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Topic: More than one sibling with breast cancer

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Dec 12, 2020 07:38PM - edited Dec 12, 2020 08:10PM by KBL

KBL wrote:

I am starting this thread because I couldn't find one about this, so if there is already a thread, please point me in the right direction. I will delete this one.

As many know, I was diagnosed Stage IV de novo occult breast cancer in May 2019 but actually have had it since 2013 without knowing.

Also, some know my oldest brother was just diagnosed with breast cancer. We don't know what stage or any other information yet, as he sees the surgeon next week.

I have a few questions for anyone who has a sibling with breast cancer as well as yourself. Do you have the same kind, either lobular or ductal, do you each have a different kind?

Did you do genetic testing and find there was no genetic mutation found at this time?

I have invasive lobular, while my brother's is invasive ductal. He had a 6cm lump in his breast. They've never found the cancer in my breast.

I'm hoping he's very early on and can stop it in its tracks. I don't have that option.

I've learned so much about breast cancer in the last year and a half. Now I feel like I have a lot more to learn

Thank you.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Dec 12, 2020 07:55PM illimae wrote:

KBL, I have no sibling with cancer but years ago my aunt (mom’s sister) was diagnosed stage IV de novo ER+ BC at age 63, 2 years after that my mom was diagnosed stage 1 TNBC at age 65 and a year later, I was diagnosed stage IV de novo ER & HER2+ BC at age 41. Genetic tests found nothing but I was told there is likely something in the genes that hasn’t been identified yet and was advised to notify female cousins to begin screening at age 31. There’s history but the cause remains unclear.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Dec 12, 2020 08:07PM KBL wrote:

Oh, Mae, that’s what I’m afraid of. I have a 31-year-old daughter. I’m so scared for her. I have a sister who is three years older than me, and so far nothing for her. Thank you so much for letting me know, and I’m sorry this happened to your family. I don’t know what to do for my daughter to make sure she’s screened heavily. She did have an ultrasound, but she has dense breast just like me. If she is going to get cancer (God, I hope not), I want it caught early. I can’t imagine how your mom felt hearing your news, especially at your young age. I’d give my life in a second for her not to get this.

Was your aunt the first in the family or had others had it as well? Up until a week ago, I was the only sibling of five to have any cancer. Now there are three of us. It’s just mind blowing.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Dec 12, 2020 08:44PM illimae wrote:

DD sharing a thorough family history with her PCP should be enough to get her screened early and regularly. When I told my PCP about my mom and her sister, he sent me for my first mammo at 39, which was clear. Unfortunately, just a year 1/2 later I was stage IV within 2 weeks of finding a lump. I’m sure there’s nothing I could have done given how quickly it happened.

Yes, my aunt was first but wasn’t diagnosed quickly, we assume because she’s autistic and likely didn’t fully understand the breast changes until it had spread and she had a collapsed lung, which they found bc cells in.

I’d definitely have your daughter mention her history just to be safe.

I do feel cheated at times being youngish but I’ve had a pretty darn good 45 years so far.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Dec 13, 2020 08:00AM KBL wrote:

Thank you, Mae. She’s had one ultrasound because of my diagnosis. I do not want to frighten her because she has a very young son, and she’s been through so much with me. The last thing I want is for her to ever think something will happen where she won’t be there for him. She gets a thorough exam every year for her job, so I will make sure she lets her physician know at her job so they can keep an eye.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Dec 13, 2020 08:20AM ctmbsikia wrote:

First, my apology for replying here, but felt compelled to answer OP questions.

Maternal aunt is first known bc in our family. She was diagnosed at age 70 was early stage, had surgery with no other treatment. She is now 81.

Sister diagnosed at age 50. Original diagnosis was lobular stage 3b, and thanks to her diligent MO, a bone scan was ordered just a few months into treatment (dmx, rads, tissue expanders), which revealed mets to her spine. She had reconstructive surgery and went 6 years on arimidex and xgeva. Just a couple months ago, pet has uptake in both spine and pelvis. She just started Ibrance. Hoping this new treatment regimen will keep her stable for many years.

My stats are in my signature, but should note that tumor was ductual with lobular features (mixed). Was tested and Brca negative. Our off spring will begin screenings at age 35. Ugh. No genetic link to our cancers, we are most definitely estrogen positive. No idea what happened.

Best wishes to you and your brother.

Hi Mae, hope you’re having a great day!

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Dec 13, 2020 08:46AM KBL wrote:

I’m so glad you replied. I want anyone to respond. I hope the mods don’t mind. I put it here because I’m Stage IV.

I don’t feel so alone and baffled with no genetic link.

I hope everyone in your family continues to do well. I’m sorry your children have got to start so much earlier. I’m sure my daughter will too now.

I read where if more than one sibling has it and one is a male, the chances are even higher for my daughter. Ugh!!

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Dec 13, 2020 09:04AM exbrnxgrl wrote:

Not quite the situation you are looking for ... My paternal grandmother passed away from mbc. My younger sister passed away as a result of a uterine sarcoma. My mother had uterine cancer. I belong to an ethnic group with a higher likelihood than the average population for BRCA genes as well as a few others. Yet I have tested negative for any known genetic markers that would predispose one to breast cancer. I have two adult daughters. They are aware of their family medical history. I don’t worry too much as I know they are being vigilant and that if new genetic mutations or other predictive/preventative are discovered they will take advantage of that.

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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Dec 13, 2020 09:41AM redhead403 wrote:

My mother had breast cancer, so did her sister and my father's sister. My father and all 3 of my brothers had prostate cancer. The Drs seem to think there is a connection. I believe there is a connection or a gene undiscovered as of yet that connects Prostate and breast cancer

Surgery 4/16/2019 Lumpectomy: Left Dx 9/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 1/6/2020 Whole-breast: Breast
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Dec 13, 2020 10:36AM - edited Dec 13, 2020 11:58AM by KBL

exbrnxgirl, thank you for the info. I certainly can't worry too much about my daughter, as that would not be a good use of life left that I have, but I'm so hoping, for her sake, it doesn't happen. The field she's in predisposes her to cancer in the first place. She's hopefully switching fields after this next July. I'm sorry for your losses. I guess it's always going to be a mystery as to who gets it and who doesn't.

Readhead403, I just read something yesterday about prostrate and breast cancer, so I think that's true about some kind of connection. Unbelievable how it's affecting your family. I'm sorry.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Dec 13, 2020 07:03PM - edited Dec 13, 2020 07:04PM by KBL

I hope everyone can still see my thread. I asked the moderators to move it to this topic thread so anyone who wants to respond can.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Dec 13, 2020 09:15PM illimae wrote:

Yup, it’s still here :)

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Dec 14, 2020 05:13AM KBL wrote:

Great. Thank you, Mae.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Dec 14, 2020 07:54AM flashlight wrote:

Hi, My sister was diagnosed last year with IDC on her right side. My Grandmother had a mastectomy before she was 50. I don't have any more information on her BC. My daughter's Gyn also has BC and wanted me to be have BRCA genetic testing. If it came back positive her plan was for my daughter to have her ovaries out at 50. My genetic tests came back negative. The counselor said if I had sons they would also monitor for prostate cancer. There is a link. My sister hasn't decided yet to have the testing done. Both my daughters will be monitored because of the history.

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 Radiation Therapy Whole-breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Left
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Dec 14, 2020 08:41AM KBL wrote:

Thank you, flashlight. It seems like there are many of us where there isn’t a genetic link. I don’t have a son but my daughter does. He’s just a baby. I wonder if he now has to keep an eye for prostate cancer or he’s too far removed from me. If, God forbid, my daughter had it, then he would have to check more often?

I have my first GYN appointment in a very long time at the end of the month. I will talk to her about it as well. She is going to be new to me.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Feb 15, 2021 03:34PM Rainyday7 wrote:

Just noticed this thread and in my family’s case I was the first to get Breast Cancer at 33. I’ve gone back through family history back 2 generations and the only BC was a paternal grand aunt who had it at 48.

Since my diagnosis, my older sister was diagnosed at 41. She was ER neg and Her2 +. My younger sister was diagnosed also at 41. She was Er+ And Her2 neg.

I was diagnosed with a recurrence this year and currently being tested if the spots on my spine are mets

2 of us had the genetic tests which came back negative. Strange that it didn’t show up in my parents generation and only one in the previous generation if there is a genetic link. I sometimes wonder if there’s an environmental link instead.

Dx 6/2005, IDC, Left, 2cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2- Dx 5/2020, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Chemotherapy 11/16/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/1/2021 Arimidex (anastrozole), Aromasin (exemestane) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Chemotherapy AC Surgery Mastectomy: Left; Reconstruction (left): Silicone implant Radiation Therapy External: Lymph nodes

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