ADH/ALH Are you doing anything different after diagnosis?

Betsy - If I had known more about breast density ratings I might have done something sooner. Instead I continued to go to the same breast cancer screening doc for 20 years although I suspected she and her equipment were outdated. My next decision is to "nipple" or "not nipple". I am pretty happy with the Barbie look, and the thought of no bra is awesome! Jill

ED----I was diagnosed (also at 46) with LCIS 9 years ago; my risk is further elevated by family history of bc (mom had ILC), but even with that high risk combination, all my docs still felt bilat masts too drastic for the situation. I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, I took tamoxifen for 5 years and now have been on evista for over 3 years and have tolerated both meds well overall.

They used to say with ADH/ALH and no family history, only yearly mammos and breast exams, but it seems that tamox is being recommended more often now even without family history. It's a good idea to sit down with your oncologist and discuss risks and benefits for your particular situation. If you do take tamox, make sure to get a yearly transvaginal US to monitor both the uterine lining and the ovaries.

anne 

Anne and Betsy - thanks for the advice.  I have the 2nd opinion appt. with the Medical Center's High Risk breast clinic upcoming on 9/19 and am making a list of the questions I need to ask.  I have read, and my breast surgeon confirmed, the information that it is postmenopausal women that have a higher risk of the uterine cx than premenopausal...but I intend to make sure I am being checked regularly even though I am currently premenopausal.  Unless something completely unanticipated is said at this upcoming appt., I have decided that I will begin taking the tamoxifen after I speak with them.  It has only been two and a half weeks since the wide excisional biopsy and I just needed the time to heal a little bit more from both the physical and emotional whammies that all of this has entailed.  Physically I am continuing to improve and emotionally I can at least think and talk about it without becoming a wreck as much as I did when I first found out on 8/14.  I am trying to keep a positive outlook and am definitely praying that I will be one of the women that tolerates the Tamoxifen fairly well.  Wishing all of you well -

Does anybody know if a diagnoses of ADH/ALH and chemoprevention use of tamoxifen is something that can prevent one from being able to obtain a reasonable life insurance policy?  I have not filled the prescription yet...just not sure what to do about this.

I would also think there wouldn't be a problem, as ADH/ALH is not  a diagnosis of cancer. Do they ask you to list your medications? I don't think tamox should cause any reason for a denial, but if you are really concerned, apply for the life insurance first before starting on the tamox. (I haven't filled out any life ins. forms lately, but I have never had any issues with my LCIS and my taking tamox on any other documents.

Anne 

Thanks for the tips.  I had filled in the paperwork back before I knew anything about the ADH/ALH (actually a couple of months before), but the company was a bit behind in getting the policy enacted and now this happened in between.  Just wasn't sure if this would come up if/when they do the bloodwork and questions that can sometimes be required for these policies. Hopefully will have some resolution to this within the next 7-10 days and will share what I find out.  I just hope none of this will even have to come up!  

Hello Everyone.  Well it seems as though I need to reach out for support and knowledge yet again.  I had my second opinion visit with the High Risk breast center (@UVA Medical Ctr) yesterday and they upgraded my pathology to LCIS..on BOTH biopsies that were done last month.  I confess I'm in a bit of shock as I had just begun wrapping my brain around the ADH/ALH dx.  There were several questions that I wish I would have asked - but I didn't even think about them until after I was out of the office as I was just trying to absorb all that he was saying.  He told me the following main points:  I have (3) choices moving forward, only one of which he truly recommends:  1- is to go the "watchful waiting route (i.e. wait for any cancer to develop and catch it early by the 6 month exams), 2- have bilateral preventative mastectomy (he says this is the "old way" of treating this) or 3 - go the chemoprevention route which for me would be tamoxifen (this is the route he recommends).  He also stated that he thought it would be foolish for me to have my imaging done anywhere other than a medical center that specialized in treatment and monitoring of high risk women...of which he said that I am now solidly a member.  He said that I could consider doing ALL of my f/u through them (the 6month appt.s with alternating MRI/Mammos and clinical breast exams) OR I could just do the imaging through them and retain the Breast specialist who had done my biopsies at the community hospital.  Here are the questions I wish I would have thought to ask:  1- Since it is LCIS, should they have typed the cells so we knew what they were sensitive to? 2- Why didn't he mention radiation as a treatment? 3 - Since it is LCIS, should I worry about the margins?  Also...should I just totally switch over to the high risk clinic at the medical center (a teaching hospital) or should I consider just doing the imaging there and keep the breast surgeon who thus far has seemed to do a good job?  (if I switch to the medical center - I would be not be seeing the breast specialist surgeon I saw yesterday...but those doctors working under him who he has set up in a clinic setting to manage people like me).  I am SO confused....so many decisions...feeling a bit overwhelmed.  Can anyone share that may have had a similar experience?  BTW - I did stop yesterday and fill the tamoxifen rx....just haven't taken the first dose as my 27th anniversary is this weekend.  I appreciate any help that some of you who have more experience in this can provide to me. 

Warm Regards,

Liz

And...one more question:  Should I be seeing an oncologist?  Sorry this is so scattered - very representative of my state of mind right now.

ED---in answer to your questions:

no, radiation is not given for LCIS

no, they do not worry about margins with LCIS

most all LCIS is estrogen positive

LCIS is now your diagnosis,  as it is more serious than your ALH or ADH

yes, you should see an oncologist--they can manage all your follow-up studies and meds.

I do not go to a "high risk clinic", but I do high risk surveillance of alternating mammos and MRIs every 6 months, with breast exams on the opposite 6 months (one by my gyn and the other by my oncologist.), so essentially I am "seen" by some method every 3 months.

I took tamoxifen for 5 years and now take evista; I would just recommend a yearly transvaginal US while on tamox to monitor both the uterine lining and the ovaries.

feel free to PM me with questions if you like.

Anne 

ED... LCIS is lobular carcinoma (cancer), not precancer (ALH/ADH).... I don't know a ton about LCIS, but DCIS is always removed, not monitored. Just because its in situ doesn't mean it will stay that way. And all the imaging in the world can't catch something as its on the verge of becoming invasive.

a) I would see an oncologist

b) I wouldn't start tamoxifen until you have met a MO (medical oncologist) mostly because if he/she recommends surgery, you would need to stop the tamoxifen due to its risk of clots

c) I agree that you should go to LCIS threads and do some research.

Happy Anniversary!  

I love your attitude!

Hugs.

ED2012 - sorry it is LCIS   I was sent to oncologist for ALH - so I'm sure you should go.  One question I would ask is if you had a double masectomy would you have to take Tamoxifen?  I really didn't want to take it and decided for PBMX, so no Tamoxifen or mammograms etc - and  like I said I had ALH not LCIS - just another option, although sounds like your doctor would discourage that course.  Good luck with all your decisions.