still in the woods

Just when I thought I was out of the woods, home free, exercising, getting my life back together …

The pathologies from my mastectomy looked pretty good to me. Small tumors, clean nodes, clear margins. Even Dr. Rimmer said that I had come out on the good side of the numbers, with a 9mm tumor which is 1 mm shy of the size at which they would recommend chemo.

It seems that there are other factors. Like HER2/neu.

HER2 is a protein that promotes the growth of cancer cells. One of every four breast cancers over-produce this protein, which means that the cancer is more aggressive. They think that breast cancers that test positive for HER2/neu are more likely to recur.

I had 2 primary cancers in the breast that was removed. Both were relatively small. The DCIS was more extensive (2.5 cm) but showed small places (1mm) where it was getting out of the duct and becoming invasive (micro-invasion). Both cancer sites tested positive for HER2. The invasive site was less positive (rated 2.something), the DCIS site was more positive (rated 9 something). I don’t have a copy of the report.

If it were not for the HER2 distinction of my cancers, I would definitely not benefit from chemotherapy. As it stands now, it’s unclear whether or not I should be given the drug, Herceptin, which, according to Dr. Bertand, my oncologist, is given with (or as) chemo-therapy. (I still don’t really understand cytotoxic therapy, I’ve been avoiding the topic).

But there is this test - the Oncotype DX assay. It can predict the likelihood of breast cancer recurrence in women with newly diagnosed, early stage invasive breast cancer. That’s me. Oncotype DX also assesses the benefit from chemotherapy.

The test is also very expensive. Like thousands of dollars. Evidently it analyzes the genetic makeup of the cells. Dr. Bertrand says that the results are a good guide to whether or not chemotherapy should be prescribed for people like me. She says that it will help us to decide.

I’m not sure if my insurance will cover it. I have told Dr. Bertrand that if my insurance does not cover it, I am not inclined to pay for it myself. I would rather take my chances and NOT have chemo.

Somehow, I still don’t feel like I have cancer! I feel more like a number on a chart. Maybe all of this radical treatment (mastectomy, chemotherapy) would be easier if I had BIG cancer tumors, or if my lymph nodes were infected with cancer cells and I knew I was in trouble.

Anyway, we’ll see. The test takes 10 days. Dr. Bertrand is going to order it. I have another appointment with her in 2 weeks.

ohmygosh (looking at myself)

Ohmygosh – look at me. That’s my reaction at looking at my chest and the site of my mastectomy surgery, and I don’t make the effort to look. On the one side is this beautiful, soft, natural breast. On the other … scars, bulges of skin, a hard round something (the expander). This is my body? This happened to me?

It’s been a good week, though. For the first time, I am beginning to not actively hurt – though there are still places of soreness. Dr. Lickstein gave me the first injection of “new breast” (saline into the expander) and it was no big deal. I had been expecting the worst. He told me not to worry about the seroma and to get on with exercising my arms. And the seroma does seem to be getting better.

It has been a month since my surgery. Tonight I asked John a lot of questions about what happened on that day of surgery. Funny how little I remember.

I went to an exercise class this morning and it was just wonderful. I was able to pretty much keep up with all the ladies and I left feeling flushed with endorphins. I’m going again Monday. I was able to do most of the arm exercises using low weights.

And I made an appointment with the oncologist for next Thursday. Finally I guess I’ll face the facts about my cancer and what I need to do now.

hurting and healing

I still hurt. I wonder how long it takes to heal. I wonder when this seroma will go away. My mastectomy surgery was 4 weeks ago tomorrow, and it seems I should be further along the in healing than this.

I decided to keep this blog public, because when I search for answers to my questions, like “how long does it take for a mastectomy seroma to heal?” the most I get is research answers. Like: “the study shows that the length of time that drains were left in does not affect the incidence of seromas.”

oncology

I am dragging my feet on going to see the oncologist. My pathology report came back looking pretty good – clean nodes, clean margins, small tumor. According to Dr. Rimmer, the tumor was 1 mm shy of warranting chemo.

So, I’m assuming that I’m relatively safe, as far as cancer goes. And that I am very lucky. I even feel out of place at the breast cancer support group where most all of the women have had to go through chemo. My own cosmetic concerns seem trivial.

One of the reasons I’m dragging my feet is because I want to heal from the surgery. Everything happened so fast before the surgery, and now I like having the freedom to do things on my own time. The other is that I know that she will want to put me on an estrogen-blocking drug, and I don’t like that idea.

But I know that I need to at least argue my case with her.

seroma

The miracle breast is really a “seroma” – a not uncommon complication following mastectomy. During the surgery my skin was lifted from my chest wall to remove the breast and the lymph nodes. Then when the skin was laid back down, there was a “space” between the skin and the chest wall, and it filled with fluid. The drains removed this fluid and then the skin was supposed to re-attach to the chest wall. Except sometimes this doesn’t happen right away. I guess the skin is pretty inflamed and needs some time to heal.

I had my 2nd drain in for 2 weeks. Drains can’t stay in forever. There is risk of infection, and they are so damn gross and uncomfortable. So the doctor had to make a judgement call. When my 2nd drain was removed, the serum continued to fill the “space”, resulting in a blister-like swelling that goes from my back, around under my arm to under my non-breast. It tends to be sore and annoying. Last night I woke up with little shooting pains just under my non-breast.

I still cannot wear a bra of any kind. Thank God (or thank you, Sue) for the little mastectomy camisole that I have been wearing every day for 4 weeks now.

Last Friday (10 days ago), Dr. Rimmer said that my body would reabsorb the seroma in a couple of weeks. Hmmmm. I don’t see it getting any smaller.

On Tuesday I go to Dr. Lickstein for my first injection of “new breast”. I wonder what that will be like, and I wonder what he will say about the seroma.

miracle breast

I am growing a new breast out of my right side. When I asked John to feel it yesterday, he said “oh my”. Who needs plastic surgery?! Perhaps this new miracle breast will give miracle milk!

Seriously, this is probably a build up of fluid that the drain was taking care of and now my body is supposed to somehow reabsorb. I will see what Dr. Rimmer says tomorrow. Dr. Lickstein seems to think that everything looks the way it is supposed to look.

I am still very sore, especially under my arm, and still taking the Tylenol 3 at night. I think it is the codeine that I like because it helps me to sleep better.

When I told Sebastian about my new miracle breast, he asked if I thought I might have a future in the circus. I am thinking more along the lines of the cinnamon bun that looked like Mother Theresa. Perhaps a shrine …

my body

Today I celebrate my body.

Though I am still sore and swollen, and my ears are screw-y (water on the cochlea), once I got the drain out and off the antibiotic, I could sense my own body’s innate integrity for healing kicking in. I find myself glorying in the wonder of this. I smell the air. My body feels like a very good friend, rising to the occasion, glad to be back!