Thursday, February 28, 2008

recurring cancer

I have been thinking about cancer lately.

Over Xmas, my sister’s brother in law was complaining of a cough, night sweats. They discovered cancer – in his lungs, his bones, his lymph nodes. They don’t know where the primary cancer began, just that over the last few years it had metastasized everywhere without his knowing. He’s undergoing chemotherapy now, but they don’t expect him to live more than 6 months. Verne has always been healthy, he ate right, his father is still alive and 95 years old.

When I was discovering my breast cancer, another friend of my sister was discovering hers. We were both on the same page – 2 cancers in one breast, so a mastectomy was required. She underwent reconstruction during her mastectomy a week before mine; they took tissue from her tummy to make a breast. Her surgery lasted 7 ½ hours. I had an expander put in. Though my initial mastectomy surgery and recovery was easier, I’m now facing another 3 ½ hour surgery next month (in less than 2 weeks, as a matter of fact).

Her cancer was HER2 positive but was not estrogen responsive. Mine was HER2 positive and estrogen responsive. She is undergoing chemotherapy now. I’m taking the estrogen blocker for 5 years.

The big fear is a recurrence of cancer. My cancer was small, only detectable by MRI – but it was invasive. The cancer cells could have gotten into my blood or lymphatic system and spread somewhere else in my body – my bones, my brain.

A recurrent cancer is much more problematic than another primary cancer. A primary cancer can be removed and then treated with chemotherapy. A recurrent cancer means that a cancer has ventured out of its site of origin, and there’s no telling where it will turn up next.

I guess I’ve sobered up some on this issue of cancer. I no longer feel so invincible. I take my Femara every day, even though I blame every ache and pain and sleepless night on it.

Sunday, February 17, 2008


I suppose because I squeaked my way out of chemotherapy, I didn’t put up much of a fuss when Dr. Bertrand prescribed the Femara.

Femara is an estrogen blocking drug. The invasive cancer that was removed from my breast was 10% estrogen-responsive, which means that in the presence of estrogen, it grew faster. The theory now is that if there are any more of those cancer cells in my body, if there is no estrogen around, they will not grow or spread.

Since I am post-menopausal, most of the estrogen in my body comes from adrenal androgens rather than my ovaries. These androgens are converted into estrogen by an enzyme – the aromatose enzyme – and Femara works by blocking this enzyme.

My problem with all of this is that there must be a reason that my body continues to produce and need estrogen after menopause. Long term effects of blocking estrogen are not known. Of course, the Femara website touts the wonder of the drug with happy-looking women graphics. Just like they did when they prescribed Hormone replacements en masse for women 10 years ago - before they admitted that women who took the drug had increased chance for breast cancer.

But the doctors seem to think that my chance for a recurring cancer outweighs the risks of taking the drug. And they want me to take it for 5 years!

I’m on my 5th day.

The list of side effects is daunting. Hot flashes, sleeplessness, muscle aches, fluid retention, weight gain, fatigue, headache, dizziness, bone fractures, nausea, etc.

I try not to focus on the list because I’m susceptible to psychological suggestion side effects – if you tell me I could get it, I will. But I do feel tired, ach-y, and bloated. My throat is dry and sore. I think that I have bad breath. This is after a few weeks of feeling really good after the mastectomy.

I guess I am feeling a bit depressed of late.

John and I are trying to get away some before my reconstruction surgery on March 12th. We visited Eric in Fort Myers, and are going to Kiawah Island the last week of February. I am hoping that things work out so that we can get to the Southwest in April.

But I’m learning not to make too many plans, rather to be attentive and follow the cues of life as they are given. Something is unfolding. Trying too hard to impose my own agenda screws up the unfolding.

Friday, February 8, 2008

oncotype dx assay results

I passed the test! Or, at least I scored low enough that I was able to convince my oncologist that I could take my chances and forego chemotherapy.

Dr. Bertrand is a tough doctor who aggressively fights cancers. She tends to want to err on the side of “over-treatment”. I am more inclined to trust the integrity of my body with as little drug interference as possible. Without a low score on this test, I would have had a difficult time arguing my case with Dr. B. I think that she must see a lot of people die from cancer.

The test basically says that my chance for a recurrence of the cancer within 10 years is 9%. Chemotherapy would lower that risk to 7%. 2% is not worth it, in my opinion.

She did prescribe an estrogen blocker, Femara. There are some side effects – hot flashes, muscle aches, fatigue, fluid retention … and the long-term safety has not been established. Gee. We’ll see how this goes.

I have tentatively scheduled my breast reconstruction surgery for March 12th, Dr. L’s first available surgical time.

And the good news is that after my appointment with Dr. Rimmer today, I will have no more medical appointments for at least 3 weeks! This is the first time since last October that I have not had 2 or 3 or more doctor things to do in a week.

Wednesday, February 6, 2008

the "test"

Tomorrow I should get the results of the "test” (oncotype DX assay).

It’s funny not having a clue as to how it will come out. The way I see it, I have a 50/50 chance of being in the low risk group and will not need chemotherapy. I read over and over my pathology reports. There are favorable signs – the cancers are estrogen and progesterone responsive, the Ki-67 marker is less than 10%, the S-phase is low. Actually, the only unfavorable sign is the HER2 positive result. And the fact that there were 2 separate cancers in my breast worries me.

But the result of this test will determine the next year of my life, at least. And how I know and trust my body.

I feel like I did before I knew the results of the MRI-guided biopsy that determined whether the “something” that they saw was cancer or not. I was so hoping for it to be nothing because I did not want to lose my breast.

For now, I am thinking positive. Yesterday I had my last injection of “new breast”, and Dr. Lickstein says that I can plan on implant surgery in 3-4 weeks. I’m actually looking forward to surgery! My expander now is every bit as big as my native breast, and I am confident that Dr. L will put me back together well.

And, since John has been laid off, we have decided to make lemonade and go on a 1 month road trip to the Southwest. Just forget everything and go away for awhile. There’s something healing about that for us.

Sunday, February 3, 2008

the health insurance dilemma and other worries

To add yet another wrinkle to this saga, last week my husband was laid off from his job. We got our health insurance through his company. Not only does this make me incredibly mad – John had worked for this company for 11 ½ years, was a dedicated and gifted engineer – it also makes me sad that the bottom line always takes precedence over lives in this country.

Anyway – I guess for the next 30 days we are covered, and after that we are assured by “cobra” that if we pay for it ourselves, we can continue the coverage for another 6 months. I am expecting that the cost will be more than $1000 per month. Gee. We’ve already lost John’s income, so I’m not sure exactly how we are going to manage. I don’t know what happens after 6 months.

Universal Healthcare sure would be nice.

On Thursday I should get the results of the Oncotype DX assay test and know whether or not I am high risk for cancer recurrence. Supposedly 50% of the women who are in my category - early stage cancer, estrogen responsive, and clean lymph nodes – are in the low risk range and do not need chemotherapy. Another 25% are in the high risk range, and the other 25 % are somewhere in the middle.

I guess this means that my odds are good. Last week Dr. Rimmer said that he "would be very surprised if I needed chemo." I keep remembering the day I saw the MRI of my cancer on a computer screen. It looked shiny and bright, like a small diamond.