Canadians in British Columbia

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  • GG27
    GG27 Member Posts: 2,128
    edited May 2021

    I've only seen my MO in person once in the last 20 months. She was on sabbatical, then came back & Covid hit. She didn't want me traveling to Vancouver from the island just to see her. I do have a GPO in Nanaimo but only ever did phone calls with him. So I haven't had a physical check for almost 2 years.

    Sadiesservant, I don't know much about this treatment, my MO called me to tell me she thought I should think about it. I too am now heavily treated. We are doing breaks in treatment when I am stable to prolong the length of a treatment. When I was on weekly doxil, I took 2 months off, it was wonderful.

    I'm a bit nervous about this trial, the last one I was on was Piqray & it was horrible for me. I lasted 10 days. Luckily the trial allowed me to stay on Faslodex as a third arm of the trial. But I've blasted through most of the chemos offered other than weekly doxil which I would have stayed on but MO felt that we were getting pretty iffy on the amount of time I'd been on it, with heart damage being a concern.

    take care all, think good thoughts for me for Monday's CT & meeting with trial RN & MO. cheers, dee

  • wrenn
    wrenn Member Posts: 2,707
    edited May 2021

    I so miss slamming down phones. When I first realized I couldn't do it I would just stare at the cordless in frustration.

    Will be thinking of you during your treatment. Such a hard time to be going through this. Not that it is easy any time but really not fair to have a pandemic piled on.

  • moth
    moth Member Posts: 4,800
    edited May 2021

    in your pocket for Monday!

    I was seeing my MO face to.face because the trial required it..but now I'm off trial and she's on 3 month sabattical and her locum is doing telehealth only. It's ok I guess. I see my chemo nurses every 3 weeks for treatment.

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited May 2021

    Hi Dee,

    Your comments about your MO’s strategy is helpful on piecing together my own MO’s approach. I mentioned on another thread that I was surprised to hear that my MO wants me to stop Xeloda after six cycles, holding it in reserve since I responded well. I was a bit taken aback as many have been on it for years. In his view, it will only drag me down and he wants to try another endocrine treatment (appears he is leaning towards Aromasin). Sounds like a similar strategy to keep things in check as long as possible while limiting the negative effects. I have to admit that I am a bit relieved that I might not need to stay on Xeloda long term. It’s beating me up a bit more with each subsequent cycle and I am only on #5!

    Wishing you success and minimal side effects with the new treatment.

    Pat

  • SaraJay
    SaraJay Member Posts: 77
    edited May 2021

    hi!


    I've been hearing great things about incorporating acupuncture treatment to help with side effects of chemo and I'd like to give it a go.


    I'm looking for recommendations for someone who has experience with cancer patients.


    Thanks!

  • NewDay123
    NewDay123 Member Posts: 71
    edited July 2021

    Hi SaraJay, I don't know any acupuncture people. Might your medical team or the cancer agency have a list of potential people to try?

    Dropping by to say hi to everyone, hope you're all keeping well.

    I'm doing ok, just a bit of brain fog once in awhile. Watching a lot of TV shows/movies. Sometimes feel very tired.

  • acepp
    acepp Member Posts: 1
    edited August 2021

    Hello all!


    I am recovering from my partial mastectomy. Margins and lymph nodes were clear 🎉🎉🎉 But tumor was just over the 2cm (2.1cm) when they took it out not the 1.2cm they saw on the scan. Been labeled 2a (HR+ her2 -).

    So with me being premenopausal, surgeon thinks they are going to recommend chemo. So that's not what I was hoping for at all. But good news about lymph nodes and margins!

    I have friends in the States that have used a cooling cap with great results. They were going to mail me theirs, but I read that BC Cancer won’t allow them!?!?!? What the actual f?

    Anyone know anything about this?

  • cathy67
    cathy67 Member Posts: 514
    edited August 2021

    acepp,

    My biopsy said 8 mm, however it was 2.1 cm with 3 mm node involvement. My surgery said chemo will be recommended, and my oncologist also said, however I insisted on oncotype test which I had to pay myself, it turned out low score which means low risk and no chemo benefit, the oncologist said no chemo.

    Well prepared for chemo, however, investigate the chemo benefit with the oncologist, whether it needs or not, the good thing is that we know what is the right choice.

    Pray for you.


  • Moderators
    Moderators Member Posts: 25,912
    edited August 2021

    accept, we're sorry for what you are here, but wanted to say welcome! We're glad you found us, and appreciate your participation. We have a thread specifically about cold caps that you might find helpful, here: Topic: Cold Caps Users Past and Present, to Save Hair

    Also, don't forget to fill out your Profile so others can see your diagnostic and treatment information, which will help them answer your questions. You can fill out your profile by clicking My Profile at the top right of your screen, and following the prompts to enter your information in the My Diagnoses and My Treatment tabs.

    We hope this helps. Looking forward to hearing more from you soon!

    The Mods

  • moth
    moth Member Posts: 4,800
    edited August 2021

    acepp, hi, welcome to the boards, sorry you find yourself here!

    Yeah, no cold caps at BCCancer. I never cared but someone who was dx'd same time as me in 2017/18 did and was told nope. I've heard some reasons are that it's not an easy small system, requires outside equipment/space/ etc and the agency cannot give up the space.I use icepacks for my feet and hands to prevent neuropathy from taxanes and gotta admit that even that, in some of the stations, requires wriggling to get stuff to fit (it's a small cooler on a luggage cart). Some centers are way more crowded than others and I think also, that they need policies that are province wide, so here we are...

    Good news indeed about nodes and margins. Chemo is not so bad. I've been on it continuosly for almost 18 months this time. I even made a reel about it: https://www.instagram.com/p/CR-Jkvtlvjo/

    How is the surgery recovery going?

  • Kentiana
    Kentiana Member Posts: 2
    edited August 2021

    Hi Cathy67,

    I’m new here. Just had a left mastectomy 5 days agai and waiting for my pathology. I’m looking for info on getting the oncotypedx test in Ontario. Is it not standard in Canadian breast cancer treatment?

    Any advice on asking for this? I meet my surgeon on Thursday for my pathology. Or is this something I’ll need to wait for my oncologist for? I haven’t been assigned anyone yet.

    Thank you so much for any direction you can offer.

  • moth
    moth Member Posts: 4,800
    edited August 2021

    Kentiana, are you in Ontario or BC - because you're posting on the BC thread so I'm confused.

    Oncotype is covered by all 10 provinces. There are some eligibility criteria - it's usually limited to lymph node negative. Also in some situations, when the oncologists feel that clnically they'll be recommending chemo anyway, they don't always want to send out for the test because it wouldn't help with decision making in those cases....

    Here in BC, it was my oncologist who ordered the test, not the breast surgeon. hth!

  • cathy67
    cathy67 Member Posts: 514
    edited August 2021

    Kentiana, I sent you a private message. Also, moth has provided very useful info.

  • GG27
    GG27 Member Posts: 2,128
    edited September 2021

    I have a question for those who are getting chemo at BCCA in Vancouver. Are you having problems getting your appt times ahead?

    I have repeatedly asked to please get my chemo appts times ahead of time. I travel from Vancouver Island & need to make travel & accommodation arrangements. They used to call me on Thursday for Tuesday appts, now I can't even get them to answer the phone. They seem to feel that calling me on Monday afternoon is more than enough time for me to make ferry reservations and find a reasonably priced hotel room.

    I am so frustrated, it feels hardly worth doing this trial when I could just have chemo in Nanaimo & not bother with the trial drug.

  • Dawgmum
    Dawgmum Member Posts: 3
    edited December 2021

    Hi everyone, I’m on Vancouver Island and had surgery December 10th. I just got my results on line today and am still trying to decipher them. A friend of mine who had breast cancer told me about this group. From what I can tell the margins are clear but it is in the sentinel node 😢

  • wrenn
    wrenn Member Posts: 2,707
    edited December 2021

    Welcome dowgmum. Sorry you had to join this club though. Can you download the results here? And enter your diagnosis etc in the profile?

    I found this site to be a life saver mentally and info wise when I was first diagnosed.

  • cathy67
    cathy67 Member Posts: 514
    edited December 2021

    Dawgmum,

    Sorry to hear that you had to face this during Christmas, we all went through this, and this site is always there to help.

    I just wonder if you already got appointment with oncologist, usually we got news from doctor. I know sometimes post surgery pathological report is worse than biopsy one, like me, it is harder to face, however treatment is more successful nowadays.



  • Dawgmum
    Dawgmum Member Posts: 3
    edited December 2021

    I don’t have an appointment with an encologist yet and am not booked for a follow up with my surgeon until January 4th as he is on holidays. I just kept checking My Health for the results and they were just posted. I had entered what I could but didn’t have it set to public lol….I think I figured it out now. I feel like Covid and the holidays are why I haven’t even had a call from my family doctor yet. 

  • cathy67
    cathy67 Member Posts: 514
    edited December 2021

    Dawgmum,

    Since you figured out what the surgery pathology report explains, this site provides very rich info, you shall be well ready to discuss with the oncologist about the further treatments. I hope this covid 4th wave will be flattened soon, so you can go to hospital safely.

    One thing, we as patients already got chance to get booster shot in October, I don't know if you already got it, if not, now you are in the fast track queue, you'd better do it before your frequent hospital visits.

  • Dawgmum
    Dawgmum Member Posts: 3
    edited December 2021

    Thank you for the reply cathy67. I’ve only had my second shot but I’ll ask about a booster as soon as I talk to my doctor. 

  • cathy67
    cathy67 Member Posts: 514
    edited December 2021

    Dawgmum,

    The vaccine invitation is being handled by cancer clinic as a group, I think, if you have appointment which means you are already their patient, the front desk may arrange this for you, then it will be quicker.

    Best wishes!


  • moth
    moth Member Posts: 4,800
    edited December 2021

    HI Dawgmum, sorry you're going us here. It is a great resource though... so ime after the pathology comes in, then they send the referral to the bc cancer agency & you'll be called to make an appointment with an oncologist. Fwiw, my pcp took a step back and is not involved in my cancer stuff at all. She has been great for everything else, supportive care etc and she reads all my cancer agency updates etc but once it was confirmed as malignant, cancer agency took over all that.

    When you see the oncologist they'll go over the results and the treatment plan. But first they may want to do the Oncotype test to determine the benefit of chemo based on the tumor characteristics. In that case, things will be delayed and they'll need to send a sample to the US and wait for results.

    Hang in there, once the treatment plan is in place, most people feel a lot better.

  • cathy67
    cathy67 Member Posts: 514
    edited December 2021

    moth,


    Thanks a lot, I still remembered when I first came here, your warm messages made me relax a lot. I am reading the posts on your personal website, and pray for you all the time.

    Happy New Year!

  • moth
    moth Member Posts: 4,800
    edited December 2021

    hi cathy! Thank you, love. Happy New Year to you too!!!

  • runor
    runor Member Posts: 1,798
    edited December 2021

    Dawgmom,  happy you found this site but sorry that you needed to.  I second what Moth said. Once you are a cancer patient you become part of a well oiled machine and no decisions are left up to  your regular doc. It can feel a bit like you are sucked into a vortex. In this moment you may be stunned and confused and feeling like the bombs are flying in from all sides. But some of the best treatment I got was for cancer - that cancer clinic had it's act together! So you will be in good hands.  Sort of sad now that it's covid time there might not be the great legions of volunteers there used to be at the cancer clinic. Those volunteer ladies were angels! If you were standing in the clinic looking lost, one or more would swoop in to find where you needed to be and shepherd you there, often with tea and a cookie too. I hope we get to where they can be there again guiding the scared and lost. Or perhaps they never left, I don't know for sure.

    Good luck to you and fingers crossed that everything goes smoothly.

  • Yoma
    Yoma Member Posts: 11
    edited January 2022

    hi everybody,

    Just joined this forum. Got my diagnosis 3 weeks ago. Seems like things are moving fast but at the same time the waiting is torture. I’m in Burnaby and will meet with an oncologist this week. I met with the surgeon last Friday and have most of my pre treatment tests and scans completed. Bone scan on Monday.

    I’m diagnosed with IDC , ER/PR - HERS2 +. Still not sure how this effects my treatment but sounds like chemo before surgery to shrink tumours and hopefully a lumpectomy rather than mastectomy.

    Nice to know there is this wonderful group of strong women that I can turn to when I have questions.


    Cheers

  • wrenn
    wrenn Member Posts: 2,707
    edited January 2022

    Hi Yoma, Sorry you find yourself needing this forum but glad you found it. I was lost when I was diagnosed and got so much information from this site. I joined the surgery group for the month of my surgery and chemo group for that month. All kinds of topics will be covered as things come up for you. It is an amazing resource.

    I had surgery at Mt.St.Joes in 2013 and was at the cancer agency on W. 10th.

    Ask any questions you have no matter how silly you might think they are.

    If you add your diagnosis and treatment to your profile you won't have to repeat it here. :-)

    Hoping things go smoothly or very few bumps.

  • Yoma
    Yoma Member Posts: 11
    edited January 2022

    Thanks Wrenn.

    I’m lucky enough to have a daughter who is an RN. She’s helping to translate some of the jargon.

    I’ll go in and see if I can figure out adding my diagnosis as your right, it’s a drag repeating it constantly. I’ve been spending a lot of time reading through others experiences and while it makes me feel like I’m in the company of a group of very strong soldiers, I am shocked at the varied range of and intensity of the side effects. I’m hoping mine will fall into the more tolerable range.

    Hopefully the oncologist will be sharing an actual treatment plan with me on Thursday.

    Cheers.

  • wrenn
    wrenn Member Posts: 2,707
    edited January 2022

    That's great that you have your daughter there who knows the terminology and can help you prepare questions for the oncologist. My last appt (unrelated) the doctor was happy to have me record our session so she would be sure I would have the information to refer to.


  • cathy67
    cathy67 Member Posts: 514
    edited January 2022

    Yoma,

    Sorry that you had to be here. In addition to the medical treatments, there is also mind caring service in BC cancer center, they have some programs for the patients, not sure if they still offer right now. I contacted them after I got my post surgery report, I received 1 on 1 consultation help, and then small group art activities, all those really help.

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