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Topic: Brca2+, IDC 1997, Dcis 2016, bmx 2017, f/u ???

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Mar 22, 2017 08:34AM

goldie63 wrote:

I posted a question on the Dcis topic that made me realize that with being well on the way for bmx surgery recovery my biggest concern at this point is having BC for the 2nd time (IDC 1997 and now Dcis), being brca2+, and with bmx now how am I to be followed up? Once determined to be brca2+ I was put into the high risk breast cancer screening program and now without the need for mammograms or breast MRI is it just nothing? Someone suggested I start a new thread and ask what other brca+ women do.

I have an appt for orientation and then to see RO at our cancer clinic Apr 4th. I'm going to ask about seeing a MO too as I don't even know why I'm seeing RO. I talked to breast patient navigator at hospital yesterday and she said that there would still be follow ups even without mammogram & MRI, with cancer clinic and my GP. There would still be clinical exams. Since I have Dcis this time chemo isn't necessary (yay!), other tests aren't necessary (eg pet scan), and since I had a mastectomy rads aren't necessary (although having had rads to that breast 20 years was an impacting decision for that surgery, along with being brca2+). I don't know if cancer clinic even intends to follow me up though, without any treatment other than surgery. I am not second guessing my decision for bmx at all. There was residual Dcis in affected breast, so now I know for sure it's all gone, and I also know for sure that the something they'd been following up on the other side was not cancer. But, what happens now?

What do others who are brca+ and have had mastectomies (either prophylactic or for cancer) do for follow up after active treatment (if any) is done? Are you comfortable with that?

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal
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Mar 22, 2017 09:03AM farmerlucy wrote:

I am not Brca positive, but I get a yearly MRI.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 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 3/10/2012 Lymph node removal: Sentinel Surgery 7/21/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015 Prophylactic ovary removal
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Mar 22, 2017 09:19AM goldie63 wrote:

farmerlucy I didn't think they did breast mri's after mastectomy since there's no (or very limited) breast tissue. Is it usual (where you are) yo have breast MRI after bmx? I haven't had reconstruction, but I can't see why that would matter.

Maybe I'm getting ahead of myself and I should wait until after cancer clinic appt. I'd like to know that questions to bring to that appt though.

Thsnks

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal
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Mar 26, 2017 07:49AM Emily2008 wrote:

I am BRCA 2 pos, and was dx the first time in 2008, then again in 2016. I had a double mx, chemo, and tamoxifen the first time, then a "lumpectomy" , 30 sessions of rads, and AIs this time.

My onc said that for the next 3 years I will have regular CTs and bone scans to check for mets. The first time I was dx, I didn't have any testing except chest X-rays twice a year for about 4 or 5 years, and bloodwork twice a year. For my breasts, we basically relied on physical exams to catch anything because mammograms and MRIs aren't necessary after mastectomies.

Dx 5/08, IDC, Left, Stage 1, Grade 1, BRCA 2 pos. Mast. w/TRAM and implant, A/C x 4, Tamox. for 6.5 yrs, ooph and hyst in 2010. Dx. 10/16, local recurrence, Left, Grade 2, breast segmentation, 30 rads from Jan-March 2017, then AIs. Dx 5/14/2008, IDC, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 10/31/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Mar 26, 2017 11:40AM goldie63 wrote:

thanks emily2008. Since this 2nd time I have Dcis I don't know that they'll want to do any extra tests. I will have to write up a list of questions to take to cancer clinic app

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal

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