Need advice

Kristen13

Hi.  I am considering a bilateral prophylactic mastectomy with reconstruction but cannot make the final decision!!  For the past 12 years, I have been through surgeries, biopsies, screenings, etc.  My grandmother died of ovarian cancer at 62, my mom is a breast cancer survivor, diagnosed at 55.  I have had 8 biopsies and am monitored every 6 months with alternating mammo/ultrasound and MRI. My biopsies have come back as papillomas, fibroadenomas, radial scars (twice) and the latest one in March 2012 showed Flat Epithelial Atypia. From what I understand, there is not much information on FEA.  My breast surgeon has been wonderful and is leaving the decision up to me as it is a personal choice at this point. I think she feels that I should just keep going through with the testing but is willing to do the surgery if I choose. I am just so tired of all the testing and worrying.  My family and friends all tell me to go ahead and get the surgery but I want to be absolutely sure that it is the right choice for me.  My biggest fear is that I do not want to wake up one day and wish that I had done something when I had the chance.  Any advice is greatly appreciated!!

Beesie

At this point it appears that most or all of your conditions may be related to having fibrocystic breasts. About 60% of women have fibrocystic breasts; some get away with few problems but others - like you and I - have lots of problems and require lots of call-backs and biopsies. But having fibrocystic breasts is actually considered normal, and in most cases it doesn't increase breast cancer risk, or it increases risk just a small amount (as the atypia might).  The bigger question is whether your risk is higher because of your genetics. 

Has your mother had the BRCA test? If not, I'd recommend that she have it. If she is found to be BRCA positive, then you should be tested. If your mother is BRCA positive, there's a 50% chance that you will be too, and that could seal your decision to have the PBMX. But there's also a 50% chance that you won't be positive and that could change your decision. The situation is unfortunately more complicated if your mother tests negative for the BRCA mutation.  You could still be tested but it would be less likely that you would be positive if your mother is negative.  You could have inherited the mutation from your father's side of the family (it's 50/50 which side of the family you inherit this gene from) - but not from your mother's mother since the mutation does not skip a generation; it only goes through families in a straight line. So if your mother is negative, then it's not known what might have caused her BC - was it an unknown genetic mutation or a random cancer? - and that would mean that you wouldn't know if you've inherited a genetic propensity to BC or not.

But starting with the BRCA test - or at least, a discussion with a genetic counselor - would be a good idea and might get you some answers that help with your decision.  

Kristen13

Thanks so much for your advice.  I did have the genetic counseling and I am BRCA negative but so is my mother.  So I don't even really consider this in my decision process. 

My mother had many biopsies in her 30's and 40's and her cancer actually showed up at one of her prior biopsy sites.  She had 2 primary sites.  I just get so scared about all of this especially watching both my grandmother and mother fight for their lives.  And I wonder if I should be proactive or wait and see.  I am 42 years old.

Pointvalue

Hi Kristen,



It is such an agonizing choice to make. I had a pbmx on 8/7. My pathology revealed lobular neoplasia in both breasts. Bs told me a made a good decision. I am 46 years old have had MRI annually for the last 6 years and mammo since I was 28. I have a significant family of bc. The peace I feel is priceless. I also tested negative for the brca gene 6 years ago. Just last week I had the BART test and that was negative as well.



Go with your gut. I am glad I did.



Always,

Elise

shabby6485

Hi Kristen,

I had 11 biopsies( adh, alh)in 5 years.  I was also on a 6 month rotation.  My last mammo showed suspicious microcalcifications so I had a core biopsy.  That showed FEA.  I never heard of that but my doctor recommended that I have another excisional biopsy.  I was not happy about that but I ended up having it.  That is when I was diagnosed with LCIS (Lobular Carcinoma in situ).  I was told the LCIS was an incidental finding but I had enough. I had a prophy double mastectomy on aug 14.  My final pathology came back with no cancer.  I have absolutely no regrets.  It is a very personal decision but for me it was the best choice.  As I recall, FEA is controversial in terms of whether or not to proceed to excisional.  Hard choices.  Best of luck! 

Kristen13

Thank you both for sharing your stories.  I really appreciate the information! 

My last biopsy initially showed up as microcalcifications which led to the biopsy.  The biopsy showed a radial scar so they recommended surgery to remove that and then that test revealed the FEA. 

So now I am at my 6 month mark and have to start testing again.  I have an MRI scheduled and I really feel that if anything shows up, it might push me to have pbmx.  If they had diagnosed LCIS then I would definitely proceed with the mastectomy.  I go back and forth almost every day struggling to decide what to do. 

I know it has only been a few weeks but did either of you have any problems with pbmx?

Thanks again for sharing your stories and best of luck to you both!

oregongal

I am one who the physicians are pushing for a mastectomy and I don't want one!  A lot has to do with cost, it would cost me a ton of money, am single, 59 and hardly any retirement money.  Even with all my biopsies and surgeries, I have never once thought I had cancer, hence no fears, but wow, what a pain all of this is.  I don't think I have a family history of breast cancer, but 90% on both sides do not live past 65, another 8% do not make it to 69.  We have an inherited disease, plus a lots of deadly cancers, but no breast cancer. 

However, there are some big arguments in favor of mastectomy.  The biggest one is from reading these boards is the fact that all who have the mastectomy had no regrets.  All seem to feel they did a smart thing and now do not have the stress that the biopsies, etc, that affects not only themselves, but their family members.  Peace of mind is a wonderful thing and we know the damage that stress can bring into our lives.  I can't even imagine being fearful with every tests, so at that point I would totally recommend doing what you can do to ease your mind. 

Now, unless I missed this I didn't see your age listed.  If you are young, good grief, you have a lot of tests ahead of you!  That would also need to play into your decision.  

And if you are older-  I work for physicians and when one of them was in my office and I was telling her about the fact that they wanted to do a mastectomy and how I didn't want one.  She said "are you nuts, get a whole new set of perky boobs, I would love to have insurance pay for that".   Of course, not everyone opts for reconstructive surgery, but I had it once already and I have to admit, those girls looked great when the PS was done.  But I had much better insurance back then.

Since you are posting on a board where most have had cancer and will encourage you to have a mastectomy, I think your mind has already made the decision.  You just need to take the leap! 

LISAMG

Hi Kristen!

I am a NYer too , where are u located?? Your family history is very compelling  Had my risk reducing NSM just 2 yrs ago, BRCA un-informative negative, like you. I also had a preventative BSO 11 months ago, given the fact there is ovca in my family as well. Took me 4.5 years to make my agonizing decision, after enduring 2 invasive surgical biopsies, having dense breasts, and a significant family history on both sides. Very personal decisions, but it was the best decision for me. The wear and tear with survelliance eventually wore me down and the fear of cancer became greater than my risk toleration. NO regrets, no complications and with amazing surgeons, my breasts look far better than my originals. You are doing everything possible to make a fully informed decision. Take your time, gather all the facts and do your homework, my best advice. Without a BRCA blueprint, its extremely difficult, but I had the full support of my high risk surgical team and my loving family. Feel free to PM me anytime for more details/questions re: my experiences. Good luck to you

Kristen13

Oregongal-

Thanks so much for sharing.  I am 42 years old and started all of this a week after I turned 30.  And you are right that is one reason why I would move forward with the pbmx.  I do have many more years of testing!  I am also small chested and feel that they are constantly chipping away at what I do have, so what's the point!!

I have been reading the posts on this forum for years but never posted anything.  When I decided to post, initially I really wanted to hear other stories of women in the same situation and what they decided to do.  With all the family and friends in my life, only one person has ever gone through what I am going through and she chose the pbmx.  I really thought it would help to hear other stories.  And it has been a great help!  You said that it seems my mind is made up and you are right.  I am leaning towards it.  But you are right I just need to make that leap!  Thanks again and best of luck to you!!

asmd

Hi Kristen,

I had no choice but to have a mx when first diagnosed. And I had no plans to lose the other breast. But, my genetic testing came back during chemo, not BRCA but an unrelated mutation, and showed I had a 25-50% chance of another breast ca. My family and friends were pushing me to have contralat mx. I heard things like "no-brainer". It wasn't a no brainer for me. I liked my old saggy breasts. Eventually, I decided on the second mx because I never wanted to go thru chemo again, and the contrast material used in MRIs is tough on kidneys, and I didn't want yrs of that toxicity. And I knew I'd be worried all the time about recurrences. So I had the surgery, and I'm glad I did. But, although my new breasts look great in clothes, I hate them. I'm slender, and they look like baseballs on my chest, and I had a great PS. Regardless, no regrets.  It's a hard decision to make, and there is no rush. Give yourself time to come to a decision.

Kristen13

Hi Lisa-

Thanks for your response.  This site is such a huge help.  This is exactly what I needed! 

I live about an hour north of NYC.  So it is a great place to live to access some great surgeons.  Where are you located??  I had a second opinion and that doctor told me that I am a great candidate for the NSM.  So I would love to hear more of your story!

I agree the wear and tear of the constant surveillance can be brutal. I feel like I will end up taking the step for the surgery most likely within the next year.  Everyone in my life is so supportive so there is really no reason not too.  My concern was the recovery process and if anybody is having a negative experience with the implants. 

Thanks again and if you don't mind I will PM you for more info!

Kristen13

Hi asmd-

I am so sorry for what you have been going through.  I am slender as well and worry what the implants would look and feel like.  You are right, I do have some time to make this decision.  So I don't want to rush into anything.  I didn't realize about the MRI contrast and what it does to the kidneys.  I have to take that into consideration because I have a complex cyst in the kidney that they also monitor.  I wonder if that contrast was to blame for that forming.  Thanks so much for your input.  Take care and all the best to you!

Zeeba

Hi, Kristen--I'm making a similar decision now as I found out about my positive BRCA2 mutation in mid July-- since then, I've had an MRI with a suspicious spot and am awaiting biopsy results--I'm off to talk to a surgeon about ovary removal this month and then will figure out what to do w my breasts--or the biopsy results will take care of that for me. It has been a long and confusing 6 weeks--but I might be at the point that regular surveillance for the rest of my life will be too consuming--I really don't know.



There is a ton of excellent information here--also, although you don't have the genetic mutation, the FORCE site has some wonderful information about PBMX that I found very helpful.

Be well,

Laurie

winter2011

Hello Kristen,

My name is Holly and I am a 38-year-old from Minnesota. I just underwent (Monday, Aug 27th, 2012) a Prophylactic skin-sparing mastectomy with reconstruction. In January of this year I was diagnosed with ADH, altough I didn't test positive for any genetic disorders, my mother passed away from Breast Cancer in 1984 when she was just 28, which made my decision quite easy. I didn't want to go through mammograms/MRIs for the rest of my life and just wait and wonder if and when cancer would show up. I did this for my children...I didn't want them to go through what I did when I was just 9-10.

My pathology report from surgery came back negative for cancer...but with a lot of differnent breast diseases in both breasts, which reinforced that my decision was the best thing I could have done for myself and my family. I feel so empowered!!!

How am I feeling 7 days after surgery: I am not taking any pain medication, except tylenol at night. I have tightness in my chest and little pain getting in and out of bed. The drain tubes are a bit of a pain, but I have a wonderful husband who cleans them out for me. I am taking walks outside a couple times a day. I have great family support which makes things really nice!!!

Oh...my new breasts, although bruised and swollen, look beautiful! I do not feel any less of a woman!!

I do hope and pray that you can find your right decision!!!

Holly 

Kristen13

Thank you Laurie.  I will check out that site as well.  I will pray for a benign biopsy result!!  Best of luck to you as you make your decision!!  And please let me know how everything works out. 

Thank you Holly.  I hope that you continue to heal and do well!  I am so glad that everything is working out for you. I am so sorry about your mom and what you went through as a child.  With your history, I would've definitely done the same thing!  

 All the best to you both!!! 

farmerlucy

Kristen - I too had a terrible family history of BC and after twenty years of screening and two biopsies, the last which showed ALH, ADH, I had a PBM on Feb 21. On Feb 24 the doc called and said they found a 1.1 cm IDC. This was not seen on ANY screening including MRIs. My recommendation is if you have the family history and dense breasts you should seriously consider the surgery. I am done now with my exchange and I look better than I ever have. I am just now recovery from the anxiety and depression of the DX, but LORD only knows how long it would have taken for the docs to find it. I am stage 1a, onco score of 3, no tamox, and moving on with my life. The recon was tough since I was not really able to do my normal physical stuff but my new breasts are HOT! I really like them.

Dariff

My grandmother...two of her sisters, my mother and one of my aunts and I all  have  had or have now  breast cancer.  I am going through chemo now, and I face your same decision.  After chemo, and 10 more months of less invasive chemo, I will choose to have all breast tissue removed. (nipples still intact)

The reason I choose this is because none of our breast cancer has come back ever.  I have a daughter and a grandaughter.  All of us have chosen masectomy so that we can live.  My masectomy will hopefully look better than the butchery that my mother and grandmother endured.

Dariff