Canadians in British Columbia
Comments
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cdnchick.... hugs honey... will be in your pockets.
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cdnchick, is this the other breast? I hope you can get this done pronto so you will not have to be kept wondering and then of course we all hope for it to be nothing or benign. We are here as Tazzy says.
Marian0 -
yes, it's in the other breast. The words 'pleomorphic calcifications' are on the report and the more i research the scarier it's getting. F***
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Cdnchick, Hoping that it's nothing or B9. Dr Google is not your friend here. Ask me how I know?? I've done the same thing, looking up stuff & it turned me into a freaking nightmare for no good reason. Please let us know how you're doing. GG
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Sorry you are stressed, CdnChick - take a deep breath, and remember there's lots of support here if you need it. Sending calming vibes your way.
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Thanks for the support ladies. Am trying to stop searching the internet. Just waiting now for a biopsy appt and will try to stay calm until after that. It's damn hard to stay calm. Just a little frustrated and scared since I haven't even fully recovered from 1st round. Have to get a referral again just to talk to the breast surgeon. Managed to talk to my oncologist but am not feeling optomistic after our little chat. I thought that chemo would kill everything off but she told me that if its DCIS, it would be treated with surgery and radiation but not chemo. So, no, chemo would not have killed that type of cancer. I just didn't think anything would develop in the other breast if I was going through chemo already (there were no calcifications or concerns in last years mammo or MRI). I thought that was the whole point of chemo. To kill all cancer cells and to keep it from spreading. Why don't they tell you that?!? It just feels like they tell you what you want to hear and not the whole story of what could happen. Arrgh ... thanks for letting me vent.
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CdnChick - that is so darned scary!! What is the point of chemo really? Does anyone know? Your situation really makes me wonder about the whole cancer treatment regime. A friend of mine believes cancer treatment is an industry and the only ones who benefit are the pharmaceutical companies - she has a point. However, she hasn't been diagnosed with cancer - she might change her mind if she were - we all want to live and will do what we have to do. So sorry that you have to face this again so soon - my heart goes out to you.
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hi Ladies, I'm new in this thread. I wanted to get some feedback on your Vancouver oncologist experiences. I am a patient of the much respected and highly recommended Dr Gelmon. The couple of times I've been to see her, I've had to wait 90 minutes before she gets to me. She's rushed, she talks really fast, rambles off statistics and studies and I can barely get a question in. There is no 'conversation' that happens. I have found her style to be a bit condescending and she implied the integrative care I'm getting from other doctors as unethical and incompetent. She doesn't seem that open, and I find her cold and clinical. It's not that I doubt so much the treatment plan she wants me to take, but I find the whole process of seeing her stressful and makes me doubt myself. I'm the kind of patient that wants to be involved in my care, and not just take orders blindly.
So I guess my question is for the British Columbia BC Ladies is: can you recommend an oncologist that doesn't make you wait forever, listens to you, and doesn't condescend even if he/she disagrees with your thought process? Are they kind and caring and exhibit even a small amount of patience? If so, please share names. Going forward I need an oncologist I feel good about.
Best wishes and happy thoughts to you all.
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bamboogirl, first off welcome and second, wow! I do not have Karen Gelmon though I did want her and would have chosen her if I could have~~I would have had to wait an extra 10 days and at the time it seemed like there was no time to waste. Not sure what I would do if I had to do it over but I suspect from what you say that it is hard to actually find an MO or RO for that matter, who has extra time and willingness to really engage. I like my MO (Tamara Shenkier) and I am like you, in needing to really be involved in my care. I want to know as much as possible, even the stats as in Adjuvent online and even then, when I finally got a hard copy, it was not really explained and in fact she wrote an addition that I think says that being ER and PR strongly positive and taking AI's gives me an extra % of good but it was just handed over. Today I picked up the latest "release of information" stuff from the 4th floor and she did mention my asking for the stats and commented on it. I was thinking about it as I headed to rads today while reading it and again considered what my options might have been earlier and I just think it is hard to be proactive, learn as much as possible all along the way and get the time and info from our doctors. Also in retrospect I think I came across to my MO as being strong or even tough and so maybe was not as actually assertive as I might have been about wanting more time and discussion as we went through this process. As for my RO, I found him somewhat condescending from the beginning when I first saw him in December and then had one phone call in April and now I see him weekly through radiation. I saw him yesteday and have not revised my opinion but I know in reality that my "plan" would remain the same no matter who I saw. In general I feel that BCCA does a great job and it just that some of us want and need more from very busy doctors. I hear that Dr. Weir is a wonderful RO should you need one down the road and I wish I had asked for her in the beginning!
I am thankful for the Mindfulness Course I am taking right now at BCCA and if you are interested I would suggest getting on the waitlist for the future. It has been really helpful so far.
I take it that you either have a recurrence or new BC? Were you at patient at BCCA in 2010? No nodes must have been a plus!
Again, welcome and I hope you can find some decent common ground with Karen Gelmon. I think that her many roles makes it so she is even busier than the rest but she really does know her stuff from what I hear from many sources.
Marian0 -
Hi Bamboogirl, welcome to this thread. I too had Dr. Tamara Shenkier and I really like her. My husband was very passive aggressive at our appointments. He wanted me to try a more holistic route than what BCCA was recommending and had all sorts of questions and suggestions and she handled to whole situation very diplomatically. She had answers for all of our questions and she didn't disregard the complementary supplements that I was taking. If she had any concerns about the supplements she supplied why it would not be a good idea. Any time that we had emailed her she'd respond. Through it all she made sure that my questions were answered. She has a good sense of humor too. I did have to wait at quite a few of my appts but I think all the MO's do. My friend and quite a few of her friends have/had Dr Gelmon and was a good fit for them but it'd different for everyone. Hopefully this helps.
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CdnChick any word on results from your biopsy? Have been thinking of you!
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CdnChick - So sorry to hear you are going through the big wait again. akmom said it best, take a deep breath. And don't forget to let it all out. Here for you, whatever you need amd hoping that it's nothing in the end.
bamboogirl - I actually have Dr. Gelmon and feel lucky to be with her. She's been empathetic and compassionate the whole way through. We spoke of alternative/complementary treatments a couple of times and while she wasn't supportive of them (and gave me valid reasons, as well as anecdotal, why not) she did acknowledge that everything was my decision. Same goes for the chemo - we reviewed about 5 different protocols, discussing the pros and cons of each, but she left the final decision with me. I feel like I'm a particularly difficult patient because I like to call the shots and because I work in research (both healthcare and elite athletes) I generally have literature at my fingertips to reference when speaking with her. She never once made me feel like my thinking was off or that I was being difficult. Mind you, I'm the type of patient who likes to hear about stats and well run studies we probably clicked because of that. If you're looking for an oncologist who will support high dose Vit C or other treatments not offered through the BCCA I'm really not sure you'll find him/her. I'm all for looking at alternatives (I researched a couple for myself), but the fact is that the BCCA will not endorse a treatment that doesn't have the clinical evidence backing it. I have a friend who is complementing her chemo with 2 other treatments offered at a clinic in Langley and I know that her oncologist is not at all supportive of it... but it's her life so she's calling the shots and I don't think she feels her treatment through the BCCA is any less because she's going against the grain. Similarly, I don't really like my RO. But I'm confident that even if I got an RO I liked the treatment recommended to me would have been the same so I don't really care anymore if I don't want to give this guy a hug when it's all over, whereas I did with Gelmon. Did I mention that she broke protocol by letting me go on a yoga/ski retreat even though my RBC's had dropped so low that I should have been in the hospital getting a blood transfusion? She said, "There'll be no cancer in the sky there [Rossland]. I think the change in scenery will do more good for you than a blood transfusion." She was right and I was so grateful she was my MO that day because I don't think others would have gone that rather un-clinical route. As for her running behind, I wouldn't hold that against her. Based on my own experience with her, I know she will spend more time with patients than the booking clerk has alloted for when the patient needs it. I would request a morning appointment next time, so that YOU are the patient who puts her behind schedule
And be sure to write your quesions/concerns on that survey thing they give you in the clinic room when you're waiting for the doctor. I never let her leave until we had discussed each and every one of my queries. And, yes, she was very rushed with me once but because she was overbooked and running on empty. My remaining queries weren't pressing so I just added them to the list for the next visit but I sure as heck would have spoken up if I needed answers then. Despite this rushed appointment, my overall experience with her was very positive. I hope it all comes together for you, whether it be you find another oncologist you click with or your experience with Gelmon improves. I would seriously consider first requesting a morning appointment and let her know when you're not getting all your questions answered. [EDIT] - In the rambling above, I forgot to bring it all together. Bamboogirl - I just meant to demonstrate that Gelmon is a caring MO. It may be that she hasn't proven this to you because she's been rushed when she's seen you or perhaps the two of you just don't click. I'm hoping it's the former and earlier appointment in the day will provide you with that caring MO you deserve. And if it's the latter and you can't find another MO you click with, I think you'll get top notch care, nonetheless. Fingers crossed, though, that you get the best of both because I do appreciate how much better the experience is when you're with somebody you are confident and comfortable with.
As for me, I finally broke down and started on a sleeping pill protocol. I've gone months without getting more than a couple of hours sleep each night (with a few glorious exceptions) and I just couldn't take it anymore. I'm not at all a fan of popping pills, but if it can help me get back on track then I guess I'll support the pharmaceutical industry on this one. I'm supposed to stay on them for 2 weeks before I try to do things on my own again. I know there are things I can change around me to help with my sleep so I'm hoping the added energy these pill-enhanced weeks gives me the strength to do so.
Hope you're all hanging in there and enjoying a few moments of every day.
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Thanks CdnChick, Sneaky and Mariane for your thoughtful replies, helps me put things in perspective a bit. And great advice on getting a morning appointment.
I'm a big believer in alternative health and therapies, I have always been. I was a patient at Inspire Health in 2010 and perhaps they influenced me to step back and consider the statistics carefully before choosing any treatment. I'm on an array of supplements, have a special diet and see a couple of integrative health doctors as part of my health regimen. But just one visit to the MO really has me doubting my own intelligence and hard work that I put into making myself better on a lot of levels (not just cancer related issues). I can see your point about the BCCA not endorsing a treatment that hasn't been clinically proven, so I should adjust my expectations for them.
My GP and SO make me feel seen and heard, like a real human being (and they are both busy people). I just feel like I'm in on an assembly line when I go to see Gelmon. I never leave feeling good or positive. Perhaps that's just the way it is with BCCA. It's a serious place.
Mariane, thanks for recommending the mindfulness group! I do meditation on my own, have been a Vipassana practitioner for a number of years. Lately (just had a BMX 2 weeks ago) I've been doing a lot of medical self hypnosis, and also EFT which helped me get through the surgery without any anxiety or fear. I love the stuff.
Best to you all !
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I knew Sneaky would weigh in about Gelmon! She also reminded me about the Mindfulness group~~she told me about it months ago and then again when they had forgotten about calling me. As for Vipassana, I have yet to do a retreat but a time may just come along. I saw a retreat in Washington today when I was looking at what was recommeded at the back of the MCBT "lesson" book we were given for our sessions.
BCCA is a serious place though funnily enough I liked the chemo rooms/nurses when I was up there. I also like my PS and no dobut it is because he is not BCCA and has a lot more fun in his job. My BS is pretty serious for that matter too, so good thing PS is more fun.
My husband only came to a couple of appts. with me to see my MO Dr. Shenkier. And Cdnchick, don't get me wrong (I just had a deja vu moment right now on what I think was a discussion point on MO's awhile back) I do like her and respect her too but unlike Sneaky I think many times I should have stood my ground for more time for discussion. A real mistake I think was that after I saw her every two weeks for 4 months during chemo, I did not see her for 2 months at all while I waited for and had surgery. I kind of went downhill during that time and had I see her sooner and discussed how I felt I think it would have been easier on me.
OK, off in the sun to yoga.
Marian0 -
Marian - I'm still waiting for a biopsy appt. I talked to my nurse navigator at the rapid access breast clinic and they're going to arrange my appts but the wait time is 2-4 weeks at BCCA. Hopefully the wait time will be less at Womens so all I can do at this point is wait. My son has a baseball tournament this weekend in Kelowna so at least I have a distraction.
Take care ladies. Hope you are all doing as well as can be. Have a good weekend.0 -
If they give you core biopsy ask for the best freezing that they can do. They only wiped topical freezing on me and I think there are better methods to be more comfy.
Cher, what product name are you using?
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Cdnchick, is your nurse navigator Imelda? BS also there?
Have a great weekend away! Maybe you will see Tazzy as she lives near Kelowna.
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CdnChick.... are you going back Sunday? We are taking the outlaws camping all weekend and are out at friends for supper on Sunday afternoon/evening? I am in Westbank. Anyway let me know.
Sorry not responded to all - getting ready for weekend and been in HR education sessions for past 2 days. Busy, busy, busy.... but I guess that means that life is getting back to normal.
Bamboogirl - welcome - greatest bunch of ladies you would wish to meet under crappy circumstances.
xxxxx
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I too feel like I'm on an assembly line with my MO. I have Dr Lohrisch and I don't have any bad feelings about her, but I don't have any warm ones either. Perhaps it's the way she says she'll do this and this and be back, and then someone else comes in and finishes up the appointment instead. I feel like she has more important things to be doing. I've learned to write my questions or SE's etc down because she doesn't invite conversation, and otherwise I would just forget. I think it's the system and culture that create this feeling.
On the other hand, my GP calls every couple of weeks, on her own time in the evening, to check in and see how I'm doing. That helps a lot.
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I have Imelda too but she's on holidays right now so I'm dealing with Rebecca & Allison.
Tazzy - have fun on your camping trip. Drove thru Westbank yesterday and its beautiful here. How can you not love the Okanagan? The tournament is done on Sunday.0 -
CdnChick - what a shame - another time. Yes it is beautiful here - I especially love where I live.
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hi Shipsgirl, thanks for your feedback. So I'm not alone in my feeling. I'm glad you at least have a caring GP.
Marian, last year I did a 10-day silent vipassana retreat at Hollyhock on Cortes Island with Michelle Macdonald... it was sooooo wonderful. It's hard to explain, but the more silent you become on retreat the richer your inner experience is. I'm eager to do another one. Westcoastdharma hosts non residential weekend retreats at the Asian Centre at UBC on a regular basis. It's a really nice way to dip your toes in the water! Some great teachers pass through Vancouver.
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Thanks bamboogirl, I may just follow this up.
Cdnchick, Imelda is mine too and I can't recall whether I know Allison. When I got my dx last summer, another navigator was there one day and I really liked her. I know it is cultural with Imelda but one of these days when she calls me dear, honey, sweetie etc. I am going to speak up. I find it patronizing and as an old nurse just can't get a good feeling when she and I connect. However, I really like Rebecca and to be honest it is not exactly as though there is always much navigating although maybe it is different for you. Carol Dingee is my BS and I think she is excellent.
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What is a nurse navigator? I dont' think I have one of those. lol
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Funny how we all have different Doc opionions, I really wanted Karen G. and I fired Carol Dingee because she wouldn't consider my suggestions. I heard she is a really good BS though. Her waiting room was always stuffed full.
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Marian - I know what you mean about the 'dear' thing. Rubs me the wrong way too.
Shipsgirl - nurse navigator was your contact person who arranged appts for you at rapid access breast clinic at Mt St Joseph.
Hugz - you are so right about the different opinions about docs. I didn't click with Dr Dingee and went with a different BS. I too heard that she was good but it wasn't the right fit for me.0 -
Copied and pasted from the other site
Hi Ladies.. Been MIA for a while, needed a break from C missed you ladies though Welcome newbes Sorry you have to join us, but glad you did. Have been away for a few days. Did a weekend trip with DH going down to Seattle then east through Stevens pass and back up through Osooyos then home, beautilful drive. Then left Tuesday with a GF for retail thereapy in Seattle and the outlet mall..Stayed in Seattle for two night then came up to Burlington/Mt.Vernon.. And yes we were there when the bridge (I-5) collapsed. Our hotel were about two hundred meters from bridge, Pretty scarry, but the emergency personell was amazing. The responce time was incredible. Very organized, just amazing to watch. So glad everyone were saved. Only two cars went in to river which in it self is amazing as this is a heavy traveled freeway. Today we are going to DIL's bday Her and her sister is celebrating together we are all dressing up like a royal teaparty just for fun. DIL's family does a lot of theme parties. This is new to our family, but so much fun.. Must go need to go grocery shopping =( taata ladies
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When I had my lumpectomy last September, one of the nurses in the OR called me "dear" and I did speak up and say "no dears please." That silenced the OR for a moment! As for Carol Dingee I don't think her bed side manner will win her any awards but she has done great work on me in my two surgeries and that is what counts for me. I also got a "reference" from a friend who not only has had breast cancer (had Dr. Kuusk) but was a nurse at BCCA for 20 years.
Hugs4U, did you end up with Karen Gelmon? I can see where Dingee would not countenance suggestions readily. She wanted me to wear a compression sleeve all day until bedtime every day for 3 months post mx. I disagreed but just kind of let the conversation go and have worn it maybe 5 times and now coming up to 3 month mark when I see her for the final time. I am careful re L/E but did not see where wearing the sleeve would let me know if I got L/E and in fact with my level of walking and yoga, plus weekly P/T, I feel that I have go the lymphatic channels working.
Sneaky, I had a look at the book and there is not much other than if one has soft bones, it is possible to get asymptomatic rib fractures but you are not asymptomatic! Also there is costochondritis but it is later it seeems. It is a kind of arthritis that causes inflammation of the space between the breasts where the ribs and breastbone conect.
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CdnChick thanks. I don't think I had one. lol
I had Dr Kuusk as my surgeon. My gp just took charge and sent me straight to her; said she was the best. She did a fabulous job on my lumpectomy.
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I had Dr Kuusk for my lumpectomy and mastectomy. I love her. I can't put my finger on it, but something about her personality engenders complete confidence and trust. She's not touchy-feely or coddling, she's quite 'matter of fact'. She's also validating and non-authoritative despite her incredible knowledge, experience and talent. Perhaps that's what I want in my MO as well. I hear that from everyone who speaks of her. Wonderful woman.
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