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Topic: Genetic Testing --Please help me think about it

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Nov 25, 2019 11:50AM

momand2kids wrote:

Hi Tribe

So, at the gyn this morning my gyn, who is the only dr. not in my plan circle of docs- expressed some concern that I had not had any genetic testing given my bc, thyroid and melanoma--- so I marched back to the office to set up an appoint at Dana Farber to do that- in December. I am terrified of this--I never did it because there was almost no cancer history in my family and I figured the melanoma was sun related...

Anyway, I have an appt to see the counselor-- just checking in here-- what are the pros and cons of going forward ? I can tell you my fear is that I will have to have my ovaries out-- and I just don't want any more surgery (I realize this is silly, but humor me!!).

Anyway, please send good stories and good reasons to do this....

thanks

xo

mom


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Nov 25, 2019 12:01PM MelissaDallas wrote:

I found it really comforting. Mine got triggered when they found my LCIS, because I had already had a rare (though generally thought to be nongenetic) ovarian cancer. My big fear was that both my dad’s mom & sister had colorectal cancer, though again, aunt’s was believed to be a nongenetic type, plus my dad grows really big polyps really fast. I am negative for everything. It is also a really fascinating process. I loved my geneticist. If I had tested positive for a genetic syndrome that included colon cancer I would have been approved for more frequent screenings.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Nov 25, 2019 12:08PM exbrnxgrl wrote:

I am glad that you are seeing a genetic counselor. He/she will be the best person to discuss the pros and cons of testing, so write down any questions you may have. I had genetic testing for BRCA 1 & 2 over eight years ago and had the more extensive Ambry panel over a year ago. All tests were negative but since I have daughters and granddaughters I wanted to know if there was a mutation.

As far as being afraid of what the test may reveal, in terms of medical recommendations, if you are positive for any mutations you can then decide whether to go with what is recommended or not. Wishing you 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) Hormonal Therapy Aromasin (exemestane)
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Nov 25, 2019 12:12PM Peregrinelady wrote:

I did it for my daughters’ sake.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/17/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/30/2016 Arimidex (anastrozole)
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Nov 25, 2019 12:23PM Hopeful82014 wrote:

After years of my PCP downplaying my family history I was surprised when first my MO and then my BS raised the issue and strongly recommended testing. My BS had to go to the mat with my genetic counselor to get her to order the extended panel testing rather than just BRCA 1/2 - and thank goodness she did.

I've found the information from testing very helpful (as well as extremely interesting). I've never been pushed to do anything against my will. Rather, I have the information I need to look after my own well-being.

I don't have children but do have siblings as well as a large extended family and it's been helpful to them to know of the need to be tested.

My advice is not to freak out over testing, not to plunge into it (or any other treatments) and to consider carefully how you discuss it with other, particularly children. If you have a good genetic counselor s/he can provide guidance and insight.

Dx IDC
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Nov 25, 2019 02:58PM momand2kids wrote:

Thank you everyone! I did talk to Farber and have an appointment for the meeting on 12/12--depending on how that goes, I may just have the blood test--it takes 3-6 weeks for results. I was bolstered by the negative results from my every 2 year breast MRI and good gyn visit- nothing unusual in the ovaries as far as she could tell.... So, I guess I can handle this.... I do have 2 daughters and for their sake I hope there is nothing there....

thanks again


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Nov 25, 2019 03:16PM Ingerp wrote:

Nobody mentioned genetic testing to me until after I was through treatment (this second time around). I was firm in my decision to go with lumpectomy both times, do not have a strong family history of cancer, and figured why bother? The reason my RO gave me was that I'd be followed more closely going forward if it turned out I had a genetic mutation. I was all over that. Rather than annual mammo, I would have alternated every six months with an MRI. It all turned out negative, but that's another thing to consider.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Nov 25, 2019 03:43PM momand2kids wrote:

Thanks Ingerp-

I already have an annual mammo and an MRI every 2years--- I didn't think any of this was necessary until I got melanoma this summer. All my cancers, (BC, melanoma and thyroid ) have been very low level- and frankly, even before the cancers I was followed pretty closely (dermatologist visits every 6 months for 20 years!) so I am not sure there is much more surveillance that can be done!!!

But, gyn talked about my kids and how knowing might help them make health decisions that would benefit them- and I think that ultimately that is worth it for them.


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Nov 25, 2019 04:25PM Yogatyme wrote:

My family got involved in genetic testing after my niece was recommended to test b/c of all the bc on her dads side. She was positive for BRCA1 and had prophylactic BMX and oopherectomy. My sister and I dismissed testing b/c there is no history of bc in our family. But when nieces surgeon told us we needed to test we took it more seriously. We are both positive for BRCA1 as is our brother. He tested bc he has daughters ( one tested neg other has not tested) and low and behold he has an esophageal cancer that is thought to be associated w BRCA1 and is currently being treated with Keytruda. My sister and I both had prophylactic oopherectomy earlier this year and were doing close monitoring of breast health. My very first MRI revealed suspicious spots in both breasts- biopsy- left Fibroademona and right micropapillary bc. They never showed up on mammogram. I had BMX in Aug b/c BRCA1 puts recurrence risk @ 85% for both breasts. Sister is having prophylactic BMX in 2 weeks. I will be eternally grateful that I tested as my tumor was caught early, only 7mm. Who knows how long it would have taken to show up on mammogram. My only regret is not pursuing prophylactic BMX. Of course, I only tested a yr ago, so my tumor may have already been there.

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Nov 25, 2019 06:27PM exbrnxgrl wrote:

Genetic testing is just a test. Even if the results are positive (and they indeed can be even without family history) no one will force you into making decisions about treatments they recommend. It is always your decision on how to proceed but IMO it’s important to make any tx decision with all the facts in hand

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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Nov 25, 2019 06:45PM Beesie wrote:

If you are found to have a genetic mutation, it might not be BRCA and it might not increase the risk of ovarian cancer. With breast cancer, melanoma, and thyroid cancer, one possibility is Cowden's syndrome. When I had a 23 gene panel done, Cowden's was the one that my genetic counsellor thought was most likely for me. Turns out I was negative on all 23 genes.

As exbrnxgrl said, the testing gives you information and then, if positive, the counsellor and your doctors will present you with options. There may be surgical or treatment options, and there will be screening/monitoring options. What you choose to do is entirely up to you.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 25, 2019 06:59PM mitziandbubba wrote:

I had the testing done after treatment, which I was happy about b/c I wanted to time to make decisions. I am Ashkenazi Jewish so that was a concern. I had already testing negative for the main BRCA variants related to being Jewish, but my MO was still concerned. Believe me, I was so, so worried as to what the outcome would be and so endlessly relieved all were negative. Just remember that you could also have a negative result.

Genetic cancers are actually quite a bit rarer than we think they are, but if I had positive results I would have been glad to know and make choices based on this knowledge.

My aunt just told me that she refused genetic testing as did another friend who was diagnosed 11 years ago and whose mother died of BC. It's up to the individual. For me, I liked being able to cross the genetic stuff off my list.

Surgery 5/9/2019 Lumpectomy: Left Surgery 5/29/2019 Lymph node removal: Sentinel Dx IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast
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Nov 25, 2019 08:20PM momand2kids wrote:

Thanks again-- I have the counseling appointment on 12/12--- I think I will just figure out from there-- still have to talk to husband... talked to my sister today who has not had bc- but would be glad to know the results if I go forward. Here's a question-- my best friend and one of her sisters both had bc--- my friend did not get tested, but sister did (negative). That does not mean that everyone else in the family is negative, right? Each person would have to have their own test?

thanks-- I love having this thoughtful tribe to help me think about these things!

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Nov 25, 2019 09:25PM Yogatyme wrote:

I don’t know about other mutations, but w BRCA1, everyone needs their own test. Generally if the mutation is in the family, 50% of siblings will test positive. That said, me and both siblings tested positive. However, the mutation does not skip generations.

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Nov 25, 2019 09:31PM vlnrph wrote:

Yes, a sister testing negative does not mean your friend is in the clear.

Your genetic counselor should suggest having all the insurance you will ever want in place before getting results. While our health policies are protected from discrimination via the federal GINA legislation, life/long term care and others are not. You may still be able to get coverage however it might cost more!

Also keep in mind that you could get a report listing a variation of unknown significance. As more information becomes available, that status will hopefully be clarified so whether it is pathogenic or not can be decided...

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Nov 25, 2019 11:20PM Hopeful82014 wrote:

NO. It is not correct that if one person has a mutation 50% of their siblings will as well.Said siblings would have a 50/50 CHANCE of carrying the same mutation. There’s a big difference between those two possibilities!

Dx IDC
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Nov 25, 2019 11:32PM SimoneRC wrote:

Hopeful82014 is spot on. If one parent carries a pathogenic gene mutation, EACH of the offspring has a 50 - 50 chance of inheriting the mutation. If an offspring DOES NOT inherit the mutation, they CANNOT pass it on to their offspring. One must have the mutation in order to have a chance to pass it on. And, if one does have a pathogenic mutation it does not mean that person will ever develop cancer. However it gives that person the opportunity to have additional surveillance, and also education and sometimes options for risk reducing procedures. I personally would rather know than not know. I feel it gives me better tools for decision making specific to my risks.



ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/6/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Prophylactic ovary removal Surgery 8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Nov 25, 2019 11:37PM Hopeful82014 wrote:

Well put, SimoneRC. I couldn’t agree more with you about knowing vs. not.

And vlnrph’s advice re: insurance coverage prior to testing is an extremely important point, one that far too often is overlooked until it’s too late

Dx IDC
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Nov 26, 2019 01:01AM AliceBastable wrote:

I'm another multi-cancer crap magnet. When I had a follow-up appointment with my BS in January, she suggested genetic testing and set up the appointment. My Dad had kidney and skin cancers (check, check), his sister had breast cancer, as did my mother (check), and my maternal grandmother had endometrial/uterine cancer (check). I was pretty curious, so I had the test, but due to insurance limitations, it wasn't as thorough as I would have preferred. No connections were found on the testing that was done. For me, it was vaguely interesting but rather pointless.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Nov 26, 2019 02:00AM - edited Nov 26, 2019 04:32AM by ShetlandPony

Momand2kids, another reason to have a full panel genetic test is that there are mutations that carry an increased risk for a particular constellation of cancers that may include breast cancer. If a person knows she has one of these mutations, she can get specialized screening for the cancers she is at risk for. For example, if colon cancer is associated with a mutation, a yearly colonoscopy could be life-saving, as precancerous polys can be removed right away. Knowledge is power.

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. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Nov 26, 2019 03:42PM momand2kids wrote:

Thanks all- well husband is less enthusiastic-- his question-- how will things change? You are already watched so closely on so many fronts? And he is concerned about the kids-- doesn't want them to worry--- or do anything drastic--

I invited him to join me at the counseling meeting so he could get his questions answered-- then we can go from there. But he asks a good question for me--I am already under so much surveillance- not sure what else could be done if I come up positive for something. Thanks for your wisdome and thoughfulness--these are hard things to think about.

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Nov 26, 2019 05:26PM SimoneRC wrote:

Hi momand2kids,

Certain mutations can give you an increased risk of cancers you are not screening for yet or ever. I began colonoscopy early and now have to have them annually. Had I not begun early, the big pre cancerous polyp that was removed 5 years before recommended screening age would have most likely been invasive cancer at regular screening age. My sister, who has not had breast cancer and shares my mutation, takes an AI and has alternating MRI with mammogram. Without knowledge of the mutation she would not have the MRI, nor been given the option of taking an AI to help prevent breast cancer. We were both given the option of hysterectomy and BSO. We both elected to have the surgery. In my sister's case, it turns out she had uterine cancer that would have certainly proved fatal if not removed.

In the event that you decide to go ahead with screening and you do wind up having a pathogenic mutation, nobody will make you do anything. You can use the information to get counseling specific to your mutation and make any decisions, or not, that you feel comfortable with. Everyone should feel comfortable making their own decisions. For me, knowing about my mutation has influenced my decisions in regards to treatment for my breast cancer, risk reducing procedures and surveillance.

Good luck in your journey. I hope you and your husband find your genetic counseling appointment to be helpful no matter what you decide!



ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/6/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Prophylactic ovary removal Surgery 8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Nov 26, 2019 05:49PM karen1956 wrote:

momand2kids - genetic testing is helpful for your children - I had BRCA testing at time of diagnosis in 2006 and a few years ago had the 32 panel test....

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Nov 26, 2019 05:57PM exbrnxgrl wrote:

momand2kids,

How old are your children? If they’re pre-teen or younger, there’s probably no need to say anything that would worry them nor even mention genetic testing. If they are adults, treat them like adults and educate them about genetic testing and it’s implications. If they are early adolescents or teens let them lead you with questions and then answer them honestly but in an age appropriate manner. The more you know about your bc and everything associated with it, the more in control you’ll feel even if results are not favorable. Knowledge really is power !

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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Nov 26, 2019 07:12PM momand2kids wrote:

they are late teens, early 20's... my youngest is very interested-- has written papers on genetic testing.... she would be interested in knowing my results (if I go through with it). Her question "why wouldn't you do it?" which is a very good question--she always has good insights...

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Nov 26, 2019 07:42PM exbrnxgrl wrote:

Ah, then they are old enough to understand. Knowing the truth causes less worry than not knowing. Your daughter is very wise!

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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Nov 26, 2019 09:11PM beach2beach wrote:

I was nervous when my onco recommended it. My sister had breast cancer. No other history in the family. Back when she had bc she had to fight just to get tested for BRCA.(which was neg) Fast forward to me 8 years later I had the panel of 62 (I believe maybe 68?) for the sake of my kids. They then could at least be more vigilant. Nothing came back, but as we know it picks who it wants to afflict.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 26, 2019 09:47PM Whatjusthappened wrote:

Momand2kids, I think if your kids are wanting you to have the test, that is a very good reason to do it. If you are negative, they can be relieved of some anxiety, and if you are positive, they can be tested if and when they are ready. After my results my 20 something year old daughter wanted to be tested right away, and thank goodness she tested negative. But if she had tested positive she would have had yearly mri's starting at the age of 25. Having the test meant a lot to her. Unfortunately, the kids are always going to have an increased risk just because of the family history, but genetic information is an important part of the puzzle when it comes to making health decisions.


BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Nov 27, 2019 12:28AM AliceBastable wrote:

Knowledge is always good. It doesn't coerce you into a decision, but gives you the information you need to make the best decision.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Nov 27, 2019 08:53AM edj3 wrote:

I'm with your younger daughter: if you can have the testing, why wouldn't you? For me, knowledge is power and also gives me a better sense of being in charge of me (if you get what I mean).

Breast cancer is my second cancer (melanoma was the first). My mother has chronic leukemia, my mother's sister has multiple myaloma and my aunt's identical twin died from acute leukemia as a child. I've always just assumed I, too, would get a blood cancer and that it probably had a genetic basis. So genetic testing was a no brainer.

Nothing popped hot for me. No genetic anomalies. In a way, that's a drag because now I have no easy story for why I've had two cancers other than crappy luck, or as my husband says, I'm an over achiever to get two w/o a genetic propensity for either.

I also have two sons and three, soon to be four grandchildren. If I carried a genetic anomaly, then I wanted them to have all the knowledge they could for their kids.

It's definitely a personal decision and these are the personal reasons it was a no brainer for me.

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 27, 2019 11:44AM dakrock wrote:

It was recommended to me by my breast surgeon to have Genetic testing done since I had ILC, then a melanoma and I have an underactive thyroid. I also just had a basal cell on my face which is where my melanoma was. She sent it to the Invitae36 Gene Panel for testing. The test came back saying this:

one gene was reported to have a variant of uncertain significance (VUS). The MUTYH gene had a c.576+3A>G (Intronic)variant. The available information suggest it might be benign but this has not been confirmed. Test results were inconclusive for the MUTYH gene. It could be a normal gene found in my family or it could be associated with an increased risk for cancer. We will not be able to obtain any further information on this variant until Invitae has enough data that leads them to reclassify the VUS. I must keep them updated on my current address and phone number.

Does anyone understand this. Should I be worried?

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)

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