Canadians in British Columbia

BlueSky1969 · November 2018

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!

NVDobie · November 2018

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?

NVDobie · November 2018

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. :-)

NVDobie · November 2018

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...

DearLife · November 2018

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. ❤️

NVDobie · November 2018

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.

marianelizabeth · November 2018

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.

wrenn · November 2018

I too would like to meet again and get to know the people from the other booth. I really enjoyed our chat in our booth and it always amazes me how quickly we connect. My apt. is tiny so I am no help and I also never know when my inner recluse will show up.

Bluesky, so frustrating for you. Damn. I hope they can fit you in with a cancellation as well. So sorry.

Marianne, I hope you have few side effects with the upcoming chemo. I am so impressed with what some of you have had to tolerate and seem to do well. I would be doing a lot of whining and complaining.

Hoping we get another sunny surprise like we had yesterday morning although the rainy grey days aren't getting to me yet.

Take care everyone. xo

Walden1 · November 2018

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.

NVDobie · November 2018

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.

Walden1 · November 2018

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?

Walden1 · November 2018

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

NVDobie · November 2018

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.

NVDobie · November 2018

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.

DearLife · November 2018

Marian, let us know how you are doing. We are all thinking of you.

I too would love to get together again and a potluck would be lovely. My condo in Vancouver is very tiny, or I would be happy to host. I have space in our house on Galiano Island, but that is a long trip!

I went for my first diagnostic mammo yesterday. I thought they would tell me on the spot if it looked okay but there were no radiologists available - apparently they were all at a seminar yesterday. They said my doctor would get a report in 2 weeks.

So today I got a call from X-ray 505 to come in January for another mammo and an ultrasound. I told them I went through this last Christmas and I couldn't wait until January. They booked me on two different days, next week for another mammo and Dec. 20 for an ultrasound. I hate putting my family through this worry with me. This was how we spent last Christmas. We had to cancel our holiday in Hawaii because of my surgery and treatment,

It's in the same breast so I hope it is just fluid or scar tissue. I don't see how cancer could recur a few months after 16 radiation treatments. But it sucks..

NVDobie · December 2018

Dear Life

Does your lab have 3D? Maybe worth finding out whether 3D will be more indicative vs. having the same 2 D again in 4-6 weeks.

I asked about where I should do my follow up mammo, radiation oncologist suggested to go to the one I had history which was only one mammo and they couldnt see nothing.

I Asked Doc Chia this week. He recommended BC Cancer or an private lab in Fairmount medical building, he says they have the newest technology including 3D. I think Women's hospital also have 3D from what I can read online.

Keep us posted.

DearLife · December 2018

NVDobie - Yep I had 3 D tomography. Went to the private lab in Fairmont - Linda Warren & Assoc. They have always done my mammos. I pray they are just being cautious. Yesterday I knew enough to ask if I had dense breasts and was told yes, which makes them harder to read. I thought they were automatically telling women about breast density now in B.C. but I had to ask.

They say 94% of recalls are benign. Maybe this time I will be lucky. I’ll keep you posted.

BlueSky1969 · December 2018

HI all;

It was great to meet you all and thank you for your messages of support. I've been licking my wounds and reorganizing my life. Was deflating, but I've reoriented. And I'm baking. I'm a stress baker.

Thanks for the tip: I did ask to be on a waitlist, but was told there is none, and that her next surgery date is Jan 28th, full stop.

Oh man, Pearl, I'm sorry you have to go through this: the waits are gruelling. I am holding space for you and sending good vibes for expedience!

I look forward to the pot luck

moth · December 2018

Dropping in quickly while on break from final exam prep

BlueSky - sorry to hear about your delay, that truly sucks. I hate how they talk about patient centered care but so many things are obviously not patient centered at all. Is there any point now in looking for another BS? It seems out in Surrey/New West etc area, the waitlists for things are shorter but maybe starting fresh now will just put you in the same place...

DearLife - ugh, that's a kick in the teeth. When I had the callback (+ ultrasound + biopsy eventually) this summer about my healthy breast my MO told me that he thought they were just being super cautious. He was very reassuring before I went in for all the appointments. Have you or your docs seen the initial report itself yet or what birad they gave it? I'm planning to ask for an MRI for my dense breasts. My gp said she would give me a requisition so we'll see.

Re the dexa bone scan - fwiw, my MO requisitioned it even when we had pretty much decided that I wouldn't be doing hormonal therapy. I got the sense that there's no way he would have started hormonal therapy without sending me for it. Walden, pale small boned women of N European origin are at risk just by our genetics so honestly, I'd get it done. Chemo itself can cause osteopenia & osteoporosis - I'm sure that's where mine is from. Nobody in my family has bone loss and I've been active and doing weight bearing exercise my whole life. Given how badly chemo affected my bone marrow, I'm not surprised it hammered the bone turnover itself as well. If absolutely everyone refuses to requisition it (though I really don't see why they would), it's not expensive to pay out of pocket for it (& it's very non invasive and such a low amount of xray that the technician sits in the room with you).

Marian- fingers crossed for good results from your mri.

hugs everyone

DearLife · December 2018

Thanks Moth - it is so reassuring to know your MO thought your recall was just super caution and that you have been through the same thing. And I thought recalls were just for lettuce!

The report was faxed to my GP but she was not in on Friday. I will call back on Monday and ask about the Birad. Good suggestion about an MRI too.

Good luck with your exams! I know you will ace them 🙂.

About a bone scan - I am over 65 so they were happy to give me a baseline. I think the cost for private pay is under $100 according to the clinic where my DH goes for his osteoporosis.

http://www.prohealthcr.ca/msp-funding-for-dxa-vancouver

It is so comforting to be able to talk to you about this boat we are in. Gentle hugs to all.

❤️ 💕😘

DearLife · December 2018

More about osteopenia from the Research thread, posted Nov. 29.

Evaluation of Osteopenia and Osteoporosis in Younger Breast Cancer Survivors Compared With Cancer-Free Women

Breast Cancer Research

https://breast-cancer-research.biomedcentral.com/a...
https://doi.org/10.1186/s13058-018-1061-4

I can't understand why any doctor would hesitate to order a baseline bone scan for a breast cancer patient, regardless of age. You might have to show them the research.

van2018 · December 2018

Thanks everyone for the info on osteopenia/osteoporosis. I talked to my NP about a baseline bone scan and it seems, from my discussion with my MO, that she misunderstood and thought I was saying I thought my bone pain from chemo was some other cancer and thought I wanted an MRI or something. Have not been impressed by my NP or her office so far. I will need to bring this up again before I start hormone therapy.

Enjoy the weekend everyone! We're putting our tree up tomorrow!

marianelizabeth · December 2018

Hello everyone! Thanks for asking about my MRI. This is my third one since the summer of 2017 when my metastasis was first diagnosed. It is odd but I do not recall the first one as being very difficult but maybe it was just a very short one without contrast. The second one was in June and it took over an hour and I just barely managed to make it that far. I did not worry about yesterday's thankfully and didn't think about taking some sedation but did not. Next time I will ask. Long story short but I was there well over two hours with my friend. Lack of IV nurses created the most difficulties. It took ages to find a nurse to access my port then once they pulled be out of the MRI to put the contrast in there was no nurse to do it. There was a concern of the pictures for the second lot not lining up so at that point I said try to get an IV in and thankfully it worked the second go. Once part was over my port had to be flushed and guess what? No nurse so another 20 minutes. Now that it is done it is just a wait and we all know what that is like. Because my MO plans to send it to Vancouver to the head radiologist at BCCA it is likely that I will not hear until Tuesday or Wednesday. But my Vancouver radiologist is really great and chances are I will here Monday if he is not too busy. Regardless of the outcome it looks like I will start paclitaxel on Thursday at 10:30. I go to chemo teach on Monday and blood work on Tuesday.

Back to one week ago when 11 or 12 of us met for lunch. It was wonderful to see old friends and new ones too, even though I hardly got to talk to those in the second booth. Let's see how it goes in the spring and if not then, the fall. NVDobie, what does your Avatar mean if you don't mind my asking? I do not see why North Van would be a hindrance. For those coming from the valley it may even be easier. Anyway let's keep the talk going on that.

I have read back a couple of times since our lunch and I love it that so many are posting. Wrenn, I was so glad you came I took that chance when you drove up in front to come and meet us. I too enjoyed the conversations in our booth as I said above. My memory is not very good these days but DearLife, did you send an email with all of our contacts? Apologies if you did and I missed it and if not I would love to have it sent. I know that you are now playing the waiting game, something that all of us have faced. Hoping for the best.

I have had breakfast in bed this morning after a really busy week but I think it is time that I get up and do a few things here. My husband is away until Tuesday so I'm having a chance to be independent. I hope all of you're having a good weekend.

Big hugs, Marian

DearLife · December 2018

Hi Marian

I am sorry your MRI was an ordeal. So many problems caused by short-staffing, especially this time of year. I am glad you don't have to wait too long for the report and I am sending you healing energy for the very best results, also for the chemo starting this week.

Breakfast in bed is a perfect antidote! Somewhere on BCO is a thread called “Slices of Joy" and I try to remember that when it all seems too much.

Thanks for the reminder about the contact list. I just sent an email to everyone who attended. It's called “BCO Vancouver Contact List" so look in your Spam folder if it doesn't arrive.

I think you also have a list from prior get togethers. Perhaps we can combine them and have a big bash next time we meet!

Slices of joy to all

❤️

wrenn · December 2018

I hope everyone gets good news this week. I can't imagine having to deal with this. I never have since I was shocked by original DX after mammogram and ultrasound. Even after being called back for Bx I wasn't expecting Dx. Some of you having to go through it more than once makes me think you are damn tough. Not that you have a choice. :-(

Van2018. I think your NP might have thought you meant "bone scan" (which would be used to detect mets) instead of bone density scan. Here are the two machines and why I cancelled my bone scan (claustrophobic as hell and the bone scan machine looks scary). Looking forward to seeing you all again. Thank you so much Pearl for the lists and photo. Take care everyone. Many sunny days coming up. xo

Walden1 · December 2018

Thanks so much everyone for the bone density tips! I feel very luck to have found such a smart group of ladies to chat with.

Wren, that's a good point. I'm quite sure I used the word "bone scan" when my MO said it wasn't necessary.

NVDobie · December 2018

Pearl

Got your email. Thanks!

Marian

I have two doberman, and live in North Van. That's where the name was from. I live in a house with my husband and 2 dogs. If anyone is afraid of dogs, I can leave them in the family room where we stay in the dinning area and living room. As long as there is no one allergic to dogs. I am happy to host pot luck here. A

runor · December 2018

DearLife, you wondering if cancer can come back so soon after radiation reminds me of my event. Forgive if this is a repeat.

I felt a lump in the good boob. Freaked out. Went for mamm on BOTH boobs. Report said the new lump is a cyst and it's so old it has dust on it HOWEVER the bad boob has a suspicious mass that we don't like the look of, we want to look again really soon, it might be scar tissue or it might be cancer, not sure, bi-rads 4.

I freaked out. I freaked out HARD. I started making phone calls. I was a serious pest and called my radiation oncologist until she called me back and I said , "Do you mean to tell me that you burnt my boob to a crisp and I walked out of that clinic with an active cancer ?!?! Didn't this stupid radiation KILL the damn cancer? Wasn't that the whole point of this?! "

She said, if you walked in here with an active tumour you walked out with it. Radiation after surgery is designed to mop up a few stray cells, it is NOT the kind of radiation that targets tumours, that is a whole different animal, so if you walked in with active cancer then yes, you walked out with it after three weeks of radiation.

I freaked out some more and there might have been words of extreme unhappiness, I can't even be sure, it was a blur.

Long story short, I had more follow up mamms 4 months later and then again 6 months after that and the 'thing' is shrinking and they are calling it scar tissue. Surgery and radiation do DAMAGE and scars are a real thing. I am hoping with all my might that is all this is for you.

Side note: Normal procedure is that you have a mamm, sit in the waiting room until they tell you either to go home or come in for more pictures. But no one gets any information of any sort at the mamm room. People ask. They are told their doctor will call them with the results. NOT ME! They take my pics, I sit down, the tech walks my pics into the radiologist's office and when she walks out she gives me a full and complete report of everything the radiologist just said and what the report going to my doctor is going to contain. I guess there is a sticker on my file that says: SHIT DISTURBER, tell her everything so she doesn't go away mad and confused and cause problems. I can live with that!

DearLife · December 2018

Oh yikes this is scary. I had huge clean margins and three different radiologists looked at my tumour scans last time (including my radiologist friend who took an independent look), so I will be devastated if they missed something. Or maybe it was hiding in my dense scarred breasts.

I already have lots of scar tissue from reduction surgery many years ago. So I will pray it is scar tissue. My lumpectomy breast is actually larger than my intact one, which is also scary. Or maybe it is swelling. Awful not to know what is going on.

I just got an insurance payment yesterday from cancelling our trip last February. I hope I don’t have to cancel our dream trip to New Zealand planned for this year.

But I will insist on more information after the mammogram on Friday. Send prayers, any kind will do.

runor · December 2018

Dearlife, I see you had a lumpectomy in 2018. The size of your breast could indeed be swelling. It took a year and a half for my breast to begin to 'settle down' (damn rowdy boobs!). As I am sure you know lymphedema does not just occur in your arm but can affect many areas of your body, including the breast itself. I had my lumpectomy early 2017 and here we are, end of 2018, and my breast is still sometimes rock hard, swollen and with HUGE gouge marks from where it was pressing into the wire in my bra. I swell both above and below the bra strap on my side. Beneath my breast, there is a dense 'tire' of swollen tissue that never goes away. If I lay on my back, hike my boob up to my chin, you can SEE this huge, swollen ridge and even Hub has commented, oh my god what IS that?! So yes, it is extremely likely that you are still swollen. I am sending all kinds of prayers.

Canadians in British Columbia

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