prophylactic mastectomy-your input wanted

zengardnz

I don't have a cancer diagnosis but DO have atypical ductal hyperplasia in both breasts, a mother and sister who have both developed breast cancer (post menopause) and have very dense breasts.  My risk is also higher due to never having been pregnant and having very dense breasts which don't show up much.  I started getting breast MRI's a little over a year ago - where all sorts of little spots have showed up.  So, in the last 13 months, I've had 3 regular breast MRI's, one ultrasound, 4 mamograms, 2 MRI guided needle biopsies and one excissional biopsy.  I'm having a PEM this week.  It's all coming down to the fact that I can continue every six months to more pain and stress and being turned into swiss cheese or I can just have them taken off.  I'm 95% sure I will have them taken off and have meetings with a genetic counselor and 3 different plastic surgeons this week.  Don't know if it really matters about being gene tested.  It feels like my only real option is to have them removed and my surgeon says she doesn't want to have to keep "whittling away" at me.  Any others out there who have chosen to have masts when they DON'T have cancer? AREN'T positive for the gene?  I'm scared now that insurance may not pay for it.

lvtwoqlt

Zengardnz, I was dx two times (once in each breast) within 19 months with ADH and my surgeon suggested considering PMB. I was considering it and when I had my 6 month mammo it was abnormal again. I told him even before the stero biopsy that I wanted the PBM. He said that we needed to do the biopsy before scheduling the surgery. The biopsy the next week showed DCIS in the right breast and I did the bilat mast with recon June 07. I have not regretted my decision but am glad that the surgery took care of the cancer and did not have to have chemo or rads. The final path report showed more ADH in the right and hyperplaysic ductal cells in the left. My doctor said that I had made the right decision for me. It is a hard decision to make but like you, I wanted off the rollercoaster of 6 month mammos and biopsies.

Make sure that you check out on the surgery forum the topic on shopping before and after surgery.  There are a lot of great ideas to help you recover from this surgery.

Sheila

HensonChi

Bump

HensonChi

bump again

JStar

Zengardnz, I sure can relate to what you're going through. Ive had 2 lobular atypical hyperplasia biopsies, and a sister who was diagnosed with breast cancer at 43 nodes positive. No apparent BRCA 1 or 2.  My MRI in June was clear.  My "GAIL" score puts me around a 47% lifetime risk, other risk models up to 82%. I'm seeing two reconstructive surgeons this week to look into prophy bilateral.  It's a scary step to take when there isn't a known cancer at this point pushing the process, but my husband is all for us looking into it seriously.  My sister now has a primary pancreatic cancer, not from the breast, and a possibility is that all her follow-up body CT scans could have had an affect on her pancreas.  I'm heartbroken for her, and she is also encouraging me to do whatever I can.  My doctor recommends 3 options - 1) yearly MRIs, 2) tamoxiphen chemo, or 3) prophy mast.  My husband called our ins co and they said they'd cover, although I'm wondering if they really knew what he was saying...  But it IS one of the recommendations of the doctor so.. I'm blessed, husband says he'll pay for it even if ins doesn't (don't know where we'd come up with it, but love him for saying it).  IF you call your ins co and they say they'll pay, don't call again to ask.  All the best to you, I sure feel for what you're considering...  JStar  

psalmist

Tweeker,

I am in reconstruction after undergoing bilateral prophylactic mastectomy July 10th.  My initial dx three years ago was LCIS in left breast.  I also had dense breast tissue, multiple biopsies, family history (mom, aunt), microcalcifications, and fibrocystic disease.   Never underwent genetic testing.  I just got tired of the constant mammos, follow ups, and the Tamoxifen was too much for me.   SO, I opted for BPM.  And boy, I'm glad I did.  The doctor called a week post op to say they found ductal hyperplasia in the right breast and then called back thirty minutes later to say the lab had just informed him there was a small cancer also in the right breast.  I feel I dodged a bullet, as nothing had shown up on a mammo in May.  We could have gone merrily along not knowing.  I had to go in the following week for a lymph dissection, which was zero involvement for all 16 nodes taken.  No diffiulties associated with lymphedema, although I am careful. 

This is not to suggest that my story has to be repeated in anyone else's life, but I just wanted you to know that for me the peace of mind has been worth the pain and discomfort (and believe me, the recon process has been most uncomfortable).  My PS told me before surgery to "remember why you are doing this.  If you have complications, you must remember that you are avoiding cancer..."  My oncologist had told me before surgery that close observation is fine..."as long as the horse stays in the barn."  The same oncologist told me last month (after my surgery) that my risk of dying from BC is about 1 percent and I don't need anymore mammograms.  I am not on any follow up regimen except a breast MRI every few years.  

I think most importantly, you need to follow your gut -- that "still small voice" inside of you.  If you feel peace about your decision, whatever it is, go for it.

lilith

Hi. I am also BRCA2, and had bilat mastectomy with reconstruction - following a dx last year of cancer for which I have been treated separately.

My dx came at 43. my mom had it at 34... so for me it was a lot later. My sister is fine, she is 42 now and never had a dx (checked and mammogrammed). We don't know if she carries the gene too. So, it looks like ages can differ, there is no telling.... but now I am very very glad to have all out. No more mammos, right now I still do blood tests every 3 months (tumor markers), but soon will be every 6 months, then yearly.

Don't forget other bits at risk because of our genetic mess: ovaries (I plan to have this out), and colon need screening.

psalmist

Lilith - Good reminder about our "other bits."  I haven't been tested for BRCA2, but I had a 2 lb. durmoid cyst removed from an ovary about 8 years ago (benign).  Still wondering what might be growing in there...

1Cathi

Girls how strange this topic was the first post I saw this AM, all weekend I have beenn just thinking so hard about this same thing, I see my surgeon Tomorrow for path reports on biopsy done on 9/11 for 2 lesions in R breast 9the good one) 5th biopsy there in 2 years and also the DX of ILC, ALH & ILCS in left in 06.

Like so many of you I am so tired of the tests, waiting and scares,  and I just really think "It is a matter of time" before the other shoe drops,  my R breast is full of cysts, and both extremely dense.  I can't help but wonder what is lerking behind all that stuff.  If my path reports are to be malignant tomorrow - DECISION MADE! If B9 I know I will continue to wrestle with the idea, I really believe it is the right and best thing to do but it is SUCH A HARD THING TO 100% say go ahead do it.  I have read and researched some, I would not do rescruction now not after rads, not willing to take the risck of complications from that,  being a VERY small "B"  hiding the fact from the outside world would surley not be an issue.  My biggest fear is my hubby-  I know beyond a shadow of a doubt he loves me for me -  and boobs or no boobs that would not change,  but my own insecurities cause me to worry over that.

But I want to be alive for a long while, I don't want something out of the blue to pop up giving me just months to live, I am so confused right now.

Mykidsmom

Cath - I am w/ you. Intellectually the BPM makes sense, emotionally I am not quite there yet. One question I had was what follow-up testing do they do after the BPM? Psalmist wrote that she gets a breast MRI. Not to be crude, but how would they do that if I don't have any breasts. I don't think I will get reconstruction, or at least that's where I am leaning right now. So I assume they can't do mammo's or MRIs of the breast.

 FYI - My oncologist tells me that the BPM will reduce my risk from "very high" to around 1%. Quite a reduction if you ask me.

 For now, I am trying to figure out just what my risk is and I am going for the close monitoring for a short while. I see an oncologist and a genetic counselor next week. My mammo is scheduled for January w/ another visit w/ my surgeon then.

Best wishes to everyone out there that is high risk. What a great group to be part of (and I am not being totally lib by saying that). You are all a very caring group of ladies!

1Cathi

From what I am reading and learning here on the boards follow up testing is MRI's and US????? I was cancelled with my surgeon appointment yesturday - emergency surgery and can't get inuntil next Tuesday, but insisted my PATH reports get mailed, hopefully they did it @ 9AM when I made the request and I will have them today, receptionist gave me a highlight of ADH and low grade DCIS possible,  soooooooooooo that really just reaffirms the decision I have finally come to.  I am no longer comfortable waiting for "something" to be found. Avery close friend of mine asked me if I believed there would be a cure for BC in my life time, if I really thought that for woman like us that have the "precussor indicators: that there was enough proof out there that just close follow-up, AI's, tamox what ever were proven enough to keep me safe and free from cancer before I die from OLD AGE-  I said No -  so she most bluntly said well them "let them find a cure for the next generation" and you get rid of your boobs, like you I was told how drasticlly my odds would be reduced of a recurrace with Bilat -  it is just finally time, and I am at peace with the decision -  I am sure I won't be HAPPY everyday, there will be sad times,  but I want the decision to be MINE, I don't want to be forced into it years down the road when something pops up, and I know its not 100% but close enough.

I have just stumbled across a site (you might already know) breastfree.org -  some pictures and info.

XOXOXOXOXOXO

SunshineLovesGod

Hi Ladies.  Food for thought re having both breasts removed.  I was DX in 1997, DCIS with part of the tumor invasive, in the right breast.  I did not have the left breast removed.  Mets in the liver in Aug/Sep 2002; sternum in 2006.  To date, there is no cancer in the left breast.  Personally, I think it's a radical move to have both breasts removed as a precautionary measure.  Let me explain why.  There is no way the surgeon can remove all the breast tissue off the chest wall.  Also, there is an internal mammary gland.  I'm fairly certain I'm right about this, but you can ask your doctor.  Best way to beat cancer is to defeat it before it gets started - by exercising, eating the right foods, getting proper sleep, having the right attitude, and working at not letting the little things - or the big things get you down too often.  I am HER2+ and have already lived six years beyond the five year life expectancy with HER2.  I don't want to scare any of you - just want to give you another point of view.  Take care.

1Cathi

Hi Sunshine,

Thanks for your input and your opinons and point of view are well taken.  Making a decision such as this is radical I agree, and you are right about, eating, exercise, and a good attitude,  but for me at this time it is the right decision, I know tissue will remain, and the chance will always be there - that something "slipped through the cracks"  but I am at a point where it is the right thing to do for me  - for a much great peace of mind than I currently have. Thank you

xoxoxoxoxo

lilith

Hi there.

All the debate inspired me to do a bit of a research through Google (bless Larry Page, it is my main tool of research).

check it out here...

http://www.cdc.gov/genomics/hugenet/ejournal/bimastec.htm includes stats about the results of a prophilactic bilat mastectomy, in case of genetic mutation BRCA. Very encouraging, if you ask me.

http://www.medhelp.org/posts/show/261213 includes some cases (posted in a forum like ours). Nothing conclusive, but my drift is that usually there is only a very small amount of breast tissue left, and that the chances are that if there is a return, it is a met of the previous cancer rather than a new cancer.

finally, a research on quality of life and satisfaction after the op:

http://www.annalssurgicaloncology.org/cgi/content/abstract/14/2/686

Remember - web material should always be taken with a pinch of salt...

1Cathi

Quite intresting Lilith - espically for me the quality of life one.  I have spent 2 years feeling my boobs everyday all day sometimes (ha) expecting to find a new LUMP.  I am tired of doing that, while I am sure that some where in the back of my mind every now and again I might wonder if  -something got past the good doctors, but I am convinced that my fears and worries will be far less.

I hate the fact that I have come to a decision of having to "amputate" part of my body,  but it is the hand I have been dealt, sure my hubby likes my boobs (but I think he enjoys other things as well) for him I also know it will not be a problem, I have decided that I am going to have a killer "ARS & LEGS"  that will more than make up for the tops side -LOL!!!!

THANK YOU FOR THE INFO

tweekerbeeker

Hi ladies-I'm back. Haven't been here in a while. In the meantime, I have definitely decided on mastectomy. As far as the remaining breast tissue-it leaves a risk of about 2%, compared to 87%. I think that is pretty good! So it really isn't as radical as it seems. Cancer is a wild carrd.

I have found wonderful support at www.facingourrisk.org. Having a genetic mutation calls for lots of big decisions. Best to you all.

<> tweeker

2008bcsurvivor

I am not sure if this has already been posted...If not, some of us may find this interesting (if it has been posted already sorry about the repeat).  There is still so much to be discovered wrt bc.  I do not have any known genetic mutation, yet for many reasons, some of them already disussed, I am planning to have my other breast removed.  Thanks to everyone for sharing.

New 'bad' gene linked to breast cancer risk

Updated Tue. Jun. 20 2006 9:11 AM ET

Associated Press

Reykjavik, Iceland -- Icelandic women with a bad gene that raises their risk of breast cancer were virtually certain to develop the disease if they also had a mutation in a second gene, scientists reported Monday.

It's unknown how much this applies to women in the United States or elsewhere, but researchers believe the discovery will help unravel the genetic underpinnings of the most common cancer in women worldwide.

"How much risk it actually adds is the question. In this (Icelandic) population, it seems to add a significant amount of risk," said Bill Phelps, a genetics expert at the American Cancer Society who had no role in the study.

Two genes discovered a decade ago -- BRCA1 and BRCA2 -- have been linked to hereditary forms of breast cancer.

Women with one of them have 3 to 7 times the risk of developing the disease compared with women who lack such genes.

But they account for only 10 percent to 15 percent of total breast cancer cases, and not even most of the inherited ones, so scientists long have searched for other genes that may act alone or with them to raise risk.

One, called BARD1, now appears to do that.

Researchers led by Dr. Kari Stefansson and colleagues at deCode genetics Inc. in Reykjavik, Iceland, studied 1,090 Icelandic women who had breast cancer and compared them with 703 similar women without the disease.

A specific BARD1 mutation was found in 2.8 percent of women with cancer but only 1.6 percent of women without it.

More surprisingly, the risk of developing breast cancer roughly doubled for women with the BARD1 mutation and the BRCA2 mutation most common in Iceland.

"When you get them together you basically have almost certainty of breast cancer," Stefansson said.

In the United States, BRCA1 is more common than BRCA2, especially among Ashkenazi Jewish women.

Many women with one of these bad genes agonize over whether to have mastectomies or other preventive treatments.

"A lot of people don't really want to deal with these issues unless they've had breast cancer" and are worried about it returning, said Ronit Elk, a prevention researcher at the American Cancer Society.

If more research bears out the role of BARD1, women might be able to make better decisions, she said.

The study was published by the online science journal PLoS Medicine. The company conducted and financed the research and said it was working on developing a test for the gene mutation.

The company has long done genetic studies in Iceland because of the availability of a large database on the population.

Breast cancer is the most common major cancer in American women and the second leading cause of cancer deaths in women.

About 213,000 new cases are expected to occur in the United States this year and more than 1 million worldwide.

lilith

good post... interesting.

Also to note, that the genes BRCA1, BRCA2 are the ones doctors know about. There may - and there probably are - other ones that disrupt our cellular work in similar or different ways, compounding the problem.

 I hate this whole thing.