Members in Canada

Hello to all the members in Canada,

Would like to ask if you have information about TNBC resources in Canada for a member who
posted x2 on thread http://forum.tnbcfoundation.org/newly-diagnosed-support_topic4924_page4.html    (page 4)

Would you read the posts of the new member from Canada on the above thread?
If you have any info to share about the best way to get an opinion from a TNBC expert in the
Ontario region, am sure the info would be appreciated if the member should need that info.
Also if you can share any information about using the Canadian health care system for someone
recently diagnosed

Thanks.

With caring and positive thoughts,
Grateful for today...............Judy

Hi,

AnnaTNBC/2013 from the Toronto area posted today on a new thread
    http://forum.tnbcfoundation.org/already-had-surgery-just-starting-treatment_topic11007_post111514.html?KW=#111514

I thought I would post on this thread to let our other Canadian members know that we have another
member from Canada.

I apologize that I seem to remember some other new Canadian members recently posting. I will try
to find those posts.     If you are new and from Canada, if you would like to say "Hello" on this thread,
please do so.      Boo has posted on this thread....see above.    I did not want to take the liberty to post
our other Canadian members names on this thread .........will leave that to each member.

Thinking....................
       Probably better to respond to members on their respective threads.
       When someone first joins our TNBC Family and the forums, most likely they are not aware
             of the other members who are from countries outside the USA.
       Maybe use this thread for a quick Welcome for new members from Canada......with still
              using Welcome New Members and other threads for ongoing posts on the various topics.
       Maybe share any information about using the Canadian health care system for someone
              recently diagnosed with TNBC.
       Maybe share specific TNBC resources in Canada.
       Maybe give general info re: where the oncologists with the most TNBC experience are in Canada.
       ****Since I am not from/in Canada, let the Canadian members use this thread as they wish.....
              or not wish.

With caring and positive thoughts,
Grateful for today............Judy

Hi Shari,

   

    Hi Fellow Canadians!   Anna, Afterglow, Boo, Silver Cloud and Helen, how are you doing these days up there in BEAUTIFUL Nova Scotia. If my memory is leaving anyone out please sign up to this thread. I am glad there are more and more of us but wish none of us had a reason to be here.


                            I had my treatment at the Durham Regional Cancer Centre in Oshawa, Ontario, East of Toronto. When I was in treatment the Centre was fairly newly opened and most of the Oncs were from Sunnybrook.


                           I recently moved and so am being seen at the Ottawa Hospital on Smythe Road. Fantastic Place.


                           I know that we are all at various stages and I know as I am sure you do that this site is a blessing for all. Take care.   Love, Annie






                  

Fellow Canadians, I need to vent about my experience with genetic councillor appointment. I was diagnosed with tnbc in jan, this year, I am 54 years old. I requested genetic testing for brca genes because I am adopted and have no family history. Well I got all the forms in the mail and filled them out basically stating on every question, " unknown, I am adopted". I had my appointment yesterday and was told that because I have no history and even though I am tnbc, I do not qualify for testing. How unfair is this? I feel so discriminated against for something I have no control over. Well it didn't take me long to pull the only ace card out of my back pocket and told the councillor that the only information I had about my biological mother, was that she was Jewish as my adoption was private and arranged by my parent's Rabbi. Well this made a small difference and I will now qualify for testing of the 3 Jewish genes, but not the complete test . I am very thankful for at least this, but still feel mad and let down by our government policy regarding an obvious loophole. I am sorry for such a long rant, but it does feel better getting it off my chest ;)
On a better note, I had my 4th chemo yesterday, and my tumour has shrunk from 3.4 cm to less than 1!!! My oncologist said to expect a big decrease by next appt. as yesterday was first docetaxol. Feeling really good so far and feeling optimistic. Also I am considering having my ovaries out regardless if my mini brca test results as a precaution, if they will do that? Thanks everyone for listening, hope everyone is well, Shari


Edited by Silver cloud - Mar 29 2013 at 7:12am

Annie, I am being seen at sunnybrook which is already a 2 hour drive. Apparently this is all provincial government policy. As far as the test goes, they are only testing for the three genes most likely carried by the Jewish population, so unfortunately it is not the complete test that non Jews would have. I guess I have to take what I can get, but In hind sight, I wish I had known this as I really wouldn't have offered the "adopted " information. My adopted mother died of bc at age 45, her mother died of bc at 60, and her bother of liver cancer in his 50's. this would have qualified me for complete testing, but no, I had to be honest and offer the adopted info. so if there are others in similar situations, think it through! Again, thank you! Shari

Edited by Silver cloud - Mar 29 2013 at 7:13am

Hi Carolyn,my genetic councillor said that sunnybrook is trying to get testing approved for women who have tnbc increased to those under 50. I believe she said right now the ministry approves those under 40 (I may be wrong on this as when I heard 50 I got upset as I'm 54 and out of luck). I believe your right about our American sisters, 60 being the cut off age and I also think that they don't need family history, that having tnbc automatically qualifies them. She also told me that there are lots of women (besides being adopted) who don't have access to family information who are just not even considered. For those of us at a disadvantage already not knowing what our inherited future holds (diabetes, heart disease, stroke, epilepsy etc) this is just shameful when it could at least allow us to make a more knowledgeable decision on the best treatment, which could actually save the ministry money in the long run. If I go for the recommended lumpectomy, then develop bc In my other breast, I WILL go back for a double mastectomy which could have been avoided by going for a double in the first place.
Enough of my rant! Today is a beautiful sunny day-I feel good and am thrilled with my chemo progress, so big smile. I agree, it's nice to see some fellow Canadian sisters as well as our American! Thank you for all the support and friendship! Shari

Hi Andrea, yes there are other metaplastic ladies here and hopefully they'll get the chance to chime in, if not you could go ahead and start your own thread asking for input. I had a giant tumor with 3 lymph engagement, and thanks to one of the founding members here, a Canadian of course!, she counselled me to ask at every turn for the kitchen sink treatment and insist on looking at available clinical trials. I'm pretty sure the clinical trial I ended up in was what gave me the extra fight that I needed so I'm hoping that you can open that door in your own treatment.

AndreaVB, a survivor,

Some feel one is a survivor right after diagnosis.
Once one gets the diagnosis..... one is still living, surviving = a survivor.
Others wait a certain number of years before using the term survivor.

I go with being a survivor right after diagnosis......so hope it was OK to call you a survivor.
Actually, I prefer the term thriver.    Obviously, easier to use thriver after one completes one's
     treatment plan.

There are at least 2 already started threads related to metaplastic TNBC breast cancer:
Any metaplastic bc patients?
http://forum.tnbcfoundation.org/any-metaplastic-bc-patients_topic8914.html
Including the third as there is some general information but please note the thread is in the
    recurrent section.   Sometimes the newer members wait awhile.....and sometimes they don't......
    before reading the threads in the recurrence section.
http://forum.tnbcfoundation.org/my-visit-to-md-anderson-and-metaplastic-bc_topic8853.html

You might like to consider posting on the above 1st noted thread......... asking if members given the
diagnosis of metaplastic TNBC have any additional/updated metaplastic TNBC information to share.


With caring and positive thoughts,
Grateful for today............Judy

Edited by Grateful for today - Mar 30 2013 at 12:10am

Hi,

This is in regards to BRCA testing.
I am not from/in Canada but did find some articles that MAY be helpful if addressing/advocating
     for changes with the BRCA testing policy in Canada.

In the USA, December 2012:           
In accordance with the guidelines set forth by the U.S. Preventive Services Task
Force (USPFT), the American College of Medical Genetics, the American Society of
Clinical Oncologists, the National Comprehensive Cancer Network (NCCN), and the
American College of Obstetricans and Gyncologists (ACOG),
        Health Net Inc. considers genetic testing for BRCA1 or BRCA2 medically necessary
                      for any of the following:

 Diagnosed age < 45y

 Diagnosed age < age 50, with > 1 close blood relative with breast
cancer < 50 y and/or >1 close blood relative with epithelial ovarian
cancer at any age (including cancer of the peritoneum and fallopian
tubes)

 Two breast primaries when first breast cancer diagnosis occurred <
age 50y [Two breast primaries includes bilateral (contralateral)
disease or two or more clearly separate ipsilateral primary tumors
either synchronously or asynchronously]

 Diagnosed age < 60 y with a triple negative breast cancer (i.e., ER-,     ********
PR-negative, and HER2-negative)       

 Diagnosed age < 50y with a limited family history (Individuals with a
limited family history, such as fewer than 2 first, or second-degree
female relatives or female relatives surviving beyond 45 years in either
lineage, may have an underestimated probability of a familial
mutation)

 Diagnosed at any age, with > 2 close blood relatives with breast
cancer and/or epithelial ovarian cancer at any age

 Diagnosed at any age with > 2 close blood relatives with pancreatic
cancer at any age

 Close male blood relative with breast cancer


 For an individual of ethnicity associated with deleterious mutations
(eg, founder populations of Ashkenazi Jewish, Icelandic, Swedish,
Hungarian or other), no additional family history may be required

Note: Testing for founder-specific mutation(s), if available, should be performed
first. Full sequencing may be considered if other Hereditary Breast/Ovarian
Cancer criteria is met.   

5. Women with a personal history of ovarian cancer (including cancer of the
peritoneum and fallopian tubes).

 For an individual of ethnicity associated with deleterious mutations
      (eg, founder populations of Ashkenazi Jewish, Icelandic, Swedish,
      Hungarian or other), no additional family history may be required

Note: Testing for founder-specific mutation(s), if available, should be
performed first. Full sequencing may be considered if other
hereditary breast and ovarian cancer (HBOC) criteria is met.     

6. Males with a personal history of breast cancer

7. Personal history of pancreatic cancer at any age with > 2 close blood relatives
with breast and/ovarian cancer and /or pancreatic cancer at any age

8. Family history only

(Testing of unaffected family members should only be considered when no
affected family member is available and then the unaffected family member with
the highest probability of mutation should be tested. Significant limitations of
interpreting tests results should be discussed)

 First or second-degree blood relatives meeting any of the above criteria
 Third degree blood relative with breast cancer and/or ovarian cancer
with > 2 close blood relatives with breast cancer (at least one with
breast cancer< 50y) and/or ovarian cancer

* Close blood relatives include first-, second- and third degree relatives. First-degree
relatives include parents, siblings and children on both maternal and paternal sides.
Second-degree relatives include grandparents, grandchildren, aunts and uncles,
half-siblings, nieces and nephews on both maternal and paternal sides. Third-
degree relatives are relatives with whom you share one-eighth of your genes, such
as first cousins.
        https://www.healthnet.com/static/general/unprotected/pdfs/national/policies/GeneticTestingforBRCA1andBRCA2.pdf

                                                -----------------------

4 authors of the article:
"The prevalence of BRCA1 mutations among young women with triple-negative breast cancer"
are from the Univeristy of Toronto, Canada.
( Inuk Zandvakili,10 Robert Royer,10 Song Li,10 and Steven A Narod10
10 = Women's College Research Institute, Department of Public Health, The University of Toronto,
           Toronto, Canada
Conclusion: "Our study indicates that young women with a high-grade triple-negative cancer and
no family history of cancer may be candidates for genetic testing. However, women with other histologic forms of cancer (e.g. ER-positive or HER2-positive) and with no family history are unlikely to carry a mutation."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2666759/


Just thinking..........
     Maybe one could make a copy of the above 2 references when discussing/going for BRCA testing.
     Maybe any one interested might consider contacting one of the Canadian authors of the article.   
     Also, there is a TNBC forum member TracyAMac who in Oct 2011 was elected an official member
           of Ontario's Provincial Parliament.....? how long terms are.   ? if she might be able to suggest
           best way to have getting BRCA testing for TNBC under 60 in Canada looked into.



With caring and positive thoughts,
Grateful for today.............Judy