Prophylactic mastectomy vs. Meds for ADH+high risk

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Meaniejr
Meaniejr Member Posts: 3
edited June 2014 in High Risk for Breast Cancer

I'll start w/some background history.  When my Mom was 50 she was diagnosed with Breast Cancer and had a mastectomy.  In August 2009 one of my sisters was diagnosed w/Invasive Lobular Cancer and had a bilateral surgery at age 45.  My Mom and sister were tested and they have BRCA 1 and 2 w/results: "Genetic Variant, Favor Polymorphism, No mutation detected."  So my geneticist decided that at this point it was unnecessary to test me.

All types of cancer run in my family.  Father died of Brain Cancer, his father died of stomach cancer, Mom had Breast Cancer, and eldest sister has skin cancer (and never laid out in the sun a day in her life).  Needless to say, I've been in the high risk category for years so I have routine Mamo's and MRI's every 6mths.

1.5 wks ago I had 2 benign fibroadenoma's removed and within the tissue attached to it, Atypical Ductal Hyperplasia (ADH) was found.  My oncologist and surgeon believe that b/c of the high risk in my family that the smart choice at this time is prophylactic bilateral mastectomy and remove the chances of this someday becoming breast cancer.  They feel most likely that it WILL be cancer, when in my life...who knows...

I'll be 41 in March and I am done having children, infact I've had a hysterectomy already but I still have my ovaries.  I'm very confused as to whether or not having my breasts removed is the right step at this point.....  3.5 yrs ago I had Mastopexy and implants so it was quite the detailed surgery and I do have major scars from it the Mastopexy itself, my surgeon thought it may be possible for the plastic surgeon to use the same scars.  I have an appt to meet with a new plastic surgeon that specializes with reconstruction Feb. 23rd.    Though I know that this type of surgery will be far more extensive and painful......

Are there other methods and/or avenues I should be looking into such as preventive medications etc.  I'm going to be speaking with my Oncologist today and I'm trying to gather as much information as possible to run past her and make sure I get all the facts I need to make this life changing choice.

Does anyone know if and MRI/Mamo detect when the ADH has changed into breast cancer?

If I am to have the prophylactic bilateral mastectomy I'd like this done ASAP while my girls are still gone during the day at school so they don't need to see me in pain all day, plus by this Summer I want to be healed to spend every day active with them.

I'm sorry, I know reading this it probably jumps around a lot, and I'm just as confused as are my thoughts........

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  • vmudrow
    vmudrow Member Posts: 846
    edited February 2011

    Sorry you are going through this.  Last year I was diagnoised with ALH (precancerous he said) -and the oncologist wanted me to take Tamoxifen for 5 years. The surgeon said I would need MRIs every year which would show everything, but they would biopsy any findings, so that would probably mean a biopsy every year.  I decided to have prophylactic bilateral mastectomis skin/nipple sparing - that was May of last year.  The surgery really wasn't too bad for me, one night in hospital and pain pills for three days.  Ask the oncologist side effects of Tamoxifen - mine said most people do well - but I found some ladies I knew that were on it - and they couldn't stand it.  I didn't want the side effects and more tests and biopsies - sounds like you have been having alot of tests.  Good luck - keep us posted - let me know if I can help in any way - Hugs, Valerie

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  • mdoak
    mdoak Member Posts: 219
    edited February 2011

    I really think this is your decision. Should you choose not to have mastecomies, will the surgeon go in and do a wider excision around the places wehre the ADH was found? Because that is found next to DCIS or cancer much of the time.

    The other thing to think about is having your slides sent to a breast expert. I had ADH that was originally diagnosed as DCIS many years ago... I found out that different labs have different standards for telling the difference between the two, plus it's tricky in and of itself. Obviously, if a breast expert says it's DCIS then the whole landscape changes for you.

    I think you should take your time and review all of your options. Good luck.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Imaging tests such as MRI, mammo or US cannot tell you when or if ADH has become DCIS or invasive bc (or if it ever will); only the tissue taken during a biopsy and examined under a microscope by a pathologist can reveal a definitive diagnosis. And yes, there are other options besides PBMs---close monitoring and preventative medications. Since you have a strong family history of bc with your mom and sister, you might want to consider talking with you physician about taking tamoxifen to decrease your overall risk of invasive bc. I was diagnosed with LCIS 7 years ago (a step further along the bc spectrum with a much higher level of risk) and have family history of bc (mom had ILC); even with the elevated risk of that combination, all my physicians have said that bilat masts are not medically necessary. It remains a very personal choice; my choice is not for everyone, and neither are PBMs.  But I can change my mind at any time; mastectomies are an irreversible choice. Be sure to take your time, research, get 2nd opinions---and make your decisions out of knowledge, not fear.

    anne

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  • HelloFromCT
    HelloFromCT Member Posts: 280
    edited February 2011

    If I were you I would definitely go for the PBM.  You are most likely a candidate for skin/nipple sparing and you can have immediate recon with great results.  I had ADH with family history and chose to have PBM with immediate DIEP recon.  It was a great decision, and it eliminated most of my risk and the need to take Tamoxifen. 

    It seems like a hard decision at first, but when you stop and consider all of the options and possibilities, it makes sense.

    Good luck in whatever you choose.

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  • Sandy105
    Sandy105 Member Posts: 216
    edited February 2011

    My BS had recommended a PMX due to my personal breast history as well as my family history. My mother died of BC and her mother also had BC. A score of other females in my family have also had BC both maternal and paternal. The oral chemo drugs are not really as option for me for I had a previous mini-stroke and these drugs do increase the risks of blood clots for some patients and I am in that group.

    I had the first precancerous tumor removed about 25 years ago and the second - a calcified lymph node - removed about 10 years ago. Since that time, I have had nothing but abnormal mammys, call backs, abnormal ultrasounds, and abnormal MRI's. There continues to be "benign appearing areas" in my left breast which do not go away. We could opt for another biopsy but there are too many areas to biopsy... I am so tired of getting letters from the Breast Center with another call back for something else. 

    My BS has told me it is not a matter of if I will develop BC, but merely a matter of when I will develop it. I trust her for she is quite good. I also like her - I just don't like what she is telling me. She has told me I may have the opportunity to avoid chemo and rads if I have this procedure performed. I know there is a risk of developing BC even with a PMX but know it is lessened greatly.

    For those of you who have had to make this decision, how did you decide to do what you did? Are you happy with your decision now that you have made it? What advise do you have to offer to a newbie is this arena? 

    I believe I have made my decision, but want to know about what you (in similar situations) have decided to do.

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  • bebe51
    bebe51 Member Posts: 29
    edited February 2011

    I too was dx last Feb with ADH.  Strong family history of bc and BRCA2+.  I was given a choice of tamoxifen or high risk monitoring.  I chose monitoring for now.  I don't like the SE given with tamoxifen and just found out that one of my aunts who had been dx with bc 2 years ago (BRCA2 negative) she chose lumpectomy with no radiation, had re-occurred (sp?).  She had just finally figured out what she was going to do when she was taken to the hospital with a mini stroke.  Breast surgery is delayed until they can figure where the stroke happened. So now I don't think I want to do tamoxifen, but I have been heavily leaning toward PMX with recon.  Just have to figured out what kind and I don't like the idea of being under for  long periods of time.  I go back and forth, back and forth.  It is exhausting but it is a choice that you will have to make.  I come on here to read about choices and what others have done.  It is nice to come on here and read about others who have journeyed through this before us and have somewhat paved a way for us with their knowledge and their choices.  They have helped MY research and I am more in tuned to what is out there.  Good luck

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  • Sandy105
    Sandy105 Member Posts: 216
    edited February 2011

    Bebe,

    Thank you for your imput! I am indeed having a very difficult time deciding what choice is the best for me. I see the PS tomorrow to get his opinion about what "type" surgery he would perform. If it is NSM, I think it is a definite go for me for the oral chemo is just not an option. (I don't know if I would choose this in any case...) If a NSM is not an option, I really have no idea what I will decide to do.

    I also do not like the idea of a very long surgical procedure but have to weigh this against the almost certain surgery that is likely to come, and chemo, and radiation which would likely be necessary..Somehow, it seems both sane AND crazy to sign up for major surgery when I don't yet have BC, but just hope to prevent it. Decisions, decisions, decisions...

    I am convinced I will never have another normal Mammy, US, or MRI for I haven't had one in years and I am so very tired of waiting for the results to come for they are never good. I have tried to think positively, and this may be helping for there is no diagnosis of BC just yet.

    It is indeed a difficult decision to make and there are only a few gals who have responded to what they have done in this situation. I will post again tomorrow after having seen the PS to let you know what he has recommended.

    Hugs,

    Sandy

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  • Sandy105
    Sandy105 Member Posts: 216
    edited February 2011

    Bebe,

    Thank you for your imput! I am indeed having a very difficult time deciding what choice is the best for me. I see the PS tomorrow to get his opinion about what "type" surgery he would perform. If it is NSM, I think it is a definite go for me for the oral chemo is just not an option. (I don't know if I would choose this in any case...) If a NSM is not an option, I really have no idea what I will decide to do.

    I am convinced I will never have another normal Mammy, US, or MRI for I haven't had one in years and I am so very tired of waiting for the results to come for they are never good. I have tried to think positively, and this may be helping for there is no diagnosis of BC just yet.

    It is indeed a difficult decision to make and there are only a few gals who have responded to what they have done in this situation. I will post again tomorrow after having seen the PS to let you know what he has recommended.

    Hugs,

    Sandy

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  • vmudrow
    vmudrow Member Posts: 846
    edited February 2011

    Sandy - I sent you a PM.

    Bebe and Sandy - good luck to both of you in your decisions.  I chose the PMX and have not regretted it - no cancer, but I didn't want to wait and worry for years thinking I would get cancer.  Let us know what you decide and if I can help or answer any questions - I would be happy to help.

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  • bebe51
    bebe51 Member Posts: 29
    edited February 2011

    I don't want to wait for cancer either. 

    Thanks Valerie, you are so helpful.  I go in for my yearly mammo on the 23rd.  I get to start rotation again.  Woo hoo!  Will see what shows and then off to genetic counselor again.  Not sure why I have to do that again because we already had that talk last year and I know my risk, etc., I need to call today and find out what that is all about. 

    All the best

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  • kjbrown92
    kjbrown92 Member Posts: 115
    edited March 2011

    I am a little further along the same path. Last spring, I had a lump which was ADH. My mother had BC at age 48, and my father's mother had it in her 80s (died of it). I had BRCA testing and was negative. Mine was a 4cm x 4.5cm lump that had gotten to that since the mammogram 7 months before, so it seems to me like it was fast growing. For me, I tried the tamoxifen. And for me, it was horrendous. Agonizing hip pain and horrible mood swings that had me yelling at my children all the time. I'm 42 (41 when the ADH was discovered), with 3 kids, and am done having/nursing children. I ended up with skin sparing prophylactic mastectomy 11/2. I will not get nipples reconstructed, but will opt for 3D tattooing instead, as I can't wear a bra due to muscle spasms. I will have my exchange 4/4 and I'll be done with surgery. I felt like a timebomb and have other health issues to worry about (chronic lyme, heavy metal load, compressed nerve in my neck, etc.) this one I could actually do something about. It's a very personal choice though and not an easy one in any case. I did a lot of research here and on the FORCE website. Good luck.

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  • vmudrow
    vmudrow Member Posts: 846
    edited March 2011

    kjbrown - thanks for sharing your story.  It makes me think I made the right decision of having masectomes with only ALH - I didn't feel right about taking Tamoxifen.  You will love getting rid of the TEs - good luck with your exchange surgery!!

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  • Sandy105
    Sandy105 Member Posts: 216
    edited March 2011

    I was not a candidate for either of the oral chemo drugs due to other medical probllems. So, I saw the PS yesterday, and felt very uncomfortable with him. He was not at all what I had expected... It wasn't that there was anything wrong with him. Rather, I just felt nothing was right. He thought I needed the PMX but he was simply the wrong PS for me. I guess this happens sometimes.

    He does not do the alloderm onestep procedure and this is what I want for it is one and done - in most cases. I will have the PMX for I feel like I am in a combat zone dodging incoming fire. I have never run a marathon, but feel as if I am running one now and the big C is just behind me and ready to overtake me if I stop for water.

    So, I am back to square one again. I guess we have all been on this square too many times so everyone knows how this feels. Back to research, more reading, more guessing, and more praying the right PS will magically turn up soon. (I wish I believed on wishing on a star but I an too old for that.)

    I will let everyone know what happens. I am in Nashville, TN. My husband wants me to go to MD Anderson in Huston and I am considering this... Any other suggestions from those of you who have had PMX/NSM with alloderm, please share with me how this has worked for you. A couple of you have already done so and I SO apreciate this willingness to share!

    Hugs to ALL,

    Sandy

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  • mikita5
    mikita5 Member Posts: 373
    edited March 2011

    Hi Sandy,

    Just happened upon your topic. Have you considered DIEP reconstruction? It's so natural and real looking/feeling. Just a thought to ponder since I see you're still researching...

    Hugs and prayers your way.

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  • mikita5
    mikita5 Member Posts: 373
    edited March 2011

    Sandy,

    My situation is different than yours, but like you, my family is full of cancer. My Mom died of ovarian cancer, her sister with bc, another that survived bc, only to be diagnosed again with bladder cancer, which took her life. I have multiple first cousins with breast cancer, yet my testing came back negative. No BRCA1 nor 2.. My surgeon said there are other strains out there that just haven't been discovered yet, but when they are, I will surely have one of them.. Anyhow, after the negative result, my oncologist (and everyone else) didn't think I should go with the bilat mx. I knew it was best for me. It was what I had to do.  After surgery, the pathology report came back with 2 more spots of DCIS, same breast, that was never seen on mammogram. 

    I am a natural worry-er... I knew I couldn't go thru test upon tests and call backs. Once was enough.. I had the 12 hr surgery with immediate DIEP reconstruction. That will be 2 yrs ago on the 30th of this month.

    Take your time and read, read, read.  I found all I needed to know on this site....

    Wishing you peace with your decision...

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  • Sandy105
    Sandy105 Member Posts: 216
    edited March 2011

    Hello Mikit,

    Thanks so much for your responses. I am not a candidate for any type of tissue or muscle implant for I haven't an ounce of tissue to spare and I have other medical problems as well which make a longer surgery or multiple surgeries too risky for me. The BS and PS both at least agree on this.

    So, I am now startng at square one again attempting to locate someone somewhere who does the durgery I really need. I have a call in to MD Anderson now, and am awaiting a return call to see what they say about all this. I am most fortunate in that I can go anywhere and I realize this is not the case for many or us so I am indeed lucky in this respect.

    Hopefully, I will hear from them today and will post what if anything they tell me.

    Hugs and God Bless Each of You!

    Sandy

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  • soccermomofthree
    soccermomofthree Member Posts: 163
    edited March 2011

    I had NSM/PMX with alloderm.  I have not had any regrets.  I have a strong family history and the doctor wanted me to take tamoxifen for prevention.  Yes, the MX was more difficult than I thought but I really didn't have the right pain meds so...I took Tylenol.  Not too good.  Anyway, It did take time to heal for sure but after about one month I felt pretty good.  I "did life" after about one week except for driving.  It felt like a long time when I was in the moment but now looking back I am done and it has not even been a year...compared to the constant monitoring and waiting for cancer like I was doing before this.  No more mammograms and MRIs happy days!

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  • Sandy105
    Sandy105 Member Posts: 216
    edited March 2011

    I have had a call from MD Anderson but do not yet have an appointment scheduled. They will call tomorrow about this but the nurse with whom I spoke thought the "benign appearing areas" on my left breast could not be ignored. She suggested I take the first available appointment. I will do this for I don't think this can be ignored either. What is it? Why is it there? How can I know what it is if no one investigates more? So I shall await their scheduling call tomorrow.

    Has anyone had experience with MD Anderson for PMX? They won't tell me if I am a candidate or not and I can understand this for they have not seen me nor any of my records. So, this at least makes sense.

    I would still really like to have suggestions of BS, PS, Hospitals any of you have used for NSM/PMX. I really have come to believe I will find the best recommendations here for you have experienced this. If at all possible, I would love to hear from any of you who have had Alloderm one-step procedures!

    Thanks and have a wonderful night!

    Hugs to all of you,

    Sandy

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  • bebe51
    bebe51 Member Posts: 29
    edited March 2011

    Sandy,

    I sent you a looonnngggg PM:)

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  • Sandy105
    Sandy105 Member Posts: 216
    edited March 2011

    I did receive the PM and have MANY questions for you.... Bet you guessed that already! Thanks so much for the info and I look forward to having you sharemore with me. You are so kind to do this!

    My appointment with MD Anderson is scheduled on Monday, March 14 at 8:30 AM. It is for a cousult and the nurse has told me I will likely have another Mammy, MRI, US and probably will require a biopsy as well. This is fine with me for I want someone to tell me what these "benign appearing areas" actually are. Her opinion was not that it was something we should "just wait and see if anything more suspicious happens to turn up latter..." I couldn't agreed more with this.

    Does anyone happen to know exactly why some docs seem to just take a wait and see approach when there is certainly something abnormal on a Mammy, MRI, or US?

    Hugs,

    Sandy

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  • bebe51
    bebe51 Member Posts: 29
    edited March 2011

    Now don't get me wrong.  There were concerns with my dx, in fact they jumped on me for this research, that research and we are looking for women like you. I finally had to say no to a couple of them.  Just overwhelmed at the time.  My Dr has told me what she thinks would be best and I do have appt with her March 23 at 8:00 for checkin, 8:30 for mammo (so early to smash the girls) and consult with Dr.  Sandy I think you will like her.  She definitely knows her stuff.  Anything you need just let me know.  I think you and I are on the same path.  I just need to find out genetic testing and then make my decisions.  Gyn appt on the 15th will talk to him about ovaries.

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  • purelove5
    purelove5 Member Posts: 26
    edited April 2011

    I just stubbled upon your post. I live in Houston. I don't know if you have had your surgery or were able to get the help you needed in Houston. My Mom has had breast cancer 3 times....her 3rd being about 5 years ago when it was discovered during her reconstructive mastectomy. She had the one where they use the admoninal tissue for recon. I believe DIEP or SIEA. Anyways. The doctors here in Houston have saved her life...a few times! I am 23 & found out May 2010 that I am brac1+. I have been seeing my Mom's doctors/surgeons & they have been beyond helpful. My first MRI was 6 months ago & they found a benign cyst. I go back next month from my 6 month MRI to check on it. It has been very scary cause I just want it out of me. I am going to be getting a reconstructive mastectomy with implants most likely this year. It has been very very hard being so young & going through this. I have anxiety attacks just going to the dr. I fear surgery but I think I fear cancer more. I am fortunate to have this oppurtunity to not go through what my Mom has or for my kids one day have to see me go through what I saw my Mom go through. *

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  • purelove5
    purelove5 Member Posts: 26
    edited April 2011

    I really meant "STUMBLED" not stubbled. haha *

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  • soccermomofthree
    soccermomofthree Member Posts: 163
    edited April 2011

    Purelove5 my mom had breast cancer two times then went for the mastectomy.  I was so glad because I didn't want her to go through it again.  You are very young but I understand your concerns.  I had a prevenative mast. w reconstuction last Aug.  I am sure that you will have great peace of mind as you age. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    I have LCIS and have had two "dx.'s" of it.  I just went in for my third biopsy-which did come back negative. I don't think I can stand the not knowing during the week to two weeks of waiting anymore-it makes me crazy. So I am seriously considering prophylactic mastectomy....mostly because I don't want to face chemo and radiation.  My BS says I'm "high risk"  LCIS and very dense breasts.  I'm not good living in the ambivlence range... Suggenstions?  I would do reconstruction and have already seen a plastic surgeon..

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  • KellyMaryland
    KellyMaryland Member Posts: 350
    edited April 2011

    rehm- I was high risk (for PLCIS) and recently had this surgery.  I'd be happy to talk with you about it. One thing that really, really helped me was meeting with a medical counselor.  She helped me sort out all of the information but more importantly all of my feelings about it.  All the best, Kelly

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    Kelly,  I have an appt. with a therapist this week, but I am so inundated with everybody's "opinion" about whether this is the right decision for me or not, I'm exhausted.  I would love to have an opportunity to talk with someone who has actually been through this.  Is there a good way to be in touch-private e-mail etc?  Or do you prefer to talk via this chat line?  Pat

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  • Sandy105
    Sandy105 Member Posts: 216
    edited April 2011

     rehn,

    I had a PMX three weeks ago because I was at very risk for developing BC due to my personal breast history as well as m family istory. I am happy to discuss anything with you for there are many different things to consider before making the decision. If you like, feel free to send me a private message. I am happy to answer any questions you may have.

    Hugs,

    Sandy

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  • vmudrow
    vmudrow Member Posts: 846
    edited May 2011

    Meaneijr - just wondering how you are doing and if you have decided on any treatment?

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  • momoftwo526
    momoftwo526 Member Posts: 151
    edited June 2011

    Just when I thought it was safe to come out of the water!  Stumbled into these posts.  Came here because I have always been high risk too and wanted to see what you had to say here.  My hx -- Mother died of breast cancer at the age of 48, older sister diagnosed at age 45 had bmx, one with cancer, the other prophylactic. She had breast recon with sil implants.  She got in a car accident shortly after and one of them broke and she had sil in her body cavity.  Caused a lot of issue including fibromialgia Her twin died a year after my mom of leukemia at the age of 24.  On my father's side, of his 5 sisters, 2 had breast cancer, 1 had ovarian, one had lung cancer and one had brain cancer.  One of his brothers had prostate cancer.  I have a least 5 first cousins who have had breast cancer, 1 died at the age of 38 with inflamatory BC. Of the rest of my sibs, I have 1 brother who had prostate cancer, and a sister who had skin cancer.  Count so far has been out of my sibs, 4 of 8 with some type of cancer. 

    Now for me, I have always been treated as high risk and had first mamo at the age of 30.  Started having problems at age 35 with fibrocystic breast disease.  Dense, lumpy breasts are not good for finding lumps on your own. Since then, I never have a normal mamo.  Always have a call back.  In 2003, 3 small lumps in left breast were biopsied, they were benign, but then had to start getting mamos every 6 months. Also had abnormal pap and had uterine biopsy. Negative, but have to have paps every 6 months.  In 2006, drainage from the left breast, started getting MRI's and had cyst aspirations.  Went on tamoxifen, but obgyn told bd to take me off because of risk for uterine c.  BD suggested genetic testing, which I did and surprisingly, tested neg for the known genes, however, because of HX, said it was likely I could be positive for an unidentified strain.  She suggested bilateral prohylactic MX, but, I just couldn't bring myself to do it.  Brings me to my 2011 mamo.  They find a problem in right breast.  Did a core needle biopsy that came up negative, however, BS wants to do lumpectomy because tissue was abnormal and he felt I should get it out so it didn't turn in to anything.  So they do that and biopsy the tissue.  Guess what!  It WAS cancer!  ILC, less that 1cm, grade 2, and LCIS.  I kinda am freaked out.  Now getting additional testing, but BS believe he got all of cancer, but wants clearer margins, so he gave me some choices.  Remove more of surrounding tissue, do sentinal node biopsy, get rad treatment (35), and take a cancer preventing drug for 5 yrs or more.  Or, right breast MX, which possilble rads, sentinal node biopsy and 5 yrs of cancer prev drugs.  Or, BMX with or without recon and sentinal node biopsy.  Believe it or not, I was still on the fence about this.  I have been reading these and other posts and now am thinking maybe I should go with BMX with recon.. Don't know why I felt I had any other choice,  really.  I am now 58, and I have plenty of tummy fat I can harvest to make new breasts!  Hey, if they had a donor program, I could donate some (LOL).   Meaniejr --- What did you decide???

    Phyllis

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