New Medical Specialty: Cancer Survivorship

Hello,

The Lance Armstrong Foundation has donated money to fund "cancer
survivor centers" at a number of major hospitals.

I find it very encouraging that my husband will be getting this kind
of help after he undergoes salvage radiation therapy at MSK in a
couple of weeks. You have to treat the whole patient and then provide
*good follow-up*. To me that's what separates the good hospitals from
the bad. We have been told to pretty much say Goodbye to a
conventional sex life. Naturally my husb is very upset about this (as
am I). But maybe there is hope.

I agree that patients need to be told if they face future health risks
as a result of their treatment. In real life I do not have the heart
to tell Spouse that as a result of the IMRT he may develop additional
cancers. But I will tell him in due time because maybe there's
something he could do to prevent it.

Best,

Leah

Cancer Care Seeks to Take Patients Beyond Survival
By LESLIE BERGER
Published: May 22, 2007

As a growing number of Americans are learning, surviving cancer can
mean slipping into a rabbit hole of long-term medical problems - from
premature menopause and sexual dysfunction to more debilitating side
effects of chemotherapy and radiation, like heart disease and even new
cancers.

The realization that cancer and its aftermath can go on for years has
given rise to a medical specialty known as survivorship. At several
major hospitals around the country, survivor programs financed by the
Lance Armstrong Foundation are focusing on life after cancer.

"It's no longer sufficient to say, 'Well, you survived,' " said Mary
S. McCabe, who directs the program at Memorial Sloan-Kettering Cancer
Center in New York. "We need to maximize their recovery and quality of
life."

Cancer treatment and research are expanding to incorporate long-term
postcancer care. With the number of survivors up to 10 million in the
United States, from 3 million in the 1970's.

[Example]

[A] patient of Dr. Ganz's, Karen Huner, credits her with diagnosing
and treating the hypothyroidism that was causing exhaustion and
headaches months after she was cured of breast cancer. Other doctors
had told her that the symptoms were effects of chemotherapy and that
she should "just get used to it," said Ms. Huner, a 44-year-old yoga
and pilates instructor. In fact, she added, it was the radiation she
received that probably disrupted her thyroid function.

She recently developed lymphodema, the painful swelling and water
retention that can happen in the arm where lymph nodes were removed.

"My lymphodema doctor said to me, 'Be happy you're alive,' " Ms. Huner
said. "I almost strangled her."

The potential side effects of radiation and chemotherapy have been
known for years, especially among survivors of childhood cancers. But
the big push for awareness and support followed a strongly worded
report in 2005 from the Institute of Medicine, part of the National
Academy of Sciences.

"The transition from active treatment to post-treatment care is
critical to long-term health," it concluded. "If care is not planned
and coordinated, cancer survivors are left without knowledge of their
heightened risks and a follow-up plan of action." Insurers, it added,
"should recognize survivorship care as an essential part of cancer
care."
.....
"A lot of cancer survivors have nothing wrong with them," Dr. Meadows
said. "But what is important is for anybody who's had cancer is to
know what treatment they received and what it's likely to lead to in
the future." The program is adding two primary care doctors to
encourage follow-up visits.
.....
[A study found that] more than 62 percent of [cancer] survivors had
at least one chronic condition; nearly 28 percent had a severe or life-
threatening one. The survivors were more than three times as likely as
their siblings to have a chronic health condition, and women were at
greater risk than men...
....
Age and type of treatment play a huge role in the experience of cancer
survivors, several experts said. Many experience no side effects at
all. Others, especially women of child-bearing age, face infertility
and early menopause.

"Our research shows that younger patients have a harder time, both
physically and emotionally," said Dr. Ganz, of U.C.L.A. "It's not
something they've expected."

At Sloan-Kettering, five social workers are assigned to concentrate
exclusively on follow-up care for survivors. Part of the plan, at
Sloan and other cancer centers, is to develop an online database of
patient-care summaries - of the cancer treatment received, the
potential risks and recommended follow-up care - that could be used by
any physician.

The hospital also plans to open an off-campus outpatient center
devoted to cancer survivors' physical rehabilitation...[A patient
donated money for this facility. He said]
"Our hope is to... provide access to rehabilitation right away,
initially in the New York metropolitan area and eventually to make
that a template nationally."

Even sexual dysfunction, which for years was viewed as a small price
to pay for survival, is now treated like any other side effect. ..

"We look at it in terms of enhancing intimacy," said Dr. Michael L.
Krychman, Sloan's expert on the subject. "They want things to get back
to normal."