Just Diagnosed With IBC, need advice

bride · January 2014

Bon, you're right and I knew that. But this woman, the freaking head of OC surgery, at least from what I've been able to learn, has spent most of her life dreaming up ways to "preserve the breast." And like most surgeons, she has an ego. Fortunately, so do I. <grin> But having initials to flail her with is really cool -- and very sweet of you.

In hindsight, I think her inability to perceive that anyone might assume they had the right to decide on treatment options was so out of step with the rest of the staff's attitudes that it flummoxed me. I had just spent 90 minutes with one of the most helpful and resourceful docs, my radiologist, and had gone into inquiry mode. Then comes this "I've been cited by US News and World Report as One of the Best" superdoc and bulldozed me. Ha, I didn't examine all those PhD candidates for 30 years without learning how to look pretty fierce myself (LOL).

Right now I'm pretty angry and am thinking I'll either switch surgeons (superdoc can assist) or start asking why she has such a breast fetish. I mean, I'm gay and she's made sure I knew she wasn't. My partner says glands is glands and that she's not with me cause I have them. And I doubt that 9 years after menopause my breasts will miraculously produce milk. Nasty superdoc even insisted that I had mets cause 3 lymph nodes are involved. Grrr.

Bon, I needed to have you articulate what you did because, honestly, until I was told I had IBC, I'd never heard of it. I know I'm not stupid but I'm still trying to learn about IBC and its treatments, and, lagging far behind, getting my emotions caught up with my new reality. That's hard. Having someone who is more centered than I am validate me feelings is a real comfort.

ox bride

Anonymous · January 2014

Wow Bride,not sure what this doc is thinking. I only had the unilateral mastectomy but that was my choice but I feel sure it I wanted a bilateral my surgeon would have accomodated. I go back and forth on having had the unilateral but more lately I wish I had had the bilateral even though its not necessary for IBC like it is for ILC.

I really don't mind being lopsided. I don't wear a bra at home but its no big deal to put on the bra/prosthesis if someone stops by. It only takes a minute.

I do mind that EVERY year I have to have a mammogram though. This is the reason I wish I had had a bilateral. I had fibrocystic lumps before diagnosis so every time they see a cyst in the breast, I automatically have to go from a one year follow up to coming back every six months until they are satisfied it is just a benign cyst. I know they could do a stereotactic biopsy but that is an even bigger deal.

So in hindsight, I wish I had done a bilateral

Anonymous · January 2014

One other thing to add: there is nothing wrong with getting a second or third opinion until you are satisfied you have all the facts you need to make a choice. AND T^{he choice is YOURS. It's your body.}

Anonymous · January 2014

Hi Bon, I'm not familiar with the lady you mentioned but I can certainly understand what you are saying. Breast cancer is such a unique journey for each and everyone of us and there is no 'one size fits all'. Each of us should decide on what is right for 'YOU' and you alone.

I didn't have a lot of pain except for those darn annoying drains. So relieved when I could finally get those things yanked! I did have the axillary web syndrome for a few weeks and couldn't straighten my arm and I also had the winged scapula that also resolved fairly quickly.

My biggest surprise with the mastectomy was finding a crater the size of the Grand Canyon in my armpit where they took the lymph nodes. LOL! Not sure what I expected but not that.

Just to be clear for all, my journey is MY journey and my decisions are MY decisions I made for ME. That doesn't mean that anyone else's decisions/choices are right or wrong if they don't match mine, Everyone must find their own path and enjoy the fellowship of the others who are also on a BC journey whether their choices are the same or different.

I enjoy reading what others chose to do.

positivenegative · January 2014

bon you make me laugh i pm'd you. bride i wish you luck in finding hat is right for you at this moment in time. wellcome to ibc. this is a ggreat group to be in. you are special as we all are.

bride · January 2014

Bon, AlwaysHope, and Positiveneg,

Thank you all! Your replies reinforced what I thought. Superdoc has all the right bits of paper to back up her claim to be a superdoc. She's been an oncologist specializing in breast surgery for almost 30 years. But her thing is "saving the breast." And she has a huge ego. I honestly don't care about saving anything -- I want to beat my IBC. Everything I've read, combined with my radiologist said about not wanting a skin expander messing with the radiation, suggests that reconstruction isn't the best choice with IBC. Since I'm lucky enough to be treated at Emory which is a national cancer institute, I do have my choice of several surgeons.

Bon, it's a small world: I went to grad school at Hopkins. Although I'm a historian, I became very familiar with the medical side of JHU because every time I went to student health with the sniffles, I'd be roped into some weirdness at the hospital. One time, student health noticed I had low ( but normal) blood pressure. Next thing I knew, I was being spun in a pod full of strobe lights, flung about on a tilt table, and being examined by a small army of residents. I never minded any of that because I knew docs needed people to train on. And JHU does produce damn good docs.

The reason I want a bi-lateral is that nobody can explain why all the factors that caused my IBC don't put me at a much higher risk for developing it in my other breast. Plus I have mild scoliosis and being unbalanced will (according to my other docs) make that worse. And to be honest, the idea of different bits of me being used to make a breast and then having a nipple tattooed on just grosses me out.

I see my oncologist on Wed, before my next chemo, and am going to request some answers. Since she's explained everything and been very honest, I trust her. I'll let you all know her response ASAP.

I truly appreciate all the support -- I'd be lost without it.

{{{Hugs}}} to all of you!

bride

Just Diagnosed With IBC, need advice

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