When do I make the decision for a prophylactic mastectomy?

MandyP

I'm 48 and have had one excisonal biopsy on the left and four on my right.  The worst one on my right took 1/3 of my breast in 2011 for papillomatosis and a radial scar.  I'm only a size B but thankfully the scar tissue filled in so they divot isn't bad anymore.  Fast forward to this summer.  Another issue in the right.  Surgeon wants it out.  This one is PASH and he thinks the huge area of dense/hard tissue close by is probably that as well.  Mammograms do nothing for me (looks like a snow storm, solid white).  Ultrasound is pretty difficult because they can't see thru the dense areas.  MRI works but also notes extreme dense tissue.  My PASH diagnosis came the end of May with my last surgery.  I go back in a month for an ultrasound on the left (radiology saw something there in March and wanted a 6 month follow up).  

My surgeon (also a friend of mine since I'm a nurse and work with him at the hospital) said I'm a candidate for a prophylactic mastectomy if I feel I'm ready for it.  I guess I'll see what the next ultrasound says.  As it is right now, 1/3 of my right breast is scar tissue and almost the rest of it is that dense area (presumed to be PASH since the lump he removed in May was right by it and PASH).  

Am I crazy to even consider a mastectomy??  Since 2007 I've never been able to go 6 months without a call back or a follow up from either him or radiology.  I'm kind of over it.  I want my right side "fixed" by the plastic surgeon but he wants the rest of the dense tissue out (which pretty much means a nipple sparing mastectomy).  The only reason I haven't done it is because my surgeon said I have to be 100% sure because there's no going back.  That just scared me.  

My last surgery in May is healing so slow.  I've been on Keflex once already and there is also a seroma.  Surgeon says it's because it's so close to my last surgical site that the scar tissue has crappy blood flow and that causes slow healing.  :-(   When I see him next month after my ultrasound he'll decide what to do about the seroma.  He's hoping it's not an abscess.  

Agh, I'm just over all this crap.  Sorry for my rant.

CFK

Hi Mandy,

That's my nickname and I love it.  I understand how you feel.  I too was either finding something in my breasts or getting called back. I had several biopsies done, and I think each time I aged.  I was getting mammograms, ultrasounds, and mri's done (alternating every six months).  I was pretty much a regular at the imaging center.  Last year in October I finally met with a BS and we went over my risks and it was determined that I was at high risk for getting BC.  We discussed my options, and I decided if my insurance paid for a PBMX I would proceed with it.  I saw what my mom, sister, and aunt went through and I didn't want to go through that when I had a way to prevent BC from happening to me.  December 20, 2013, I had a PBMX nipple sparing one step procedure done.  I will not lie.  The BMX was hard physically.  Mentally I was relieved that it was done.  Both my BS and myself were happy that I had this done because pathology came back showing ALH in both breasts among other things.  That increased my risk more. The reconstruction part takes some getting used to, but after a few months I don't think about it too much.  I'm just happy that I don't have the stress of finding something in my breasts anymore.  No more mammograms, ultrasounds, mri's or biopsies.  I will be having a revision done in the future, but I'm not ready for another surgery right now.  Like your surgeon told you make sure you're 100% sure because there is no going back.  It's a scary decision to make, but you will know what's best for you.  Good luck!

MandyP

My insurance will pay for a prophylactic mastectomy.  In fact, I bet they'd be thrilled to.  In 2011 alone my medical costs were over $20,000 on my troublesome breasts.  I know if they took the area out of my right side that is PASH, I'd have maybe 1/4 of my original breast left (minus scar tissue).  

I guess I'll see what next month brings.  I'm just frustrated and want someone else to make the decision.  

You definitely made the right choice with your pathology finding ALH.  Did your surgeon and a plastic surgeon work together on your one step procedure?

CFK

Yes they did work together.  The surgery took 4 1/2 hours and I was only in the hospital over night.  You will know what decision is best for you. Good luck next month.  

sarahjane7374

Hi Mandy -

I was so over all the crap too.  My BS gave me the option of PBMX and I took it, gladly.  I'm just past 1 year & it's all good.  My pathology came back with all kinds of benign junk - fibroadenomas, cysts, PASH, sclerosing adenosis, but also an area of ALH.  I have no regrets. 

My insurance initially denied coverage, but my BS got it through with a peer-to-peer call.

Not everyone will agree with your choice, but it is your choice.   Good luck to you.

MandyP

SarahJane, did you do a nipple sparing mastectomy??  Just curious.  Glad you're surgeries are in your past now and you are healing.  

sarahjane7374

Yes, I did nipple sparing.

beacon800

i did it and never looked back.  Had numerous biopsies with increasingly abnormal results.  No kids, multi generation family hx.  When I got an LCIS dx, it put me over the top.  I figured someone was sending me a big warning flag and i would be unwise to ignore it.  

I found the surgery pretty easy.  I didn't reconstruct and didn't need sentinel node bx.  Those things make a big difference.  If you are doing prophy bilateral, you will want to discuss with your docs the need of doing sentinel node.  For my money, if you can avoid doing this, it is a very good thing.  Much fewer risks and issues down the road.

It is a great pleasure not to worry about bc the way I had to before.  Also a great joy not to have the imaging studies that were just so stressful.  This was right for me.

sarahjane7374

SNB was recommended for me by the tumor board because although I was technically prophy, I had so much going on and so many unbiopsied areas that there was a concern that there would be a dx after pathology was reviewed.  I agree that if you can avoid it, you should, but my docs felt that the risk of doing it was outweighed.

As of today, I have had no adverse effects from the SNB, or the additional nodes that were removed, but I do understand that it can crop up at  any time down the road.

kamm

sarahjane7374-

Just curious...If you were purely prophylactic what wa her reasoning for doing your sentinel node? Seems unusual to set you up for lymphedema risk when you were prophylactic.

sarahjane7374

The hospital tumor board reviewed my case and made the recommendation for bilateral SNB.  As explained to me, I was a good candidate for it and the ability to do it later would be lost if there was a cancer found during final pathology. 

kamm

Oh, Okay, thanks! Just wondering!