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Topic: What are you telling your daughters?

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Nov 12, 2017 05:23PM

Nkb wrote:

I have that sneaky ILC cancer that was bilateral and very far along with many nodes before discovery and didn't show up on any mammograms or ultrasounds. The surgeon thought all was ok. The radiologist was sure it wasn't cancer. A biopsy finally was done-->cancer. Even the MRI with contrast didn't show it all.

My sister and mother and paternal aunt and paternal first cousin all had breast cancer. (5 out of 6 women in my family) The many genetic studies I have done are all negative so far.

I'm tempted to tell her to pop out a baby soon and then remove the breasts. and get implants if desired. I don't mean to be horrifying-but, it scares me to death to think that this is her fate. Her new primary doctor told her to get genetic counseling-the geneticist told her to do breast exams. I feel very uneasy. she's 26. How are others dealing with this?

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/4/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Nov 12, 2017 08:04PM exbrnxgrl wrote:

I have two adult daughters (27 and 33) . All my genetic tests have been negative too. Besides myself, my paternal grandmother had bc and my daughters' paternal grandmother has bc. They are aware of the family history, but I don't want them to live in fear or undergo a very major surgery based on what we currently know. They are probably more vigilant than many women their age, but that's all for now. Both have children already. I do not have ILC, but I understand why you would be concerned. Arm your daughter with all the currently known facts, have her speak to her doctor and then let her handle it as she sees best. All the best.

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)
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Nov 12, 2017 08:25PM ShetlandPony wrote:

I really understand being scared for our kids. I get worried and frustrated even when they don't eat right or exercise enough.

I'm no expert, but I think that at 26 your daughter probably does not need to do much. The usual rule of thumb for a daughter is to start mammograms at the age ten years younger than when mom was diagnosed. When she gets to that age, she can probably make a good argument for adding breast MRI based on family history, especially if she has dense breasts. Since there is the family history, make sure your genetics counselor and hers is of high caliber, and that your testing included a high-quality, comprehensive panel such as Ambry. And ask about re-doing it once in a while, because the tests get updated. If there are cases of bc at a young age, that is a consideration, too. And is there prostate cancer in the family history? (I read a medical journal article that indicated ILC and paternal pc might be related.) What does your genetic counselor say about your daughter's risk, compared to what hers said? People sometimes overestimate their risk based on family history, so the getting their estimate with a percentage of increased risk number may help you both.

Hugs from one mom to another.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn. Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast, liver, retroperitoneal nodes. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda
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Nov 12, 2017 09:15PM Nkb wrote:

Shetland-thanks for the hugs! I feel so sad and torn. I know that I had breast cancer for years before it was diagnosed (lymph nodes that were thought to be reactive) and tons of screening to no avail, breast exams by experts and no lumps- I know that the usual screening did not work for my ILC. No PC, Ovarian or Pancreatic cancer in my family that I know of. My sister did also have melanoma and my mom had esophageal cancer also. My genetic counselor says that she thinks there is something genetic-they just can't find it in me yet. I think that I have had all the tests that are on the Ambry site, although it has been a few years. Maybe I should contact the genetic counselor to see if she has new tests she recommends. They have the usual screening advice for me re my daughter, but, I do think MRI's are going to be her only chance with todays technology. Of course, I want to spare her this experience, and statistical risk doesn't soothe me.

She is young enough still - and I am glad she is thinking of planning a pregnancy in the next few years. I feel responsible to tell the truth (but, don't want to cause distress) and also would love to spare her from this (unrequested visit to hell as Lita called it.) I don't think the usual advice from doctors will do that.

I thought I had time and would have some better evidence based advice over the next 5 years-her new primary care doctor has worried her.

That is why I wonder how other Mom's are dealing with this.

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/4/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Nov 13, 2017 07:42PM JFL wrote:

Shetland is spot on with the stats on when it is a good idea to begin thinking about all this.

However, I have a slanted view in that I was initially diagnosed at 30 . . . and my issues began way before then but doctors didn't take me seriously, with many of their staff being rude to me about it . . . I first went to the doctor in college due to suspicious areas I discovered in my breast. It took several more times of trying to convince the doctors there was an issue and them having a huge miss when I was 28 and hospitalized for complications from my yet to be diagnosed breast cancer. I had 6 tumors in 1 breast when I was finally diagnosed, including 1 in that area I first complained about in college. There are so many others in the same boat, as I learned from my time spent active in the Young Survival Coalition. I kept pushing because something seemed "off", but in all honesty, I never expected I would have breast cancer at the end of the day. I had no family history and it came out of left field. No need to pressure her but give her the information to start mulling over and she can do something if and when she is ready. It is sad in that no 20-something should have to think about this but it is better she is armed with the appropriate info. I know various young women who have had preventative mastectomies due to family histories with their mothers and all seem to be very happy about their choice.

Dx at 30. Dx with mets at 38 while pregnant. Extensive liver and bone involvement. Currently on Abraxane and XGeva. Dx 9/2006, IDC, Stage IIB, Grade 3, ER+/PR+, HER2- Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/6/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Chemotherapy 12/17/2014 Taxotere (docetaxel) Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/14/2017 Aromasin (exemestane) Targeted Therapy 5/14/2017 Afinitor (everolimus) Chemotherapy 8/18/2017 Abraxane (albumin-bound or nab-paclitaxel)
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Nov 13, 2017 08:36PM Micmel wrote:

NKB~ I don't have the lobular either, but I chose to have my DD come with me to my appointments at any given time so she could talk to the doctor directly. You're no way at fault here. I worry also about my DD, there was never any cancer history in my family. None. Nada. She has already been told to pay close attention and to constantly self exam. But I told her always listen to your body, I was told it was a cyst and I was young. It wasn't a cyst. Just openly discuss things with her. Like everyone's said youre arming her with knowledge she needs to always be self aware. Also, never blame yourself, for things you cannot control! Sending strength and good thoughts ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 11/6/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Nov 14, 2017 10:34AM Scared67 wrote:

I hear ya... I don't carry the so-called "cancer genes" but I am confident genetics must be partly to blame - as there is rampant BC on my dad's side of the family.

I too am scared for my DD - she is 11. But, now wearing the bras for tweens. My hope for her - is that she has preventative mastectomies before she turns 25. Yes - I know that's drastic. But, that's how scared I am for her.

I hate that I even had boobs and if I had know that there was so much BC on my dad's side - I would have had them removed at an early age - too.

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/18/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/8/2016 Hormonal Therapy 11/9/2016
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Nov 14, 2017 10:53AM Nkb wrote:

JFL-I think the usual advice to young women like you is that breast cancer just doesn't happen-there is a bias to begin with. This is dangerous. Also when someone says it is a cyst-we want to hear that and let go for awhile of our inner voice that knows different.

I feel responsible to tell the truth to my daughter- I do agree that preventative mastectomy is the right thing for her unless someone can find another way to assess risk and find ILC early. We don't have the technology currently.

Scared67-I hear you. The sight of boobs makes me queasy now. Saw a t shirt that said "my boobs tried to kill me".

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/4/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Nov 14, 2017 11:22AM - edited Nov 14, 2017 11:22AM by Scared67

Ntb - LOL on the t shirt!!! It's funny because my mom and I got into an argument about this subject. She doesn't think my DD (her grandchild) has anything to worry about. As long as she has regular mammos. Ha!!! Really!?!?!?!?!?! Why not just get RID of them??? Its not like they are there for much of a reason. Besides breast-feeding - but - is it really worth the risk of losing your life to have them when it runs rampant in your family???

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/18/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/8/2016 Hormonal Therapy 11/9/2016
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Nov 16, 2017 11:57PM ShetlandPony wrote:

If no known genetic mutation shows up but there is a very strong family history -- suggesting they just haven't found the right genes -- would the genetics specialist recommend treating as if one of the standard bc mutations had been found? In other words, intensive screening or prophylactic mastectomies at a certain age?

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn. Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast, liver, retroperitoneal nodes. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda

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