>> ...
>>>
>>> My only concern is that I don't get an
>>> overzealous lymph node remover, as I'm an active hard worker and not
>>> ready for that level of disability at the age of 55.
>>> Les
>>>
>>> Les, I hope I can re-assure you on that matter.
>>>
>>> ALL the nodes were removed from my axilla, the only result of that has
>>> been
>>> the occasional ache in my arm. It's no worse than other aches I get in
>>> this
>>> poor old body :-)
>>>
>>> Lymph node removal doesn't necessarily cause disability.
>>>
>>> Mary

>>
>> Mary,
>>
>> That is encouraging, but I'm wondering how hard you've been able to
>> work your arm without getting lymphedema. I do lumberjack work like
>> clearing and burning brush, and carry some heavy loads. My neighbor
>> had all but two of her lymph nodes removed; if she tries to do much of
>> anything, ends up with terrible swelling. It's also my left breast,
>> and I'm left-handed. Thanks for any insight,
>>
>> Les
>>

>
> Where's Ann when we need her? She had lymph nodes removed and does heavy
> exercise - rowing. It certainly can be done.


I wish I'd read this before I replied :-)
>
> I believe the incidence of lymphedema in patients who have had this
> surgery is about 25%, of course the degree can vary considerably within
> that.
>
> It is not clear what the risk factors are, most of the advice around is
> based on theory, not evidence. Advice used to be to avoid heavy exercise
> and not to lift more than 10lb, but things are clearly not that simple.
> My personal belief is that exercise is double-edged. In the short term it
> causes increase lymph flow, which no doubt increases the risk of edema,
> but in the longer term it enlarges the lymph ducts, and so reduces the
> risk. By that reckoning exercise that build up progressively and fairly
> gently over time should be the best bet for avoiding problems. The usual
> process for avoiding injury, but with more care taken.
>
> It does seem that lymphedema involves some sort of elastic failure of the
> skin, so one it happens, the change is permanent, so it is important to
> avoid high-risk events, whatever those are. Infection obviously, probably
> muscle strains, and anything that constricts lymph flow, eg tight
> bracelets (remember there are lymph ducts on TOP of your shoulder too, so
> heavy carry-straps are a bad idea).


I forgot to add that we were encouraged to care for our skin by using
moisturisers. I haven't done - I'd forgotten about it but I think I should
have done.

Mary
>
>
> Tim



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  #24  
Old 05-14-2008, 12:02 PM
Mary Fisher
Guest
 
Posts: n/a
Default Re: Pathology Confusion


"downwinder" <desertnymph@cwo.com> wrote in message
news:f42a246d-58ac-4a38-928b-551d181a8c4c@1g2000prg.googlegroups.com...
>
> ALL the nodes were removed from my axilla, the only result of that has
> been
> the occasional ache in my arm. It's no worse than other aches I get in
> this
> poor old body :-)
>
> Lymph node removal doesn't necessarily cause disability.
>
> Mary


Mary,

That is encouraging, but I'm wondering how hard you've been able to
work your arm without getting lymphedema. I do lumberjack work like
clearing and burning brush, and carry some heavy loads. My neighbor
had all but two of her lymph nodes removed; if she tries to do much of
anything, ends up with terrible swelling. It's also my left breast,
and I'm left-handed. Thanks for any insight,

Les

Hello Les,

Different people react in different ways to any surgical intervention, I was
saying that not everyone develops lymphoedema after lymph node removal or
damage.

My cancer was in my right breast so my right axilla was affected. I am
right-handed.

We were encouraged - strongly - while in the ward to do the prescribed
exercises, I did them enthusiastically (because of pride, I wasn't going to
be shamed by the younger patients!). It was stressed that too much exercise
and weight lifting was not advocated. That was then, things might have
changed.

We were also taught to do manual lymph drainage regularly. I did at first
and even now when I remember but only because it feels nice, I don't know if
it helped or not. In my city there's a specialised Lympho clinic which
advises, provides support sleeves and stockings and any other support anyone
needs. I once was given a sleeve but it was so uncomfortable I gave it back.
My arms have been measured and compared several times (though not recently)
and have never shown much difference. Since my upper arms are fat anyway I'm
not sure that was much value.

Since then I've been able to do everything I've wanted to do with that arm
(I'm right handed), including stretching, lifting, carrying and occasionally
using a hand axe. My first task when I got home - apart from helping Spouse
to erect a very complicated high specialised tent - was to go up a ladder
and cut down all the ancient ivy from our house wall. It involved a lot of
stretching and pulling as well as cutting and sawing large diameter branches
and the main trunk. I've built walls, dug the garden, carried heavy items to
the limit of my strength ... we both lead a very active life.

Oh - and that arm has been bitten, grazed, stung and burnt lots of times,
there's never been any subsequent infection.

I do try to remember to not allow heavy bags to hang from my arm - but I
forget :-)

I'm sure that keeping my arm moving and well exercised has done it and me
good, I don't want to be a victim. Think of the Dragon Racers. There used to
be a member here who was an energetic swimmer too.

http://www.thecancerblog.com/2006/03...to-prevention/

But as I said that's me and many others, it might be true for you too. I
believe that swelling is the exception rather than the rule. Don't take
risks though.

Hugs,

Mary


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  #25  
Old 05-15-2008, 02:42 AM
xela56
Guest
 
Posts: n/a
Default Re: Pathology Confusion

SNB is the standard of care in the Boston area, and now the controvesy is
where or not the node disection is needed.


"Tim Jackson" <tim@tim-jackson.co.uk> wrote in message
news:U5KdnV3BqqfdObfVRVnyjQA@posted.plusnet...
> xela56 wrote:
>> "Tim Jackson" <tim@tim-jackson.co.uk> wrote in message
>> news:_6udncvd6ZwshbfVnZ2dnUVZ8szinZ2d@posted.plusn et...
>>>
>>> I believe the incidence of lymphedema in patients who have had this
>>> surgery is about 25%, of course the degree can vary considerably within
>>> that.
>>>

>> With sentinel node biospy it is so much lower
>>
>> http://www.ncbi.nlm.nih.gov/pubmed/12678476
>>
>> http://www.surgeryencyclopedia.com/P...de-Biopsy.html
>>
>> I would try to have a SNB since it lowers your odds of lymphedema.
>>

> Sorry, I wasn't clear. By "this surgery" I meant axillary clearance.
> Indeed the Sentinel Node procedure obviates many unnecessary clearances,
> where the node is found negative, and does not of itself give rise to much
> (if any) lymphedema.
>
> I think a figure around 25% still applies where the node was found
> positive, although some centres may show lower rates.
> www.ncbi.nlm.nih.gov/pubmed/15213610
>
> SNB does lower the rate of lymphedema quite a lot, but on the down side it
> has a small number of false-negatives. In the early days of the procedure
> this was a significant argument against widespread adoption of the
> technique. Improvements in technique and training mean it is now less of
> an issue, especially in the major hospitals, but there still seems to be
> some debate.
>
> Tim