My Introduction to your community

puddingirl84

Hello Ladies.
I have finally joined you. I have been straddling the fence for a couple of years, but now I feel it's time to share and learn.

I'll tell you a little about myself and what lead me here. 

The biopsies started in March of 2000. First the right breast then the left. Every year something. Biopsies benign. I never read a pathology report then. Didn't know what atypical hyperplasia was or papilloma, or calcifications. Findings were never discussed with me by my surgeon. I just figured I didn't have cancer and life was good.

I guess the most serious of all the "benign" biopsies was in February of 2004. I had been lactating for the last three years, just on the left side. (Both my children are grown) I had just started a relationship and it started to become embarrassing. I had to use another breast surgeon because my own breast surgeon had to leave the country for a family emergency. I went for my follow-up and she mentioned to me that I would eventually get cancer in my left breast and to stay on top of changes in my breasts. She even suggested I join a clinical trial. It was a retro-areolar mass, with papilloma and atypical hyperplasia. I thought she was a radical and dismissed her. I thought she was knife-happy. I was happy to hurry up and get out of her office. That "C" word frightened the dickens out of me!

Fast-forward to 2005:
I was about three or four months overdue for my mammogram because I was still frightened from that 2004 experience. I tried to bury my head in the sand.

I found a lump in my left breast again and my surgeon noticed skin thickening on my right breast. The lump in my left breast was benign.

1st Dx: A cluster of micro-calcifications seen on mammography; IDC right breast, May 2005, .82cm, Er+/Pr+ Her2-, Stage1, neg. nodes, grade3, 35 days of radiation, and Arimidex.

2nd Dx: I discovered lump during SBE; IDC left breast, November 2006, 1.8cm, Stage1, neg. nodes, Er-/Pr-, her2-, grade3, 4 rounds of A/C regimen and 35 days of radiation. All scans were clear.

3rd Dx: discovered during routine office exam by medical oncologist; left breast November 23rd 2009, final pathology and staging still pending. All scans are clear.
 
I had the BRCA test in 2007 and it is negative. No family history of BC. But I really don't know because some died so young of other ailments.

Age at 1st diagnosis was 55.
 
Have been getting mammograms every six months since 2nd DX.
In July and August of 2008 I had stereotactic biopsies in each breast. Abnormal mammogram, benign pathology.

I think I need to have a bilateral mastectomy. The left breast absolutely and the right breast removed prophylactically.
I am in a state of constant worry and panic because I can't decide on immediate reconstruction or to just wait until after chemo. I don't know what kind of chemo I am getting this time, because we are still waiting for results of third cancer pathology. (3rd primary or recurrence) I am already having a second shingles outbreak in a month. I know it's because of the stress.

I have seen two plastic surgeons to discuss my options for reconstruction and I am not happy with any of them. I was leaning towards lattisimus dorsi flap, but I cannot see sacrificing TWO big healthy back muscles for two breasts, and from what I have read on your discussion boards, there are a lot of complaints about tightness around the trunk and back weakness. I live alone and I am very physical and independent. I garden. I climb ladders to change floodlights. I rake leaves and bag. The thought of becoming weak and frail because of reconstruction just frightens me. There are enough side effects from the AI I am taking daily. I am starting to show some mild bone loss. I'm taking Actonel, 50,000IU of Vitamin D, and Citrical. I can still lift a 6 quart pot of water to boil spaghetti, and take a turkey out of the oven.

I don't want the free-flap because of fear of tissue becoming necrotic. I have also heard horror stories about the Tram. After two years post-op some women still have trouble getting out of bed and standing up straight. Because I don't have a lot of body fat both plastic surgeons said I would need implants for reconstruction and that I was not a good candidate for expanders because of radiation on both sides.

I am also terrified by the thought of looking at myself in the mirror if I don't have reconstruction at all. I am also extremely depressed and I feel very isolated.

This is why I joined your community.

mke

I'm sorry you have to be here, wish no one had to be.

I've had 3 rounds of BC too. At least the first 2 were independent primaries and by the 3rd I wasn't interested anymore.  I opted for a bilateral without reconstruction a couple years ago when I was 61.  I don't particularly like the look of my scarred chest, but I don't have to look at it often.  Everyone makes their own choice with this, but for me at that point in my life, having breasts just didn't matter enough for any additional surgery.  Actually although it would be covered by insurance I still haven't gotten around to getting any prostheses.  I do work with the public but no one seems to notice or care if they do notice.

Having had lumpectomies and axial node dissection on both sides and then again with the mastectomy I was much more concerned about lymphedema.  So far I haven't had any problems, but I am careful.  I have full range of motion, I can do everything I could do before the mastectomy, including hoisting and basting a turkey a few days ago.

I suppose there are probably horror stories about any choice, and the pros and cons are weighed differently for every woman.  My choice worked well for me and there are lots of women who are thrilled with their reconstruction.  Don't put pressure on yourself, take your time.

puddingirl84

mke-and everyone. Hi there. It has been a while since I posted. I had a bi-lat mast on 1-25-10. Opted to delay recon. Very happy I made that decision. Because recovery is Hell!!!!! Drains, plugs, tubes, pain. Recon would have meant more drains and I honestly don't know how I would have managed them. Could barely manage the ones I came home with. This is my 3rd bout the first two being separate primaries and the third a recurrence of the second. I finally got around to looking at my chest. I'm not that comfortable with it yet, but it is not as bad as I thought it would be. I will still be able to wear most of my scooped necklines. I honestly don't know if I will subject myself to anymore surgery for recon in the future. I still have chemo to look forward to. It's seems funny to me but it's the women in my life that are trying to push me to do it. They need to walk in my shoes for a minute!!

It feels good to be writing again. 

Pudding 

nancyluvspink

Hi - Hope this post finds you recovering well.  It is a rough road you are on.  I have had bc twice and I have a laundry list of all the surgeries I have been through.  I hated the drains sooo bad.  Hang in there.  Just take care of yourself and I pray for a speedy recovery.   Nancy