Difficult decision

[DancerDonna]

I have a really difficult decision to make. I will have surgery for my second tumor in my left breast in early Sept. Both tumors have been HER2 +. I developed lymphedema in my left arm and hand after a breast infection, although I had only lost 3 nodes in a sentinel node biopsy. I will have a unilateral mastectomy with immediate DIEP reconstruction.
I am negative for BRCA, but am being tested next for BART, a rare mutation. If that is positive, I’ll instead have bilateral mastectomy with DIEP. The doc will attempt sentinel node biopsy and we will hope and pray that either the dye or radioactive substance moves since my breast has been through surgery, chemo, radiation, infection, and lymphedema.
The difficulty is my decision in what to tell the doc to do if sentinel node biopsy fails. He could remove no nodes, all the level 1 nodes, or all the level 1 and 2—an axillary dissection. Three other surgeons I saw proposed removing two or three nodes and sending them to the lab for freezing and slide making, if sentinel node dissection failed. This doctor, in the same city as the DIEP doc, says that would be a shot in the dark and he doesn’t want to do that.
If I have a positive node that is not identified, I won’t get to take more chemo. Unless the tumor is larger than is thought from the biopsy.
About six weeks after my lymphedema diagnosis, I met a woman who had an arm like an elephant leg. I still have nightmares about that. So I am afraid of my lymphedema getting worse, and the more nodes are removed, the greater that risk. But I am also afraid of cancer, and would hate to miss out on getting more chemo and probably more herceptin if I have one or more positive nodes not found.
Right now, it seems like it might be the most difficult decision I’ve ever had to make. Anyone have any words of wisdom?

[jhandley]

Hi
I wouldn't worry too much about lymphodema..just make the decision based on what is best medically for you.
Cheers
Jackie (down under)

[tricia keegan]

I'd agree, lymphedema can be awful of course but sucessfully managed where as cancer would be the biggest foe!

Good luck with your decision

[Pam P]

I agree - go with the best decision for cancer treatment. You can manage the lymphedema with many different techniques.

[Chris B.]

Just some info. I had 17 lymph nodes removed 3 years ago that were all cancer. I have very slight swelling in my right arm, but no pain or lack of movement. So far so good for the lymphadema.

[Sandra in GA]

I feel the anxiety you are going through at this time. After having 21 lymph nodes removed from my left side during a double mastectomy, I had a terrible fear of developing lympadema. This was made worse by the fact that I have very limited use of my right are because I had Polio as an infant and my upper right arm muscles have atrophied.

When I went for my first visit with my radiation oncologist, the first thing out of her resident's mouth was, "Radiation can increase your chance of developing lymphadema by 30%."

I almost made the decision to forego the radiation treatment, but after doing extensive research, asking the radiologist a long list of questions, and praying a whole lot, I decided that with 21 positive nodes and decreasing the recurrance rate to the local region by 50%, I could not NOT have it.

I did have some swelling, but that has been contained with massages the PT taught my husband and a compression sleeve. Now, two years out, I am NED and my arm is fine.

I know this decision is hard. However, the others who have posted have urged you to think about the best decision for the cancer management. I am glad that I did.

Sandra

[DancerDonna]

I saw my oncologist yesterday and he strongly recommends against any more lymph nodes removed unless there is successful sentinel node biopsy or if it fails, if there are any nodes that are different from the others as seen or felt: bigger, harder, dimpled, or different-looking.

It was disconcerting, thought, that my oncologist didn't remember that my second cancer is HER2 + just like my first, and also is struggling with his netbook trying to access documents. Twice, he said "IF this tumor is HER2neu +," and I kept saying, "But we KNOW that it is." There was enough from the biopsy for the lab to determine that.

Now I'm trying to find research on the best injection sites for both blue dye and radioactive substance for best identifying the sentinel node in repeat SNB. I'm not finding much, so far. So I had an idea a few minutes ago. Since Dr. Guliano developed the technique for breast cancer, maybe I can find how they're doing the injections at St. Johns in Santa Monica.

I didn't ask all the docs we saw; our questions have kept evolving as we've seen different doctors. The last doctor we saw, a surgical oncologist I was referred to by the plastic surgeon after becoming so frustrated with the breast surgeon he works with most often for DIEP, told us that he injects the radioactive substance into the nipple the afternoon before and then the blue dye into the tumor site.

I found out that the breast surgeon who operated on me five years ago always injects both into the nipple. I think the sentinel node was probably easy to find on me five years ago, before surgery, chemo, radiation, a severe breast infection, and lymphedema. The surgical oncologist said he did that hoping that one of them will show the sentinel node.

I found out today that my surgery date was changed from the date I was told when I saw the plastic surgeon. I was told by the PS's office that they were blocking out Sept. 8 because he was booked thru the first week of Sept. Then Monday is Labor Day, Tuesday his one office day, so Wed. the 8th the next day. I was disappointed I couldn't have surgery right after today because I had my third and last spinal steroid injection today. He is popular since he does SIEA, DIEP, GAP, and TUG and he seems to be one of the few docs who does in the southeast.

I saw the breast surgeon four days later than the PS and spoke of the date, tentative only because of waiting on insurance to consider the hospital in-network. I have brought up the date when I've talked to both offices by phone. Anyway, when I called today to alert the PS's office that BART testing was started on my blood yesterday (I was negative for BRCA) and asked the time of my Sept. 8 surgery, the nurse went into some office to check and then gave me a time for Sept. 10. I was shocked and asked if they ever planned to tell me they'd changed the date.

I found out it's because the breast surgeon does something different on Wed., checking on patients, I was told. But it's not an office day for patients to have appointments; however, she also does paperwork on Wed. Apparently, the PS's office still didn't know that or else thought she sometimes operated on Wed. But they changed the date and forgot to tell me.

The surgical oncologist, who was available on Sept. 8, stayed late and talked with us past 6:30 last Thursday. So did three women who work for him. I could tell his nurse was more than a little peeved when I called them as soon as I found out about the changed date. Turns out he is already booked for Sept. 10. So I guess my surgery will be with the breast surgeon.

I talked to her nurse who stays in the office and of course, no one else has ever asked about injection sites. She was answering, "the breast." She tried to find out from a nurse who was supposed to ask a radiologist. The answer she got was a site half-way between the tumor site and where my first nodes were removed from, the armpit. That surprised me, not a site I've read about. I don't know if that's really where she injects though.

The breast surgeon did try to call me, I found out when I'd logged onto my school system's email. I had specified to her nurse that I was at home, so of course, she called me at school. Which never works very well because I'm usually not in my office when I am at school.

So my next mission is to try to find out the best location or locations for injection of both dye and radioactive substance (highest success rates for repeat sentinel node biopsy) and try to get the surgeon to agree. Although it makes me a little nervous if I am her first for injection into the tumor site.

If you are aware of any relevant research or have any ideas, please post them.

DancerDonna

[Jackie07]

DancerDonna,

Haven't seen any postings by you lately. How did your surgery go?