Canadians in British Columbia
Comments
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Kay88, first, I am sorry you are here posting this. I sincerely hope it turns out to be nothing and that is the last post you ever make on this site.
In my case I had no doctors to pick from. I was told who my surgeon was going to be. I think I could have put up a fuss and insisted on someone different. But frankly I was in shock, freaked out, trying not to have a breakdown and pretty much not firing on all rockets. I said I would not bother with the needle biopsy and went instead to a surgical biopsy and they told me who would be doing it. Okay then, I guess that's who I see. I was very happy with her, she also did the lumpectomy. I had complications with my lumpectomy but I have never felt this was an error on the surgeon's part, more one of those fluke things that goes wrong. Kind of like getting breast cancer.
I had my surgery in Salmon Arm. I saw the oncologist in Salmon Arm. You can private message me if you want more information. I hope to god this turns out to be nothing.
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Me too, Kay88. I lived in Kamloops decades ago when I was doing my nursing diploma Cariboo College which of course is long gone. It has certainly grown since then so I would think that you should have some choices. First first things 1st though I'm for you I suspect tomorrow cannot come fast enough. Runor is quite close to you and I hope that she's able to help you too.
Let us know tomorrow and I will be thinking of you.
Marian
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We're thinking about you Kay88 and hoping it's nothing. I felt a lump and didn't go to the walk-in clinic until 5 weeks later. Had a mammo and ultrasound 2 days later and they told me right away they wanted to schedule me for a biopsy. I don't have any recommendations for specialists in Kamloops but if for any reason you need any names in Vancouver, just ask. But fingers are crossed you won't need any recommendations! Sending positive thoughts.
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Hi Kay88-
We're so sorry you're here with this worry, we know how scary it can be. Please keep us posted on what you find out, we're here for you either way!
The Mods
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Hi Kay88 - I hope it's turned out to be nothing.
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Same Kay88 - hoping that's its nothing...
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Hi everyone, just checking in.
I had my 6 month'ish after treatment end meeting with the MO and was discharged from the FVCC back to my family doctor. (they did ask if I was ok with this & I got the sense that if I didn't have a good family doctor they would have kept me but I love my doctor so it's all good & I'd just as soon not have to go to the cancer agency for check ups if not necessary). I had a clean mammo a couple weeks ago and the MO said she'd put in a request for a bilateral breast MRI 6 months from now. She said that there are some new guidelines out since January and BC is increasing funding for breast MRI for women with dense tissue. She said that in my case it would be reasonable to ask for mammo + u/s or an MRI at regular intervals. I will do the MRI hopefully in 6 months and then see whether I want to continue an alternating sched of mammo and mri.
Seeing the endocrinologist next month for input about my osteoporosis. I've already had one shot of Prolia so not sure she will add much more to the conversation but I'll go anyway.
I've been having some hip pain on & off since Dec, had an xray which found nothing obvious so I think my next step is physio - but I'm dragging my feet on it because I already have a bunch of shoulder exercises which I've not been doing. I'm sure they'll add exercises for my hip and I'll just end up with a longer list to feel guilty about not getting to.Hope everyone is doing well and enjoying the finally warmer weather
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moth
sounds like each MO has different approach on how long they follow the patient post treatment. So lucky to have a good GP.
I requested a Dexa scan thru my GP as discussed, and came back Osteopenia. I have since read Tamoxifen could cause it for pre menopause women. Haven’t got a chance to discuss with my MO yet.
Had my first post treatment Mammogram, ordered by my MO, 3D mammogram at BCCA. I remember when I asked my MO last year about dense breast he said 3D machine can assist with that. Then reading my 3D report says too dense and an clean mammogram shouldn’t not be used as indication of non issue.
I didn’t want to wait till end of May to ask my MO, so I requested ultrasound from my GP, will get it done at agency tomorrow.
Not sure how useful an ultrasound will be for dense breast. So I will have to wait and see.
Hope everyone is doing well.
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NVDobie - bummer to hear about your osteopenia. Will be interesting to see what your doctors want to do if anything.
The mammo+ ultrasound is what they seem to be recommending right now for dense breasts but as you saw above, my MO also put in a requisition for an MRI - but I don't know if they'll approve it. Are you thinking of doing MRI for some of the screenings?
I met the endocrinologist for my osteoporosis today & really liked her. My vitamin D levels are really low so she's got me increasing my supplementation and we will monitor it. Plus we came up with a plan for treating my osteoporosis & tentative plans for how long I'll stay on Prolia and the strategies to come off it (because when you come off it the bone density can fall again and so you need to take another medication to lock it in). It was reassuring to talk to her because she ran some fracture risk assessment calculations on her computer and said I'm low to moderate risk and it's actually not even clear that treatment is necessary at this stage...but there's nothing wrong with pursuing treatment and it might have some additional benefit of prevention of bone metastases so I'm doing it.
I'm definitely looking to add more exercise as muscle is what strengthens bone.0 -
NVDobie and Moth, nice to see you as always! As for Prolia, I have been on it for about 3.5 years and really need to phone the Vancouver endocrinologist to see exactly when I started. I continued it every six months when I moved here and I see my I see my Victoria endocrinologist in May. I will be asking about whether I should stop prolia. In Vancouver I had an annual bone density test in the doctors office but have not had one since I left. I will also ask about that.
As for chemotherapy, I start cycle six of paclitaxel this week and the BCCA protocol is six cycles. I see my MO the day before chemo and have many questions for her.
Marian
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mariaelizabeth: hello fellow Canadian. Let me know how you do on paclitaxel. I am STILL waiting to get a spot on a chemo chair. I worry about long delays. I feel like since I am Stage IV I am going to die anyway (their thoughts, sometimes mine) - so get those early stage people in first and "cure" them. I don't know how long those liver mets were percolating. I live in Burnaby. BC Cancer Agency has crazy stupid "wait lists"
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marianelizabeth: see the other post. I misspelled your name.
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NVDOBIE-
I was told by a radiologist that mammograms followed by either ultrasound or MRI is a necessity for screening of dense breasts. However, it seems that even some of the MOs at BCCA are not up to date with that practice. Is BCCA doing your whole breast ultrasound after a requisition from your GP? I know my GP supports ultrasound for screening of dense breasts, but it’s not clear to me if BCCA is accepting those requisitions.
Moth - who is your MO? I’d like to mention his or her name to my MO, who doesn’t seem to be aware of the change in screening that came into effect in January. Ironic, because back in January my MO said she was discussing new screening for dense breast patients with the BCCA radiologist. When I saw her this month she said I would just have mammograms once a year, because in her words: “ultrasounds are not done regularly”. Not sure why the doctors at BCCA would be slow to adopt this new protocol for dense breasts. Did I just get unlucky with my MO? Is she the one MO at BCCA who opposes this change, or is she just waiting for the radiologist to recommend it before she takes the time to write a requisition? I have dense breasts, and a strong family history so I definitely want to include mammogram with ultra sound or MRI, in my annual screening plan. I thought BCCA had this great reputation for cutting edge care but feeling pretty let down with my MOs handling of this so far.
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For those of you in Vancouver, wondering if anyone can recommend a GP that is particularly knowledgeable about breast cancer survivor care. I like my GP, but I feel like I need a specialist GP that knows what additional tests could be useful in monitoring me going forward.
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Walden, it was Dr. Katharine Xing at FVCC who told me there were some new guidelines since January about this. I haven't been able to find them on the cancer agency website yet. She was a bit vague about it and I got the sense she wasn't sure if they would pay for it. Next time I go to my dr I will ask where that referral is in case I need to arrange and pay for the MRI in the fall privately.
I hope you find a good GP though I have to say that most people are reporting it's hard to find *any* GP, good or otherwise. I can tell you what my GP does:
cervical cancer screening every 3 years, colon (FIT) every 2 years, annual thyroid blood work (because I had previous thyroid surgery). I'm to show her any moles or weird skin things and she'll decide whether they need removing (or referral to a derm). I think she will also do just general blood work annually. No tumor markers or anything like that.0 -
Thanks to wren, I go to the NP that BCCA sets up, she’s fantastic. I can get in to see her same day, she listens and orders tests as needed. If she isn’t sure, she looks things up and double checks with the GP in the clinic. I think I get better service, more time and more thorough attention. She can prescribe /order pretty much all the same stuff as the GP and she actually will read my file before we talk. PM if you want her name.
Hmm...interesting observations about MO and their ability to stay on top of protocol changes. I think some of the problem is their staff may not brief them well. Things seem to happen and work better at visits when the GPoncologist sees me first, then the MO and then the GPO does the paperwork. Sig
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marianelizabeth, I see you are chugging along on Taxol. Are you still thinking of doing a spring get together in Vancouver?
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Ann, I would like to yes to get-together and mentioned it only yesterday. I found the lists of women from previous potlucks.
I am on a 2 night holiday on Saltspring with a couple of friends. I am also still doing the Paclitexel and Thursday is end of cycle 6 and tolerating well.
Maria
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Maria
So glad you finished paclitexel. How are you feeling?
Walden1
Yes. I have my GP ordered Ultrasound to be done at BCCA. BCCA did it without giving me any trouble. For the most of screening tests including regular blood work before BC, I normally request thru GP on my own. I have never had a GP ordered voluntarily without me asking, one GP in Ontario made suggestion once to do Mammo once a year after I turn 40 due to dense breast. The rest of GP's I have, although friendly, but not proactive on anything.
When I had inconclusive Mammo. my GP did suggest ultrasound which is a progress. However I am still puzzled why Chia thinks 3D mammo will be sufficient for Dense breast. Shouldnt he know? Anyway, that was his answer when I asked him way back when how to monitor dense breast.
Now on the mammo result from BCCA, it actually states that no finding of the mammo report doesnt proven there is no issue. :-)
Goes back to what Wren said, we really need to know our body and be our own advocate. MO and Doc seems all fall into the programs of " waiting for symptoms"Hope everyone is doing well, enjoying the great weather. I am up for it for our next get together.
April
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Elderberry
Welcome to the group. Have you got your chemo schedule now?
How long have you waited for already? I remembered waiting for 2 months or so before starting chemo. I dont personally think they prioritize based on stage, more likely based on sequence of referral from surgeons. But in any case, call them if you dont hear from them. Sometime mistake happen.
On this forum, there are some previous thread on an extensive list of chemo tips. Might be worthwhile to dig it up and get prepared.
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The waiting for results is the worst. I agree that you need to know your body and listen to it. Not all aches and pains are a reoccurrence. Unfortunately there is no 100% prediction test/tool so monitoring and symptoms is the best we have.
It would be great to get together again, maybe in June? Marian, are you still thinking of hosting or is that too much for you?
Be well,
An
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Ann, the friend whose house I would use has some health problems so I won’t ask her. Fall would be better and I think she is going on a trip so we could certainly do it then. I am finding many people are starting summer plans in June. Chemo today and #2 of cycle 7 and going well at low dosage. Would still love to talk to you.
Maria
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Any of you ladies dealing with low White Blood Cell counts and Neutrophils post chemo?
It has been a year since last chemo, the number is still quite a bit lower than the normal range. Blood sugar is also higher than normal. Both numbers are heading towards the wrong direction instead of improving. Would be a bummer if chemo gives me type 2 diabetes. :-(
Moth
How has your WBC and Nurtophiles been? How is your fasting glucose? How is your MO monitor them? My MO doesnt seem concerned. I requested test from my GP on my own, 6 months apart. One friend has the same issue, her MO from BCCA is ordering labs every two months.
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NVDobie, bummer about your lab results. My neutrophils are still sluggish as well. Mostly hovering in the 1.6 range all last fall (last chemo was July). I got as high as 3.3 in March but then a month later it was back down to 1.6 (the only reason I had 2 tests fairly close together was that the GP ordered one and then I got an appointment with the endocrinologist and she ordered a whack more)
The oncologist was not particularly concerned about my low #s when I asked them about it last year. They said so long as my RBC was up and the neutrophils were in the 1.5 range, they weren't concerned and I shouldn't be either so I try to hang on to that.
My GP told me she will check the numbers for me whenever I ask. I'm in clinical now twice a week in hospitals so I'm super careful and always assume that I'm a bit immuno-compromised. I was super happy to see that one 3.3 result because for a while I had a secret fear that we'd thrashed my bone marrow and I'd have leukemia or something but now I think that maybe this is just a slow recovery. FWIW, I did read last year some study that was looking at whether people maintained their vaccine mediated immunity post chemo & they were saying that they still saw changes in the blood for well over a year post chemo so maybe this is relatively normal to have a long recovery.
I will be seeing her next month for my osteoporosis injection so I might ask to check and see what's happening now. I have to check vitamin D again in mid july anyway and see if the 4000IU/day for 3 months has been effective in raising it to normal. I haven't had glucose checked in over a year so maybe she'll order a full panel with glucose and lipids and everything just to see.0 -
Thanks, Moth
It is annoying as I really want to put all these behind me and move on with life.
My WBC was 2.8 last Oct, it is at 2.9 this week. However neutrophils has gone down from 1.5 to 1.4. Fasting Glucose has gone up from 5.8 to 5.9 (normal is 3.3-5.5)
@ MO did say last time that sometimes chemo messes up blood sugar, but 12 months after still?
Same as you. after each round of lab, I generally spend a couple of days research chemo induced Acute Myeloid Leukemia. I have also read that vegan generally have lower WBC than omnivores.
Seeing my MO tomorrow. If MO doesn't do it, I am thinking about requesting an hematologist referral thru my GP if possible. Would like to at least understand how it works and why it is lasting this long. MO is too busy to answer my long list of questions.
Did your MO referred you to the endocrinologist or your GP?
Thanks for your suggestion of Dexa scan. Otherwise I wouldn't have know that i am osteopenic. Still not sold on taking calcium supplements yet, so i am up the in take on fish and tofu to boost my calcium.
3 reasons to exercise: reduce chance of recurrence, prevent type 2 diabetes, slow down or hold off osteopenia. Start to think maybe i should get a job as a group fitness instructor or something.
With you now in hospital environment all the time for your school, sanitizers are our best friends. I still have the list from you during chemo about food safety etc.
How is school going?
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My MO ordered the dexa scan and referred me to the endocrinologist. FWIW, my endo said she's way less worried about calcium than Vitamin D. If you haven't had your vit d checked, ask your GP to add it to bloodwork but be aware than MSP will only pay for it if a specialist orders it. It's something like $65 otherwise. But I was severely low in vit d even though I'm light skinned and spend time outdoors year round. I wish I'd had it tested years ago because I suspect I've been low for a long time.
exercise is definitely one of the best things we can do! One of my zumba instructors keeps suggesting I become an instructor too but I just love to be a participant and dance - I don't want to have to think about choreography and classes and whether the person in the back is going to have a heart attack.School is INTENSE. I hear from students further ahead that this term and the next are probably the worst in terms of workload and stress. We've lost a number of students already in our cohort -either quit or failed. I'm struggling to eat well and exercise and sleep enough as it seems there's just not enough hours in the day.... but mostly I'm enjoying it and apart from the moments of panic and nerves and trying to not faint at the super gross things, and the crazy number of things I'm trying to memorize, it's been fun!
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moth, good to hear about school. What area is your clinical and I can't recall what year you are in? My son is working day 3/4 shifts in his first rotation as a graduate nurse where he did his nursing degree in Terrace. I leave Friday for Terrace for his pinning ceremony and also his convocation. He said that 3rd year was his hardest.
My blood work has been very good considering the fact that I finish Cycle 7 of low dose Paclitaxel this week and will carry on with it as long as it works or creates side effects like neuropathy.
Marian
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Marian, I'm in term 3 of a consecutive 9 term program (I'll graduate in Aug 2021); clinical placement until end of July is on an acute care of the elderly unit in major hospital. Congrats to your son! My dd is in the same program as me; she's graduating in Dec so I'm following in her footsteps lol
Very glad to hear your bloodwork is holding up well! That's certainly a major issue and impacts so much of the treatment choices. Fingers crossed for no neuropathy either.
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HI ladies
Welcome to all the "new" ladies
Have not been here for a long while. Been living life, enjoying m grandchildren. I had a re-reconstruction with latissimus flap, so much better than what I had. During my post-op I asked my plastic surgeon to have a look at a spot on my nose. Turned out to be basal cell carcinoma, Had surgery with skin graft. Two weeks ago I saw a dermatologist as a precaution, He found several cell changes in my face and recommended photodynamic therapy. This would lower my chance of getting skincancer by 80% so that was a no brainer.. Hope life is good to
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Hi all, have any of you had scar repair surgery post BMX (no reconstruction)? I was referred to a plastic surgeon prior to my BMX last August, but didn't bother making an appointment since I knew that I didn't want reconstruction. Told my general surgeon that I just wanted to be flat. (I am 63, second bout with this stuff and didn't want to go through additional surgery or risk complications.) Surgery was at Jim Pattison Outpatient in Surrey.
Was not thrilled with my results but understood that I should wait at least 6 months until swelling had subsided before taking any action. So it's been 12 months, GP sent a referral for me to see a plastic surgeon and it was refused! They said I should go back to the surgeon who did the BMX - the one who left this mess in the first place. That if I went to a plastic surgeon now it would be a private pay situation, eek!
My GP told me last year that any corrective surgery would be covered by MSP
Have an appointment to see general surgeon next week and not sure how to approach this with him. Any suggestions or has anyone else had a similar experience? Your feedback would be appreciated! Thanks.
Dale
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