TNBC Talk - "Toronto Protocol" helps beat cancer risk

"Toronto Protocol" helps beat cancer risk

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Topic: "Toronto Protocol" helps beat cancer risk

Posted By: TracyAMac
Subject: "Toronto Protocol" helps beat cancer risk
Date Posted: May 22 2011 at 10:39am

This article was in a Toronto paper this weekend. It is not specific to BC but about increasing survival for adults and children genetically at risk for cancer - specifically those with Li-Fraumeni Syndrome (LFS). People who have this disposition have an 80% life time risk of developing cancer - breast cancer, brain tumours and bone/soft tissue tumours. I am very fortunate that I tested negative for the P53 mutation but have LF-like Syndrome given the cancer history in my family and that I have now had two of the most common LFS cancers. The survival rates for those who had surveillance in this study are very impressive.

Tracy in Toronto

http://www.healthzone.ca/health/illnessesissues/conditions/cancer/article/994997--toronto-protocol-improves-survival-for-children-with-cancer-risk

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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial

Replies:

Posted By: SagePatientAdvocates
Date Posted: May 22 2011 at 11:14am

Dear Tracy,

thank you for this fascinating article. I made the link “hot” for you.

http://www.healthzone.ca/health/illnessesissues/conditions/cancer/article/994997--toronto-protocol-improves-survival-for-children-with-cancer-risk - http://www.healthzone.ca/health/illnessesissues/conditions/cancer/article/994997--toronto-protocol-improves-survival-for-children-with-cancer-risk

I am having lunch this Friday with a Certified Genetic Counselor who specializes in reproductive genetics and I am printing this article out to discuss this with her.

all the best,

Steve

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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: 123Donna
Date Posted: May 22 2011 at 12:09pm

Thanks Tracy.

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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: TracyAMac
Date Posted: May 22 2011 at 12:54pm

I just had the pleasure of talking with Steve, our resident genetics guru on this forum! Thank you so much for the call Steve!

Steve, I am attaching a link about Dr. Steve Narod from Women's College Hospital. Dr. Narod is the Toronto expert on the emerging CHK2 mutation work...I am considering getting tested for it as some believe it holds genetic clues for people test negative on the P53 gene mutation.

Tracy in Toronto

ehttp://www.womensresearch.ca/people/faculty/narod.php

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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial

Posted By: krisa
Date Posted: May 22 2011 at 2:43pm

Steve,
Because you posted the link to the new guidelines for testing brca, I emailed my genetic counselor and we set up an appointment which took place on Thursday. My blood work was sent for brca 1 and 2 testing.
That evening, I was out having dinner and ended up In a conversation with two women(sisters) who shared cancer stories. I suggested genetic testing and gave them my genetic counselor's name.
The ripple effect in action :)

Posted By: judylynn
Date Posted: May 30 2011 at 9:22pm

Thanks for the info!

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TN metaplastic breast cancer; had mastectomy; completed chemo and radiation

Posted By: TracyAMac
Date Posted: May 30 2011 at 10:13pm

Hi Judy - I see in your tag line you had metaplastic TNBC- me too (one of two tumors in the same breast). There are several subtypes of metaplastic yet so little research out there. If you ever want to chat, let me know

Tracy in Toronto

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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial