Canadians in British Columbia
Comments
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Thanks Pearl!
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We're going to need nametags with real & screen names because I will be SO confused
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Yep I will bring name tags!
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I was hoping for old school style like covert operative making contacts. Say maybe a newspaper in hand or a rose or maybe special phrase. :-)
Looking forward to meet everyone! We should leave our contact, email and phone number when we meet. Will be easier to organize next time
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Good idea to make a list. I will look for the Dobie at the door 🙂!
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Dearlife, forgot to tell you Stacey cannot come.
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Thanks Marian. I went to the restaurant today to see where we will be sitting and asked for the quieter area at the back. But maybe we will be the noisy ones!
Here is the list of who I think is coming. Please let me know if there are any changes:
Wrenn
Koshka
MarianElizabeth
Walden
Ossa
NVDobie
Moth
Pots
Kathy044
Ase (with Kathy)
BlueSky
Van2018
DearLife
I will post another reminder closer to the day but here are the details of our lunch:
1:00 pm Saturday November 24
Cactus Club, Broadway and Ash
It’s very close to the Broadway and Cambie Canada Line station. The restaurant says “there is always parking on Ash” and there may be parking on Broadway since it is not a weekday. Bring loonies for the meters.
One thing to note - because we are more than 10 people, there is an automatic 18.5% gratuity added to each individual bill. So the tip is already included.
The tables are reserved in my name - Pearl. (I didn’t want to tell them my first name was Dear 😃.)
It will be so great to meet in person!
❤️
Pearl
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Thanks, Pearl
Looking forward to our lunch. Has gotten a lot of support and advice from this group. would be lovely to meet everyone is person finally.
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Thanks Pearl, I'mlooking forward to meeting all of you. Putting names with faces will be fun.
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Ossa and Ase is the same person and I am coming with koshka lol Look forward to meeting new and " old" BC ladies
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Oh yay we are twelve and will fit nicely into two booths with no one at the end.
Ossa/Ase I am glad you can make it 👍😃👍.
❤️
Pearl
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DearLife, I will be late on Saturday but for a really good reason so I hope you and the group will excuse me. I should be there by 1:30.
XXOO Marian
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We will see you when you get there MarianElizabeth! Thanks for making the trip to see us from Victoria.
❤️
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SEE YOU TOMORROW FOR OUR BC LUNCH!
1:00 pm Saturday November 24
Cactus Club, Broadway and Ash
If there are any last minute attendees, we have room for two more. Just send me a PM. We would love to see you!
❤️
Pearl
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I M sorry I did not make it I was vomiting all day so would not have been good company will make the next one
I know you would all have had a great time
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Twelve wonderful women came together yesterday for lunch in Vancouver. So much warm support! We shared advice and enjoyed each others company, friends new and old.
We missed you Ossa and hope you feel better soon!
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Great to meet you all on Saturday. Just wanted to share this info from ASCO, as a lot of us seemed to be discussing hormone therapy options: http://www.ascopost.com/News/58912. I think it gives some guidance on who benefits from the various options. Hope you find it useful.
I meant to ask at lunch if anyone has been advised to do 10 years of tamoxifen? If so, do you know if BCCA is ordering the oncotest that is designed to look at the benefits of extending therapy beyond 5 years?
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Hi all;
I went in for revision surgery yesterday only to be told at around noon that I had been bumped and it surgery was unlikely. They asked me to wait until 2pm then sent me home. Ugh. Have a new surgery date for end of Jan. Means I will have had the TE in for 10mos, not 6. I'm super cranky about it, and feel like I might've made a different decision had I known how this would go.
Grrrr.
Thanks for reading
Really great to meet you all! Thank you Pearl for making it happen!
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Pearl
Thank you so much for organizing and thanks for the pic!
Warden1
I did ask Chia about the 5 yr vs. 10 yr. He said 10 yr is currently standard care for anyone who has positive nodes. Negative nodes like me, he said probably 5 yrs but we can discuss when 5 yrs is up.
The retired oncologist that works at InspireHealth Doc Ragaz has strong opinion about everyone should be on 10 yrs.
I think the challenge is weighting the risk of possible SE including Uterus cancer from Tamoxifen and Osteoporosis from AI with Recurrence risk. but I did read studies support longer Hormone therapy, some even suggest longer than 10 yrs for increased benefit on reduce recurrence. However current materials I read seem to suggest to switch between Tamoxifen and AI, some at 5 yr mark, some at 3 yr mark depending on menopausal status as well.
BlueSky
Sorry about the surgery. I know you did a lot of follow up to get this date locked down and yet they changed on you again. We are here with you. I know you want to get it over with, but now you have a surgery free Christmas. So maybe it is not all bad?
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Ladies
I didnt get a chance to mention on Satuday, Kerry (Van2018) and I are part of support group met thru Inspire Health program, consist of 9-10 ladies who has just gone thru BC this year.
We have created chat group on Whatspp to talk about SE issues, upcoming relevant events, program and classes available for BC patients etc.
We have been meeting once a month for dinner or coffee to chat and connect.
If anyone would like to join the group on whatspp, or join us for next get together. please message me and I will add you to the group, which is named "Inspire Superwomen Group. :-)
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Warden
Below is what copied from BCCA website for Professionals/Docs.
2A. Premenopausal women
For premenopausal women, the hormone therapy of choice is tamoxifen (BRAJTAM). An alternative for women with contraindications to tamoxifen is surgical oophorectomy (permanent) or medical menopause (LHRHa; reversible), with or without an aromatase inhibitor (BRAJLHRHT).3 For select low stage, non grade 3 disease, hormone therapy with both tamoxifen and an LHRHa may be an acceptable and/or superior alternative to chemotherapy.
Duration of therapy:
The current standard of care for most premenopausal women is 5 years of hormone therapy. Women who remain premenopausal after 5 years of tamoxifen may derive a small additional survival benefit from continuing tamoxifen to a total of 10 years. Women becoming menopausal near the end of five years of tamoxifen should be considered for extended adjuvant therapy with an aromatase inhibitor for a further 3-5 years, based on evidence of disease free survival and, for node positive disease, modest overall survival benefits. When menopausal status is uncertain, extended adjuvant therapy should be with tamoxifen, given that aromatase inhibitors are not beneficial in premenopausal women.
http://www.bccancer.bc.ca/health-professionals/cli...
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Oh BlueSky that is a big drag! I know you wanted it done with. I am sorry you have to wait once again.
I am having my first diagnostic mammo on Thursday. Scary. They say 25% of us worry about recurrence. Well worry is my middle name though I usually worry about the wrong thing and something else grabs me!
Gentle hugs to all waiting for procedures and tests. ❤️
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Continuing on the topic about Hormone therapy.
I saw my MO today, asked him about why some per-menopausal patients are prescribed with Tamoxifen + Ovary suppression or Aromatase inhibitor + Ovary suppression. He said a few studies have shown AI + Ovary suppression has better result than Tamoxifen, but Aromatase inhibitor does have more severe side effects including joint pain and osteoporosis. So they typically consider going with AI when patient is node positive and/or high risk.
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Bluesky, sorry I did not have time to talk to you being a next booth. However I am really sorry but you did not get your surgery and now it is such a long wait. I hope you have asked to be on waiting list.
I really enjoyed the lunch and conversation in our booth. The friend I was staying with in Vancouver has agreed that I can host the next luncheon which will be a potluck like we had for three years up until I moved to Victoria. If anyone is interested I would be happy also to entertain the thought of a spring potluck. It was hard not be able to speak to everyone and those who came to the previous potlucks will remember that at the last one, people stayed from until 4 PM as it was so good to be able to speak to many people and or just hanging around listening.
I have my MRI follow up on Friday so I will let you know next week what it showed. Meanwhile on my return to Victoria I had several messages waiting and if nothing changes my first chemo of Paclitaxel weekly will start.
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NVDobie-you are the best! Thanks for all this info on hormonal therapy.
I think my MO's recommendation was a little different than the protocol described on the BCCA website. Maybe that is because it is informed by the soft/text trial that was published this summer? In any case my MO didn't specifically say you had to be node positive to consider OS, just high risk enough to be offered chemo or under 35. She noted that all the options are highly effective, but estimated that OS+AI would descrease my risk of reoccurrence by an additional 5% (possibly up to 10% but hard to say) compared to tamoxifen alone. Although I'm node negative and highly ER and PR positive, my age and grade seem to be factors in offering OS. That said, she warned me that I would have more side effects with OS, so it came down to my preference. My side effects are mainly weight gain and lots of hot flashes, so still deciding what I can live with.
Being under 50, my doctors seem to consider moreaggressive treatments than they would typically for a patient over 50 or 60 with similar features.
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Walden 1
That makes sense. additional 5 and potential 10% improvement is good. I have done chemo with theoretically 5-7% improvement. Lumpectomy vs. mastectomy also up for odds for recurrence for 2%. so back to 5%.
Is your weight gain significant?
I suggest you ask your MO about whether weight gain from your hormone therapy will impact your recurrence risk? a few studies have link weight gain after treatment or diagnosis to unfavorable outcomes. There are a quiet few of them on the topic, some were focused on post menopausal, some were focused on obese BC patients, some are focused on lifestyle /exercise etc. I haven't read anything definitive to explain why. Besides everyone say we should keep active.
Since AI impacts our bone health, did you have a baseline bone density scan ? I am waiting on mine after discussion here with Moth. weight bearing exercise or staying active will help counteract the osteoporosis risk, so more reason to keep moving.
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NVDobie,
I am about 5-8 pounds over my normal, but that's after only 3 months. I hope this trend does not continue. I've been eating a very healthy diet, and exercising so there is not much more I can do lifestyle wise. I agree what is the point if my weight negates the benefit of the drug? The pharmacy at BCCA says 5 -10 pounds weight gainis typical.
I asked about a baseline bone scan, but MO said not needed. I read it is standard of care at some hospitals so I am confused by this. Then again I don't have any existing bone health concerns, so perhaps it's case by case basis or age dependent?
Great points NVdobie! I'm definitely going to follow up with my MO on all these topics: thanks for the heads up. I've been slow to go back to my MO because honestly I just needed a break from all these intense appointments. Just walking in the office can be stressful because "making the right choice" is never entirely clear.
Did your MO support your request for a scan, or did it take convincing?
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Speak of the devil: updated recommendations for extended hormone therapy released today. Postmenopausal study but worth a read for premenopausal patients too: https://www.breastcancer.org/research-news/asco-recommends-extended-hormonal-tx-for-some
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Hi, Walden
Thanks for the link. It is long time coming, with a number of studies supporting longer Hormone therapy. Well, we just started, so we will see how things progress in 5 yrs.
as for Bone density scan. I asked my GP. He is good in terms of accommodating my requests and concerns. Theoretically, Tamoxifen is bone friendly since it binds to estrogen vs. suppression. but he agreed it is good to have a baseline.
if you are on Arimidex or Aromasin or Femara, you should consider do a baseline. Talking to my friends in Toronto and here, it seems MO tends to wait for some symptom to start, which can be a few years after Hormone therapy, then they will order the test to confirm whether you have osteoporosis or osteopenic (pre osteoprosis), then they will introduce intervention.
If we have a baseline now, we have a idea how healthy our bones are at this point, regardless our age. Then we could take more actions to counter any possible decline of our bone health. At the bottom of the range vs. on the top of healthy range will drive different actions in our exercise and diet.
I will suggest to discuss with your GP. The difference would be it will take longer wait to get one thru GP vs. Oncologist's request is speedy.
also, if you have an appointment with your MO coming up, maybe try asking her again. Letting her know your increasing bone and joint pains are making your concerned about the bone health, would like a baseline text done.
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Marianne
How did your MRI follow up go?
Pot luck sounds good. Would love to meet everyone again, maybe get a chance to talk to more people as well. We can also do it in my house if you need a space, only thing is I live on the corner of North Van, maybe a bit far drive for some l but I have space here.
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