Canadians in British Columbia
Comments
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NVDobie - your experience sounds scary & it's awful that you were brushed off like that by your MO. That sucks.
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Interesting commentary re MO's! Dr. Chia's name comes up often. NVDobie I do have a question re your comment about head of BC for BCCA. Your comments indicate it is a he but head of BC unless something major has happened, is Dr. Gelmon. Many years ago I wanted her because I had heard much about her and a friend who is an MO elsewhere thought she was the best. I could have had her but would have had to wait 10 days and my aggressive cancer wasn't waiting for 10 days said I and I could not have been happier with who I got. Names not going public but I missed her so much after I was assigned one here in Victoria. I was told by mo RO here that we could not ask for a preference and I was so much in shock I went with it. Having asked for a change last month after my MO in January suggested I was adversarial after I talked about a second opinion and the next month seemed wary of me, I made my way through the system. Yesterday I saw my new MO and I am so happy. If anyone wants names I don't mind but only in private. After almost 6 years BC I feel that I can navigate assertively. NVDobie, I am appalled by your treatment and do think you should document it as is our right.
My VR weeks are not in the same order as yours Wrenn or is it Hugz4u? Obduction is my last week and mindfulness (MBSR) was third week. I called Gordon yesterday to ask for a 2 days break. I had a yoga/hiking group reunion here from Sunday today and 6 women in one house meant no way I could start a new game yesterday! It was wonderful and those of you who know me are not surprised by my energy level to even contemplate such a group but it was great despite my total exhaustion. I am loving quiet tonight.
Love to you all,
Marian
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Marian. How nice to be able to forget cancer for a few moments and have the yoga retreat.
My VR 1st game was obduction and now 2nd is meditation. 3rd will be the pipe connector puzzle. last butterfly one. Sorry can’t remember official names.
Hoping all the spring flowers brighten everyone’s day tomorrow
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not been here in a while Been busy living life Hi Marian nice to see you are active on here I am still doing good Some of you know I was waiting for a new reconstruction due to mine not looking good It was great to start but things changed I will be having a tram flapdone June 20 and hope that will be my last surgery I would wenture to say however it turns out it will be my last surgery as I am getting tired of surgeries
Marion you are an inspiration to us all Thank you
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Hi, everyone
Thanks for everyone’s comments and encouragement!! sorry for the late response, being distracted with fighting off SE last 2 weeks, Swelling is down finally to have my normal face back, still have some itching skin issues
@. I looked him up before I met him so I wasn’t expecting warm and fuzzy. tampering down expectation did help. he often send other doc to see me instead of seeing me himself. I just assumed he was busy being “the head” and all. I was mostly ok till the recent major SE incidents. I was surprised at his comments as I assumed probably shouldn’t have but assumed he would understand I had no experience with chemo SE so panic is normal when my face swelled up and chest pain hits.
I got over it by telling myself to think from his perspective, also learn more about being empathic to others myself given how it felt when I was on the receiving end of less empathic individual.
When I met with one the physicians at Inspire Heath, she assured me that I did what I should by calling the BCCA when new symptoms appearing or worsened given MO on call or GP oncology on call will have more experience than ER, which is precisely the reason I called BCCA. She acknowledged that her colleagues at BCCA are not best in communications. Did not know InspireHealth physician was part of BCCA network.
My MO seems to have good days and bad days so I am trying to think it is an hard job to be an oncologist dealing with many different patients.
Anyway. I am over it now. Moving on to focus on treatments. Will be much more interesting to see how open he is when discussing options of hermone therapy drugs or the length of the treatments. We will see.
Another thing to share is my MO is switching me to a new chemo regime tomorrow, Abraxane? . after he got it approved. said no allergy reaction reported so no longer need for steroids nor the grastofil shots. When I looked up the drug, it has the same side effect as taxol, and often used in treating advance BC which is not my case at the moment. Wondering why the instruction is not taking any counter measure as one would with taxol.
Has anyone had Abraxane? How was the experience if you don’t mind sharing.
Marian
That’s interesting. When I first met Chia, he introduced himself as the head of Breast cancer program in BC, after he said he worked in BCCA for 16 years. @_@
There is also someone who told me I won jackpot when I told her I had Chia, she used to be in the board of Breast Cancer society? and they thought highly of Chia.
I can deal with low empathy as long as there is strong competency and willingness to discuss options.
Moth
Your story and experience with docs are truly amazing of your MO and previously your GP calling multiple specialist offices to get you early appointment.
You got me thinking about moving to Fraser valley. :-)
So far the only kind and empathetic Doc I met so far have been 2nd opinion surgeon Doc davis and Radiation Oncologist Doc Keyes, both ladies have been super kind and easy to talk to and shared their perspectives openly with me. Kind of threw me off actually given how uncommon was to run into a nice talking doc in this journey so far. Haha.
Hope everyone is doing well. Your suppprt means a lot! Thank you.
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How is everyone going in virtual reality study. This is my last week and doing butterflytrek. It makes me dizzy. I might have trouble with this one. Looking forward to the 400 hundred dollars. Donating it to relief disaster work! It feels good to do this for a good cause.
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No one has mentioned any $ to me? How did you hear about this? Butterflies was tricky with motion sickness. Obduction is too far over my head and my pain was/is really bad and the frustration increased the pain. I liked Medtaion guided best and Carpe Lucem second. I am done.
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project manager crystal sun told me in her introduction email. Have fun spending!
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I hated cape Lucem. Basically did the ones I knew over and over but I found a few easy ones that players thumbs up.
Found out the trick to butterfly one is to pull trigger real slow and then not to suddenly turn the track paid fast. It keeps u in a straighter line otherwise you get a spinney dizziness.
5 more days and I’m done. Was interesting but I’d like to be a bit free from being home so much. I think it worked while I was doing it but pain came back as soon as I was done distraction VR
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Blurg! I just wrote an update that disappeared!
Will work on another...
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I just saw it on another site~~Facebook for Canadians with mets. She was vibrant, Wrenn. She came to a Kinder Morgan protest at the Burnaby tank farm with me pre dawn in January. We talked about her 19 year old twin boys and her daughter too. Her treatment sucked and she ad horrible blisters on her feet but had just started Ibrance in April. Fuck cancer.
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Hi all;
Apologies for the delayed update. I got the all clear on Tues May 15th - feels like I just got off a Tilt-A-Whirl. I go from thrilled to nauseous to stunned to overwhelmed, w a few other emotions in that cycle. I had keep everything so compartmentalized for myself and my boys, I think this will take awhile to settle.
I was told my surgery went as well. I asked for an additional lidocaine plus magnesium block (I had read sci papers, outcomes were better w the block for chronic breast pain after surgery). I was pleased the aenesthesiologist immediately said yes. I felt confident in the team working on me, and was calm. I downloaded a surgery guided meditation which helped me. I pictured all my supporters around me, holding the space around the OR table, protecting me and guarding me no matter the outcome. With some effort haha I replaced the fear w love - even from the trees and flowers - and drew on that to keep calm. You all were around me. Hope that's not too smarmy.
I had a skin and nipple sparing Mx w a TE. First night was awful, home the next day happily. Had my drains removed May 15, same day I was given the all clear. I can put my own socks on! Bath! Even drive now. Feeling better, still discomfort but definitely through the tough post op part.
I feel very unsettled - topsy turvey. Had a couple curve balls thrown my way this week - same day I was given all clear I was told my ex mother in law dx w lung cancer, unrelated to her 2 BC, not mets and non smoker. The next day I opened my computer to send out my good news to a friends mother who has supported me - l've always held her in high esteem, always adored her - to see an email that she had passed away two days earlier of lung cancer - inoperable. Not BC mets either (she went 2 rounds), non smoker. She didn't want to tell me, she wanted to support me and save all her energy for her family. Was a blow to my solar plexus, really has taken the wind out of mw. She had been texting and emailing me the week earlier. She only found out a month ago.
She recco'd I join a dragon boat team, which I may do after I'm healed. She also recco'd a support group. She's wasn't a group person - neither am I - but said it settled her somehow. Does anyone know of a BC support group?
I don't feel like jumping back into a full schedule yet. Need some sunshine, walks and nutrition. Trying to hold back the demands, the administrative part of life for a bit longer. Boys are back, so not that quiet around these parts.
Thanks for reading. Deep thanks for coming along side me for the last few months - It would've been so difficult without you all, xo P
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PS: Haven't made contact w an MO yet for what I assume will be Tamox?
Yeah - fuck cancer. I'm sorry it took another vibrant woman from a world that desperately needs them.
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No idea why my surgery date shows as Apr 30th when it was May 1st - checked the info, reads as correct but once I post it changes to Apr 30th?
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Ha! bet you are all sorry I'm back clogging up this thread with my non-working brain! Sry
I think I fixed my dx and surgery info...
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Promise this is my Final attempt
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BlueSky - congrats on a successful surgery! Glad to hear you're recovering well!
Yes, you will get referred to a medical oncologist who will discuss whether chemotherapy is appropriate and your endocrine therapy options. Your MO might want to send your tumor samples for Oncotype testing - that would help determine the risk/benefit of chemo. I think if you don't hear back with an appointment date by Friday I'd be tempted to call them. Once the pathology report is received, they should be booking the MO appt. The Oncotype takes time too & they won't send it before seeing you & getting you to sign the consent forms so the faster this ball is rolling the better.0 -
just wondering if anyone here has had an mri Guided biopsy and is so where? I am in Alberta but thought I might check out where they are available. Thanks!
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Hi Bennybear - I'm new to all of this: how the system works, the order, the language. I'm sorry I can't be helpful. These ladies will give you every bit of info they have though, I'm sure of it.
Question for the thread: If my nodes were neg, am I still be considered for chemo? I invented that I wouldn't be...
I followed up on my MO appt today, no news back. Thanks for the prompt.
Hope everyone is enjoying the beautiful evening, perfect temps for me.
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"Question for the thread: If my nodes were neg, am I still be considered for chemo? I invented that I wouldn't be..."
I was node neg & am doing chemo. In the link below the BC Cancer Agency breast cancer management guidelines talk about when to consider chemo. Generally, the younger you are, & the more aggressive the type of cancer, the more likely they might recommend it. I was 50 at diagnosis & even before getting the Oncotype my MO wanted to recommend a light chemo; when we got the Oncotype back, she recommended heavy duty chemo.
Pretty sure you'll be a candidate for Oncotype DX testing (which means sending a sample of your tumor to California) which will give you a recurrence score. One of the qualifying criteria is "Grade 2 cancers and T1b or larger" (T1b is greater than 5 mm and less than or equal to 10 mm)http://www.bccancer.bc.ca/health-professionals/cli...
(scroll to section #3 to read about chemotherapy & the Oncotype requirements). Oncotype will give you a score indicating your risk of recurrence. If you score low, you get to skip chemo because the risk of it outweighs the benefit. Higher scores mean chemo might be helpful.
Oh - btw, in that BC Agency section on chemo they link to a website called Adjuvant Online which is an online calculator to assess how much chemo affect life expectancy but that website is offline now. If you want to try to run a calculator yourself, try Predict http://www.predict.nhs.uk/predict_v2.0.htmlor LifeMath http://www.lifemath.net/cancer/breastcancer/therap...
One other consideration is how strongly hormone receptor positive you are. The more positive, the more tamox or AI will help prevent recurrence & that might be a sufficient enough treatment plan.
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Bluesky. Nice to hear your back in the real world. Yah cancer diagnosis, surgery etc can really shake up your box. Sounds like you had a good success.
Wrenn,I didn’t know Wendy but as you say I’m sure she was a good person. They say cancer hits the caregiver personality as we never take care of ourselves but do everything for everyone else. I think that’s true
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Hi ladies;
Have an appt June 13 w Dr Chia. I'm a bit concerned. I feel like he's going to dismiss me - and I haven't even met him yet
Any advice? Should I rely on his recommendations? What about ovary removal? Is he the Dr to make that recco? Will my oncotype info be available by then?
Thank you all, wish I could send you all flowers for all your support...
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BlueSky, did you sign the consent slips for the Oncotype test yet? I was surprised when I first saw my MO because I expected to have Oncotype results already (my breast surgeon had mentioned several times that Oncotype would be done) but it turned out she first had to discuss it with me & get me to sign consent slips for the tissue to be sent out of Canada etc etc. So my first MO appointment was kind of anti climactic.
From the time I signed consent & they actually sent it, to the time I had the consult where we discussed the results was 2 weeks & 2 days.0 -
Bluesky. Don't go in negative with chia he might be a different bag of cats with you. Each patient has different vibes that make a difference. If it makes you feel better. I asked surgeon drDavis if she had to go to a mo who would she pick. She said definately chia. Don't know if she was trying to make me feel sure of my treatment plan or notso you will have to take this recommendation with a grain of salt.
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Walden1: in reply to your question 16/04: "I'm also scheduled for a mastectomy for a cancer that includes DCIS and IDC. Do you mind sharing what prompted the surgeon to do a mastectomy after your lumpectomy? Hope you are recovering well ".
First: yes, thanks, I am recovering well. I feel like I have gone through a dark tunnel and come out the other side! Was just healing up from the first surgery on March 20 (the lymph node dissection was the worst part) and then had the second one April 10 (and wouldn't you know it, surgeon "decided to take out one more little lymph node" under the arm...) But it's six weeks later, and I am starting to feel "normal" again - the crushing fatigue has gone, though I still nap more than I ever did in my life! I am slowly catching up on all the housework and chores and overflowing "to-do" basket, and rescuing my garden from the weeds. Enrolled in a therapeutic yoga class that has helped a great deal with recovering full use of the right arm and shoulder, and learning to relax and accept things as they are. I find the yoga breathing and body awareness particularly helpful in falling asleep.
From the beginning, the surgeon was torn between breast-conserving surgery and a full mastectomy. The tumour was close to the nipple, and he worried about DCIS. Although he knew how much I hoped to preserve the breast and nipple, he made it clear that it would be his call, depending on what he found. I was fine with that. In the end things looked good and he went ahead with the BCS, also removed four lymph nodes - they were clear, but tissue tests showed DCIS. He therefore felt it was in my best interest to remove the entire breast.
In retrospect, he says he should have just gone ahead with the mastectomy in the first place, but "we hate to disfigure a woman if we don't have to". Certainly from a psychological point of view it might have been better, because I had to mourn the loss of a breast TWICE!
Ah well, the next big challenge is hormonal therapy. I am two weeks into tamoxifen. Fun!0 -
hi ladies been awhile Hope you are all doing great Marian I see you on Facebook and admire your strength and determination I am having my re-reconstruction on June 20 After much back and forth I have opted for lattissimus dori Doen anyone remember who is in charge of the photo forum I know you have to have permission to enter, but I can not remember the link
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Bluesky
Chia is my MO. Might not be the most empathetic person but do seem competent, which is more important if we have to choose one. He does have a few residents etc working with him. Some of folks I talked to consider him a very good MO. Told me I hit jack pot having him as my mo.
He was patient when I had a load of questions first time, after 1st time, you mostly will see his resident colleagues and him briefly at the end of the appointment.
I suggest you prep yourself with things you want to know, then ask him or his team.
Another thing help me is to get the records from BC cancer which includes doc’s notes. So I go back to his notes whenever I don’t recall all of our discussions etc. it helps to clear understand whatMO and other doc have taken away and decided at our appointments.
We will be here with you and we can exchange notes too. First consult should be the most lengthy and 100% Chia, so do your homework on questions, as I barely see him much after my 1 st consult. If I had known, I would had even more questions for him
Good luck.
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NVDobie, how are you getting your records & MO consult notes? Did you have to fill out the official forms to get access or are the clerks just giving you copies?
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wrenn, thanks. I'm at Fraser Valley... I'll have to figure out how to get the records there.
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No worries wrenn! Like you say, odds are the systems are very similar at all the centers. I'll ask when I'm there this week.
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