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Topic: Survivorship Care

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

Posted on: Oct 11, 2019 12:18AM

Rayna_666 wrote:

I was wondering how everyone's oncologists handle survivorship care. I am 36 years old and about 2 years post triple negative breast cancer. I had chemo, bilateral mastectomy, and radiation. I also have the BRCA1 mutation and had some lymph node involvement. I had all of my treatments and surgeries in Wisconsin and I adored my doctors. They did not do much for follow-up other than a basic exam every so many months. They said blood work and scans were unreliable and more stress than they are worth.

I have recently moved to Texas. My oncologist now had me do a bunch of blood work (CBC, tumor markers, etc.) He also wants a PET scan. Is this excessive? Or was my oncologist in Wisconsin too lax? They were amazing all around and I trust them. I was curious how others handle it.

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Oct 11, 2019 05:47AM gb2115 wrote:

What stage was your cancer, and how extensive was your lymph node involvement? Did you present any symptoms that make them want to check for spread?

Getting a routine PET doesn't sound normal for 2 years after an early stage cancer. Unless it's different for triple negative? I don't know.

I had one lymph node involved. I had a CT and bone scan done right after surgery, but then it's the mammogram yearly. No one has done blood work and from what I can tell my doctor is following standard of care.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Oct 11, 2019 11:06AM Rayna_666 wrote:

It was stage 2 or 3 (I was right on the brink between the two) and 5 lymph nodes. And, no, unless he was concerned about occasional back aches but I attributed it to my horrible posture that I have been consciously trying to correct.

I did get ahold of my oncologist from Wisconsin and she said that they do not do all of those tests because they feel that the anxiety and possible false positives do not justify the benefits. She said she follows national standards and she would not.

I mean maybe it is because he did not treat me and wants to get a picture of any possible issues? And I guess it probably wouldn't hurt me to do it. It is just kind if stressful and brings back old memories...

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Oct 11, 2019 11:23AM Beaverntx wrote:

Rayna, I am in Texas also and am being followed much as you were in Wisconsin, with the exception of mammograms which are now annual (only had a lumpectomy so still have breast tissue to be checked). I suspect you are right that your new physician wants a baseline of your current status. As I read threads here I see that some are followed with more tests than others, even with similar stats. You might want to ask how often your new physician repeats such testing. All that said, welcome to Texas!

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!šŸŽ† Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 11, 2019 03:34PM Rayna_666 wrote:

Thanks! I guess I should be thankful that he is being thorough. It just kind of took me off guard since I was not expecting scans. I was curious if anyone else has had these suggestions for follow up.

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Oct 11, 2019 04:17PM Cowgirl13 wrote:

Sounds like you have a wonderful new oncologist, just as you had a wonderful oncologist in the beginning. I agree, since you didn't start with him it makes sense. For myself, I would be grateful to have this level of care.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/15/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Oct 11, 2019 05:29PM MinusTwo wrote:

I too would be thankful that someone wants to take a close look.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 11, 2019 05:53PM - edited Oct 11, 2019 06:07PM by Scrafgal

I am in Texas too....I had lots of upfront testing because my tumor was aggressive and they needed to be sure that I was node negative...they even sent me to the expert among their experts for a particular test because they just needed to be sure...I went there first, so when active treatment ended, I never had a followup PET, CT etc because there was no need at that point. Almost everyone that I speak with that comes here after they have been treated elsewhere gets more of a workup than they expected because the doctors wind up changing the original diagnosis 20% of the time. So, some might think it is too much testing but on the front end of a diagnosis, I didn't mind really. They only do blood work and a clinical breast exam every 4 months now...annual mammogram...a bone scan periodically because I started an AI. I will go to every 6 months blood work soon, presuming all is well.

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/5/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/21/2017 Taxol (paclitaxel) Chemotherapy 6/14/2017 FAC Hormonal Therapy 9/24/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/12/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 10/15/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 7/22/2019 Arimidex (anastrozole) Surgery 9/6/2019 Reconstruction (right): Nipple tattoo
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Oct 11, 2019 05:54PM Scrafgal wrote:

For Texans...are you loving this long awaited cold front or what!

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/5/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/21/2017 Taxol (paclitaxel) Chemotherapy 6/14/2017 FAC Hormonal Therapy 9/24/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/12/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 10/15/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 7/22/2019 Arimidex (anastrozole) Surgery 9/6/2019 Reconstruction (right): Nipple tattoo
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Oct 11, 2019 08:18PM MinusTwo wrote:

Scarf - eeeks. Forty degree temperature change in Houston in 24 hours!!!

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 11, 2019 08:29PM Scrafgal wrote:

It feels chilly but I need a relief from this heat!!

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/5/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/21/2017 Taxol (paclitaxel) Chemotherapy 6/14/2017 FAC Hormonal Therapy 9/24/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/12/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 10/15/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 7/22/2019 Arimidex (anastrozole) Surgery 9/6/2019 Reconstruction (right): Nipple tattoo

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