Is there a standard of follow up for pbmx after lcis?

There is a standard for those with LCIS and you chose the ultimate solution to a situation that might or might not have occurred. There was no invasive disease.You could even say that now the rest of your organs might be at risk.How do you monitor all of them? Having said that , I now tell you that I applaude you decision.I was "followed closely" for 3 years with LCIS and I sit here now 11 weeks post -op BMX for not only ALH and LCIS BUT also ADH DCIS and IDC.I wish I had  been so proactive.All concerns about BC would be gone.

This is the frustrating part of LCIS, the not knowing what to do. 

You are so right, Janet!  Part of my quandry is that I am not sure if I had BPMs that my anxiety would decrease - would I then still be worried about LCIS, and in addition be worried about lymphedema or chronic mastectomy pain? 

It sounds like the vast majority of women who have had BPMs are very happy with their decision, but, fortunately or unfortunately, I can't trade experiences, personalities, or emotional health with anyone.  

Tough choices.

%#*(&%  Laurie.  No one deserves this kind of stress.  Holding out my hand to you!

Thank you leaf and Kelly you are very kind. Just trying to stay busy until I see my BS on Tuesday.  Thinking of finding a new doctor for follow up care.  I was told to just do self exams for LCIS, no mammograms.  My oncologist was against me getting a PBMX.  So I went out of state to get my PBMX. The doctor that did my PBMX suggested I just follow up with my general practitioner.  Well, that doesn't seem like a good idea, because she really did not think ALH was anything to worry about.  It wasn't until I started doing research on my own that I really learned about ALH / LCIS.  I have come across many road blocks trying to find good care. I need to get a better plan in place.  

Laurie 

Kelly,

Annual visit to BS, gynecologist and general physician seems to cover it.  MRI's every two years seems reasonable.   What is PS? 

My oncologist ordered my MRI prior to my BMX.  Not so sure I want to see the oncologist again since he gave me a bit of a bad time about going against his advise about the BMX.  I will ask the BS if she could see me on an annual basis and order an MRI biannually.     

Doing self breast exams only, on my own, is not something I am comfortable with.  So glad I came to this forum.  Thank you so much Kelly and all the other women out there spreading the information we all need.  Could  you imagine trying to deal with all this without a  web site like this?  Say 30 years ago? 

How is everyone doing with the stress level of managing this?  Now, every little thing about my body that may be slightly abnormal or questionable puts me on edge. Every so often I feel odd sensations in my newly constructed breasts (IGAP) and it sends up alarms.  After I get this breast lump problem resolved, I just really want to get back to my life.  If I know I am having my breasts monitored in some way, that is justifiably reliable, I think I could relax and get on with my life. 

Laurie

KellyMaryland:   I had my exchange surgery on 8/5/11.  I feel pretty good. 8/12/11 going to see PS.  I have a question for you.  Who told you that you have to go for any MRI every couple of years?  and why? After my PBM I had asked my BS about mri's and she said no.  So I'm just wondering if it was your PS or BS that told you.  Talk to you soon.

So happy to report lump between my breasts is merely a cyst.  Had a needle aspiration and had it analysed.  Worked myself up into a frenzy for nothing.  Greatly relieved.

Asked my BS what I need to do for follow up after my PBMX for LCIS.   My PS and BS both told me no mammograms, only self exams.  The PS told me to just follow up with my general practitioner for my yearly exams.  However, I just don't feel comfortable with that.  So glad my BS agreed to see me yearly.  Not sure what would be better, to see the oncologist yearly or the BS. I also have a high risk of colon cancer since my Dad had it a year ago. My oncologist is a male and we don't see eye to eye on just about anything.  We ended our conversation by him telling me, "there are no guarantees in life".  Although I know that to be true, I don't think I needed to hear it when I did.

Ok, now lets relax. Enjoy the beautiful moon out tonight.  Perhaps a glimpse of that meteor show (best time to view is just before dawn). Time for my yogi bedtime tea.

Sweet Dreams,

Laurie 

Thanks iammommy for this info.  It is just the same as what I was given by my BS as far as follow up goes. 

I never asked that exact question about how to answer a legal question of "did you ever have cancer".  That is an interesting point.  Since I had PLCIS (very small amount, they tell me) I do not know how I would answer to stay correct.  I will ask my surgeon this when I see him in December.

Laurie - awesome about the cyst!!!!!! Isn't it just the best feeling in the world to hear that!!  It's like preparing for a war and then you hear the peace has been made and you stand down.  So great! 

Wow, it has been a while since I have been on this web site.   Every so often my experience from the last year pops into my mind.  Then I am drawn back to my friends on this site.  Feels like home.

These days I look back on my mastectomy for the LCIS / ALH, as if it were all a dream.  My new breasts (GAP  reconstruction), are better than my old ones.  My breasts have sensation and they do not feel at all numb.  Could the nerves have regenerated that quickly?  It has been 7 months since my last surgery (stage 2).  My breast are off my radar once again. 

One thing for sure, I have lost all my trust and confidence with my doctors.  Feel like I am telling them what I need.  There doesn't seem to be much consensus in the medical community when it comes to follow up care for LCIS.  So, I guess I will follow my surgeons advice and do breast self exams periodically. 

Kelly, Leaf, Beacon and everyone- hope you are all doing well.  Always, nice to hear from you all.   

Laurie