Any triple negatives in Montreal,Ottawa Toronto?????

debsie1

Hi;

I wrote a few weeks ago about my sister being diagnosed with triple Neg....she had her surgery(lumpectomy ) today in Montreal. She asked me to please ask you ladies if there are any other triple negs who are in Montreal or even in Canada and what your treatments were...she is very stressed about the diagnosis and really worried about the outcome. Any feedback would be most appreciated.

Debbie

Luah

Hi Debbie: There are lots of us in Canada. In fact, here in Toronto, we have a little group that meets informally from time to time. I connected to it through a local bco.org member... so this is a great forum!

In Canada, I understand the typical chemo regimes for aggressive BCs such as TN are FEC-D and, with some oncs, dose dense AC-T. Depending on size of tumour and other risk factors, TC is also used. Radiation is usually done following chemo.

At this stage, it's naturral for your sister to be stressed. She has many questions and concerns, and no answers yet. However, once she has her pathology report - which her surgeon should go over with her - her onc will plan out treatment... and with a treatment plan in place, she will feel much better as she'll see a path to recovery.     

Babs37

Hi Debbie! I'm seeing Dr. Robidoux at the breast cancer clinic at the Hotel-Dieu hospital in Montreal. I was diagnosed in 2010 with TNBC, 2 nodes positive. Had neoadjuvant chemo: 4 dose dense AC followed by 12 weekly Taxol. Then had right radical mastectomy and had 25 rads to mx site and nodes site. I am now on a clinical trial : I'm taking Metformin 2X a day for 5 years. You (or your sister) can PM me anytime if you have questions and I 'll be happy to help. Hang in there! Hugs.

Isabelle

debsie1

Thank you Babs for responding. What is the Metformin 2x a day for 5 years for?????  Is it like a tomoxifin for triple negs? My sister has not signed onto this wonderful site yet so I hope you don't mind if I write you or PM you from time to time.

Stay well,

Debbie

debsie1

Hi Luah;

How wonderful that you have a group to meet with in TO. I would love to find one for my sister here in Montreal.And thanks for your kind encouragement...I'm hoping that once a treatment plan is in place she will start to feel better.

Continued good health to you,

Debbie

Luah

Debbie: I believe the Canadian Cancer Society has a peer-support program that connects newly diagnosed women with volunteers who have been through it. You might want to make inquiries http://www.cancer.ca/Quebec/Support Services/QC-Cancer Jecoute.aspx?sc_lang=eN  and see if your sister can be linked up with a fellow TN survivor.   

Here is another site that be useful: http://www.tnbcfoundation.org/

Babs37

Metformin is a drug used for diabetes. They think it might lower chances of recurrences of BC so they are testing it in a clinical trial. Tell your sister to ask her doctor about it.

debsie1

Thank you so much to both of you....we will check it all out asap

Hugs,

Debbie

dayzoo

Hi Debbie....



I was diagnosed with TN in 2009 - had lumpectomy, FEC chemo (6 treatments), then radiation. 4 years later I had a reoccurence. I had a mastectomy, followed by 4 rounds of taxotere/cyclophosphamide. I just finished all my treatments last week.



I live halfway between Toronto and Ottawa. We are lucky to live in a country with such excellent health care...



All the best to your sister...there's so many survivors out there!!

debsie1

Hi Dayzoo;

Thanks so much for replying. Sorry that you had a recurrence but happy that you are now finished all treatment. Was it the same treatment both times TAC??? My sister is just waiting to get her pathology this week and then she can start her chemo and radiation. Wishing you great health!!!

Lori678

Hi Debbie,

I was diagnosed with TNBC in October 2012....finished Chemo last week....4 treatments of AC and 4 treatments of T. Starting 6 weeks of radiation in May. I live in Ottawa, I would be happy to talk to your sister.

Lori

schatzi14

Debsie1...so sorry to hear about your sister. I too am TN altho I have 2% ER+ and have been taking Anasrozole for over a year now. I have my doubts if it will do any good in my case.

I also had a lumpectomy and chemo...4..DD AC (could only take the first 3) and 12 weekly taxols. I also had 16 rads.

I just realized I am basically TN this last month only because I didn't ask the right questions at the time. Since I last saw my MO last month, I have learned even more about TN so I have many unaswered questions.

I wish your sister well...perhaps she might like to join us here.

debsie1

Hi ;

Thanks for answering. Can I ask you why you were only able to take 3 AC? We met with the oncologist today and he said that my sister would be taking 6 TAC dense dose. He seemed concerned that 8/9 lymph nodes were infected. He has me very worried....any thoughts???

debsie1

Hi ;

Thanks for answering. Can I ask you why you were only able to take 3 AC? We met with the oncologist today and he said that my sister would be taking 6 TAC dense dose. He seemed concerned that 8/9 lymph nodes were infected. He has me very worried....any thoughts???

debsie1

Hi Lori;

We met with the Oncologist today and my sister will be starting dose dense chemo next Monday. He seemed quite concerned with the 8/9 lymph nodes infected...and now has me very worried. I thank you for your offer of my sister speaking to you ....I will speak with her tomorrow.

Stay healthy

Debbie

schatzi14

debsie1....I couldn't take the 4th DD AC because I developed blood clots in my lungs. I couldn't even have a shower or brush my teeth without sitting down. My MO ordered a CT scan of my lungs and sure enough due to the AC, I had blood clots. He put me on 12 weekly Taxols and I had no problems. I had to give myself daily blood thinner shots for 6 months. I am still short of breath sometimes but he also told me my lungs are damaged somewhat. I was the exception rather than the rule. Was just my lousy luck.

Other than that, I am fine....I am also 69 so no spring chicken! Your sister should do just fine!

Luah

Debsie: Try not to wrorry too much. It's true that the greater proportion of lymph nodes that are affected the greater the risk, but it can also mean that the nodes did their filtering job and stopped the cancer there. It's good your sis is set for dose dense; throw everything at it!

BY the way, I have a friend who had a 9 cm tumour, 23 of 25 nodes affected; she is 4 years out and doing fine. 

schatzi14

I wonder why some surgeons take ie: in your case Luah, 14 nodes while in my case, just 4? Curious. As I recall you had no lymphedema either...

Babs37

schatzi14- My BS/ONC explained to me that at surgery, they take out a "grape" of nodes. Some have alot in that "grape" like Luah and some have less, like for me it was 8. Everybody is different.

schatzi14

Well that is a helpful explanation...thanks..have never heard that before!

Alicia-Rae

I live in Mississauga I was diagnosed in 2009 I had 3 rounds of FEC and 3 rounds of taxotere and then 30 consecutive rounds of radiation. They took 22 lymph nodes from my "grape" haha and only 4 positive. I know your sister is worried it's scary but she will get through it

slv58

I live north of Toronto, was diagnosed in Jan. did high dose FEC D, lumpectomy and am doing rads now. I had PCR (pathological complete response) from chemo-there was no cancer left after lumpectomy! Treatment wasnt easy, but I got through it and feel very lucky with such a great team on my side. Nobody wants to go through this, but it is very doable. My advice would be to make a list of all the questions, have someone with your sister to remember answers and to be kind to yourself, don't overdo things and be positive!

Seebha

Hi Lori,



Just saw ur post , I'm also TN and started my chemo this week. Just want to know what side effects u had for chemo? Was it really bad?

hrf

I was dx with TN in October 2004. HD lumpectomy, chemo (FEC), and rads. Will be 9 years this fall.

HHCats

I live in Burlington, outside of Toronto towards Hamilton. I was diagnosed October 2, 2012. I had a lumpectomy on October 24 at Womens College Hospital in Toronto. Then I did 4 dose dense AC and then 4 dose dense T at Juravinski in Hamilton. On April 22, 2013 - I had a bilateral mastectomy (my choice) and DIEP Flap reconstruction at Hamilton General. I am glad I did the bilateral because although no cancer was found in either breasts at removal - I had a lot of lobular activity in both sides - a cancer marker. I've had a bone scan and pelvic and abdominal CT scan right after my lumpectomy both of which were clear. I'm also taking Metformin twice a day.

Sabel

I was diagnosed with triple negatives, but I don't think I'll be of much help as at 70 years of age I made the decision to do nothing  more than have a lumpectomy. That took place on July 17, 2012. Both my surgeon and my oncologist recommended 4 sessions of chemo and 7 weeks of radiation. I knew at the outset that there was no way I'd survive the treatment as I have a couple of auto immune diseases as well.

A couple of weeks ago, I had a routine mammography with no irregularities. It's a little strange, I think, but I wasn't nervous at all. I will presume that I'm clear until the next symptom shows up. Maybe never??

schatzi14

Sabel....I am your age as well. I did do the chemo (3 DD AC and 12 weeks of Taxol) and 16 rads. I will have my second mammo the end of August. It`s a crap shoot but so far, so good! I hope the same for you