Canadians in British Columbia

My link has also disappeared

Happy Valentines Day!

Marian, sounds like you're having a great time! Hopefully we can connect in YVR this year lol.

I noticed the "Canadian Connection" thread missing too and have been wondering what happened.

I was back in Canada to see my Onc last month and I'm NED! Letrozole is working so I'll gladly suffer the miserable side effects.

Hello to old friends and new

Moderators.

 Wondering what happened to.the link. The Canadian connection..calling all Canadians?? It has disappeared from the forum

Thanks, Carrie! I have an appointment with Dr Perry Gdalevitch in 2 weeks and I'm really excited to get back on track

Well, back to the drawing board. Dr Gdalevitch's office called today to cancel my appointment (in 3 days) because she is moving her practice out of the province shortly & suddenly can't take on new patients.

The referral process is such a joke. I can only be referred to one PS at a time. Each one can take weeks to respond. If they are taking new patients it takes months to get an appointment. Then they can cancel on you at the last minute.

The breasts that I was promised would take 2-3 months are still a pipe dream 7 months later. I don't understand how they can dismantle me and not put me back together??

Gutted. Broken. Abandoned.

Hi, everyone. I've been a lurker for a few months, and this is my first post.

@Fluffygerbillips - were you able to get an appointment with Dr. Bovill? I had a unilateral mastectomy with direct implant reconstruction in February, and Dr. Bovill was my plastic surgeon. I'm satisfied with the results and the post-op care. I also had a pre-op consultation with Dr. Van Laeken last year when I was considering a December surgery date. Although I can't speak to her care, I found the consultation informative and didn't have qualms about being her patient. Unfortunately, I don't have knowledge of their new patient policies.

I'm curious about the group's experience with post-treatment care in Metro Vancouver. Although I haven't yet reviewed my post-mastectomy pathology report with any doctors, I was informed by my general surgeon's office that there's no evidence of malignancy. My follow-up care is a big question mark to me. I'm kind of in between family physicians at the moment. After I meet with the general surgeon, I believe I will be discharged from her care. I'll have periodic check-ins with the plastic surgeon until I'm ready for balancing surgeries and nipple reconstruction. What should I expect in terms of ongoing screening and care? Your input is appreciated; feel free to point me to any existing posts or topics that may be applicable.

Captain if you check the breast cancer management guidelines on the bcca webpage (try google) you can find the what the rules are regarding free testing. They won't do the test if a tumour is very small and chemo is not indicated. They won't do the test if the results have not been sufficiently proven to their liking, younger women for example whose numbers were small in the original studies, also women who are node positive. They also won't do the test for women who will not or cannot do chemo.

My treatment at Surrey was over five years ago so I can't make any comments or onc recommendations. I was surprised at the time when chemo was recommended and believe me I thoroughly researched the idea before accepting. The BCCA librarian emailed me full text copies of studies that I could not access online. Once I started chemo I can't tell you how much care and detail went into making the chemo safe.

Kathy

Well Fluffy, I was dismayed to read about Dr. Gladevitch, as she assured me she could do my surgery in July. I am away for 3 months so asked her if I could book in advance. She said she would have no problem getting me in, so I wasnt too worried about it. I am also scheduled to see Sheina Macadams in Sept. 2016! Yes, next year Sept. As Dr. G told me she wasn't sure I had enough belly fat for DIEP so I thought I would get a 2nd opinion.

Have you tried Dr. Kim In Surrey? I heard he was pretty good too...

Wishing you success in your reconstruction

Jade-dream I think all of the BCCA centres are in communication with each other in regard to treatment guidelines. I mentioned above about the BCCA webpage, here is the url if you are interested. Table 4 near the bottom shows the criteria (or not) for OncoType testing.

These are the treatment guidelines for ER positive / Her2 neg cancers (dated Jan 2013 so may not be the most current).

http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Breast/Management/Hormone+Receptor+Positive.htm

I didn't have the onco test either, it wasn't available in 2009 but even now with one positive node I wouldn't be eligible. I looked at your numbers and thought - tumour grade 3? - well of course chemo would be indicated - well I was wrong, a grade 3 tumour if you are node neg, it appears, is precisely the type of tumour that needs to be tested in order to possibility rule out chemo. (see Table 4) The fact that you didn't get the test could be because you had more than one tumour in the same breast and so both tumours would need to be tested?

Anyway back to your questions. Unfortunately hormone therapy appears to benefit everyone who is ER or PR positive, unless weakly, so that is why it is recommended - see point 2 near the very top of the guidelines.

2. Hormone therapy for five years should be considered for all women with hormone receptor positive breast cancer (estrogen receptor [ER] and/or progresterone receptor [PR] allred score 4-8/8; or 1+ , 2+ or 3+) based on robust large clinical trial data sets establishing a significant survival benefit.2

Sorry not to be more helpful. I understand. One of the reasons I accepted chemo was that I didn't want to have to be on a pill for 5 years. I only committed to myself to try the Arimidex for one year (because of that one damn node) but kept on with it for longer because of all the good things I learned about the therapy here, but did end up in the end stopping early but only a little short of the five years.

BTW chemo was hard for me too, the photo avatar I am using was taken just outside of Chase BC about four months after finishing. At that time I could barely walk 1 km on the level and it took several more months until I could do 5 km, but it was a beginning and I felt so good to be out and traveling (even though it was hot and I vomited in the parking lot from heat stroke probably because I had started Arimidex and going through a second menopause, but I felt so good regardless).

Anyway I also wonder about my real recurrence rate especially now that newer generation tests are becoming available. Captainsupport mentioned on another thread about a BCCA clinical trial starting shortly perhaps with the Oncotest but I wonder if it could be with one of the the new tests as I believe British Columbia researchers have been doing work in this area. <Pam50?> Must do a bit more digging.

Kathy

I think it is worth asking about. I think they keep tissue for quite awhile~~I recall asking to have the hormone receptors tested after my mx just in case they had changed and that would have been some time later.

Since I had so many positive nodes, there was no reason to have the oncotype test done. Nice of you that no nodes and thus no rads!

Just 3 months post chemo is not long and hopefully the fog will recede!

Jade-dream, sorry I honestly don't know who you would contact. I hate to say it but I know we are lucky to have the big cancer agency here. I feel that if I had had a legitimate reason for the oncotype test that my MO would have at least discussed the options with me back then. I would press for it with the team regardless of what they have said in the past especially now that you have more information and the help kathy has given you with the links. Also have you asked your MO and team about adjuvent online? I asked my MO to do it for me at the beginning and then after all my treatments~~no difference but the first time it was verbal on the phone. It tells you the risk of recurrence based on your pathology and what treatments you have had. My chance of recurrence was really high but with all the treatment it went way down and the hormone therapy I am on for 5 years (Anastrozole) is actually one of the bigger "guns."

Thanks marianeliza. The adjuvent online information would be helpful. One of the oncologist practioners had mentioned on 2 occasions that she didn't know if the oncologist had done it or not. Maybe I need to get more insistent in order to get it done. I am supposed to be on aromatase inhibitors, but have asked them to give me until July. ( my whole system is so messed up from chemo that I asked for 3 months away from all drugs). It would be helpful to have some data though. The way things are handled seem very unaccommodating here in Vernon.

Sneakychiquita, thanks for your reply. It makes sense that maybe with two tumors, one small sample of one would not be reliable. I guess that it's all water under the bridge for me now. Maybe the adjuvent online information would be more appropriate for me at this stage. I'm going to try for that. I should have been better informed earlier on, but I was too sick at the time and it seems they don 't offer any options or information here if you don't ask. Thanks for the info.

Amy, you don't have to decide by tomorrow. Don't rush into it if you are not pleased with your doctor. A few days more won't hurt. I sent you a PM

Normally PET and/or MRI is not done until after surgery and not necessarily even then, especially the PET. Try to stay away from what is done in the US because often enough it is about money not necessity. Sometimes chemo is done first but that may be to shrink the size of the tumour before surgery. But first things first~~sounds as though you should see a surgeon. But I am confused about the oncology dept. calling you~~do you have an appointment with an oncologist at BCCA? If so, then he/she should also be able to answer questions and make some sense of what is going on. Take a deep breath and tomorrow hopefully you will be able to start getting some answers.

Kathy thanks for letting us know about ILC and MRI's. I guess it comes down again to how individual each of our BC's are. I see that you are almost finished your 5 years of anastrozole. Will you stop at the end of 5 years?

Amy, I hope you were able to get started today on seeing the surgeon and/or the oncologist.