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Topic: Trying to figure out what to do

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Oct 2, 2018 08:52AM

SouthernCatbird wrote:

Hi All- I have a very strong family history of breast cancer. I am 54 years old now - my mother was diagnosed at age 48 and died at age 49. Her sister also died of breast cancer and ovarian cancer in her 50s. My grandmother (their mother) also developed breast cancer in her 80s before she passed away. I have had genetic testing - negative. My only female cousin on that side of the family has also tested negative, but she has had multiple surgeries for benign conditions. My brother also tested negative (he tested to help me). Our family members that passed away were never tested.

I decided to begin additional screenings at the doctor's suggestion. My MRI showed a suspicious finding, and I had a follow up biopsy. The biopsy was benign, but there was ductal hyperplasia. My risk factor was 33% before this finding- she said that will rise now. I have a 3% risk factor for the next 5 years. When I met with my doctor yesterday we discussed taking tamoxifen and another drug together (can't remember the name) . We previously discussed mastectomy and reconstruction due to family history since my risk factor is over 30%. I will be meeting with a surgeon to get additional information before making my decision. I am leaning toward mastectomy/reconstruction instead of tamoxifen. Has anyone else been in this situation? What did you decided to do? I am thankful that I do not have a malignancy, but this is a lot to take in and a big decision.

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Oct 2, 2018 10:02AM borogirl wrote:

Over this past year I’ve had several biopsies, and although no malignancy there was ductual hyperplasia, complex sclerosis lesion, sclerosising adenosis, and focal atypical. I also have some family history, but negative for two BRCA genes. I felt like my risk factor was too high, and I didn’t want to wait until they found cancer and have to deal with chemo, radiation, lymph node involvement, long term drug treatment, and still have to have MX. I’m having prophylactic bilateral MX next month, nipple sparing, prepectoral TEs with silicone implants. Sometimes I ask myself why I am putting myself thro this, but then I just say that one word - cancer.

This may not be the right decision for everyone, but my drs and husband agree with me. I’m one of the lucky ones -having to option to avoid cancer rather than having it thrust upon them. Good luck in your decision making.



Surgery 3/13/2018 Lumpectomy: Left Surgery 11/12/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement
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Oct 2, 2018 10:17PM SouthernCatbird wrote:

Borogirl - thanks for sharing. You sound very similar to me. It is very reassuring to hear that your thoughts are similar to mine. Good luck with the surgery.

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Oct 23, 2018 10:33PM Kerri_Oz wrote:

I'm 51 and having double mastectomy in November due to LCIS/ALH, complex fibroadenoma, family history and a load of other things. I will not be having reconstruction. At first I thought I would reconstruct, but when I really looked into it and saw how many surgeries can be involved and the possible complications, I decided it wasn't for me.

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Oct 26, 2018 11:36PM SouthernCatbird wrote:

Good luck with it, Kerri Oz. It is a big decision to make regarding reconstruction. Hopefully, the mastectomy will good smoothly.

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Oct 28, 2018 07:16PM Kerri_Oz wrote:

Thanks, Catbird. It is a big decision, for sure. My lifetime risk is around 64% according to the IBIS calculation tool, so I'm very sure about the mastectomy, but I must admit, going flat is a slightly scary prospect. For me, though, reconstruction is scarier. I just want it all over and done with as quickly and easily as possible. We each have to do what is right for ourselves. How are you going with your decision?

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Oct 28, 2018 08:30PM farmerlucy wrote:

Kerri - Chiming in here. I was totally on the fence too about recon. My thought was to go flat but husband and daughter talked me into it. It was very hard for me. No issues with healing but my muscles did not like stretching one bit.Mine are under the pecs though I understand pre pec is becoming very common here. I’m almost seven years out. There has been a bit of contracture but overall they look pretty good. The thing with me is I did not want strangers to know about the mastectomies, compounded by the fact that I’m a simple person. The implants make things very easy, no bra ever, no worrying with a prothesis. I have 3D tats so with a shirt on they are completely smooth.

With that said I may have them removed before I’d replace them. Who knows. Go with your heart. Good luck with the surgery. For me the thought of it was worse than the reality.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Oct 28, 2018 09:26PM wannabeflat wrote:

I'm planning a prophylactic bilateral mastectomy in December without reconstruction. I learned I was BRCA-1 positive when my daughter was diagnosed with BC last year. My paternal gm died in her early 40s from BC and our family has had many other cancers: pancreatic, prostate, lung, uterine and leukemia. I was ambivalent at first but my daughter is so terrified I'll get cancer and she needs me to be healthy and strong for her. The 2 things that really helped me make this decision: reading a study about BRCA+ women who were being monitored and and then got cancer, and my daughter's comment that "once you get breast cancer, you can never go back to a time when you didn't have it."

Surgery 5/9/2018 Prophylactic ovary removal Surgery 12/28/2018 Prophylactic mastectomy: Left, Right
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Oct 29, 2018 06:38PM SouthernCatbird wrote:

Thanks for all that are responding here :) . Good information for us all. I am still struggling with my decision. My doctor is also saying that starting Tamoxifen is an option. I am worried about the side effects- although my doctors seem to think I should try it.. that I may not have any side effects. I am also worried that I could take the wait and see approach and end up with cancer. It is tough :( . Mastectomy and reconstruction is such a big decision. My lifetime risk is at 35% according to my doctor - so, I am in a gray area. If I was 64%, I think I would have no problem with it. When I punched my information into the IBIS calculator online, my risk was 55.5%. I wonder what the difference is?

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Oct 30, 2018 09:03AM farmerlucy wrote:

I went to a well known genetic counselor in OKC. He punched the numbers and then made his own adjustments and came up with 50% lifetime. The high risk screening alone was enough for me to decide on the PBM, long before I got any numbers. I think Color Genomics genetic test gives you a % too, plus you get a consult with a genetic counselor. Last I knew it was $249. Money well spent in my opinion.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Oct 30, 2018 11:41AM SouthernCatbird wrote:

farmerlucy - How did you do with the Tamoxifen? Were the side effects bearable? I am recovering now from prophylactic removal of ovaries and tubes. I ended up with a surgical infection in all four laparoscopic sites - it's been a bit of a struggle, but I am getting better.

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Oct 30, 2018 12:07PM jamiesue wrote:

Hi, Catbird. I was in a similar situation with family history and had the BRCA testing which was negative. I did however have DCIS in my right breast. My doctor felt that a lumpectomy was best but I decided to have a double mastectomy with reconstruction. Before being diagnosed, I felt like I knew I would get breast cancer, just when? With this surgery, I don't have to ask myself this again so it's peace of mind. Plus, I would have had to do radiation that I didn't want to do. And I also know people that did not have clear enough margins after lumpectomy and had to have the mastectomy anyway. As several posts have said, it's such a personal decision and I was just wrecked for weeks deciding. But I now feel good about it (talk to me after surgery lol). Good luck in your decision.

jamiesue Dx 9/10/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER+/PR- Surgery 11/15/2018 Mastectomy: Right; Prophylactic mastectomy: Left
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Oct 30, 2018 01:35PM - edited Oct 30, 2018 01:36PM by farmerlucy

I didn't like it, but taking it was better than knowing I had not done everything I could. Mainly I had hot flashes, which I still have and I quit the meds two years ago - so perhaps menopause symptoms were at work too. Femara was tougher. At least with Tamoxifen you keep a little estrogen. This mama ain't happy without some estrogen.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Oct 30, 2018 01:41PM MelissaDallas wrote:

jamiesue, it is a misconception that you don't have to ask yourself this again. People can and do have local recurrences, even after mastectomy. It is impossible for a surgeon to remove every last shred of breast tissue.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.

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