(Note -- originally I wasn’t going to mention actual hospital names…privacy reasons or whatever. But once again I open the book of my life a little more, in case someone reading this ever needs this info -- eventually I'll come back and include actual doc names. I feel like I'm leaving a trail of breadcrumbs.)
I am very sad, and feel like I’ve been hit by a truck. I really like this doctor, I mean, she was by miles the best so far. And I might as well mention, she was also from Sloan Kettering, so there’s a reputation behind her too. She was warm, personable, and compassionate -- and more importantly seemed highly knowledgeable, thorough and distinctly well informed. That’s why what she told me made me so sad.
She said I need a mastectomy.
When pushed, when I asked her if she would refuse to do a lumpectomy/quandrantectomy on me as 2nd surgeon said he would, she said that she in fact would be unwilling to do it...she said it nicely, but she said it.
According to her, although the chances of survival are the same for lumpectomy, quadrantectomy and mastectomy, the chance of local reoccurrence would be 20% without a mastectomy. That means that the cancer could come back but that it would be confined to the same breast (btw, a chance of my other breast ever having cancer at some point in my life exists, but it’s like 10% or less).
Now, she said I could be vigilant, get my mammograms and other testing to catch a reoccurrence early, etc. But that because I am so young & pre-menopausal she would rather see me eliminate any odds of it coming back. She said, “You have young children, a nice husband and a good life, I want you to have a nice long time with all of that.”
She also feels that breastfeeding in a sense contributed to why my lumps are multiple and far apart. Let me be clear, breastfeeding didn't give me cancer, my body did that for unknown reasons. But that it did so during lactation has perhaps worked against me. Since my milk ducts are in effect “open” things may have been able to travel easier. I am dubious about that part since breastfeeding is supposed to protect you from cancer for almost the same reasons.
Anyway, she believes there is a good chance that in between these two lumps the duct may have more cancerous cells in situ, meaning still in the duct (not invasive like my lumps themselves are). Because of this she thinks that they’d have to take more than a quarter of my breast anyway. Oh, and in her opinion one of the tumors is close enough to my nipple that it would have to go in a quandrantectomy too. She was clear – a mastectomy is the way to go. I am a good candidate for a “skin sparing” one with reconstruction.
She agreed that I might not need chemo, but she couldn’t say definitively of course until the tumors are out and they do a sentinel node biopsy. She did say they are more likely to do chemo in younger, healthy women like me. Aren’t I lucky.
As to my lymph nodes…each and every doctor has felt me up quite thoroughly and none have found any swollen nodes. I knew this was good, but didn’t put much stock in it because it’s just a human hand, not a diagnostic test. But she said she is fairly confident that my nodes will be clear after biopsy – something that was GREAT to hear. That means the cancer wouldn’t have spread anywhere else in my body. It means I probably get to live a long time. I am trying really hard to embrace that as the main point here.
So to sum it up:
Surgeon #3 -- Sloan Kettering: Mastectomy, maybe chemo post-op, no radiation and she thinks my nodes will be clear and I’ll be BRCA negative (the genetic counselors think that too, btw). I like her. She said I could probably wait to do post surgery hormone treatments and breast feed for 6mos or so, assuming no chemo. (which I’ll post about another time, it’s not really ideal)
Surgeon #2 – New York Univ Hosp: Used the word Lumpectomy, didn’t address chemo other than to scoff at my pre-op question, didn’t think I’d need a plastic surgery consult even tho it would be a rather large “Lumpectomy” (though I would have gotten one anyway). Radiation was not definitive to my recollection. Didn’t like him much, didn’t hate him, but didn’t feel totally trustable.
Surgeon #3 – Englewood Hosp, NJ: Said chemo definitively, maybe pre-op, said Mastectomy definitively, wanted to dry up my breast milk with a drug that would be dangerous to me and was an all around jerk. NO WAY.
Medical oncologist #1 – Englewood Hosp, NJ: Agreed a lumpectomy of sorts could be possible, thou he’s not a surgeon…he said it would be more like a quandrantectomy. He said radiation without mastectomy, but maybe no chemo. I generally liked him.
I have one more medical oncologist appt already scheduled; it’s at my local hospital.
A couple wonderful people on a message board I frequent (the Weightwatchers Veggie Board aka VB) have given me some local doc names, we’ve been making phone calls.
Two out of three surgeons so far say Mastectomy. I should probably just face that, and maybe I will. But I can’t help feel in my gut that I need to hear it again from at least another doctor I trust before I quit trying to save my breast.
I feel less hopeful about avoiding an ordeal, and that scares me. In fact, I feel pretty damn down. I do feel grateful that my life seems so far not to be in imminent danger and am trying to focus on that. When I think of my kids that’s easy, it’s all there is. But when I look in the mirror…not so much. Someday my kids won’t be the sole focus of my life, I do know that somewhere in back of my present “mommy-brain”…so how will I feel about my body then, when it’s just me (and Michael)? This is the hardest thing I’ve ever had to decide. How do you do this??? Have I done enough to be able to figure this out?
PS: since completing the writing of this I have an appt TODAY with another doc at NYU hospital -- in fact I'm hitting publish and walking out the door. Will post again tomorow with news.
Love & gratitude beyond words to all....