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pattypoo54

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Reply with quote  #1 
Edge
I recently saw a genetic counselor to see if I should get tested for the brca 1/2 genes. She said she doubts my breast cancer is hereditary, My mom was diagnosed at age 65 , and I was diagnosed at age 50. My mom had a mastectomy only no other treatment, she did'nt die of breast cancer. My Dad also had colon cancer that he eventually died from. The genetic doctor said I am on the edge, I guess that means it could be hereditary, he said about a 3% chance. I have two daughters 16, and 23 years old, I am concerned for them. Since I had the triple negative breast cancer, which can be the hereditary type. What do you think Edge? My insurance would cover it based on my Moms diagnoses. Thanks for all the wonderful information you give us.
Patty
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Patty,  I have no family history other than my paternal grandmother having died of pancreatic at age 54.  I had no problem getting tested and having 2 daughters and hving TNBC at age 43, I felt it important to know.  I was negative so my girls should be ok as long as they keep watch.  I would still get tested if I were you, for your peace of mind.  Just my opinion, but I am happy to know I don't have braca 1/2.  Hugs,  Lee


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Karen1956

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Reply with quote  #3 
The only Hx of cancer in my directly in my family is that my paternal grandmother died of pancreatic cancer at a young age in the early 1950's. (My mom has since told me that on her fathers side there is some history of BC, but it is her cousin's children and maybe one of her cousins, so that link is fairly far removed for me to be concerned).  Due to being Jewish my onc wanted me to get tested as there is a higher incident in  eastern European decent Jews having the BRCA gene.  My insurance did not want to pay, so we just did the mulit-site 3 testing which is where the BRCA turns up most for me and it came back negative. Genetic counselor said that if that was negative, then the full testing would be negative (well not 100% but close). As it turns out insurance paid for this testing.  It is a relief to know that I am not a carrier for the sake of my 2 DD who are now 10 and 22 and for my son too who is 19.  I remember asking the genetic counselor what would be different in my course of Tx had I been positive and she said  nothing (I had bilat, chemo, rads, ooph and on AI's).So the testing really was more for information and for my children.
If your insurance would pay for the testing and it would give you peace of mind, I say do it.  Karen
BTW - remember thaty 80% of BC is not hereditary - the genetic counselor is right in generalities - but not in specifics.  So will testing give you peace of mind? or more worry?  I always believe in listening to your "gut" - what does that tell you?  Hugs, Karen
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Reply with quote  #4 
I was diagnosed at 39 with tn and my sister was dx'd three years later- we didn't have direct family, mother, grandmother, with a history, but all the docs said I needed to be tested.
When I did the family tree with the counselor we found a lot of colon cancer and breast cancer on my dad's side. That was the deciding factor.
I wound up being tested for BRCA and four kinds of colon cancer genes.

I tested positive for an unknown variant of brca2 and my sister didn't!

I think it is good to know.


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Calico

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I was tested due to my age at dx (41) but it was on the mammo a year earlier, so probably 40.
Negative.
A yr later mom was dxed and then my sis with colon cancer at 48 (dad's mom had it too).
Gina,
were those colon cancer genes part of the BRCA testing or seperate tests? (wonder if insurance would pay for that since we have a strong family history)
Get this, I just came upon my biopsy results from last years colonoscopy and it says beginning of celiac disease but then said normal results....celiac is at risk for colon cancer plus if so, one shouldn't consume wheat? Why is nobody mentioning that to me? No biggy?

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pattypoo54

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What does an unknown varient mean?
Patty
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Reply with quote  #7 
The colon cancer gene testing was covered under the insurance because I had such a strong family history of "stomach" cancer... back then they didn't know it was colon cancer.

I don't know about the connection with celiac disease- but someone should have mentioned that to you! As cancer survivors, we all need to restrict our meat intake as much as possible. It really helps us stay healthy.

An Unknown Variant means that not enough people have that particular variant of the gene so they don't know if it caused the cancer or not. It is very frustrating!


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Calico

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Thank you Gina.

Very frustrating indeed!!!

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Reply with quote  #9 

Patty:

 

Sorry I somehow overlooked this until now, but here, for whatever it's worth, is my long-delayed response.  I would agree with the advice here from Lee, Karen, Calico and Gina, and add that to my mind another virtue of the BRCA testing is that knowing BRCA status is valuable in optimizing therapy for triple negative breast cancer (TNBC) treatment:  for example, there is some provisional evidence that BRCA1-mutated tumors may be relatively chemoresistant to taxanes and relatively chemosensitive to anthracyclines.   So it can benefit clinical management to know BRCA status.

 

Calico:

You raised the issue of celiac disease (CeD), which is part of the inflammatory autoimmune family of disorders of the small intestine that also includes ulcerative colitis (UC) and Crohn's disease (CrD).  All three are associated with various other diseases, including cancers, but celiac disease is primarily associated with elevated risk of NHL (non-Hodgkin's  lymphoma, as well as T-cell and B-cell lymphomas)  and small-bowel adenocarcinoma.  However, the good news is that several studies strongly suggest that the gluten-free diet (GFD) protects from cancer development, as per the research of Carlo Catassi from the Center for Celiac Research (University of Maryland), among many others. 

 

As to the several associations with various non-cancer diseases and disorders, one is osteopenia as well as osteoporosis, as celiac disease adversely effects BMD (bone mineral density), so good bone health (especially via high-dose Vitamin D and bisphosphonates, along with consistent calcium intake) can avoid these complications.   It sounds like you don't have active disease but the colonoscopy may have uncovered some non-decisive but suspicious preliminary precursor evidence. From that, no cause for concern at this juncture but it does suggest a proactive posture to have periodic monitoring / surveillance.  The main diagnostic testing for celiac disease is via blood tests (testing for what's called anti-tissue translutaminase antibodies (anti-tTG) and anti-endomysial antibodies). Elevated levels of these antibodies are a sign of celiac disease since they are elevated when the immune system recognizes gluten as a foreign substance and increases the number of these antibodies to fight against it.  If there is any residual doubt from the blood tests (not often but still possible), then a following intestinal tissue check can be performed  (microscopic probe passed though mouth that gathers a sample of small intestine tissue).  

 


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

Calico

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Reply with quote  #10 

Wow,
thank you Constantine.
It did say on there that the gastro doc, who did the colonoscopy, should correlate with 'blood' test and I thought my "regular" blood tests that are done at with onc visit like cbc and metabolic profile...he didn't order anything.

My guess is he might have read only the summary, not the findings.

I bring it up with my Family practice doc next time and ask for these tests.

So, small bowel at high risk for carcinoma, not big colon? (like my sis)
Isn't it extremely rare to get one in the small bowel anyways?

He found a lesion but in the big bowel which I forgot what he called, looked like an accumulation of blood (cells)

 Edit: blood vessels

, sort of like a birth mark. I guess thats where he took the sample.
Yikes. A year prior nothing was found (or seen....different doc).

I forgot what it is called but I looked it up on the internet and estrogen would be helpful, which made me think that this developed because of estrogen deficency. But no treatment was suggested by him(and I wouldn't want estrogen anyway), he just said to come back in 4 yrs. (sounds really long now.....)

I am sort of glad I learn this now after the false positive MRI......lymphomas....yikes again.

I appreciate all the information!! Very much!!!

(Is there anything you don't know? )

I hope you have wonderful holidays!!


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