double prophylactic mastectomy

Anonymous

double prophylactic mastectomy

Ginger_16

Hi everyone,

Yesterday I went to my breast specialist team to assess my risks and talk about my options to prevent cancer (as of today I do not have any that I know of) . I am having a 3D mammo done in a week , MRI if needed at this time , if not then it will be done every 6 months . They have suggested preparing for a double mastectomy because I am BRCA2 positive . Truthfully , I am more worried about my ovaries since my biological mother passed away from ovarian cancer at 53. I am 50. I am heading to more genetic counseling as soon as I can . I know the benefits of the mastectomy but am unclear of the drawbacks of waiting a little longer .Is waiting until I actually have a diagnosis of cancer better ? I know some can have cancer even after the mastectomy has been performed . Any advise is greatly appreciated. Thank you .

ravzari

Once I found out I had a strong family history of BC (still waiting on the genetic test results), and that the youngest family member found her first lumps around 38--and I'm nearly 37--it wasn't even a consideration for me, personally, to 'wait and see', I wanted them off and I wanted them off yesterday.

Had my prophylactic BMX (no recon) back in June and have zero regrets.

If the tests come back with anything positive in the genetic realm, I'll be having all of that potentially defective stuff removed as well; for me, it's not worth it to 'wait and see' when the 'wait and see' end result could very well be cancer that, even if it gets treated into remission, still has a 30% chance of eventually going metastatic. My gynecologist is waiting on the genetic results and has said to let him know ASAP once they're in so, if I'm positive for any mutations that will raise my risk of ovarian or uterine cancer we can get that surgery scheduled to get them out.

No non-essential for life body part of me is worth that 'wait and see' risk; if it's got a higher than normal risk of developing cancer, it gets evicted with no regrets.

mustlovepoodles

I can understand why you're concerned. I had prophylactic double mastectomies in February 2016 for similar reasons. I am PALB2 and Chek2 positive, which puts me at about the same risk of BRCA2. I have a very strong history of breast and uterine cancer and one Aunt who had ovarian cancer. I just had a hysterectomy about 4 weeks ago.

I did not want to have all these surgeries, but I needed to give myself every chance to not die from cancer. BMX can come with complications --mine did. But I don't regret it. Hopefully , I have done what I can to protect my health and I won't look back now.

Ginger_16

Thank you for the advice I have received so far . It is comforting to know you have no regrets about the decision and for the most part it has worked out well. I have other health related concerns which make "waiting " a bad idea for me .

ravzari

I think the 'no regrets' for me helps because I never held a large amount of my 'identity' in my breasts; a lot of women do, and base a good portion of what they feel is their sexuality and attractiveness around their breasts, so losing them (or the idea of losing them) can be especially traumatic as they may feel as though they're "disfiguring" themselves or are losing part of "what makes them a woman".

For me, my breasts had no role in defining how I felt about myself or who I am; I'm the same person now that I was when I had a pair of 34DD breasts, nothing about me changed. I'm the same person, I'm just as attractive (and my husband agrees), and I do not feel as though I 'lost a part of me' so much as I lost a pair of cystic, painful, okay looking, high risk for turning into a bag of tumors part of my body, and that's no loss at all as far as I'm concerned.

They were nice, and they looked fantastic in fitted shirts (especially with a good push up bra; I'd had people think I had implants before when doing that!), but I wasn't super attached to them and they didn't form a significant part of my 'identity' or sexuality.

If I ever do feel as though I want or need breasts again, there are always options ranging from mastectomy bras with prosthetic inserts or reconstruction surgery if I want something more permanent but, honestly, I'm so happy not having big ol' boobs anymore that I can't imaging ever wanting them back on a permanent basis. Even if you do choose not to reconstruct not, it's always an option down the road if you change your mind; it's not one of those 'do it now or you can never do it' things so if you're not sure you can either ask them to leave you flat or you can ask them to leave extra skin if you plan to reconstruct in the future but don't want to do it immediately. If you change your mind, they can always remove the extra skin.

That said, I know that's just me, and what works for me and is right for me isn't always what's best for someone else, so really, you do have to go the route that will be best for your life and your psychological and physical health.

Susie02

Dear "Ginger 16",

Since finding out I am BRCA 2+ and after going through my experiences, I have made it a goal to share with anyone who asks. I always had clear mammograms and pap smears. After finding out I was BRCA 2+ and knowing my family's history of cancer, I had a prophylactic hysterectomy first. A few months later, I had a breast MRI that came back "clear". I still wanted to have a prophylactic double mastectomy with reconstruction, but "life" got in the way. I delayed the surgery a month and wanted to delay it another month. One of my doctors strongly advised me NOT to delay the surgery - explaining the way stress can affect the body. God was watching after me! The Saturday after surgery, my surgeon called and told me just that because pathology found DCIS. If I had waited again, there is no telling what would have happened. My first reconstruction surgery was not perfect, but I made it through. Just two weeks ago, I cmpleted my tissue expander/implant surgery. I am so thankful for my doctors and their advice.

I hope this is helpful.

Ginger_16

Dear Susie02, Thank you so much for sharing your story with me . It brings me to tears , one because I wish you well and hope you are doing okay and two because you brought to life my fears of waiting and monitoring a little bit . I have a strong history of ovarian cancer so my main concern was to get my ovaries out first . I am having more difficulties with the mastectomy . I worry that they might miss something because my breasts are so dense. I go for a mammogram Friday and hopefully an MRI soon. Then meeting with the surgeon and plastic surgeon as well.

Hugs

Susie02

Dear Ginger 16,

I believe that once things "get rolling", you feel better. I have absolutely NO regrets and am doing well. Best wishes and prayers for your upcoming mamogramand MRI! Please keep us informed. Much Love, Susi

Ginger_16

Susie02, I hope you are doing well and feeling better . I had my 3D mammo and it was clear , next step is an MRI . Apparently, I will be on the 6 month cycle for watching until I make a decision . I will be seeing the breast surgeon and GC soon My doctors office told me to try not to worry and for the most part I try not to , but it feels like waiting for the other shoe to drop . Not sure I like that . One step at a time I guess.

lintrollerderby

Hi and I'm sorry you have cause to be here. I have a deleterious BRCA1 mutation that was discovered after I finished chemotherapy for a surprising Triple Negative breast cancer diagnosis at age 34. My daughter tested positive also and had her prophylactic bilateral mastectomy (PBMX) with reconstruction when she was 20.

I've pasted a question you had from your original post: "I know the benefits of the mastectomy but am unclear of the drawbacks of waiting a little longer .Is waiting until I actually have a diagnosis of cancer better ?" Here's my answer: The drawbacks of waiting a little longer are that you could potentially have breast cancer already (since you're at high risk) or you could develop breast cancer in the time that you're waiting. Both situations are less than ideal and have the potential to become life threatening. It is absolutely, positively, strongly NO, it is NOT better to wait until you have a diagnosis of breast cancer before moving forward. Once malignant cells have begun to form, there's no way to know whether any have escaped and lay dormant in regional or distant areas of the body. This is how metastatic disease forms and if the cells set up home in a distant area of the body and begin to invade the tissue, that is what's called Stage IV breast cancer, which is considered terminal. It is always better to not have malignant cells in your body, so please don't think that it would be better to wait to proceed until/if you develop breast cancer. The whole goal of a prophylactic surgery is to remove as much of the threat as possible before it has undergone cellular changes that make it dangerous, so if someone were to intentionally wait until a malignancy forms, it's no longer prophylactic.

Now, I must say that what I posted in the paragraph above is generally for those in our shoes (having a BRCA mutation) who know that they want surgery, but just not when to have it. With regard to the PBMX, it's almost always advised to BRCA mutation carriers to act sooner rather than later with regard to preventative surgeries if this is something that they've made up their minds about. However, if you haven't acted because you have not yet made up your mind about whether to have the surgery, then please take some time to do some soul searching to see which route you'd likely take. Take the path that feels right for you. By no means am I trying to push surgery for those who aren't sure that they want it, but if someone knows that they want it, it's STRONGLY recommended to do it as soon as possible.

I hope that this helps a little. It's a terrible position to be between two bad options. Whatever path you choose, embrace it and don't doubt it. We have enough uncertainty to live with having a BRCA mutation and adding extra because we question ourselves doesn't do anything but rob us of joy.

Best of luck!

Susie02

Hey Ginger 16, I don't look at this website every day. Strangely, I looked at it tonight and saw your recent update. So glad your news about the 3D mammogram is positive! I was also given the option of 6 month monitoring. I went back and read the start of this strand, and think it is most important to have the hysterectomy first. I did the same thing, as the doctors said it is harder to diagnose ovarian or uterine cancer. I wish you the best in your journey. Please let me know if you have any specific questions about either surgery (hysterectomy or mastectomy) in the future. Take care - prayers for guidanceand strength!

Toughiebird

Question if anyone can help: i have a chek2 mutation, S428 and was diagnosed on 5/16 with a small stage 0 non invasive DCIS - essentially had lumpectomy. It's been 5-6 weeks and I am choosing pbmx. what is proper medically safe timing to do this since the diagnoses ( may 16-23, 2017). my left breast is still healing from 5/16 incision and im deciding on surgeons and plastic surgeons. thx

gardendesignr

Hi Ginger 16, I hope you are doing well. I wanted to jump on and tell you about my hysterectomy and later oophorectomy history. In Oct 2011 I had a regular laproscopic partial hysterectomy with extensive endometriosis removal and cleaning up of PCOS ovaries (one was to be removed it wasn't), my fibroid filled uterus was 8lbs . I stayed overnight, went home the next a.m. The first week was bad pain and it wasn't till recently I found that the medication I was taking was a very low dose, so better knowledge on this, on my part would have helped. After the first 7 days I was only on OTC pain meds, by week two I was bored and ready to get back to my desk job. After week 3 I was cleared to go back to work. Other than the first 7 days I was happy to be done w this.

This past May 23 I had robotic laproscopic with the McCarus Technique a patented system by my doctor, to remove both ovaries, the cervix which was incorrectly left 4" long had cysts and endo, extensive endometriosis and extensive staining w methylene blue for ovarian cancer. I was very eager to fix these problems as they greatly affected my daily life and this was before I knew I was BRCA1 (Feb 2017), I scheduled this in Dec 2016. I had complete confidence in my surgeon, through my research to get ready for surgery again I discovered some issues I had the first 24 hrs after the hysterectomy were due to anesthesia so I was VERY apprehensive about that. Luckily I educated myself and had all of my issues discussed. Surgery went perfectly! My surgeon had told me I would only need Tylenol3 for 3 days, after the 1st surgery I was worried but decided I could call for more. The first 24 hrs I had only gas pains twice in my abdomen, I had no pain pump :-0 just IV w injections of Toradol & pain meds every 6 hrs. Two days after I went home I no longer needed naps, I never needed help getting in/out of bed (I do have a cushion system recommended for mastectomy), a month later I'm bored...but I can't go back to work where I have to lift 50-75lbs till July 15. This surgery was far easier and I would highly recommend researching your options. One drawback is instant menopause and I am lucky that I am always freezing even working outside in Orlando in the summer. I started Brisdelle 2.5 wks ago and in the last 5 days it has made a significant improvement.

My next step is bilateral prophylactic mastectomy also. This one I am stressing over. I hope my story helps alleviate some fears. Take care!

TruffleShuffle

I tested positive for the NBN genetic mutation, and APC variant of unknown significance. I had my Fallopian tubes removed during a cystectomy a year ago. My GYN told me that recent studies have shown evidence of prevention of ovarian cancer by removing Fallopian tubes- due to many ovarian cancers forming first in the Fallopian tubes before reaching the ovaries. These studies are fairly new, and not extensive- so it's really not a preventative measure that is set in stone. I did it because i am finished having children, and "just in case" kind of thing. I don't have a mutation that puts me at higher risk for ovarian cancer. The NBN mutation is a "maybe" there, and is still being studied. That being said, if I keep having issues with my ovaries (cysts), I'll be looking at a future hysterectomy. As far as the APC vus- I'll start my colonoscopies earlier than most people for monitoring. And the NBN high risk breast cancer mutation has me researching blmx. It's all about taking your health into your hands, taking a deep breath & doing what you feel is best for you. The decision making process in all of this is very personal. Make sure you have good doctors who listen. And talk to your family members about the kind of support you need. Wishing everyone well

-C

Ginger_16

Thank you for sharing your story with me !! I am doing well . I had breast surgery in January 2017, results are ductal hyperplasia , so for now I am okay . I hope I am getting closer to full menopause however , it can't come quick enough. My ovaries still scare me , but hopefully we are watching them enough to prevent something . Anyway, today I woke up with selling in my lymph node under me left arm , opposite side of the breast surgery . Not sure what I should do if anything at this point.

I hope you are all doing well .Gardendesignr , I hope you are moving around with ease and have no pain !