ADH AND ALH advice

kimmiecakes57

ADH AND ALH advice

kimmiecakes57

hi everyone...i am needing some support and advice.  my mom was diagnosed with bc in 9/07, had a double mastectomy 12/07.  they believe hers was caused by hormone replacement therapy.  because of her cancer, her surgeon strongly advised my 2 sisters and i to get mri's.  (we all were current with our mammograms). theirs came back fine, but mine was suspicious. so i went for a mri guided core biopsy. that came back as ADH.  so, the surgeon wanted to do a surgical biopsy. i had that done and they removed 2 fibroids (not the first time i had those. had some removed in my 20's) as well as a "orange" lump.  pathology said this was ADH and ALH. the doctor wanted to get clearer margins, so a month later i had the same surgery. then i was put on tamoxifen and told they wanted to see me every 6 months to check.  i went for my recheck in march and the mammogram showed micro-calcifications.  then they had me go for a mri the same day. it showed the same.  so here i am, 1 year later and am freaking out a bit...do i want to stress out 2 times a year for the rest of my life?? or should i have my breasts removed now and call it good??  i also should tell you that i am 50 now and have been dealing with various breast lumps since i was 20 and i am not sure i can do this another 30 years...has anyone else dealt with this?? i would appreciate hearing from anyone that can enlighten me and help me figure this one out.  thanks for your time, kim

mtbmom

Kim- I'm sorry you've gone through so much, and in such a short time.  I wish I could do some enlightening, but instead I'm kind of in the same boat. I have a lot of bc in family, including mom, and ovarian cancer as well.  About 6 yrs ago I started with the "suspicious" areas on my mammos, and have been going back every 6 mos.  I had a needle biopsy Dec06 that came back ok, but then was back under the needle Dec07, and it came back ALH. They also found micro calcs on my MRI in Jan.  My breast radiologist is very diligent( I love her!), and she didn't want to wait for this, so sent me to a breast surgeon.  Excisional biopsy came back ALH & LCIS.  I started Tamox in March, and now have to back for a biopsy of the other breast-micro calcs that look suspicious on the mammo I had two weeks ago.  The way I figure it, by the time they're done with all the biopsies, there won't be anything left for a masectomy!  I will go through the next biopsy in 2 weeks, and see what they find.  Then I've got a lot of thinking to do- I've had a rough time with the Tamox so far, and don't know if I can do 5 yrs on it.  Maybe between the two of us, we can find answers for each other!  hugs- Denise

Morocha

Kim:

I have a friend who had your similar situation.  However, she didn't have any cancer history.  She is 43.  She opted to have both breast removed last September.  If you see her now; you would never guessed what she went through.  She looks amazing, had reconstructive surgery and got to choose her breast size, something she is very proud off.  Her response to me when I asked her why she decided to do it, "Peace of Mind and better breast" she responded. After two kids, she felt her breast had taken a beating from breastfeeding.

 Take it for what is worth! 

You have to put in on a scale, do you want to see the doctor twice a year and deal with the waiting of not knowing? Only you can decide and whatever way you do decide, it's the right decision-no second guessing!

Good luck!

ophelia

Hi Kim, your story is the same as mine.  I too was being watched every 6 months and on tamox. for 2 1/2 yrs. and with every mamo came another biopsy or ultrasound or more micro calc.  My last biopsy in June of 07 showed LCIS. 

 My surgeon was very candid with me and said that if she were in my shoes she'd be considering a PBM.  I took several months to think about it and decided that it was time.  I just couldn't imagine going through this every 6  months and it didn't make sense to me to wait.  My goal was to avoid (if possible), not wait.  I had a my skin sparing mastec. on January 14th with immediate SGAP reconstr.  I am very happy with the look and feel of my new breasts and I have absolutely no regrets. Most importantly, I have piece of mind. My risk is not gone completely, but it's considerably lower. 

This is not a decision to be made lightly, and it's not right for everyone.  It was for me and I would do it again in a heartbeat.  Please feel free to PM me if you have any questions for me.

Best wishes in your decision making.  Be well...

kreativek

Hi....I could have pretty much written your story myself.  I had ADH and no ALH though.  My mom had breast cancer 23 years ago and is fine today.  I've had 3 biopsies in 15 months along with almost every available screening test.

It's a very personal decision to make; only you know when you've had enough and are willing to exchange "surveillance" for a preventive mastectomy.  I'm in the process and meeting with doctors in order to schedule a preventive bilateral mastectomy with immediate implant reconstruction.  I am so "done" with these breast that I have no problem trading them in for some good fakes.

There are MANY women in this place and willing to trade in their natural breasts for piece of mind (and some good imitations).

Kris

kreativek

Hi....I could have pretty much written your story myself.  I had ADH and no ALH though.  My mom had breast cancer 23 years ago and is fine today.  I've had 3 biopsies in 15 months along with almost every available screening test.

It's a very personal decision to make; only you know when you've had enough and are willing to exchange "surveillance" for a preventive mastectomy.  I'm in the process and meeting with doctors in order to schedule a preventive bilateral mastectomy with immediate implant reconstruction.  I am so "done" with these breast that I have no problem trading them in for some good fakes.

There are MANY women in this place and willing to trade in their natural breasts for piece of mind (and some good imitations).

Kris

austin2k3

Just the thread I've been looking for!!! God bless you all!!! I'm waiting on MRI scheduling after excisional biopsy for ADH which came back B9. DCIS in other breast last summer. Lumpectomy with less than 1mm margins but no room for more. 30 rad treatments.

Oncologist wants to put me on Tamoxifen but after reading aboaut the s/e I'm not sure. I thought Tamo was for er+ which I'm not. Kreativek, you totally ROCK!  I am feeling the same way although the decision hasn't been made. Any thoughts about the Tamo?

kimmiecakes57

hey austin, i started tamoxifen last july.  i had a hysterectomy in 2004 for endometriosis, so i have had hot flashes since then.  as far as the weight gain, i thought it was just me stress eating...i do take trazadone to help me sleep.  without it, i was awake most of the night, only sleeping approx 2 hours a night.  so, i figured i was better able to deal with the stress of it all with a good nights sleep than be stressed out and tired! i have been on trazadone since sept.  i have has several mri's and they are a piece of cake, just loud. my oncologist told me that taking the tamoxifen cuts your chances in half of developing cancer, so, what ever the side effects are, i am just going to deal.  i go for my 2nd opinion tomorrow in boston. i will let you know how i make out. thanks for all your imput, everyone. stay strong...kim

austin2k3

Kim, Good luck tomorrow. You know, this just doesn't seem to end. Know that I'll be sending good thoughts your way and please do let me know what's said. God Bless.

kimmiecakes57

i know exactly what you are referring to when you say it just doesn't stop...after dealing with this for 32 years, i am ready to say "uncle"...thanks for the good thoughts and support...kim

jade127402

I was diagnosed with ADH and went to see onocologist who spent a great deal of time with me explaining everything.  She did a risk assessment and mine was way over the norm and I decided to take the Tamoxafin.  However, I am having trouble sleeping and experiencing headaches and waking up with muscle cramps in my leg.  I do not like what this drug is doing but don't feel I have any other choice. What I am reading too is that people have taken this drug and still get cancer or have problems every year at their mamagram.  Any advice would be good.  I have only been taking this drug for a few weeks but so far I don't like it and don't feel like myself.

leaf

Everyone is different. Everyone has different risks, and will have different benefits. Some people tolerate tamoxifen well, while some do not. Some find ways to work around tamoxifen side effects (*if* there is a way to work around some of the side effects), and some do not.




I found biofeedback the most effective remedy so far vs insomnia. No, it doesn't work all of the time.
It also helps me with stress management.



There is hardly anything that doesn't have some risk. There are always people who will get cancer, because cancer is a very complex disease, and has many different causes.




It is not inevitable that women with ADH or ALH or LCIS will get breast cancer, or will have trouble with mammograms every year. In fact, in this one paper, the Port study (Ann Sugr Oncol 14 (3) 2007, 1051,
they looked at 126 AH patients and 252 LCIS patients over 6 years, In this paper, they opine that women with ADH or ALH have a lifetime risk of about 20%, compared with an average woman's risk of about 10%. In this group, a total of 77 biopsies were performed over 6 years. This means about 20% of the population had a biopsy over 6 years, which equals about 3% per year. ( More than half of these patients had LCIS too. Half of this population also had MRIs, which generate a lot of false positives.)

A total of 14 women had breast cancer (DCIS or invasive). 3 of these 14 women had atypia (no LCIS). So if you take these numbers and punch them in a calculator, you get about 0.4% incidence of DCIS or bc/year for women with atypia.



None of these 3 women with atypia who got breast cancer took tamoxifen or raloxifene. 3 out of the 11 women with LCIS who got breast cancer took tamoxifen or raloxifene. Of course, these numbers are too small to mean anything, but its the only study I've found about atypia or LCIS that I can get specific information about each person who got bc.


Now, of course, you may not be like any of the women in this study. And your experience of tamoxifen may be great, or it may be horrible. It is a very individual decision.


Leaf (with LCIS and ALH, on tamoxifen)