Second guessing myself

kvogler · 11-01-2012, 05:33 PM

Hi all. Had my surgery talk today but I think I need to call him up again. I had a tumor and an affected lymph node. After 6 rounds of chemo and Herceptin, the new PET scan shows no cacner activity at the site or elswhere. Big yay on that! I feel confident with my decision of a masectomy of the affected breast. What's bugging me is the nonaffected breast. I'm BRAC negative otherwise taking the nonaffected would have been a done deal. I'm a younger fighter at 36 so I have longer to have to prevent a second cancer. I'm going to also have radiation after the masectomy and more Hercepting for a year. (Maybe more chemo but oncologist is going to watch how I do.) I feel like I'm being pretty aggressive. The surgeon said I responded very well to the chemo. Part of me does hate the idea of taking off a body part that hasn't betrayed me yet. And I've told myself that I could take the other one off at a later time, that it doesn't have to be done at this surgery. I'm just so confused that I don't know what is right for me in regard to the nonaffected breast. Maybe waiting is better since I'm conflicted. What are your thoughts? Any gals out there that are doing well with just a masectomy of one breast years out? Dang, I wish I had a crystal ball for this sort of decision!! I know it's finally up to me but I don't know how I feel at this point. Ugh.

caya · 11-01-2012, 05:52 PM

I am six years out now - I had a mastectomy only on the affected (right) breast. I too am BRCA negative.

I discussed doing a double mastectomy with both my oncologist and breast surgeon, and they both did not want me to do it. I was stage 1, no affected lymph nodes, and relatively young, 48, at diagnosis. At first I was nervous, but after 5 years of a breast MRI and a mammo alternating every six months, plus the physical exams, I mellowed, and hardly think of it now. I have a mammo once/year, no longer need a breast MRI because my breast density is lower now.

all the best
caya

dchips1 · 11-01-2012, 09:09 PM

I was diagnosed at 37 but I was stage 4 after surgery.
i only had a left mastectomy. I was never a bra fan to begin with 36A/B unless I was nursing my kids then I was a full B. If I knew know what I didn't know then, I would have done a bilateral. So when I did not wear a bra like most days I wouldn't worry so much, about the shirt i was wearing. Bras because of surgery side and my port just irritate me too much. So When I need to get dressed up then I wear one with the form.
The other downside of not wearing a bra is the muscles around the remaining breast sometimes cause pain. I hate mammograms, I am smaller and they have to really pull and tug. I am not sure if my husband would have agreed with me about doing a bilateral at the time, but now I don't think it would have mattered.

It is your body, and your choice. You have to decide some people it makes a big difference to them, others just want less worry and appointments

Good Luck and prayers for your decision, that it is what you feel good about doing for you not anyone else.
Darita

Jackie07 · 11-02-2012, 06:51 AM

Darita said it so well - I'm dittoing her advice...

snolan · 11-02-2012, 07:44 AM

Its a hard dission but what ever your gut is telling you go with that. Like you said you can do the other side later if you want. I chose to do both based on I didn't want to have to worry about the other side. Plus after reconstruction both sides match much better. Its a drag that we have to worry about this on top of everything else. Hope all goes well.
Suzanne

yanyan · 11-02-2012, 12:21 PM

If you are considering reconstruction, a double would make it easier for both breasts to match; you won't keep worrying about the other breast and going through constant MRIs or Mamagrams; You will lose the sensation though. Other than that, a double isn't hard to deal with for me.

Debbie L. · 11-04-2012, 10:24 AM

KV, there is no single right way to do this. Everyone has already made good points about what to consider.

I would only add a few things, to be sure you understand your situation. Although a second cancer in the other breast would certainly be no fun, it would probably not change your odds as far as survival. The same goes for mastectomy vs. lumpectomy (equal survival). The other piece of this, as you've said, is that the younger you are, the longer you have to live with the remaining breast tissue, which means a lot of surveillance and a somewhat higher risk.

So that leaves the decisions facing you to be all about what fits best with your desires and your comfort levels. Remember that you can take time to consider your options, and should not feel rushed into making these decisions.

If the idea of a second surgery (to remove the unaffected breast) doesn't bother you, then waiting to make that decision until later would be fine. But if you're sure you'd like bilateral mastectomies, it's a lot easier and more efficient to do them together, especially if you're considering immediate reconstruction.

On the other hand, if you're thinking about delayed reconstruction, then you could make a good case for waiting and deciding about the other breast at that point. Or maybe you're not interested in reconstruction. So many options! No wonder you're conflicted.

I should have said this first -- BIG yay on the complete clinical response to chemo.

Keep talking this through, it can help to sort it out.

Debbie Laxague

roz123 · 11-04-2012, 11:03 AM

hi there
this is a reallytough decision, one that i struggled with. I actually made the decision to do prophy bilateral msx after I completed all treatment. I wanted to wait to make sure that I was not making the decision based on fear and not on facts. The facts are that msx or lump plus rads are the same in terms of survival. The reasons I made the decisions (and these are personal ones)
1. I am young aswell (43) and figure I haven't even hit my high risk BC years so I want to reduce my risk of a new breast cancer
2. Doctors have told me my risk for a new primary is 20% - which may or may not seem high to some but I only had a 3% risk factor for getting BC at my age in the first place (zero family history, no risk factors other than dense breasts) so to me that number seems really high
3. Being her2, even if i was watched really closely on the remaining healthy breast and a new cancer was discovered, unless it was dcis or extremely tiny (under 3mm) then I would get chemo again.
I would speak to your doctors about what your lifetime risk is of getting a new primary, that may or may not help your decision. Like the others have said you can wait if you have any doubts and do the other side at a later date once you have had more time to think about it.