Canadians in British Columbia

Walden1

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.

wrenn

I love my nurse practitioner (provided to BCCA patients who don’t have/like their GP). My GP was a nightmare. She not only knew nothing much about types of breast cancer but was very impatient with my anxiety right after BMX complications. My NP is amazingly up to date and has great compassion especially with health anxiety related to cancer

I don’t think all MDs keep up with latest research.

moth

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.

Pots

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

Pots

marianelizabeth, I see you are chugging along on Taxol. Are you still thinking of doing a spring get together in Vancouver?

marianelizabeth

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

NVDobie

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

NVDobie

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.

Pots

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

marianelizabeth

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

NVDobie

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.

moth

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.

NVDobie

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?

moth

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!

marianelizabeth

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

moth

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.

Ossa

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

akmom

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

Eily333

Hi there,

I live in Surrey and had a female surgeon from Jim Pattison for my BMX...during healing I had a Hematoma and a Seroma. I went back to the surgeon numerous and had the fluid drained from the Seroma over the course of a year...and it wasn’t going away.I could have lived with the lump/fluid but hated it!!! So she was fine with booking a revision to be done under light sedation..didn’t want the whole anesthetic thing again!

Well on the day of surgery she was running late and was going to cancel me!! However she asked the Plastic Surgeon who she was working with to come by and see it...he ended up taking it out and revising my scar a little under local anesthetic.. i was very lucky!! But he said he wondered shy she hadn't referred me to him earlier...so maybe its possible the original surgeon can refer you to a Plastic Surgeon with no cost....

I hope you can get yours revised..its made such a difference to how I feel about it all.

Eily

akmom

Thanks Elly, I will ask the general surgeon for a referral to a plastic surgeon, hopefully he will be okay with that. I'mglad you were able to get the revision and were happy with the outcome!

akmom

Surgeon is giving me a referral to a PS, no problem. As usual I was all worried for nothing ;

Eily333

Great to hear! Good luck!

PS ... Ioften find I’ve worried for no reason!

moth

akmom - glad to hear you have your referral! I was just about to start getting mad on your behalf

anyone want to get together this fall? a quick informal thingy again at Cactus Club etc would be great IMO

hugs everyone

m

marianelizabeth

Moth, last fall remember I said I could host one at a friend's house. Wish I could and just maybe in late fall I can Put it together. I have forgotten to post here for ages and do know that Ann (Pots) knows but not sure if you or anyone else does but I have been in the Victoria hospice for about 2.5 weeks, again for pain management. This time though the pain ramped up so much and so fast I was taking unbelievable amounts of hydromorphone as well as higher doses of methodone. These were prescribed by my team andand they were trying to get me here but it took a while. When I was here last year the doctor explained that drugs were the first option, then simple nerve blocks. Once they stopped working more invasive procedures were a possibility. So once here it was decided that I would have a surgically intrathecal insertion of a catheter up my spine with an external pump so medications could be infused right at the point where the nerves are. The biggest concern was withdrawal but that did not happen thankfully. It has been a success for the most part though do I still do have pain in my hand. September 9 I will have another surgery also with the catheter inserted but I will have the pump embedded in my abdomen with meds added through the skin to the pump when needed. So far so good although it is getting a bit boring.

I have been allowed on passes recently. I had been on bed rest last week until Friday afternoon but was allowed out for the evening as I had planned a pizza party with my family as all our kids were home. I was amazed when I got home to find to find that my husband had planned a belated 70th birthday party for me with over 30 people including babies and kids, many from Vancouver. It was a total surprise and my husband had planned it for several weeks prior, not knowing I would be here.

I note that there are some new peopleI here on this thread and I'm glad to see it. I hope there is a get-together and if not I will still try to plan, perhaps in November.

Love Marian

My daughter and partner in front, top right our youngest son and left our older son and his partner.

Nice party clothes eh? The green rope holds my IV set-up.

moth

Marian, lovely to hear from you! I'm glad you're getting the pain treated. Pain specialists are like saints, aren't they?

Happy belated birthday girl! And what a wonderful family to pull together a surprise like that! There's a lot of love in that photo!

Let's see what kind of response we get about plans & pull something together. Perhaps late Sep might work for you after the surgery?

We could go crazy and have 2 get togethers lol... the more the merrier :P

runor

Marian E, you have a beautiful family. What good looking kids! I hope you continue to improve and the pain is under control. It sounds like you are in good hands.

adagio

Marian - I do not come on this site very often any more, but today I did - and I am sorry to hear about your pain - and having to be in hospice - but thankfully you have been able to get some help from the surgery. You are a brave woman. How wonderful that your husband organized a surprize party for your 70th - happy belated birthday. And like someone else said - you have a beautiful family.

Not sure if you remember me or not - but I was at our very first get together at your place on West 49th, and we went through chemo roughly about the same time - and we also attended the same mindfulness full day retreat. Maureen - I live in Dunbar.

Wishing only the best for you .

akmom

Marian, happy belated birthday. I sure hope the new “pain pump” does its job. Thanks for posting the photo of your beautiful family xx

Hugs fromDale (I also came to a together at your home in Vancouver)

PS - hi Maureen, hope you are doing well!

adagio

Hi Dale,

Wow - it has been a while since we met at Marian's and I was so saddened to read that you have had recurrence of your cancer. Recurrence would be a tough thing for any of us to deal with - I sure hope that you get your mastectomy scars sorted out. How unfortunate that you are not happy with the results of the surgery - but hopefully the plastic surgeon will be able to help.

Thankfully, I am well and I am filled with gratitude and never take a day for granted -- just trying my best to LIVE life while I am alive. So lovely to reconnect with you and wishing you well with your referral. Maureen

marianelizabeth

Of course I remember you Adagio (Maureen) and AKM MOM (Dale) and I really want to have another reunion. Also Ossa (Ase) Runor, NVDobie and Moth. Hi Elly. I was just home with my older son and partner and she made me lots of treats to bring back to hospice. Today has been a better day and maybe we are getting the meds better sorted out. My second surgery is a week from tomorrow.

Now that I am back here I will get it together to be on more often as I do miss you all. Maureen I remember well one of our first conversations just after your first chemo in 2012 when you were so violently ill all night long. I am on Gemcitabine now and had vague nausea Friday and Saturday after Thursday chemo.

See you soon and hope your long weekends have been good.

Marian