It's Not Supposed to Happen Like This

In January I was diagnosed with IDC, StageII, Grade 3, Triple Neg. BRCA-1+ breast cancer, 2cm. and .65 cm, right breast. I went ahead and had the lumpectomies and SNB because I didn't want to postpone chemo by having the mastectomies then (and I wanted immediate reconstruction). We got clean margins and all three nodes were clear both by frozen section and histologic exam (celebrations all'round).

I asked for the full-force chemo and got TACx6. Got through that with the usual adventures. Near the end of it, I was having recurrent hip and lumbar pain so had a bone scan that showed no evidence of bony metastasis (more celebrations). I know that with triple negs. metastasis is more likely to soft tissue anyway, but still it was a relief.

After recovering for a reasonable time and getting my blood levels back up, I had my bilat. mastectomies and immediate DIEP & SIEA reconstruction last month. My recovery has been proceeding well. Two weeks after the procedure, I was presented with an "all clear" on the pathology for all tissue removed. Champagne for everyone!

I finally felt cancer free. I felt hit by a truck, but I felt like it was from here that the real moving forward began. I could tell that they had done a lot of removal of breast tissue into the axillary area, because I came out of surgery completely numb in both armpits, rear deltoid areas, and the sensation on the inside of my upper arms is just beginning to return. I have some excess puffiness on the right side (that will go during stage II recon.) that is very tender and irritates me. Of course, I tend to massage that area and generally try to get the discomfort to go away. Then I found a lump.

Now, I've had bilats. I'm not supposed to have to have mammograms any more. I don't have breast tissue, right? No more worries! No more self-exams! But here's this lump. It's half way between my axilla and my breast and it feels exactly like a hard lymph node. It's the size and shape of an elongated kidney bean.

Now, I know these are new breasts made from abdominal tissue. There can be fat necrosis. I feel various textures all over. But this is the size, shape and location for a lymph node and I know anatomy pretty well. What is it doing there and why is it misbehaving? What am I to do? If I see my breast surgeon who did my lumpectomies, he's going to want to take it out (surgeons do surgery, after all). If I see my plastic surgeon (in LA, and I'm not sure I can even get up there right now) I have no idea what he will want to do. I know that sometimes lymph nodes, in the process of doing their given jobs, get swollen and tender (lymphadenopathy, we call it). If that is all this one is doing, why go in there (risking major lymphedema) and mess with it? If indeed it is a recurrence, I'd rather have a PET scan and look to see just exactly where I stand. I belong to a cheap HMO and have had no scans whatsoever, pre- or post- chemo, except for the aforementioned bone scan. Not even a MUGA.

This is not supposed to happen three months out of chemo, not quite one month from bilateral mastectomies. But I know I have an aggressive tumor. My sister's metastasized to her brain, bone and liver within nine months, so I have to recognize it for what it is. OTOH, I am one determined, persistent woman.

I have always been able to find answers to my questions along the way so far. I have found the information I have sought through research and the help of you women here. But I am at a loss now. What do I do? I don't want to do too much, be overly invasive. I mean we don't need to do a node resection for staging or anything - if it's in one, it's a recurrence, period. But I can't 'wait and see', either. There's a PARP study I could get into right quick.

ARRRRGH.

Lisa

Hello friends -

I'm home!

I'm relieved!

Dr. R. first had to admire my new DIEP/SIEA reconstructions, but then he said "You must be here because you have some concerns." Uhm, yeah,

So, I showed him my lump (only about 1" away from the incision he had made for my SNB in Feb.) and expressed that while I was hoping it was nothing, its size and location had me concerned. He agreed, and had me shift position a couple of times so he could better feel the borders. He examined the left axilla, too.

The upshot of it was that he feels 99% sure it is fat necrosis. In one position, he can feel that the ends of the lump extend into a small 'ledge' which he feels represents the terminal border of where they added tissue during reconstruction and this is frequently an area of less-than-ideal blood supply. He recommends doing nothing, looking at it again in a month and if it is giving me trouble, revaluating it for a needle biopsy at that time. He feels that would be overkill at this time, and likely won't be needed AT ALL!

Also, I asked for a copy of my full path. report from the mastectomies. Turns out they did take out another node on the right and even one on the left (inadvertently, as we were going to leave those alone) in their zeal to remove all breat tissue. Full report was clear of any atypia or malignancy.

So, I am feeling good, feeling healthy, ready to have my cranky axillary nerves chill out, ready to heal up and move on.

Thank you all for letting me come over here and have my small panic attack. You were very gracious. I am not one of the Stage II'ers who avoids the mets board. I like to come and read of new treatments kicking cancer-bootay! My sister and dad had mets, it's not some mystery place to me. I could join you next week, who knows. Just not this week, 'kay?

Lisa