Canadians in British Columbia
Comments
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Sadie/Ash. Thx for heads up on Ibrance. Sure hope I won’t be having a recurrence but’s it’s nice to be educated.
Nope we sure don't get to choose our oncologist except sometimes the rule of “squeaky wheel gets the oil" works. If I hear of some good surrey MO/RO recommendations which I hope you girls will chime in then I am sure to be the squeaky wheel.
When your dealing with your life you want the best. I did fire two docs in the last ten years. One said he hates paperwork and yup you guessed it, I required paperwork that he kept sitting on. But the last straw was when he laughed straight into my face and said I wouldn't get lymphedema. dang it anyway to say the least, that did it. BTW I did get lymphedema.
Other was my breast surgeon. Wow she got so flustered at my thoughtful questions she had to leave the room temporarily to relieve the hot flash I gave her. When I told my MO I wanted another surgeon scheduled he hummed and hawed and quietly said something under his breath about hospital politics (?) not going to like it.Dang it, I'm dying of cancer and do I look like I care about their scheduling of docs and who get OR time etc, just give me what I want... ugh! Btw girls the pleasant words “I'm not comfortable with that doc" works pretty good" as squeaky wheel ammunition.
I'm going to try my best to make sure my wheel is extra, extra squeaky for requesting a mri Friday. I hope it works! Thery hard to get as we all know. New doc so I'm in unchartered waters.
Funny how cancer makes you gutsy. I'm pretty passive otherwise.
Ok all, have a smashing great day all you and looking forward to MO/RO recommendations. Dishes piling up here and are calling out to me.
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Wrenn: Many moons ago,and I shouldn't say it but it's true, I found chia not to be socially inept when he was training female interns. This is when he would pull out his full show of peacock feathers. I was entertained by it all and he was more attentive. Yes he will answer all your questions which is wonderful, but boy he sure didn't want to hear about my vitC IV. I learned to shut up really quick when it came to complementary med.
Anyway I don't want this thread to be a gossipwagon so I'll quit while I'm ahead. Just looking to see if there are any good MO /RO in surrey then I may not request chia. I am grateful that he treated me aggressively.I do feel he is brilliant.
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Wrenn lol, yah I remember the good ole days when I went to bcca and the parking was something like a buck an hour. That all changed as I think they went private. My pet peeve is paying to park a car and unless I’m really ill I’d don’t mind walking up to half a mile even in the rain If it saves bucks.
For my giant tumor stuck to chest wall they sat around the table and discussed who would do the job and how. But yeah they do have a protocol to follow. The smart oncs can tweak your treatment to optimum, so experienced onc is good. Also a onc that loves his job is a good pick! (And yes I did have mammos for five years starting age 4O but tumor was was missed for dense tissue.) I hear Karen Gelmon is good and Marianne liked Shenkier. At bcca.
I’m glad mo did have some compassionate words for you. We sure do need them in times like this.
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UBC is enrolling cancer patients with chronic pain in a study - sounds like they're wanting to use immersive /virtual reality media for pain
http://blogs.ubc.ca/arvrha/files/2017/05/Recruitme...0 -
hugz - I'm at FVCC but I'm early in my journey and my MO actually went on medical leave right after we started treatment. I haven't even met the new MO who's covering for her (I've spoken to him by phone several times tho...)
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moth. Thx for the info on the study. I'm signed up. It's a month long study and takes 30 min a day. That's doable. I'm waiting for all the particulars in my email to come. Apparently you wear a head set that's maybe about two pound size and they come and set up equipment for you. I'm on vaca early March so will start late March if all goes well.
They are recruiting 100 people so act fast if you are eligible and want to. Thx.
Also did you get a good flavour from talking to your new surrey mo? Does he answer all your questions. How was your first round chemo on you?
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Hi
I am receiving care at FVCA and my MO has been excellent. His name is Dr. Gary Pansegrau. My tumours were Triple Negative. I have been working with him since Sept. 2017 and he has been not only very informative but he always takes the time to answer all my questions.
As for an RO I recently saw Dr. WInkle Kwan at the FVCA, I have only seen him once but he was very informative and again he took the time to answer all my questions.
Hope this info helps those looking for doctor recommendations at FVCA.
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I did read up on Pansegrau and his rating said he was pleasant and answered questions. Glad you confirmed it! Thx
I wonder if he likes dr google. Most docs don't like the competition as it keeps them on their toes when you saddle them down with googles research. I don't bother with anything that sells products just university type and major cancer centres.
So far he looks like my only choice if I do decide on surrey. Nope you can't pick your MO unless your a squeaky wheel. But I'm gonna try.
AnxietyGirl how did you valentines treatment day go. So sad they won't cold cap. I could handle no hair but no brows and lashes was such a blow. I felt like I was ETs sister.
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hugz - I got febrile neutropenia a week after my first round. I was in hospital 4 days. My neutrophils are still in danger zone but they took me off IV abx and sent me home on oral once the fever came down.
I haven't really had questions and really there isn't a lot of deciding right now, kwim? Everything is obviously on hold until my bone marrow decides to wake up and do its thing.
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moth I've had that great drug. It works! Towards my last chemo to be finished, one morn I came out of my bedroom and felt so weak my brain said to lay on the kitchen floor and so I did and didn't move muscle. Thankfully My sis had one look at me and packed me off to bcca where they admitted me for deadly low levels. So low I was not in my right mind to even know how Ill I was. They gave me that nupeogen (sp?) drug.I bounced back quick and they discharged me after a day. Oye the things you go thru. I hope you recover super speedy so you get your next chemo on time. Keep marching forward
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Ok interesting day here. Off to surrey for my ultrasound except after Dr Jantzen saw me she ordered ct instead and said, well if you have recurrence you will want to go back to old onc. Dr chia. Looks like I may give him a whirl again unless he won’t take me. If he doesn’t I’ll ask for gelmon or Shenkier. Hate the drive and parking.
Now my md will have to put in a referral to BCCA Vancouver as I’m out of catchment. She told me before she didn’t know how to send me to van but only surrey so I did the legwork for her and will help her with this task. Oye talk about being your own advocate.
How long before doc gets ct results? Thx you have been much help.
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hugs4u, remember what I said about ultrasound versus CT~~makes sense as in my case, it being chest, my radiologist at BCCA said chest CT with contrast shows up best. Shenkier may be better bet as she is not so crazy busy as Gelmon is. Not only is she head of breast cancer team but she is involved with much research. Nevertheless, Gelmon is good~~I would have had to wait 10 days to see her 5.5 years ago and my BS seemed to consider it urgent to get chemo going. I still really like Dr. Shenkier and would like to see her one more time for closure as she went on sabbatical for 6 months literally the day I had my MRI. The one thing I would say about parking is to add a bit of exercise I used to park farther away in free parking or take the bus. You could drive in and park a bit away and bus or skytrain/Canada Line it.
If tests are done at BCCA, the initial results are available online for MO's etc. though I had to push for them to call radiology. If at the surrey hospital it may take more time unless you have a doctor willing to push. Wishing you good luck!
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Marianne. Thx so much for all your help. Surrey breast health clinic doc Jantzen was very good. First she humed and hawed asking if I felt bone pain as she would have sent me for bone scan. I just kept saying my pain was deep into chest only in reconstructed boob. She examined it asked me all about my implants thinking maybe I had implant problem but it was fine, so she asked me would I do CT that day if they could fit me in. I said absolutely and was put in by noon. Total time at hospital four hour. Practically a record! Perfect!
Busy day chugging water trying to flush ct contrast out of body. Yuck!
Yes I agree parking away a bit from bcca is good exercise. I usually find something around 14 th ave. neighbourhood for two hours. But sometimes I get nervous thinking I may get towed. I’d like to find something free for all day if need be. I may have to hunt for that!
Your on last day Ibrance today right?
I hope. You sound like your have time of your life overseas. You go girl!0 -
Dear BCers
Such a good idea to have this thread. I am new - lumpectomy last week and meeting with surgeon March 12 for results. Love my surgeon and all went well but scared and learning a lot from this site.
Treatment will be at BCCA Vancouver though I live in the gulf islands most of the time and health care is not great. Revolving door of locums and nurse practitioners so no continuity. I do have a referral to a new family doc in Vancouver. Took years to find one. Apparently they are not allowed to refuse pregnant women or cancer patients. Not sure if this a bonus or not 😐.
Can anyone tell me if the surgeon will outline treatment plan or just refer me to an oncologist for that? Her initial take was that I won't need chemo just rads. I have been scouring this forum for good referrals. My friend has Dr. Ingledew for RO and likes her a lot.
Hugz - About parking - if there is any way you can use transit that works really well. I get off at Broadway Canada Line station and walk a few blocks. May be a long trip from Surrey but from Tsawwassen Ijust listen to iPod and zone out.
Thanks for any advice and I hope your daffodils are blooming!
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DearLife, I am a fellow rural Canadian and have read with envy about people who have 'teams' and nurse navigators. I have had to be my own advocate and the squeaky wheel and just like you live in a small community with revolving doctors. It is true (for me) that my regular doc has zero input into anything that was happening with my treatment. He makes no decisions about any of it. But he could have acted as a central figure to keep his finger on my pulse, so to speak, and see how I was doing with it all. He could not have been less concerned. I finally fired him and found someone else, which in rural Canada is no small task!
Here is how my gong show went:
Bad mamm, needle biopsy suggested, I said no to needle and opted for surgical, to get the clearest possible sample.
Surgeon tells me it's cancer, I decide on lumpectomy , she schedules the surgery. She made no suggestion as to further treatment, just told me the next stop was to wait for a call from the cancer clinic. Wait. Oh my god the waiting goes on FOREVER!
Cancer clinic said I would see Dr. X for radiation and Dr. Y for chemo. I then asked for my chemo at a different hospital in a different town and it's then I fell through the crack. Somehow this request got lot in translation and had I not been on the ball, making calls instead of waiting for the phone to ring, I would still be waiting!
In my case I met with the medical oncologist and requested the Oncotype test. Decisions about treatment waited for the outcome of this test. Then met with radiation oncologist who told me her plans.
I had 16 shots of radiation and after that, having heard by the Oncotype that chemo would not benefit me at all, I started tamoxifen. And here I am with a baked boob, lymphedema, a frazzled brain and thanks to tamoxifen growing a beard that makes Hub jealous (just kidding, it's only a few whiskers, but boy they are epic!)
I hope you find your way through this maze but it is more complicated being rural. Not impossible, just more awkward. Good luck to you.
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Thanks Runor for sharing your story. So sorry it has been rough for you. It must be really hard being your own navigator when suffering so many side effects along with the anxiety of cancer. I hope you can find better care somehow.
I am moving all my health care to Vancouver because I have lost confidence in rural service. I have a place to stay there, so I am lucky that way. I know we have some very good cancer specialists in BC, but they seem to be in the university hospitals or provincial cancer centres. We may have “universal" health care, but the quality is not at all universal.
I will ask about Oncotyoe testing and stay on top of the follow up.
Take care. I wish you good luck too.
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dearlife. I do like university hospitals as the teaching staff is on cutting edge of new techniques. It's true you might have students in your surgery gawking at you but I think you can request the teacher who is surgeon to do your surgery not a newbie. Runor is right we must track down and hound everyone for follow ups etc. Easy to have your file disappear.
Runor.lol I would like your set of whiskers implanted to my dwindling non existent eyebrows that tamoxifen finished off. Anyone got microblading done! Can you still get mri or head ct scan if you get microbladed eyebrows? I heard you could not. Idk though?
Ok not into a dither yet but my recent CT is requiring a follow up appointment next week which tells me 99 percent that I'm back on the cancer merry go round. No surprise here but I wonder if it's a bone scan to see if I'll be into Mets. Now that I wouldn't like.
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DearLife, i had 5 years of care at BCCA Vancouver and all of positive. My breast surgeon was at Mt. St. Joseph and she was excellent though perhaps bedside manner a bit different. I got my pathology results from her (lumpectomy) and she referred me to BCCA to a medical oncologist but did suggest what might be next. Loving your surgeon sounds good. I know that we all have individual cases as always with breast cancer but one thing for sure is taking it one step at a time. The waiting game is my hardest but lots of deep breathing is useful.
Glad you found a GP as that hurdle is tough~~I did not have one starting out either and did not know about them having to take you. I was blessed in Victoria as an old friend helped me out. Once you do get to BCCA, head to the 4th floor and sign up for getting all documents and test results given to you as they are done.
What gulf island are you from?
Hugs4u, glad you already have a follow-up appt. scheduled as then you will have at least the knowledge and can then relax or join me~~hope not! Once diagnosed in August I had a bone scan and abdominal ultrasound (not chest as like you that was already done).
BTW everyone, I have had a great time in NZ with nary an appt. and my Faslodex injections were done by a nurse who is friends of my sIL and done at her home so all very jolly! Home Saturday and back at it Monday to Friday. I have blood work March 12, repeat chest CT on March 13, MO March 14, Faslodex injections same day as MO and am trying to reschedule Friday as I am off to Vancouver for a celebration of life. No rest for the wicked.
Hugs to you all,
Marian
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Dear Marian. You are an inspiration, living life to the hilt and so much energy to give to others. Great tip to sign up to get all my documents from BCCA. And yes, deep breathing helps a lot.
My DH and I are planning a trip to NZ next spring, probably the North Island. Now this is the kind of “journey" I can look forward to!
I am a Galiano gal, not far from you. I have island friends who had treatment in Victoria and were very happy with it, though it takes a whole day of ferry travel for 10 minutes of radiation unless you stay at the lodge.
So glad you enjoyed your trip without problems. Safe travels home!
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Marianne. I'm glad your rocking new Zealand. You go girl! Do what you can when you can is my motto!
I was thinking that two weeks from ct to follow up appointment is a long time especially if I have to have other scans. When on earth would I start treatment? Is it like 4-6 weeks waiting?
Meanwhile I'm going to enjoy each day to fullest incase I get bad news. My Sisters and I are going to the mountains for a bit of relaxation and fun. I'm going to test out my bum ankle walking in snow but will use my trek poles so I dont resprain it.
Dearlife welcome to the boards I bet BCO wasn't even around when you were first diagnosed. It's been a true helpmate. People here “get it" what we're going thru. Let's stick together. Two is better than one, and the more the better. Let's stomp on cancers ugly head.
HEY ALL I've enrolled in the virtual reality pain study with ubc that Moth posted about March 1st. The study guy is calling me tomorrow. It sounds real interesting. You wear a headset. They set you up at home, It's one month long, six days a week and half hour a day. How about joining me. It actually sounds like fun and I can't renember but I think you get two hundred bucks to boot! We could compare notes and it might help your pain. That is what it's designed for.
COMEABOARD
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Hugz, fingers crossed that you get news you can deal with. I am worried for you! As for eyebrows, have to be like some of the young girls I see lately who draw them on with a fat Sharpie. Vivid, black, dangerous brows that loom out aggressively! I admire these monumental eyebrows but it's not a look I can wear.
DearLife, I didn't have a rough go, I think. I did have a rotten surgery day but that was nobodies fault, who knew I was a bleeder? I did cause a bit of a ripple when I asked to work with a different oncologist than I was assigned. They told me, "BUt he's not part of the cancer agency." I had no idea what the significance of this was. Still don't. He treats patient the same way every other oncologist treats patients. I think he is uber competent and a snazzy dresser. Also has nice teeth. This is very important.
DearLife, I think your tumour falls within the category that qualifies you for the Oncotype. Ask about it but do it soon. It does take time to get the results back and you want to get the ball rolling without more of that good old Canadian waiting!
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Hugz4u, I too applied for the study and they accept and can accommodate Victoria so I am joining you. I must send in answers tomorrow so thanks for reminding me. Thanks also for noticing DearLife's prior diagnosis~~sorry DearLife for missing that.
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Mariane when do you start. I may join your time frame but at least not until I'm back from mountains on tues. Towards month end would be better.
Hey my daffys been blooming for a couple weeks. Yeah spring has sprung! Clocks jump forwards soon to. Love it!
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Thank you all for the warm welcome. Hugz, have fun in the mountains. Nature is such a soothing companion. I too have my fingers crossed for your results and send you my best positive thoughts.
Runor, I’m with you on insisting on an oncologist you want to work with. Confidence and compassion are part of the prescription. Nice teeth are an asset too!
Hugz, It’s true my first diagnosis is older than BCO. (I am older than a lot of things!) But my doc at the time said LCIS was nothing to be concerned about and I forgot about it. A few weeks ago, I suddenly remembered that I had a copy of my first path report somewhere and I found it in my old copy of Susan Love’s book (publication date 1995). The good news is so much has changed since then for the better.
But I wish I would have known I was at risk, and I wish my MDs since then had checked my file. Despite regular annual physical exams, I missed four mammos because I didn’t get the BCCA reminder letters for some reason, my rural nurse practitioners never asked about it, I put my faith in the system and I was dimly aware that the frequency had changed and I didn’t need to get them as often any more. I am still under 70 so should have been getting annual reminders. My tumour is (was) small, and the radiologist said they might not have seen it anyway, but it has caused me so much grief to know I missed my tests. Sorry dear breast!
When this all settles down, I intend to advocate for a new mammogram awareness program in BC. The age of greatest risk is 50-75 and that is when our memories start to get a bit rusty. At the very least, nurse practitioners and docs need to add one simple question to their annual physical exam: “WHEN WAS YOUR LAST MAMMOGRAM? So easy!
So Marian, no worries about my first diagnosis.
Thank you for listening. I feel much better now 😘.
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Hi girls I’m signed up for virtual pain study and hopefully starting April 16. A bit of a late start but holidays and ubc scheduling threw me off my anticipated earlier start date. Oh and it’s 400 bucks not 200 for participating. Hum that’s pretty cool.
Wrenn I love inspire health. I may return, we will see. I took the program when it costs. I love that place!
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Wrenn. We sure are fortunate. Inspire is a bit far of travel for regularly going in but I did take advantage of some of their programs. Their great support. I looked up Callanish. Looks interesting. How many retreats have you done there and can you drop in for day support classes and not retreats? Th
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Wrenn, thx so much. This is all very interesting. Definitely will note for future use.
Back from md doc. Ct clear but I still have a follow up next thurs. I wonder why a recall if it's clear. Ct shows a bit of rad damage upper right lung but all in all I'm good.
I think maybe my mild chest lymphedema must be the problem and will now explore that although I've only had a mild case It must have stepped up. My implants are movable so it can't be that. Any ideas?
You girls are an amazing support and I thank you from my whole heart.
I'll pop in every so often but my focus now is to help the lymphedema thread as so many need education there. If you have lymphedema questions I've become pretty educated on the topic and you can post there or pm me.
A large amount of us get lymphedema and the good news is if you catch it sub clinical or earliest stage it's reversible. You sure don't need a huge swollen arm to have it. Docs aren’t that educated in it so they may Pooh Pooh you when you inquire.
The doc I fired laughed in my face and said I wouldn’t get it. I think he was thinking “elephant man “ movie as people getting lymphedema. Him dumb,me smart and that’s why he has one less patient.My arm is skinny and I've been dealing with it proactively for about eight years.
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hugz4u, what good news and so happy you are not joining me though I will be taking you up on LE info! I love my RMT LE practitioner but every bit of knowledge helps. I also have an appt. later this month for an RMT who specializes in scar tissue release. I only wish that RMT's were covered by our insurance but the fact that they do cover Ibrance and Faslodex and my other meds is so great that a few hundred for RMT I am happy to pay.
Wrenn I know you have been very happy with Callenish and if I were still on the mainland I would try it out. As for InSpire it is now 60% covered by govt. and the rest if fund raised. I joined in Victoria and so far have have used their exercise expert who did a comprehensive plan for me and I see her again when I return. I know I will miss the MBSR gang at Vancouver BCCA. For anyone who has not done Mindfulness Based Stress Reduction and lives in the lower mainland and can get in for the 2 hour weekly sessions (8) plus the one day Sat. retreat, those of us I know who did it have thought it the best course ever. Even if you do not become a practising meditator, many small tips stay with you. Sarah Sample who started it at BCCA 18 odd years ago, has retired but I believe Melanie MacDonald is carrying on. It is usually offered a few times a year and best to get your name on a waitlist. Also not good to take it during active treatment though I did mine during rads.
DearLife, I still refer to Susan Love's "Breast Book" and did you know she had cancer a few years ago? Not BC but she said her treatment gave her insights she never could have had before. I finally got into one of their studies in San Fransisco on lymphedema but then along came my new diagnosis so I had to say no. I was to have gone there en route to NZ.
Runor I will never figure out the ways of oncologists in BC. Mine is a contractor to BCCA. I do wish he had been my MO when I was diagnosed as he had nothing to do with my treatment plan as it was started only days after dx and he was on holiday. I only mention this because last appt. we both got a bit "excited" and he said I was adversarial which I was not. It was more miscommunication because I was really upset that day and came across as being not really informed about the whirlwind in August I think. He made a comment about he not being part of that "gang" over in Vancouver. All OK in the end and for me it was just part of how I look back to dx and knowing now that they wanted to start treatment kind of weeks before as it was so f***iing aggressive just as my first BC was~~unusual then for my age and hormone receptors.
Two days to go until I leave for home and I am having several hours on my own. I have felt vaguely unwell the past few days and chalk it up week off Ibrance and neutrophils and WBC cells etc. working their way back up. I am loving the time off to catch up on posts too. This was my view earlier this AM.
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Marian. MBSR is awesome. I took it offered by bcca. Yes I think your right it sticks with us even s bit. Sometimes I walk meditative in slow motion around the house. Only a couple minutes and it grounds me. I would love to do it again. All these years and I kept my notes they gave me so it did leave a good impression on me.
The pic you posted is absolutely stunning. I’m glad you have time to soak in gods gorgeous creation. True wonderment!
Yes I would love to help anyone with le. Got most off the tricks up my sleeve now!
Shocked to hear that some onc are on contract. This makes me think it may be hard to switch if you are disappointed with them. And then the question is. Do you have to have the next one as a contract person if you switch? I feel the ones NOT on contract might be a little more invested in our illness whereas the contract people might be in and out with their job. I’d love to hear experiences with this. Ooh I’m leary. Maybe I’m just old sch idk.
Marian, why is it that we are not allowed to get our backup. Yesterday at chiro I told my doc I might not be able to do my shockwave treatment with her due to maybe a reoccurrence. She tried to tell me that my cancer wouldn’t return because I was so many years out and ignored the fact I had strange breast pain. I didn’t get my back up but thought, who the heck is she that she knows wheather my cancer is back or not. She’s not a cancer specialist! Made me mad but I just swallowed it to not be oppositional. I guess we pick our battles. Im so tired of explaining my glove and sleeve when I’m not up to it that it drives me to adversary mode. A few times when mosey people asked I just said, shark bite. You should see the look on their faces.
I hope you feel better travelling home. Try to go lowsalt and plenty of water and walks on flight for arms sake.
I
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hgz4u, I believe that our MO's in Victoria have one major positive and that is that they do not do research there and so have more time for us. My MO feels that way and we do get on well for the most part.
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