ADH with Family History

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dscjac
dscjac Member Posts: 4
edited June 2014 in High Risk for Breast Cancer

I am waiting an appointment with my Breast Surgeon and I need a little advise. I am 46 years old. I was diagnosed in 2009 with ADH after a stereostactic biopsy followed by excisional biopsy which left a hugh scar and deformity in left breast. I tried tamoxifen with lots of side effects so I discontinued it. In May of this year after my Breast MRI a mass was found in my right breast and I had to have an ultrasound guided biopsy of it. It was a Fibroadenoma. In August I had my mammogram which they saw new clusters and recommended another stereostactic biopsy. This biopsy came back as ADH again in the left breast. My mother had breast cancer twice in the left breast. First a lumpectomy, followed by mastectomy the second time. I had the genetic testing done and I do not carry the gene. I am very tired of MRI's followed by biopsies, followed by mammograms with biopsies. I feel like I am just waiting for the diagnoses of breast cancer. My lifetime risk is around 42% from the risk assesment tools I have found online. My question is if I am crazy for considering Bilateral Prophylactic Mastectomy? Please give me all the resources I need to speak with my breast surgeon, because I am afraid he will be totally against the idea.

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  • shabby6485
    shabby6485 Member Posts: 679
    edited September 2012

    Hi dscjac,

    I don't think you are crazy at all.  After 11 biopsies in 5 years in which I was diagnosed with ALH, ADH and finally LCIS, I opted for a pbmx.  My mother had BC in early 30's however I am BRCA negative.

    For me, it was the best decision.  I had surgery in August and am currently in process of reconstruction with expanders to implants.

    I had 3 consults and all of the doctors recommended the mastectomy.  I know there are other ladies on the board who had a pbmx for ADH and especially for BRCA positive.

    It is a very personal decision.  I can only speak for myself.  No more mammos and breast biopsies in my future.

    Best of luck to you! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2012

    dscjac,

    I was diagnosed with LCIS 9 years ago and my risk is further elevated by family history of bc (mom had ILC).  I do high risk surviellance of alternating mammos and MRIs, took tamox for 5 years and now have been on evista for over 3 years. But I haven't had to undergo any more biopsies in all these years, fortunately.

    Only you can know when enough is enough. If anything more serious ever shows up, I am always willing to reconsider the option of BPMs.

    anne 

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2012

    You may want to talk to a breast surgeon first and/or go to a genetic counselor. My risk was 50%, though "all" I had was ALH, and ADH. My mother passed at 29 of BC. I had a PBM in February at 51, and despite having had all the screenings they found a 1.1 cm IDC. I am negative for the BRCA and BART mutations. No reasonable breast surgeon is going to be against the PBM. Not an easy road. My other option was tamoxifen, but I'm so glad I opted for the PBM. Also your breast density could be a concern, and I think there is a new test out just for dense breasted women, beyond the MRI.

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  • dscjac
    dscjac Member Posts: 4
    edited September 2012

    Thanks for the post and advise. I have updated my original post with two things. I did not put my age on my post and I made a hugh mistake originally. I typed that I do carry the gene and that is incorrect. I meant to add that I do NOT carry the gene. I have now corrected this. I have been tested for BRCA 1&2 only; is there other genes that I could carry that I should be tested? I see my surgeon this afternoon and I really appreciate the advise prior to my visit. I am very nervous and worried about this appointment; I feel like I am waiting on biopsy results again and I am not. This is so hard because people say to me "ADH is not cancer so why are you so worried"! Those comments make me feel like I am crazy. I will update after appointment today.

    Thanks again! 

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  • lila3357
    lila3357 Member Posts: 36
    edited September 2012

    I hope your disussion with your Dr today is helpful. I was diagnosed with DCIS, ADH and ALH in 2009 (let side), 2010 ADH (right side) many MRI's, and biopsies in between and now after the latest biopsy I am told ADH and maybe DCIS (which will be confirmed after lumpectomy)right side.  I went to my breast surgeon last week thinking that she would recommend a more agressive surgical plan and advise a mastectomy.  She did not.  Her opinion was that it was really up to me and my ability to cope with the vigilant watch.  If I felt that I couldnt take it any more and that it was negatively impacting my life then she would consider it. But if it is something I can choose to live with then that was the path she would take.  So,  i was a bit surprised and felt confused at the same time.  I guess I am not really sure what I want.  I am afraid of the "real" surgery but think it is the right thing to do.  ANyway, I am going tomorrow for another opinion ...which I am curious about.  It cant hurt!!  In any event, i do have either a lumpectomy, a lumpectomy and treatment or more than that in my not too far away future..

    I hope your meeting with the Dr helps you to make the decision that makes you most comfortable!! 

    GOOD LUCK !!! 

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  • thatsvanity
    thatsvanity Member Posts: 391
    edited September 2012

    Hi,

    I never thought in a million years I would never have a PBMX, but I did. And I never thought in a million years my younger sister would die of BC at age 41. After a biopsy of ALH I just didn't want to worry and take tamoxifin, and my biopsied breast no longer looked like my other breast so I had the surgery. It has been over a year since my PBMX and I have never thought it was the wrong decision. A genetics doctor, breast specialist, breast surgeon and the plastic surgeon all agreed it was a good idea. I am not BRACA positive but BC is the prevailing cancer for men and women in my family.

    Love,

    Amy Lynn

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  • dscjac
    dscjac Member Posts: 4
    edited September 2012

    My appt. today with my breast surgeon went so well. As I stated earlier I was so worried but I am now completely satisfied and have peace about our decision. My surgeon told me I have 2 options one being continue with biopsy and MRI's and Mammography yearly with possible biopsies if they see anything. Second option was Nipple sparing PBMX. I was so relieved to hear him tell me this was an option and he went on to tell me if his wife was in my same situation she would have the PBMX and not think twice about it. So, now the big task starts with getting the insurance company to approve the surgery. As far as cost, this is much more cost effective then current treatment and then if or when I get cancer the treatments for that would be a lot more then this surgery. After the surgery I will be around 90% risk free of getting cancer and NO more mammograms, MRI's, etc. I am waiting on a callback appt with plastic surgeon while we wait for hopefully insurance approval. I am very pleased with my outcome so far mainly because I have so much trust in my breast surgeon. And when he said this was one of my two options confirmed that I am not crazy for considering it. I would advise anyone considering this to get 2nd & 3rd opinions if your first breast surgeon doesn't agree.

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  • kreativek
    kreativek Member Posts: 58
    edited September 2012

    You are NOT at all cra="Times New Roman" size="3">zy for choosing this option!  Not everyone will choose it and you will find not everyone even agrees with it. But it is YOUR choice to make and it IS a very valid option.  I have a strong family history but tested negative for BRCA.  I had ADH.  Two breast surgeons, a medical oncologist and a plastic surgeon all agreed it was an excellent choice for me if that is what I wanted to do.

    I had a nipple sparing bilateral mastectomy with implant reconstruction four and a half years ago.  I have never once regretted it and the quality of my life has greatly improved.  I don't worry about breast cancer anymore.  The average woman has about a 11% lifetime risk of breast cancer and I now have under 3%.  My doctor and the genetic counselor both gave me at least a 70% lifetime risk of breast cancer.  You will find the risk numbers they give us vary but you probably have been told at least 50% risk.  How do you beat those numbers?  Going from 50-70% risk down to 3%?  It's a very logical thing to do!  I just feel it was far too dangerous for me to still have breast tissue.  I don't even feel like I had a mastectomy, I just feel like I swapped out the insides. 

    The surgery is very doable and it wasn't even as bad as I thought it would be.  The peace of mind was worth it for me.  I encourage you to pursue this option if you think it is right for you.  I am so glad I took this option.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2012

    djsjac - Ok that clears up a lot. I thought "what doc in their right mind would be against a PBM if one was BRCA pos?"

    I'm so glad you have found piece of mind. Congrats. I had no trouble getting insurance to approve.

    The funny thing is my pre PBM risk was at least 50%, The average woman's risk is 11 - 12%. Even with the small IDC they found my risk is now around 5 - 6% due to size and oncoscore. However it still is shakes me up. But at least this way my daughter will be in the high risk pool and taken seriously. (I know that is small consolation, but it is something.)

    What do folks know about the MBI? Is is available yet? I think that might be a good option for a couple of women I know. No one in OK does it.

    kreativek - That is the approach I took all along is that I was just changing out the stuffing (oh and no nips for me, but that's ok.)

    Wishing all you beautiful ladies peace of mind whatever you decide.

    Jill

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  • dscjac
    dscjac Member Posts: 4
    edited September 2012

    Well I received a call today from my surgeon and I now have an appointment with the plastic surgeon. I am really confused once again. I need some more advise. What type of reconstruction options do I have with the nipple sparing bilateral mastectomy. I guess a better question is what do all of you recommend? I really do need the pros and cons!

    Thanks for all of great advice!

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