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Canadians in British Columbia

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  • gladis
    gladis Member Posts: 43
    edited May 2022

    Hello BC ladies, I am in Vancouver Coastal Health as well. I found my 1.4cm left lump by hand in Jan 2022

    it took until Feb 7th to get a dr appt. then another month (March 7th) to get an ultrasound

    then 2 more weeks to get a needle biopsy which took a week on the nose to get results (IDC) Hormone ER/PR + (high)

    My surgery was scheduled for May 9th.(groan pull out hair make husband sad and nuts) :-(

    Instead, I got called to go to surgery on Friday for surgery the 11th of April!

    (Honestly, we looked into going to the states for help at the tune of 1200 per month for insurance.)

    My dx came through (10 days later) as T1a,0/5 and grade 2

    (I'm having trouble with posting on this site as well) ugh

    (HR + and HER2- common old age bc-no history in my family)

    I'm reading every study EU, AU and Dutch studies on those over and about 60 yo-at the end of this year (me)

    ---- TO radiate or not, HR therapy or not, and outcomes since I'm far from BC Vancouver(2 hrs) .

    Plus, my surgery complication (painful hematoma the size of my fist) are putting a stop to fwd motion

    my Vancouver surgeon is 'hands off' until it improves to go fwd to an oncology appt.

    Meanwhile,

    my 'PC" phoned yesterday (Tues) to say he is ill and can't make our appt on THURS in person but will phone tomorrow.

    He also is the ONLY dr, here and he has 1000 patients and has said he can't keep up with the load!!!

    He is about to retire as well :-{

    I'm also have several immune diseases and I'm SURE he's 'tired' of me (me too lol)---Universe?

    Wishing you everything wonderful for a good biopsy today Cathy!!!!


  • gladis
    gladis Member Posts: 43
    edited May 2022

    This exact same thing happened to me. I only found out by accident because you are only allowed 1 voice msg per day here. I cried. My heart goes out to you gretknee <3

  • buzzbomb
    buzzbomb Member Posts: 45
    edited May 2022

    I’m in interior health (Kamloops) and haven’t really had too much issue with wait times but there certainly are delays.

    Diagnosed with DCIS I’m December just as we were leaving fro Mexico, doctors and breast clinic said go, have fun….so I did.

    Returned to Canada the end of January, had to do the two week Covid wait (despite a negative test) to see surgeon, then a three week wait for surgery (lumpectomy, March 9). Three weeks for results only to find out there was a micro invasion so a sentinel node surgery was recommended, another three week wait for that surgery (April 20) and then a three week wait to see her again. These waits are torture. Good news is that I have an appointment with the oncologist for this Monday, surgeon on Tuesday and then we’ll know what to do. Bad news is that this last surgery was hard to recover from and I’m still very sore and tight…not happy. Maybe she can put my mind at ease on Tuesday because I swear there’s something not right

    Sadly there is no radiation in Kamloops, so a trip to Kelowna is necessary. Since it’s a long drive I will likely stay the week, an expense I’m not so happy about. Don’t want to think about that until I hear from the radiologist (they did call yesterday but realized I lived out of town so they have to call me back with a phone appointment with the radiologist).

    Patience is a virtue or so they say. I now look forward to the “all clear” on Monday (fingers and toes crossed for no node involvement) and the radiation schedule. I don’t want to see another doctor for a long time.

    Good luck to you all…

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    gladis,

    Thanks, I am back, it went very well, have appt with oncologist next Friday for the report. Pray.



  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    buzzbomb,

    Why you need another surgery? Lumpectomy plus sentinel node biopsy is standard, if microinvasion is found, no need for another surgery.

    Sorry that you are also suffering long long time waiting.

    Cathy

  • gladis
    gladis Member Posts: 43
    edited May 2022

    Prayer Warrior <3

    (sometimes prayer worrier ")

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    The other thing, we are not allowed to talk to radiologist, while here in the forum, I see lots of ladies mention their discussion with radiologist. They sent me for biopsy, but did not explain to me why.

  • buzzbomb
    buzzbomb Member Posts: 45
    edited May 2022

    Cathy, I had two separate surgeries. The first was lumpectomy only as it was supposedly only DCIS, the second surgery was because they found IDC when analyzing the lumpectomy, not only DCIS. I believe it’s standard to only do lumpectomy with a DCIS diagnosis as it’s non invasive..

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    buzzbomb,

    Thanks for the info, sorry that you've suffered two surgeries, and this is not rare here. Since my lump is 5mm only, I would prefer do an open surgery to remove it totally, then do pathology report, based on which to see any further surgery is needed. But this is not allowed here. Standard is good, but quite a few of us experienced unnecessary surgery.


  • gladis
    gladis Member Posts: 43
    edited May 2022

    Hey buzzbomb (catchy name) the wait is torture. It can't be healthy to factor in to the whole

    cortisol on 24/7 blast...right? I think it is hard to be a self advocate especially after the last 2 years.

    But also, if I think about how hard I rally for my family in comparison. (hmmm)

    I'm still recovering left/lumpectomy nearly a month ago, in pain, and 'tight'

    it's worrisome.

    I'm a 12 K step kinda girl.

    Like you, daily I hear myself say aloud "something is not right''

    and I hate questioning my self or worrying about being labeled

    a hypochrondriac

    (it took 3 years of being told BS but it turned out to be an ovarian cyst the size of an orange, just saying)

    Birthed 2 kids no meds, and barely take an antibiotic unless desperate...

    If I do decide on radiation (hyperfractionated) I've been informed that there are not too expensive rooms (some allow a pet)

    to be rentedby the hospital in Vancouver for this purpose.

    Maybe by you?


    I'm also looking into a vrbo or something funne!r ;-)

    because this blows.

    Hug~





  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    Hi ladies,

    Do you know the way we can get 2nd opinion in Canada? I can pay consultation fee myself.

    You can message me if you got any idea.

    I want to know if lumpectomy is still option nowadays for 2nd primary if pathology back no radiation is recommended. And someone ever used remote 2nd opinion service?

    I may jump into the topic too early, did biopsy yesterday. Surprised to find radiation can only do once in one's life, my current suscipion is 5mm and ultrasound feature suggests hormone positive leision if it is.

    We Canadian spent long time waiting, I want to do something for my body during that period.

    Thanks, enjoy mother's day weekend!

    Cathy

  • moth
    moth Member Posts: 3,293
    edited May 2022

    Esp for surgery you can get 2nd opinion. I have several surgeons I can recommend once you get your biopsy results.

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    Moth,

    My last surgery is very good, I plan to use same surgeon if I need and she is still there. What I want is consultation service with oncologist, the treatment plan. I visit richmond hospital's cancer centre for my current routine treatment, I don't know if there is the way to reach another oncologist for 2nd opinion.

    Thanks Moth.

    Cathy

  • moth
    moth Member Posts: 3,293
    edited May 2022

    oh a 2nd oncology opinion is way harder. Mostly because they all follow the bcca guidelines so there's usually not a lot of wiggle room. And if it's complicated they bring it up in the weekly tumor board and get feedback from their inhouse experts

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    Moth,

    I got it, I will discuss with oncologist if it is really complicated. Hopefully biopsy back benign, I don't need this... right now, just study to get enough info. So long study time.

  • gretknee
    gretknee Member Posts: 10
    edited May 2022

    I got my appointment sorted. The requisition was never received the first time. I pushed to have it checked on and they resent it and it was then redirected to a different location. They redirected without saying anything for the second time- it turns out they will redirect the requisition based on your address. So my Kelowna based doctor sent it to Kelowna but Penticton is closer to me for imaging and as a result Kelowna rejected it.

    The first was sent April 13. I’m now booked for May 24 and will be booked to go back after for biopsy. The doctor requested biopsy on the requisition but hospital said they don’t do it on the first go

    In the end I’m very glad I kept pushing people politely to ensure my diagnostic scans got booked. If I hadn’t I would still be waiting for nothing.

    I did find it easier to call and ask for the imaging desk- not booking. The desk seems to be more willing and able to help investigate.

    Thought I would share in case anyone needs the motivation to keep on bugging people for answers.

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    gretknee,

    So finally it is settled down, May 24 is too late, I pray for a benigh result for you.

  • elderberry
    elderberry Member Posts: 1,037
    edited May 2022

    gretknee: Where do you live? I would have thought Kelowna being a bigger place would have more options and more facilities for imaging and your doctor is in Kelowna after all. I don't understand not doing a biopsy "on the first go". Delays just add to the stress and every week counts. Yeah - you gotta be your own advocate and you gotta push!! Hoping for good results!

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    Sisters in BC,

    As some of you know, I am in waiting game again, waiting for biopsy report now. I cannot help reading all the posts published recently in this forum, needless to say, our system is so slow, I have to figure out some way to speed up, even a bit (I hope I will never need this).

    Is there some private clinic for self pay diagnostic mammogram/ultrasound? I think this exam is cheaper than biopsy, shall be affordable, don't know how much it costs, thinking of the one month valuable waiting time saved if it is, or one month worries-free valuable time for mentor health if it is not.

    Do you know if our system provides baseline MRI before biopsy? I saw someone mentioned in the forum, but I think that maybe not a technical question only.

    If I had known my ultrasound would back biopsy, I would have definitely used private service. But even there is some place to do diagnostic mammogram/ultrasound, will our MSP system recognize the biopsy recommendation from it?

  • moth
    moth Member Posts: 3,293
    edited May 2022

    Cathy, this place does private mammograms & ultrasound http://www.vancouverbreastcentre.com/ourservices.h...

    That same clinic can probably refer you to a private MRI if that's what you choose to have

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    Moth,

    I marked! I never known there is such service on broadway. These days I'm reading posts here, I know it is not rare that diagnostic mammogram did not see the abnormalities. My previous routine only includes mammogram, oncologist follows nccn guidelines, ultrasound is not recommended if no lumps addressed. I don't know when this suspicion started to grow up, maybe it can be detected earlier if routine includes ultrasound.

    Thanks a lot, I think definitely we shall go for private service if waiting is too long.

    Cathy


  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    Ladies,

    I am studying how to talk to oncologist if the biopsy back positive. I have no way to know the result before appt, and then if it is, I must start to discuss for the next steps immediately, this results in lots of study based on uncertainty. Here is another question, if it is DCIS, do anybody know if oncotype breast DCIS test which is to tell the local recurrence rate without radiation is eligible to be covered by msp? I cannot find any info on website.

    I just realized this one must be done using biopsy tissues, cause it is to tell whether radiation is needed, in other voice, it is to tell whether lumpectomy is risky for me, so I must raise up this question right there, if it is DCIS, before appt with surgeon. My appt for biopsy result is this Friday, I think I must reserve an appt spot in case I need it, so it can move forward immediately. And I also have a routine appt with oncologist, a few weeks later, right time to get in for oncotype test result if it needs.

    I may think over too much, but it is my body, I must study.

    Thanks.

    Cathy

  • cathy67
    cathy67 Member Posts: 408
    edited May 2022

    Ladies,

    Biopsy back normal!! Appreciated your support, enjoy weekend.

  • gretknee
    gretknee Member Posts: 10
    edited May 2022

    I’m based in Penticton so I was happy to go wherever to get it done asap and with the best team possible. Turns out closer to me was best.

    Once I thought about it, it made sense to not do biopsy on first go. That would mean a radiologist would need to be on stand by and wouldn’t necessarily know which equipment will provide the clearest picture in advance.

    Glad to hear your biopsy came back clear Cathy!

    Has anyone on Visanne been told to get off the drug while lumps are investigated? My doc didn’t say anything but I also forgot to ask if I should be off it and obviously I’m not going to until told to stop taking it

  • BbyMom
    BbyMom Member Posts: 31
    edited June 2022

    Hey Cathy, congrats on your normal biopsy results! What a relief that must have been! It has been a very busy few weeks dealing with radiation and its side effects plus juggling work and life, but now about to start the next part of my treatment: hormone therapy with Tamoxifen. I'm also waiting to hear back on ultrasound results on my non-treated breast that is being monitored. I can't wait for all this stuff to be behind me and I'm not even dealing with a fraction of the stuff many of you are dealing with. This stuff and all the waiting and uncertainty is tough!! Other than those two things, I wanted to deal with the hardness/lumpiness of my radiated breast that I believe is scar tissue and my healing seroma (RO wasn't concerned and said it's normal). I'm in Burnaby. Do any of you know any local treatment place that can help deal with this?

  • cathy67
    cathy67 Member Posts: 408
    edited June 2022

    bbymon,

    Did they tell you the ultrasound result right there? Sometimes they do by telling the next follow up time, sometimes not.. I wish we have opportunity to talk to RO on ultrasound day, I'd waited for 8 days to get appt with my family doctor for ultrasound report.

    Can I assume if you don't receive any news about the other side ultrasound, does that mean at least no biopsy is recommended at this time, so shall be clear or another follow up for closer monitoring.

    For the radiation, I just wait do nothing after treatment.

    Hormone therapy side effect is gradually increasing, for me, it is mainly muscle join pain, after 2.5 years medication, I got sprains very easily, but I can still do , so I did not ask MO for medication for this. I saw my MO yesterday, I will have last lupron shot in 3 months, then I will be 55 years, hopefully this will decrease join pain.

    Cathy


  • BbyMom
    BbyMom Member Posts: 31
    edited June 2022

    cathy67, no, unfortunately I rarely get results from the techs. I did try but no luck. I'm not getting my results until Monday. It would have been 8 days if I got in on Frday, so one business day later than yours. Hopefully a long wait time = good news! and no more biopsies!

    Sorry to hear about the hormone therapy side effects.Hope the lupron shot works well for you. I'm definitely worried about all these side effects. I was supposed to start this week but delayed it to Sunday night as I have lots going on this weekend. My RO wanted me to be on it for at least a few weeks before our appointment at 6 weeks after the end of rads, so I'll still be ok. (Btw, isn't it strange that this 6-week follow up appointment is a call instead of in-person? I found that strange as I was hoping she'd examine everything to ensure all is healing ok.)

  • BbyMom
    BbyMom Member Posts: 31
    edited June 2022

    suz45, I LOVE the quote in your signature: Laugh your heart out, dance in the rain, cherish the memories & ignore the pain, love and learn, forget & forgive. Remember you only have one life to Live. I will hold on to this one. Thanks for sharing it with us!

  • cathy67
    cathy67 Member Posts: 408
    edited June 2022

    bbymom,

    It took me 8 days to get appt, and I believe the report was already there, but we, as patients, cannot get it directly ourselves. .. that is in Canada.

    If it needs biopsy, I think they shall contact you earlier. And furthermore, if it is high suspicion, they shall book biopsy for you right there.. that was what I experienced, the tech person back with biopsy appt, no any explanation. So I think you don't need biopsy, at least. Pray for it.

    Cathy

  • BbyMom
    BbyMom Member Posts: 31
    edited June 2022

    Hi Cathy, I think you're totally right. That's been my experience thus far as well.