Help Me Parse This Out, Please

Octobergirl · May 2014

I'm just past 5 yrs. out from surgery and continue to struggle with the after effects of treatment and letrozole side effects despite my determination to move beyond a constant focus on cancer in my life. I've also had 2 Birads 4a MRI results at Duke in my right breast...my cancer was in my left breast...resulting in 1 benign biopsy and 1 repeat MRI at Moffitt Ctr. that was read as a Birads 3 recommendation to have a 3rd MRI in 6 mths. That's where I stand today.

I know there is a real question how long the Letrozole will be effective to prevent recurrence, especially since I had a high Ki-67 score, 63% (just learned this at Moffitt and wondering what else don't I know since Duke didn't let me know about my Oct. MRI results until March when I happened to find it posted to my online patient record. Sideline rant: why are these oncologists so much less interested in talking about long term follow up and prevention of recurrence than about a diagnosis and treatment?)

Anyway, I'm so weary of the abnormal results/biopsies long cycle that preceded my cancer diagnosis and continues after.....I feel like I've chased my tail around the tree for yrs. now. I have relatively large, extremely dense breasts that were once my friends but now only exacerbate the problem. I'm wondering if anyone here has considered a bilateral mastectomy or even significant breast reduction to reduce the breast cells that spawn these inflammatory/fibroid issues as well as produce circulating estrogen cells postmenopausally (is that even a word?) that feed recurrence??? Can that significantly lessen the endless appts., tests, murky results and second guessing? Am I crazy to be looking for an answer when I know the larger risk for recurrence is distant metastisis from the positive nodes?

I haven't posted much lately but lurk often. My best wishes to all my stage 3 sisters who stand together with exquisite hope, courage and humor (Weesa!) in the face of the largely uncharted journey of stage 3 "survivorship"!

October

Tomboy · May 2014

Octobergirl, a resounding YES! to your questions! i am nearing two years, and have so many problems with my nodes, and swellings and bumps and biopsies, that i am pretty much heartily sick of it. i am keeping the thought in my mind, that at the first sign of real trouble, off with em! And i am also pretty sure that i would choose no recon, because i love my muscles, which were and are tramautised by treatments, and i for sure do not want to interupt anymore lymphatic pathways. for now, since i already got dosed with radiation, i will keep her, but she hurts me and ithes quite insanely, almost every day.... And i am not too fond of so many doctors, either. i never saw them before my DX, but for sure am glad to have found BCO. i have learned so much here.

about the survivorship, i think they are just now starting to get really interested in that.

i am 5 years past meno at least, and high k167, and strongly estogen positive, and i completely dislike letrazole, but fear a recurrance even more. there may come a day, when i may tell the drs enough with the follo-ups, and goodbye.

Amoc1973 · May 2014

I contemplate BmX. I had lumpectomy. I already had implants & they held up well. But if u decide to do a mastectomy on the non cancer breast u can do an immediate recon w just an implant since no radiation. I have a friend who did this. Her boobs look fab! Since prophylactic she kept nipple & skin. U really cannot tell. Now....if you have rads then implants fail a lot (but not always). I understand why people choose to do that...no more mammos& biopsies and constant worrying. If I see anything on my non cancer side then I'm gonna do BMX. You're rt. It doesn't affect survival w this breast ca. But it's poss to have a NEW cancer on the other side (although I don't think chances are super high but more than a person who never had breast ca). If I started to have to have multiple biopsy I would def be like "F this!". Talk to your onc. Do whats rt for you.

TectonicShift · May 2014

I has unilateral MX at diagnosis. I cannot wait until I can have the other breast removed. (Still on some treatments so I have to wait until I finish.)

Who needs the aggravation of worrying about more cancer in the other breast?

I know the risk of distant mets from the cancer I already had is much much much much greater than the risk of more cancer in the other breast, but I can't wait to be uniformly flat, and to not have to have mammograms anymore.

peacestrength · May 2014

I don't regret having a BMX. I had large, dense breast and didn't want to deal with mammos missing bc again. I do miss natural curves at times though and allow myself room if I ever opt for reconstruction.

Momine · May 2014

I had BMX at the get-go. The thought of endless mammos, MRIs and biopsies made me completely exhausted. I had to have MX on the sick breast anyway, so I figured I might as well raze the rack while I was at it. No regrets.

clariceak · May 2014

I had a BMX which my breast surgeon tried to discourage. She said, "we can catch it early." What an ignorant statement to make. I also had dense breasts and lived in small town which was 800 miles away from a quality center with digital equipment. I also knew my greatest threat was not from a new primary, but rather mets.

Also, it just seemed right for aesthetic reasons. I would rather be flat than have one breast, but that's just me.

Jmo06 · August 2014

can you recommend any drs at moffitt

Octobergirl · August 2014

Hi Jm, i'm sorry but I can't recommend a dr. at Moffitt. The dr. I was referred to last winter is no longer there. Not sure what I'll do or who I'll see if I need to go back this winter when I'm in Fl. Does anyone else have info re Moffitt?

Help Me Parse This Out, Please

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