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Topic: Mom with Ovarian cancer, me with Breast cancer, is there a link?

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: Oct 25, 2020 04:39PM

kksmom3 wrote:

My mother passed from ovarian cancer back in 1996. It took her within 6 months from diagnosis. I know nothing about what type or kind it was.

Anyway, because of this, I did have genetic testing when I was diagnosed with breast cancer 2 years ago. 28 genes tested, all negative. Mom was 68 when she passed, I was 61 when diagnosed. I was stage 1A, ER PR +, HER2 neg. lump/rads

What I'm wondering is, do you think I am at an increased risk of getting ovarian cancer? I did have a CA-125 blood test done, one 10 years ago, and one when I was diagnosed and they were normal, also had a trans-vaginal U/S done in 2018 as well, came back normal. These were ordered by my PCP, to ease my concern.

I plan to ask both my PCP again in November, and MO in February about this. Honestly, I would LOVE to have all that stuff removed. I want it gone! The older I get, the more I worry about it.

Does any of this sound logical? There could be a link that hasn't been discovered yet, or just bad luck.


Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 9/30/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Oct 25, 2020 07:55PM exbrnxgrl wrote:

kkmom,

There well may be undiscovered genetic mutations out there, but the the problem is, they’re undiscovered! When I was first dx’ed they were only testing for BRCA 1 & 2, since then they’re somewhere in the 30 range for detectable mutations (Ambry panel). My paternal grandmother had metastatic bc, my sister had a uterine sarcoma, my mother had uterine cancer and I belong to an ethnic group more likely to have BRCA genes than most. My genetic tests? All negative. So, like you, while there may be a genetic connection in my family it has yet to be discovered.

I don’t know anything about voluntary hysterectomies, which is what you’re thinking about as you have no current disease nor genetically linked risks. Would a doctor perform surgery for no other reason than peace of mind? What risks are associated with the surgery? Will insurance cover it if there is no medical reason to have the surgery? I have no answers but I think you need to ask more questions before you sign up for such a surgery.

I understand your concerns and share some of them but my personal choice (I have not had a hysterectomy) is not to do anything more than is medically necessary unless there is a compelling reason to do so. I wish you well.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Oct 25, 2020 08:17PM flashlight wrote:

kksmom3, Last Feb. I had a total vaginal hysterectomy with ovaries removed. Mostly because the tamoxifen had enlarged my uterus, gave me many fibroids, and caused a stage 3-prolapse. It was for me a nothing surgery. Within 3-days I didn't need any pain medicine. The hardest part for me was not doing my normal cleaning routine. No bending etc. I could drive 2-weeks later. I just had genetics testing done and haven't received my results. My sister was diagnosed with BC this year. My daughter's GYN encouraged me to have the testing done. If it is positive she wants my daughter to have her ovaries removed by 50. Yes, there might be a connection. As exbrnxgrl said we really don't know. I really believe it was one of the best decisions I made.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left
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Oct 25, 2020 09:17PM AliceBastable wrote:

By the time I had breast cancer and genetic testing (through a genetics counselor at the hospital) at age 68, my parents and all my older relatives were gone. I think the test was pretty limited to what my insurance would pay, and it showed no genetic connection. Mom had breast cancer at 88 (recovered). One of my paternal aunts died from breast cancer at 67. My maternal grandmother had uterine cancer and died from it at age 40. I had endometrial/uterine cancer at 58. My Dad had kidney cancer at 89 (recovered) and I had kidney cancer at 68. I'd like to know more but at my age (70) I'm not sure it's all that relevant. I have an older sister, and she and her daughter have done more comprehensive D-I-Y testing (niece is a research biologist in a genetics-adjacent field), but they haven't asked me to do the same testing, not did they seem interested in my results.

My hysterectomy was laparoscopic, and the only problem I had was swelly-belly. If I'd walked a lot, it probably wouldn't have happened, but I was in need of a hip replacement and could barely hobble.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Oct 25, 2020 09:21PM kathabus wrote:

Part of my treatment plan was removal of my ovaries and my GYNs opinion was to take all of it out. She said I was done having babies, removes risk of getting uterine and cervical cancers. I did it all happily.

I was very scared to have my oophorectomy because of side effects, but I’ve done well with it. No regrets.

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
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Oct 25, 2020 09:25PM - edited Oct 25, 2020 09:29PM by kksmom3

exbrnxgirl, I mean if women can have prophylactic breast removal and a lot of our pink sister's have prophylactic ovary removal to get rid of excess estrogen, I don't think I'm too far off in my thinking, but, you're right, no insurance company would want to pay for it, I guess. If they could do it laparoscopically, I think it'd be an easy surgery for me too. If I were under 40, I bet they'd remove them.

Anyhoo, just been thinking about it a lot lately. I'm more scared of ovarian cancer than breast cancer returning. There could be a genetic undiscovered link, or just a random thing. Still going to ask about it at my November appointment.

Thank you!!

Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 9/30/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Oct 25, 2020 11:14PM - edited Oct 25, 2020 11:22PM by exbrnxgrl

kksmom3,

I understand what you're getting at but those who are having prophylactic mastectomies are those who have a confirmed genetic mutation. Not sure if many surgeons would agree to removing healthy breasts just to allay a patient's anxiety. Then there's that pesky insurance issue again!

There are many procedures done for prophylaxis but there has to be some evidence of verifiable risk. Definitely ask about the current genetic risks and make sure you’ve had the full panel. Have you spoken to a genetics counselor? My facility makes you take an online class on genetic testing and then see the counselor. I felt this was super helpful in understanding potential risks to my children and grandchildren, even though I tested negative for all known mutations. Go figure 🤷🏻♀️ But remember, it was just 9 years ago when they could only test for the BRCA genes and we’re far beyond that now. Our mutations, should they exist, could be discovered at any moment

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Oct 25, 2020 11:16PM Peregrinelady wrote:

Kksmom3, my breast surgeon recommended ovary removal even though I was BRCA negative and my insurance had no problem with it. I did have family history with breast cancer but not with ovarian cancer. Her reasoning was that ovarian cancer is more difficult to detect. With your mother’s diagnosis at 68, I would definitely want to have my ovaries removed if I were you.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/17/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole) Hormonal Therapy 7/19/2020 Femara (letrozole) Hormonal Therapy 3/3/2021 Arimidex (anastrozole)

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