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: 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 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 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 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. 

 

3katz

Puddingirl - while I'm very sorry you are a member of this club, you have come to the right place. The people on this site are so very helpful and supportive. Wow! You have been through quite an ordeal! If you are unsure about reconstruction - wait. You can have it done anytime - it doesn't have to be done immediately. That way you can have time to weigh all the options. I know . . . it would be easier to get it all done at once. But masts & recons are extremely long surgeries - what do your docs recommend?

I agree with you about the LD flap & the TRAM. Removing muscle made me very uncomfortable - you can't get it back. In 2005 I had a right mast & ooph. In 2008 had the left mast (prophylactic) and had a bilat DIEP flap. Yes . . it was tough. I don't think any of the options are easy - there will be a lengthy recovery time no matter what. I still haven't finished up with the recon since I was diagnosed with mets 2 weeks after the surgery. I've never had good timing . . . But I digress.

I didn't have to worry about body fat for the DIEP. But this was the option my PS gave me: he could work with what I had. If there wasn't enough, he would make smaller breasts. After the DIEP is healed, expanders and implants can be added later - the radiated skin would not be an issue since the shape is already there. Does that make sense? The funny thing is the radiated side turned out much better than the non-radiated side.

This is a very personal and important decision. There are many options. You are NOT alone!!!! Depression is just another lovely (she writes sarcasticly) side effect of bc. I think participating on this site will give you some of the support you are looking for. I wish you the best and good luck with your decision.

Anonymous

You don't have to have reconstruction now.  You can wait.  I am 54 and had bilat mast with no recon in 2008.  I had a similar past as you have had.  It is unbelievable that your cancer was missed.  You can PM me if you need to.  I had a lumpectomy in 2007 and bilat mast in 2008.

cancersuks

I had a free tram flap procedure immediately following my mastectomy in '97.

I was doubled-over for about 4-5 weeks and was in pain but wanted to use my own

muscle/fat rather than deal with implants.  My surgery lasted 8-9 hours, the

mastectomy only took an hour.  I've never had a c-section but imagine (the pain) would

be comparable to that procedure.  I hated the idea of multiple surgeries so

wanted it done all at one time....that's just the way I am.

kmccraw423

Puddinggirl - when I found out I had breast cancer I just wanted them to (1) get the cancer out and (2) do immediate reconstruction so I would look "normal".  Here's what I learned:

I can not have DIEP because of other medical conditions;

I could not think of where I could "lose" a muscle, and, as a diabetic I would be slow to heal and would be worried about 3 surgical areas not two.

Implants were the only option until the tissue expanders became infected and they had to be removed.

My biggest fear was coming home "mutiltated" but that is exactly what happened!  Its been a year now, I can always try again, but its quite freeing.  I think I have only worn a mastectomy bra twice.  All I have to do following my shower was throw on some underpants and put on jeans and a top.  Done!

As to diagnosis - for a while I thought I had become clumsy when eating.  I would look down at my top, find a stain, and think I'm going to need a bib.  One morning, stepping out of the shower I notice a drop of blood right in the center of my breast.  A mammagram and an ultra sound showed NOTHING.  Thankfully  I had an aggresssive surgeon who ordered a MRI which is when it could be documented.  The other breast was "normal" on all the tests but I elected to have a bimx.  Imagine my surprise when the "normal" breast had DCIS too!  As to looking in the mirror I avoid looking in one in full frontal nudity!

Anyway - isn't this the best place to find such wonderful friends, who are generous, loving, experienced in this strange journey and giving?

Anonymous

Puddingirl ~ Wow you've been thru alot. Welcome. I also had a history of abnormal mammagrams with benign outcomes.  They were watching my right breast for calcifications and I ended up with a 5.2 cm IDC in left.  I chose to have immediate reconstruction during the mastectomy.  I went to an excellent PS in Northern NJ. who did the "Free Tram" or muscle sparing surgery.  I've been doing situps since the 2nd week after surgery.  No muscle weekness at all.  I was not a candidate for DIEP due to medical condition and risks.  My PS does "Free Tram all the time.  I am happy so far with the results.  I liked waking up in recovery with a "breast" mound the same size as the one that was taken.  For me immediate reconstruction was the best thing,  It is  a 6 week recovery, and the surgery was done alonside the breast surgeon and took 8 or 9 hours.  Best wishes to you.

Shanagirl