My decision for a PBM

Hi Jean,

I made the same decision so I wouldn't feel like bc was lurking behind each rock.  I won't say it wasn't without discomfort, but the mental relief has made it worth it for me.  I'm waiting on my exchange surgery in Nov.  From what I read, that should be quite a relief.

Good luck with your decision.

Carol(AZ)

I am trying so hard to make this decision right now myself.  I am only 6 months into tamoxifen and monitoring, and I am a bag of nerves.  I am sick to my stomach, weepy and grouchy.  I feel like I am just waiting for the other shoe to drop, for cancer to make the decision for me.  I am only 44 and think I can handle the surgery a lot easier now than when/if it comes back invasive and then I also may have to endure chemo.  I don't know what to do!

A friend is pushing me to make an appt for a second opinion at Sloane Kettering.  Has anyone done this and if so what was your experience.  I am trying my hardest to ignore the nagging in my gut and I just can't get it to stop.

Kimber-I can sympathize.  I don't know where you live, (we have sloane Kettering here also), but after trying being just a number at MD Anderson, I asked my Radiologist, and she recommended a doc for me with Texas Oncology.  What a difference!  Because I am considered such high risk, I am seriously considering PM.  My husband has been very supportive and is for it just to ease my worries.  Tamox made me so ill I was ready to say just take everything!  My new onc put me on Fareston, and the difference has been amazing.  Supposedly all the same benefits as Tamox, but I am not getting the terrrible side effects.  So, i figure I'll wait it out for at least two more mammos, and then decide (last mammo I had to do another biopsy, and I'm already really tired of that routine!).  That gives me about a year to decide, and my onc agrees that I don't have to hurry the decision, but keep up monitoring and make the one that is best for me.  That's all we can do!!  good luck- Denise

I am having a better day today.  As you know, some are better than others.  My dilemma is do I just stick with monitoring, or do I get proactive and consider PBM.  I am so afraid of an invasive cancer developing.  I feel like I am just waiting for the other shoe to drop....but what if there is no other shoe???  I'm doing ok on tamoxifen and my last mammo in Aug was clear and I have an MRI scheduled for November, so I guess we are doing all we can do right now.......

Here's my long and rambling experience )

I debated for about a year before going ahead with PBM.  I finally decided I had had enough of imaging and biopsies.  But, just as it was definitely right for me; it is a decision that is individual for each of us.

"Mykidsmom"      I felt exactly as you stated in a previous post~I wanted to do this when and where I wanted to do it; then to have it forced on me in an emergency!  I wanted to do it at 52 instead of 62 or 72....and hopefully without chemo/radiation.  My breast surgeon said she always listens to the reasons someone gives when they say they want a prophylactic mastectomy.  I asked her if I had convinced her that I had good reasons..........and she said I didn't have to, she knew my history!  :o)

After abnormal imaging; during a duct excision, due too persistent bloody discharge, I was found to have LCIS.  I started on tamoxifen, and the "close surveillance" scenario.  To me, it was just too stressful to "watch and wait".  I talked to my breast surgeon about PBM...and she agreed.  I tried to put it off a little ways...but she was concerned over some ongoing issues, including the ongoing discharge and a thickening in one breast and said I should go ahead and get it on her schedule.  Interesting......right before I had made the decision, I had my "routine" mammogram....which showed nothing suspicious.  About 2 months later, I had a pre-op MRI....which showed a "grade 4" probably malignant area in my left breast.........the side that had NOT had any issues at all.  I knew in my heart then, that I was definitely making the right decision for me. 

Due to this new discovery, my surgeon decided to do add a left sentinel lymph node biopsy to my procedure....She had already scheduled me for a right sentinel lymph node biopsy due to her concerns that I might have something invasive on that side. 

My BPM was August 15^th......... frozen pathology was clear-as well as final path-of anything invasive.!   The area that showed up on the MRI in the left breast was an area of LCIS, a couple of areas of LCIS were found in both breasts, also...among other atypical cells, and a relatively rare (in a breast anyway) benign leiomyoma.   During surgery, the lymph nodes were significantly enlarged, and she was still very suspicious about something invasive...until final path came in; and we both celebrated!

She said she thought I had made the right decision.  I work for a surgeon (different specialty ) and he said the same thing~he really felt I had done the right thing.  So somehow I guess it helped to know two surgeons that I respect very much, thought it was exactly what I needed to do.

I honestly felt, as well as my breast surgeon....that I would either end up with a mastectomy "piecemeal" due to biopsies.....or I could go ahead and just get it over with. 

I think I knew from square one, that I would end up going this route~but I won't say it wasn't a bumpy one!  It is so much easier said than done; it's a little hard to wrap yourself around the idea of losing your breasts, no matter how "right" you think it is.  I did pretty well until that MRI right before surgery that showed the potential left breast issue.  I think that's because all along I had thought of it as prophylactic, and the potential of invasiveness, and that I might have to have chemo/radiation.....scared the bejeebers out of me!   But it also cemented in my mind, that I had made the right decision for me~

BTW........for those who want to know; I am having reconstruction, but again....a decision we each have to make!  I had expanders put in a time of surgery, and am about halfway through my fills~

The relief after surgery was immeasurable...and I have absolutely NO regrets; I would make the same decision all over again.

 But I agree with "abinneb" that it is a tough decision, and pray that each of you will find peace with the decision you make, there are no right or wrong answers!!

Best wishes to all of you...wherever your journey takes you~  And, please ask any questions you may have!

Nancy

I am a DCIS girl, but I can agree on the total relief and feeling of safety after the mastectomies.  I went the extra mile and chose surgical meno instead of taking tamox.  But again that is me.

But as many trying to make the decision, if you are like me i searched this site for help.  I got it, I decided before the dr's that bilateral was what was best for me.  They decided it too, BUT AFTER ME!!! 

Anyway, it was the hardest decision ever, but I am happy with it still almost 9 months out.

Good luck to all and hope you can find peace with youself no matter what decisions you make!

Dani

Yes you are right there is fun after the storm!  But this picture is actually me in August 07, two months before the storm!

Dani

From what I've read, they usually wait several months after diagnosis for LCIS if they want to do PBMs.  They don't want to rush you and want to make sure you are comfortable with your decision.

Let us know how it goes, OK?