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  • Yoma
    Yoma Member Posts: 11
    edited January 2022
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    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

  • Yoma
    Yoma Member Posts: 11
    edited January 2022
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    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.

  • cathy67
    cathy67 Member Posts: 411
    edited January 2022
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    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.

  • moth
    moth Member Posts: 3,293
    edited January 2022
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    Hi Yoma, sorry that you find yourself here but welcome to the board. I'm in Coquitlam :)

    hope you get your treatment plan organized soon - that takes a lot of the mental weight off, once you know what you're going to do.

    hugs

    m

  • elderberry
    elderberry Member Posts: 1,060
    edited January 2022
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    Yoma: Hi. Be sure to let us know about your bone scan results. Try to post DX, treatments etc so we can assist you with questions that might come up. I am in Burnaby as well and go to Lions Gate for my oncology stuff.

  • Yoma
    Yoma Member Posts: 11
    edited January 2022
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    thanks Cathy67

    I will contact the cancer society. This forum is a big help

  • runor
    runor Member Posts: 1,613
    edited January 2022
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    Yoma, this is a lousy club to join but you will find lots of help and support here. Hope you feel better after talking to your Onc, although feeling better can take some time!

  • akmom
    akmom Member Posts: 98
    edited January 2022
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    Hi folks, looking for suggestions about donating my breast prostheses. Had a BMX with no reconstruction in August of 2018. Got the forms thinking I would use them but have found that going flat is so much more comfortable. I have only worn the silicone boobs a handful of times. I would love to donate them to somebody who might struggle to afford them otherwise. Any ideas as to how I could do this? I can try to contact the Cancer Agency to ask if they take this kind of donation. But if there are any other suggestions, or if you know of anyone who could use the forms (I will include bra) please let me know.

    They are Amoena Natura Xtra Light 2SN size 7, bra is 38 B.

    ** Edited to add**

    Cancer Agency referred me to a local Mastectomy shop that has a “breast bank" for donated items. Sharing here in case anyone should require their services!

    Because We Care Mastectomy and Wigs

    103 - 5660 - 176A Street

    Surrey (Cloverdale) BC

    (604) 372-4083

    https://mastectomyfittings.com/breast-bank/


  • Yoma
    Yoma Member Posts: 11
    edited January 2022
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    hi Elderberry

    Happily my bone scan came back clean. There doesn’t appear to be cancer anywhere else. My chemo will be starting on February 7th.

    I got a nice short haircut to act as a staging for might happen next although Im going to try cold capping to see if I can manage to keep some of it.

    I’ll update my DX ASAP but it’s lengthy or seems so.

  • Yoma
    Yoma Member Posts: 11
    edited January 2022
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    Thanks moth


    I’m felling a bit more in control after my oncology meeting this week. Everything is moving along. Port insertion Feb 4 then chemo begins Feb7. Sounds like surgery will take place around June. At least once the chemo starts I’ll feel like the fight has begun.

  • Yoma
    Yoma Member Posts: 11
    edited January 2022
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    I’m wondering if anyone here has had breast reconstruction after surgery and whether Medicare covered the costs. I don’t have extended medical so my desicion about moving forward with reconstruction may depend on cost.



  • Yoma
    Yoma Member Posts: 11
    edited March 2022
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    hi Wrenn

    Sorry for the delayed response. Crazy time. Next Monday will be the beginning of my 3rd of 8 cycles. First 4 every two weeks, then 4 3 week cycles. There are a couple of plastic surgeons working with the surgeon doing my mastectomy. I’ll meet with them in a few weeks I think.

    Your response was helpful. I hope you are doing well

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    Hi sisters, I am back with biopsy order. Devil

    Diagnostic mammogram did not show abnormalities, ultrasound found a suspicious area which sent me to biopsy. I have not seen the report yet, got appt with family doctor on April 22 to discuss it. The area is on the same breast, but not in surgery area.

    Right now, I have three quick questions, will have more, I will study more this long weekend. Ten years ago, I got my first biopsy order, also right before Easter holiday.

    1. Anybody knows if mastectomy is the standard treatment for my situation? I know if it happens on the same area, then mastectomy will be recommended. Will cancer type (er, pr, her2) influence mastectomy decision?

    2. Will msp cover re construction fee? If not, roughly how much it will cost?

    3. If the cancer type is not hr+, her2-, then any benefit from treatment if pick up mastectomy? I am not scared of radiology, it is ok. But definitely scared of chemo, though it is doable nowadays.

    Thanks.

    'Wish everybody a happy Easter weekend!

    Cathy


  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    wrenn,

    Thannks!! You helped me save energy to investigate this, at least no financial problem.

    Enjoy the holiday. I pray for Jesus to let me rise.

    Cathy

  • moth
    moth Member Posts: 3,293
    edited April 2022
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    Hi Cathy, I think it's too early to think about surgical options because it really depends on location & size. Reconstruction is covered. Whether you would need additional treatment would depend entirely on what they find now. If it's larger, they'd run the Oncotype test on it (needs to be .0.5mm -- sorry typo I meant 5mm or 0.5cm)

    And anyway, it might still all turn out to be benign! Hang in there!

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    Moth,

    Thanks for the info! I did not find the oncotype dx eligibility on website, but I know now even node positive is covered, I had to pay last time.

    You said, must be larger than 0.5 mm? I don't understand what you mean.

    Yeah, it is too early to think of those options. However, when we receive the biopsy result, if it is positive, then we meet surgeon to decide the surgery details. In other words, we don't have opportunity to discuss mastectomy vs. lumpectomy from post surgery treatment view (this must talk with oncologist not surgeon) before surgery. If it is positive, I hope it is still er/pr positive, I am not that scared of that type now.

    Enjoy the long weekend!

  • moth
    moth Member Posts: 3,293
    edited April 2022
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    So I was thinking that I read that the tumor has to be 5 mm for it to be eligible for oncotype but now I can't find a reference for that so it's possible I'm wrong. Beesie is the Queen about Oncotype but she's not on the board now :( Edited : wait, I found it ""The NCCN Guidelines® for Breast Cancer already do not recommend Oncotype DX for patients whose tumor size is less than 5 mm. Our findings confirm and may expand on that recommendation by highlighting other prognostication values from tumor characteristics."" but it's an older article & I'm not sure if it's still applicable. https://ascopost.com/News/59695



    BC didn't cover yours in 2019 because you had a positive node & until October 2021 positive nodes except micromets disqualified pts from it. After TailorX reported out they changed it & now they do cover it.


    The full manual is here & the oncotype section is not updated yet but just FYI http://www.bccancer.bc.ca/health-professionals/cli...

    The update about covering Oncotype for more women is here http://www.bccancer.bc.ca/systemic-therapy-site/Do...

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    Moth,

    Thanks! Enjoy the weekend!

  • smoki
    smoki Member Posts: 4
    edited April 2022
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    Just saying hello!

    I live in Vancouver and was diagnosed in 2016 when I was 40. Had the whole surgery-chemo-radiation thing and just finished my 5 years of Tamoxifen. I'm now really anxious about being out of treatment, and worried that I should be taking Tamoxifen for longer. I really want the BCI test to see if more hormonal therapy would help, but it's not available in Canada? Sad I made a separate post about this to see if anyone has been able to get it. I'm not looking to have it covered, but just ordering it seems to be impossible, which is very frustrating.

  • BbyMom
    BbyMom Member Posts: 31
    edited April 2022
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    Hello from Burnaby, and thank you, Cathy, for telling me about this page! It's great to connect with local peeps and this looks to be an active group with 312 pages.

    I went for a mammogram at Mount St Joseph's breast clinic in Aug'21 and after numerous mammograms, an ultrasound, an MRI, a biopsy (at BC Women's), and a lumpectomy, I was diagnosed in Feb'22 with DCIS Grade 2 in my right breast. The biopsy and all the prior tests only showed various abnormal activity like ductal hyperplasia (and a cyst in my left breast that is being monitored) but the lumpectomy pathology report showed DCIS and unfortunately without clear margins so I had to go in for a second lumpectomy at the end of February. They got clear margins and I'm now waiting for my radiation treatment to start. I had an oncologist appointment at Vancouver BC Cancer Agency at the beginning of April and was told I'll need both radiation and hormone therapy (HR+ 100%), went in for the prep appointment last week, and hopefully will start radiation next week. There is soooo much waiting! I'm just really anxious to get started so I can hopefully stop this thing in its tracks and carry on with life. (Wishful thinking?) I'm a bit worried though as I've had more pain in that breast lately and the oncologist felt two enlarged lymph nodes. She just mentioned it casually while doing the exam but I looked into it later and learned that it's not a good sign. I hope to hear back on the ct scan results and my radiation start date sooooon!

    Take care everyone and have a great weekend!

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    bbymom,

    You'd better fill in those diagnosis info in the profile, so you don't need to repeat it, and ladies with similar diagnosis can find each other and share the journey more specifically.

    So long waiting from your 1st mammogram to post surgery pathology report, I wish your report back normal.

    I am from richmond.

    Cathy


  • BbyMom
    BbyMom Member Posts: 31
    edited April 2022
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    Cathy67, Good point... I should figure out how to do that now that I know what most of those things mean. Thanks for the tip.

  • moth
    moth Member Posts: 3,293
    edited April 2022
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    bbymom, hi & welcome. Just fyi since the board is doing changes & rolling out a new design, the diagnosis & treatment sections are not always saving properly for people. So if it doesn't work for some reason, it's probably a fault at their end not yours & then I'd suggest trying again in a few days rather than spending lots of time trying to get it to work. Some of us have had errors come up in our dx & tx sections & I still can't edit mine....

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    bbymom,

    I got my mammogram/ultrasound report from my family doctor a few days ago, mammogram back clear, ultrasound said the suspicion is 5x4x5mm, give out birads 4, no 4a, 4b or 4c. I discussed with my family doctor the possibility to just go ahead for surgery, remove it and do pathology report, it ends with biopsy at first, that is the process here. Given the 5mm the size of nodule, how much will be left, how complicated the future follow-ups will be (however definitely I want this benign result, just concern the troublesome in the future). How can you get the surgery opportunity given all the exams back clear? And it is so lucky that DCIS is found, though the whole procedure took almost half year, I never seen someone got that long time to get final diagnosis.

    For me, I found a tiny lump myself, so my MO asked to add ultrasound for the coming routine, and of course make it earlier. The mammogram back clear, and the lump I found is benign, however they found another one just next to that one, and needs biopsy. It is scheduled on May 4.

    Enjoy the sunshine.

    Cathy

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    Ladies here, especially in vancouver area,

    I got my mammogram/ultrasound report from my family doctor a few days ago, mammogram back clear, ultrasound said the suspicion is 5x4x5mm, give out birads 4, no 4a, 4b or 4c. Family doctor said I got to decide whether it will be mastectomy or lumpectomy this time, he said to discuss with surgeon, but I said I would like discuss with MO at first. My breast is small, dense, however the both sides are perfect in the size, cause from my childhood/teenage, my surgery side is larger than the other side, can see. Now after lumpectomy, they two almost the same! I don't need to wear bras unless I go for sports, I wear sport bra, it is comfortable. So, I will only consider from MO viewpoint, what is the difference. For shape, I prefer lumpectomy, if it is still 5mm, up to 1cm at most. Anybody has any thoughts or the questions I shall discuss with MO? Appreciated.

    My biopsy is scheduled on May 4, I called to make appt with MO on May 13, they can make earlier but they said the biopsy report now needs over one week. I only experienced one biopsy and that is positive, but I heard they can get quick result in a few days, I saw some ladies in the forum mentioned that. But we are in Canada, things are different, I always wish have chance to talk to radiologist, but never got.

    What else I can do for my biopsy report? Appreciated.

    Enjoy sunshine, sisters.

    Cathy


  • gretknee
    gretknee Member Posts: 10
    edited May 2022
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    Is anyone able to share insight on what the current wait time is for a diagnostic mammogram/ ultrasound in the Okanagan area lately? Specifically Kelowna?

    I found a new lump and had it checked by my doc April 13thand I still haven’t been contacted to book an appt. Over a year ago I was seen within a month.

    I tried to call the Bc screening centre as it seems to be where they sent the req. but the voicemail literally says not to call to confirm if they have the req or wait times.

  • cathy67
    cathy67 Member Posts: 411
    edited May 2022
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    I report a lump on March 9, my oncogist ordered diagnostic mammogram/ultrasound that day, it was April 12, biopsy was ordered that day, it is May 4. I am in vancouver coastal health, in richmond. I think you have to contact them. Wish you a benign result.


  • gretknee
    gretknee Member Posts: 10
    edited May 2022
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    Thanks cathy67! I hope your biopsy is benign too

  • gretknee
    gretknee Member Posts: 10
    edited May 2022
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    They sent the req but it was never received. Argh. I’ve waiting impatiently for nothing

  • cathy67
    cathy67 Member Posts: 411
    edited May 2022
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    gretknee,

    Can you ask for priority in that case? I always want to look for private service in that case, how much diagnostic mammogram/ultrasound cost?

    I will leave for biopsy soon.