Research

Several friends have put me in touch with others who have breast cancer. One of these had the same type of cancer I have, only hers was in situ (less invasive). She had a total mastectomy and now 4 years later is dealing with recurrence. She was treated by one of the top cancer centers in Boston and just got back from Minnesota, where an even higher-ranked cancer center gave her a second opinion. The experts disagree because there are no certainities with breast cancer and research provides new information all the time.

The experts and fellow cancer patients tell me it's important to do my own research, to advocate for my own health, and not to trust the doctors' advice alone (no matter how good they are).

A search of my local library brought up 9 pages of results for breast cancer. Researching this disease, its causes, and treatment could be a full-time job. I checked out the following:

• Dr. Susan Love's Breast Book--4th edition published in 2005. The most recent version is important for its new information on Tamoxifen;
• How to Prevent and Treat Cancer with Natural Medicine (might as well seek a complementary, well-rounded approach, the experts advise); and,
• Breast Cancer Husband: How to Help Your Wife (and yourself) Through Diagnosis, Treatment and Beyond (I'll let Steve blog about this one.)

Another friend who was treated for breast cancer last year dropped off the following:

• Songs from a Lead-Lined Room--Notes--high and low--from my journey through breast cancer and radiation; and
• Radiation Therapy and You

So I have lots of reading to catch up on before the pathology report comes in and the whirlwind begins again.

Dr. Susan Love's Breast Book seems to be the most respected and comprehensive "Bible for women with breast cancer" (at least according to the New York Times). At 620 pages, it's mindnumbing in its detail. The information on treatment, what they know and don't know, and what the clinical trials are discovering would be fascinating if it weren't so depressing. This information is on a need to know basis only. If you don't need to know the details about treatment, PLEASE skip down to Other Treatment Options or check back in a few days for a more upbeat post. Do not read the following.

Radiation can be as effective as mastectomy. It's not important apparently to get every bit of the cancer through surgery out because the radiation is going to kill any remaining cells. And recurrence happens even in those who have had a total mastectomy (see example at the beginning of this post). Radiation is effective but has a few unpleasant side effects and a couple of nasty problems that are really rare--like causing other cancers and messing up the lungs. Plus a radiated breast can't be radiated again in the case of recurrence. My type of cancer has a high rate of recurrence.

Systemic Treatments such as hormone therapy and chemotherapy have a complicated formula used to determine if they are worth using. Steve will have to blog about that because the math involved makes my head hurt. They once used chemo only for folks with metastatic cancer but now it's used to help prevent recurrences in non-metastatic cancers. Used thusly, it's called adjuvant therapy. Doctors have a website that can help them calculate the risks/benefits of such therapy. Unfortunately, systemic treatments have more nasty side effects and they do not guarantee survival. Chemotherapy only increases your chances of survival; how much it increases your chances depends on the type, size and spread of my cancer--things we won't know until the pathology report comes back.

Here's what Dr. Love says:

"Decisions about chemotherapy are confusing for women with positive nodes, and even more so for women with negative nodes. We know that between 30 and 40% of women with negative nodes will still get metastatic breast cancer and sooner or later die of it."

You don't get more gloomy than that! If you have access to a foundation's money, send research dollars to help figure this out!

She goes on to say:

"So there's no perfect formula, at least so far. I had one patient back in Boston who had a small tumor, negative nodes, and negative bio-markers. But she wanted chemo . . . and got chemotherapy. One year later the cancer metastasized and she died. By all statistical predictions she should have surivied, even without the chemo, and the chemo should have guaranteed her survival. This isn't meant to depress you: it often works the other way.... It just illustrates that we have only odds, no certainty; to some extent, it's a crap shoot. You have to just search your heart and make your own choice."

IT'S A CRAP SHOOT!?!

Regarding Surgery:

Under the category of information that would've been nice to know last week comes this:
A few studies are now showing that the timing of the surgery makes a difference in pre-menopausal women, i.e. it's safer to have surgery during your luteal phase (second half of the menstrual cycle). Oh well, we blew that.

Other treatment options:
Apparently, laughter is good medicine also. So feel free to post or send me your BEST jokes. I want to laugh, not moan.

The pain at the surgery sites and tingling in my left arm are side effects from the surgery. With luck, the prickly, tingling sensation down my arm should cease in a couple months.

Nutrition is also very important... lots of fresh fruits and vegetables. Tomorrow, I begin the journey with a nutritionist. I'm happy to report that while lots of websites cite a macrobiotic diet as the key to cancer treatment, there have been no studies supporting this claim. Whew! I thought I was going to have to give up dairy. Maybe the nutritionist will let me keep the cheese as long as I cut back on the fat and processed food.