Familial but not Gene related-what to do?

I agree with SummerAngel, don't minimize your potential emotional reaction just because your plan is to go direct to implant. Some women have healing issues, others develop seroma or hematoma. MX is major surgery and does, in fact, lead to an increased risk of lymphedema (although a smaller risk than if you'd had any nodes removed). I would also like to add that bmx (bilateral mastectomy) does NOT bring your risk down to 0%. It is never possible to remove 100% of breast tissue, so there is still risk. But your monitoring will most certainly be different.

My own sad truth about BMX is that I have both numbness and discomfort. So I don't get any pleasurable sensations from my breasts (direct implants) and yet I am still dealing with areas that hurt or feel weird or itch or pull or have an odd shape or ... the list goes on and on.

If I want things to possibly look and/or feel better then I'll probably need more surgery. Of course - a big reason for pursuing this surgery was to have it over with and not have to have more surgeries!

I think you'd be very surprised at the emotional toll it takes. Did your mother and sister have mastectomies? What is the increased surveillance that's been recommended for you? Perhaps watching more closely for a while will be enough to put your mind at ease. And help with your emotions.

I, too, had a familial risk for BC. Mom was 27, her sister was 42. I did the high risk screening starting at 33. I always knew if anything came up I'd have the mastectomies. ALH and ADH were found after an excisional biopsy for nipple bleeding. Unfortunately invasive was found in the pathology from the subsequent preventive mx. There were missteps all along the way. What should I have done differently? I should have collected all the full reports from all my blue ribbon screening. I should have followed up on any questions. I should have been a better advocate for my own healthcare.

It is a radical surgery. Definitely not an easy decision. For me the expanders hurt like crazy and of course most sensation is gone.Honestly I have never, ever second guessed my decision.

Have you seen a genetic counselor? Mine gave me a 50% lifetime risk. I agree that your mom's age at onset may not increase your personal risk. I'm very glad your sister "only" has DCIS.

My advice? Go slowly. Gather all the information you can. Im hopeful that the possible future introduction of liquid biopsies may radically change BC screening for the better.

I'm am very concerned for my DD who has reach the "earliest onset" age in our family. Two professionals recommend baseline screening at 35.

Randi, which risk are you referring to when you say 5% or 15%?

As far as the breast reduction, you might want to get a second opinion on that. I have read the same thing and a quick search on PubMed found these:

https://www.ncbi.nlm.nih.gov/pubmed/15253205

https://www.ncbi.nlm.nih.gov/pubmed/16328720

https://www.ncbi.nlm.nih.gov/pubmed/10323701

Hi Randi74. I feel your pain. I am a surgical nurse so I deal with the side most on these forums do not, I see, do and manage patients with breast cancer and their mastectomies daily. I am a full time operating room nurse. Having said that, I have not had a mastectomy. I am now in your seat and I fully understand the anxieties and worry etc. I lost my mom to breast cancer 4 days after I turned 29 and three days after she turned 50 in 1999.

She was diagnosed DCIS with no lymph node involvement in 1997 at the premenopausal age of 48 and her cancer was estrogen receptor positive. She took tamoxifen but didn't take my advice on having a bilateral mastectomy (I was not in surgery then, but a floor nurse and STILL wanted her to do the Mastectomy!) Her cancer metastisized to her lungs in 1998 and she died after it went into her pericardium. My life was forever changed as we were extremely close.

I have Ashkenazi Jewish heritage on my mom's side. Her older sister was diagnosed with breast cancer when she was 45 and papillary thyroid cancer when she was 35. My mom was diagnosed with follicular thyroid cancer when she was 28 and then the breast at 48. Both my mom and her sister had thyroidectomies. My cousin from a different sister was diagnosed with follicular thyroid cancer when she was 23. Since both my mom and her sister were premenopausal, when they were diagnosed, plus the fact we have Ashkenazi Jewish heritage, and there is another common cancer, my breast surgeon said I am HIGH RISK. She does not like my risk. I had BRCA1 and BRCA2 genetic testing done 5 years ago = NEGATIVE for mutation. Just three weeks ago, I redid the entire 8 testing panel for breast cancer genetic testing since only the two BRCA 1 and BRCA2 were completed the first time. (insurance didn't pay so I didn't even know the other tests existed)

I have been getting bilateral breast MRIs every December for the last three years. I get Mammograms every July for the last 18 years since my mom died. In the last two years I have had additional diagnostic mammograms and ultrasounds because we found suspicious spots. One turned out to be a cyst. The stress that has come along with all of this increases every year. I have two beautiful children that my mom never met and to think I could leave my children behind if I died from a breast cancer I could have prevented with a prophylactic mastectomy makes me crazy. I obsess over it. Anyone above who commented on this thread and sounded like it is not something they could imagine doing, must not have lost their mum to it or went through what I have, because I can totally understand the stress, worry and anxiety you feel. What some HAVE gone through is a mastectomy themselves, of which, I obviously have not, and they might be basing that opinion on what their individual post-operative experience was.

I came to this site searching for a thread exactly like this, because I just got my results yesterday from my new genetic testing. They are NEGATIVE. My husband said, "That's good news!" and I said, "NO it's NOT!" and just starting bawling my eyes out. These last three weeks I have been all over the internet and the medical research and the studies reading and looking up all I could get my hands on and decided I would do a bilateral nipple sparing mastectomy with a lateral incision and immediate implants. Now I could get rid of these breast fed, well loved, but now unnecessary boobs and move on before I turn 50, with some perky new gel implants and BE DONE WITH THE STRESS every six months!!!!!!!!!!!!!!!!!!!!!!!!!! I assumed that because I am genetically fine, that the prophylactic mastectomy topic is off the table.

Low and behold, I saw my surgeon today as I interviewed her next patient for surgery and saw her before I brought the patient back. This patient was having a right radical mastectomy for her cancer and had her genetic test results back before the surgery was scheduled. SHE WAS ALSO NEGATIVE but has high risk due to family history and found a lump in late Aug. Do you know how many times I take care of patients who have negative genetic mutations but are having surgery for breast cancer?! It is INSANE! My doctor told me that insurance would still cover the surgery because of my familial history etc and she wants to see me back in her office to discuss options.

I DO NOT WANT TO BE ONE OF THOSE PATIENTS! I WANT TO SEE MY CHILDREN GROW UP AND GIVE ME GRANDCHILDREN! At the same time, I am petrified that I will be one of those patients that has a "bring back hematoma" or has necrotic skin on the operative site and has to come back for multiple surgeries. I am not afraid of JP drains, or scars, etc but a friend just had breast cancer on the left with bilateral mastectomy and her RIGHT breast had necrotic tissue that had to be cut out TWICE after the initial surgery. She is finally back to work after a HELL of a summer and today she told me not to do it. She said just be stressed every six months and do your mammograms and MRIs and SBE and make the best of it.

So I am totally in your shoes RANDI74 and I understand your anxiety and worry. Let's keep talking!

Wait, so farmerlucy, you had the PM and found out after pathology came back on your breast tissue that you had UNDIAGNOSED breast cancer!!!!!????????

I feel for those who are so anxious and worried due to strong family histories of cancer. My own family included breast, ovarian, prostate, pancreatic, and lung cancers. Since some of those overlap, I was advised to have the OvaNext panel done when I was diagnosed with BC. It includes something like 28 known mutations. I was negative. However - only about 5-10% of BC is due to a genetic mutation.

I did not need to have a BMX. I chose to do it mostly because I didn't want to keep watching things in the good breast and I wanted to avoid radiation. I also didn't want to deal with problems with symmetry between the breasts. I don't regret it because I still would not have wanted those things. But I also definitely wish I'd never had to do any of it in the first place!

There is a vast difference between reading about it and having it actually done to your body. Even if you work in the OR and have firsthand knowledge of the procedures - it's not the same. You don't see those women in the days and weeks afterwards. It's not a boob job. You don't get "perky" breasts.

You mostly seem to get disfigured, some more so than others. I should have been a best case scenario - healthy (besides cancer), no prior breast surgery, nipple and skin sparing, direct to implants. Besides some cording under both arms (helped by PT) and an infection 5 weeks after surgery (3 days in the hospital) and ongoing joint problems (from one antibiotic) - I've had very few problems.

And maybe it's because it hasn't been that long, almost 5 months. But they most certainly are not like real breasts. And I'll probably need more surgery if I want a better shape or less ripples. And now I don't really get surveillance - a breast exam twice a year by my BS seems like what it will be. So the lumps and bumps I have now are ... ??? Scar tissue, I hope.

I do understand some of the agonizing. I drove myself just about crazy trying to decide what surgery to do. But the thing is - you can't know for sure how it will be until it's too late and there you are. Hindsight is always 20/20, right?

Hang in there. Keep asking questions. You know yourself best in the end.

As treatment for BC - probably yes because in my case it allowed me to avoid radiation and I was going to need surgery on both breasts for symmetry. And it allowed me to remove the tissue in the other breast that they had concern about both before and after chemo. I have to keep reminding myself of those positives.

I guess I'd probably struggle with the decision if I had a genetic mutation or multiple family members with BC. But outside of that - no, I wouldn't. I'd go for increased surveillance (3D mammo's alternating with MRI's every 6 months) until any real concern in my own breasts occurred.

Hello ladies, Thank you NotVeryBrave and GagasDaughter for your stories. Randi and I have been discussing a lot and it has helped me some of my NOW decision making. I am going to wait until after Christmas to even THINK about this. I do have my MRI coming up in December. I do mammograms every June/July and MRI's every December. As NotVeryBrave said, working in the OR and seeing the surgeries isn't the same as seeing patients post-operatively with any complications that ensue. I now have two friends, the second being the most recent, that I have obviously kept up to date with and that also gives me a better perspective. One friend, the first, I happened to get assigned to her room the day she had her surgery. Everything went well and as usual. She had to come back to surgery two times because of a post-op hematoma and infection the second time. My latest, most recent friend, is one of my co-workers that I mentioned above, who had the necrotic non-healing tissue on the side unaffected by breast cancer. SO FRUSTRATING for her and our surgeon! (We see the same doctor) I spent last Saturday night with her and some other co-workers and after a few drinks and comraderie, she took off her shirt and her bra to show us all her reconstruction!! She cracks me up! She looks great considering everything she has gone through, just has left side that is not as supple and is "tighter" from the radiation treatments. Her plastic surgeon said that will relax with time though. I am just plugging along, feeling at peace with my "For Now" decision of waiting. She will have to go back to have some lipo so that she can do some fat injections on the top portion of her chest where she is very bony after all of the breast tissue was removed. YUCK, no fun.

Like I told Randi, no one except us can make this individualized decision. I will just use the time I have (cancer free so far) to keep reading up and researching everything and take one day at a time. I see my BS in Dec immediately after the MRI and I will see what she has to say. I will start 2018 with an open mind and be positive and see where life takes me!