Prophlaytic Mastectomies

meechell83

How many of you have decided to go this route? I am having a biopsy on November 4 for atypia. If eveything comes back clean, I have decided to have a prophlaytic mast. in April (when I have a long break from school). If the biopsy shows cancer I will go ahead with the mast now.

I'm 26 years old and am already tired and exhausted from this risk. I feel like I'm just waiting for the bomb to drop. I know there are people who have been diagnosed who have it far worse than me, but I honestly feel like I'm going to have a heart attack from stress!

What kind of recovery time, pain, etc am I looking at?: Is there anyone around my age on here who has had this surgery? I'd love to hear how it has affected you. And one really stupid question that I have but I've always wondered this, so here goes. If you have a prophylatic mast, do you consider yourself a breast cancer survivor? Since you never technically got diagnosed, but it has certainly touched your life in a very profound way. sorry if that offends anyone, but I seriously have always wondered that.

Once I made this decision and said it out loud, I have felt a sense of relief ever since. Now I just need to get through the biopsy Nov 4. Even if it shows cancer, I know there is an end in sight to all of this, and that makes me feel better than I have in weeks.

eileen1955

Are you BRAC positive?    I just had a PBM 4 days ago. all I feel is RELIEF that I will never have to worry about bc again.          BUT I am 55 and not nearly as young as you.    SO I can only speak from my perspective.     I had bc 7 yrs ago so I am a survivor.    I think you would be called a Pre-vivor, tho that seems a bit silly.                      Post-op course is not nearly as bad as I thought.  I chose not to have recon so once again I cannot speak to that.     Best wishes as you deal with this situation.

bebe51

My first thought would be to get tested for the BRCA gene.  That way you know what you are up against.  Breast cancer and BRCA2 gene runs in my family, but as of yet, I have not been tested.  I do understand the rollercoaster that you are on. I was dx with ADH in Feb and just spoke with a PS (among others specialist) about different surgeries.  He has suggested that I get tested, that way I will know which road to take.  So for now I will do high risk monitoring with MRI's and mammograms.  I hope to make a decision before my next MRI due in Aug '11.  Like Eileen said, you are a Previvor.  There is a book out for previvors. I forget the name but they have a website www.previvor.com. Previvor's are high risk due to family history or gene positive that have done PBM or any preventive surgery before the cancer. Hope this helps.

Debbie

Fearless_One

I had lumpectomy and rads, but have decided on a PBLM due to dense breasts and the fact that mammo never found my tumor and even MRI's are sketchy on me.   I worry it will come back and they won't find it.  

DebinATL

Hi Meechell83, I just had a prophlaytic bilateral mastectomy and immediate reconstruction on Sept. 14, 2010. I am 56.  I am a 12 year BC survivor.  I was 44 when diagnosed.   Had a lumpectomy, chemo, radiation and was fine until last October.  I  found another lump.  It turned out that lump went away but they saw something in my "good boob".  So at that point I had decided that I will probably have a bilateral mastectomy with reconstruction - so the search went on.  It turned out to be just a watery cyst in my good boob, but as you put it "the stress" was just like reliving the day I was diagnosed.  It was horrible.  I knew then that once I got all the information and doctors lined up, I will have a prophlaytic bilateral mastectomy with recon.  

I am entering my 5th week.  My surgery went well.  I elected to have the muscle sparing TRAM flap reconstruction as I knew that the pair of PS work well together and perform the surgery together so instead of an 8 hr surgery it is cut in half... 4 hour surgery.  Of course, I already knew my breast surgeon from years of mammograms, who I dearly love.

The pain was not as bad as I expected.  I was in the hospital for 4 days, but didn't mind it.  The put an OnQ Pump that pumps pain med's directly into my tummy area - so that alleves long term narcotics and allows for a faster recovery. I also had a pain pump where I can click it whenever i need more pain relievers. I got 4 drains; 1 near each boob, and 2 in the stomach area.  The hardest part of a TRAM (BTW you get a tummy tuck -which I LOVE!!) is that a small part of the stomach muscle is used that is the blood supply for the fat and skin to make the new boob.  So for the first week it is very difficult to get out of bed or the sofa/chair.   I slept reclined for the first 2 weeks so I could get out of bed easily.  Overall, I am happy with the results.  Next is Stage II where I get revisions/corrections to the boobs and nipples.  After that they tattooo the aereola.  Besides the first 2 weeks of being hard to get out of bed, the drains are annoying.  But as of the 3rd week I was able to get in and out of bed without any problems.

So, for me, would I do it again? Yes.  It gives me peace of mind.  

I agree with the other ladies who posted here.  Have you gone thru the genetic testing?  I would highly recommend that before you made your decision. 

I wish you the best.  

Hugs,

Deb 

Anonymous

Hi all,

I can relate to how exhasting it is to always be thinking of your risk.  I am 36 with LCIS/ADH/strong fam HX and going for PBM with immediate recon in December.  Part of the process included genetic testing, I am BRCA negative.  Having the full picture might help you in making choices and knowing what you are up against. 

I just finished the book "previvors" this week, definitley look for it if you are interested, I found it to be helpful and honest, I don't know anyone who has had PMB and the book covers alot, not just if you know you are genetically pre-disposed, but the questions you mentioned are adressed.

If you need anything or would like to chat, feel free to PM me, I wish you all the luck in your journey!

~be well

HelloFromCT

Hi, I had a PBM with immediate DIEP recon.  I am VERY happy with my decision and would do it again in a minute.  Recovery was not bad at all and especially for someone as young as you, it would be even better.  If you are planning reconstruction, please consider flap surgery.  Check out the NOLA thread.  It's where I learned a ton about options available to me (and most women).

Best wishes.  Do what you feel is right--trust your instincts.

thegoodfight

This is a decision that I still struggle with here and there.  When I see a discussion about PBM's it makes me question my future again.   My treatment was a lumpectomy, chemo and radiation and Arimidex.  A mastectomy was not considered at that time, because all my research said that the protocol I chose gave me the same odds against recurrance.   When I finished my treatment, my onc suggested a PBM so I would have less risk of another dx.  He agreed that it would not impact the cancer I already had, either we got it or we didn't, but could lessen the risk of another dx.  After a second opinion, I decided at that time not to go forward because the surgery and reconstruction had it's own risks and there is a great chance that I may never face the beast again.  What it came down to for me is that the PBM would NOT ELIMINATE MY RISK it would reduce it.  I think if there was a guarantee, I might have gone forward, but as I read these threads I know that the beast can come back after a PBM since they cannot remove all breast tissue.  I made my decision, but also know that if anything at all comes my way again, I will go forward immediately with surgery.  I am banking on early detection if I am attacked again because of the close monitoring I now receive.  So it's a crapshoot, but for today I am comfortable with my decision.  That's the bottom line, every one needs to make their own decision and be comfortable with that decision.  I wish us all well and good health in our futures.

Caren

ElaineD

Can I just echo Caren's point-having prophylactic surgery does not remove your risk-but it decreases it by a large amount. But problems can arise more often than you may think. I had a prophylactic mastectomy after having a primary in the left breast. I was subsequently diagnosed with BRCA2 which gave me cause enough to request having the remaining breast removed and  a hysterectomy-to decrease my risk as far as possible. Yet here I am at stage 1V (terminal), with mets to pleura, liver and bones, so it was by no means helpful in my case.

At your age I woud think long and hard -if you're high risk you will be monitored accordingly anyway. I'm not sure why you would think/worry about classing yourself as a survivor of BC if you haven't had BC! The obvious answer, is "no", you haven't had BC so you can't be classed as a survivor! By thinking along this line, you are actually causing yourself even more stress. There is a huge difference between undergoing prophylactic surgery, and surviving a cancer diagnosis. Good luck with your decision.

DianaWolfson

These are such tough decisions. I know so many women in you're shoes (including me). Thank goodness for places like Force. And that new book is great that you mentioned bebe51. It gave me so many great details about surgery and other options. And I could really relate to some of those stories (especially the non-BRCA girls!)

It's called Previvors and I think the website is www.previvors.com. 

 Anyway good luck to you. Its tough I know!!! You r in my prayers.