Aromatose inhibitors/ mastectomy w/ diep flap reconstruction

Posted by sandyjr @sandyjr, Aug 16 11:02am

This post is threefold. First, I am currently taking anastrozole. I had IDC in 2018 and have been taking it since. I had DCIS in 2007 and took tamoxifen. I found that I have the CHEK2 genetic mutation, so just has bilateral mastectomy with diep flap reconstruction. I have not been back to the oncologist yet, but would like your input. Do I still need to take the anastrozole? Second, I did not realize that anastrozole can cause cognitive problems until I read it on here. I have no physical problems with the medicine, but seem to be having cognitive issues. I just attributed it to the extreme stress (possibly ptsd) I had from having a second cancer that was missed 2 times on MRIs. I was a mess. Third, I just saw the breast surgeon that did my mastectomies. She told me that I should see her in 6 months and then on a regular basis and that I will possibly need mamos and MRIs. WTH!? The reason I had the mastectomies was so I would not need to do that. She says I need a breast exam every year. My oncologist can do that. Quite frankly, I am doctored out. It seems all I do is go to the doctor and I am sick of it. The plastic surgeon that did the reconstruction says I will be done with him as soon as I get my tattooed nipples in a couple of months. I am having a slow ( my opinion) recovering from that surgery…10 hours total. The doctors say I am doing fine but I would like to see how others have handled it. I am 70, but very fit and independent. Opinions and input are appreciated.

Liked by trixie1313

@sandyjr
Prior to my second surgery, was told that even with mastectomies, there is still some breast tissue in the area as they cannot take it all out which is why the breast surgeon advised you to have the checks. When you do go for your mammogram, ask the tech to not use the foot pedal, but to roll the equipment down by hand – it makes this test much easier on sensitive skin. As per the anastrozole, I tried that first, then went to letrozole, and have found exemestane is the most tolerable and with this one I don't seem to have the brain fuzz. So talk with your oncologist about trying other AIs to see which works best for you. About the only side effect I seem to have are "heat bombs." I went through surgical menopause at age 44 and this is totally different from that…pure heat, but it is tolerable. All the best to you.

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I cannot address your concern about anastrozole. I can say having a DIEP flap can be a long recovery. I only had a DIEP flap done on one side but had wound healing issues which took three months to resolve. I know I need at least one more surgery to “tweak” things such as a lift, scar revision, revise “dog ears” and remove fat necrosis. This is normal to need to go back for tweaking. I am 66 and active and independent so have returned to activities( kayaking, tai chi, paddle boarding). Yes, the doctor visits are tedious but slow down eventually! As for yearly breast exams by an MD, go for it! Ask your oncologist about MRI. Hang in there, you had major surgery. Things will get back to normal some day!

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@sandyjr
I empathize with your frustrations regarding anastrozol, the constant testing, and seeing doctors repeatedly. Regrettably, we also are cancer survivors, and those things come with the territory. All our efforts do not guarantee a cancer-free survival (not even mastectomy); they only lower the risk of recurrence or catch recurrence early.

Getting breast cancer is an "involuntary lifequake," but addressing the issue of recurrence is a voluntary decision. Your oncologist has prescribed an aromatase inhibitor which often comes with side effects. It also lowers your risk of recurrence. Having frequest breast exams, mammograms and/or MRIs are a nuisance, but they also catch recurrence early before it spreads more widely. Exercising and eating sensibly contributes to a healthy brain and body in general. No one is holding a gun to our heads on these treatment options, however.

Being a cancer survivor is a lot like living in this age of the Covid-19 pandemic. We know that people are dying from it or having serious issues surviving it. There also are voluntary (and not guaranteed) things which we can do to help prevent catching it: wearing a mask, social-distancing, avoiding crowds, frequent handwashing, etc. One day, we hope to have a coronavirus vaccine; one day, we also hope to be able to cure cancer totally; but until "one day" arrives, we can only voluntarily do what are the best treatment options presented to us.

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To @sandyjr. I had a bilateral mastectomy 11 years ago and did the flap surgery. 11 hours and
Recovery was hell. But am glad I did it. I did not get the ratio nipples. Was on tamoxifen and then went to anastrazole which was horrible for me. Just started letrozole but had brain fog in the beginning so I went off of it. Back on it now but only taking Three days a week. There was a study done a few years back with mayo and university of Arizona about reducing The dosage of the letrozole. It’s a struggle, but with Mets already to my bones it’s worth it. Hope this helps

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I have no regrets on the mastectomy/diep flap reconstruction either. I can’t say recovery is difficult. I had a horrible headache when I came out of the anesthesia but I’ve had very little pain and no problems. The only thing I can say is that I have been extremely tired. I feel like I’m getting my strength back but I am being very careful about what I do so as not to cause a problem.

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