Canadians in British Columbia
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Hi Pots,
Thanks!
I asked counselor, there is no patient support group, and patient activities only in bc cancer agency. However, by joining the patient activities, I will have chances to meet with other patients.
I asked the drug expense, she said there will be some discount provided by manufacturer based on family income, but not woman's income!
Hopefully I can spend through chemo peacefully, 2 weeks 8 rounds, can I cry??!!
Tomorrow morning I will see radiologist, will do that after chemo, will frequently go to 600 building.
I got the biggest combo, surgery, chemo, radiation and hormone!
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Thanks wrenn!
This is a great resource, I am thinking to join their information session to find more. But I am in richmond, transportation is a bit harder, or parking is an issue.
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Ladies,
I just back from 600 building, that is my first meet with radiologist.
I posted before that I requested oncotype myself since I only have MSP and MSP does not fund this test. Today, I went for my first meet with radiologist, and I will see MO again this Wednesday for my oncotype score. To my surprise, the radiologist said, based on my score, they think the MO won't recommend chemo for me, so they just plan my radiation based on this. They plan 20 radiation for me, and supposed to start in two or three weeks. If I will do chemo after discussion with MO this Wednesday, I shall call them to let them re-schedule my treatment plan, of course MO office will also notify them.
So now comes the question, to which score (they do mention I am low risk) and to which percentage of chemo benefit, MO won't recommend chemo? I hate they don't tell me the score right there, I called MO office around ten days ago, they already got the score but just cannot tell me, and no way to have an earlier appointment.
By the way, my friend and I are really impressed with the friendly environment of BC Cancer Agency. Staffs there even wear their normal clothing, so nice and patient to me. I feel lots of relax!
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Does anyone know what the protocol is for follow up mammograms after a diagnosis and treatment? I ALWAYS have my mamms in September but this year got no call. Early Oct I called the booking dept and asked what the deal was. Oh, your doc didn't request one so you're not on the list. They told me to phone my doc and tell him to request a diagnostic mamm and put a rush on it. I did this. In the first week of Oct. It is now November and NO CALL!
Today I called again (this is the third time I have called the booking dept) and she said to expect a call, not an appointment but a call, late December or early January.
What the actual fuck!
How is it that my oncologist books my next appointment a year in advance but the damn cancer agency forgets I exist if they are not constantly reminded and prodded? Is it really up to my doctor to annually request a diagnostic mammogram? Should this not be an automatic thing considering I had cancer in 2017? More than once on this roller coaster of horror I have fallen through a crack that I have to get myself out of, dealing with disinterested staff and receptionists.
I told my doc's receptionist, who I dislike and does a very poor job of being his representative, to tell him to put a RUSH on it. I said this because that is what the booking department told me to say. I am pretty sure that Office Cow edited my request and left out the RUSH part. If RUSH means to wait 3 or 4 months for an appointment.
You know, I try to put this whole bullshit event behind me. I try to get on with life as if everything is normal. I try to not let everyone know that this gnaws at me and and has introduced a level of sorrow to my life that I never had before and will never be rid of. I get tense when mamm time gets close. I started getting tense i August in anticipation of my Sept mamm. I am now nearly insane with tension. (takes very little to push me into insanity, I hover on the brink most of the time). Seriously. I think this is bullshit.
I have called the cancer agency and am once again awaiting a return call. I need to UNDERSTAND who fucked up. Because someone did. I keep trying to fix it but am getting nowhere.
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Ugh....yup we are indeed our own advocates. Yes it is up to the MO to request them. The frequency may also change as you get further out from diagnosis so confirm the frequency with the MO.
Heck I had joggle the MO to get a CT scan last May, she wanted to go to a 6 month schedule since I had been stable for the previous two...umm, nope not when you have Mets plus I felt that something was brewing. I was right, I had a progression.
So try take a deep breath runor, you have no evidence to say you have a progression unless your body is telling you otherwise. Yes the fear and anxiety is real and can take over our thoughts.... we all get tied into knots waiting for the unknown.
Be well,
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Ladies in Vancouver,
I have another question. I will have 20 sessions of radiation. I created a thread to ask around how many sessions others have, sounds everybody has 20+, I am not sure if my radiation is too light? Or does it depend on the machine?
I know I worry too much stuff, but how can I spend the days not thinking of this?
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cathy67: sorry, I have been remiss about the boards. Yes, my wig was expensive but it is part human hair., lace front, look very real. My extended health only covered about $200.00. I have starting wearing it now that the weather is cooler. Keeps my still nearly bald head warm!
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cathy67 I know it's hard to stop over thinking stuff when you don't know exactly what will happen. There are a number of variables that have to get factored into the number of treatments....your RO will explain them if you ask. Things like the type of tumour, size, stage, number of nodes, location, and others that we may not think of. What I got for rads May not be what you get so don't compare yourself to others. When do you start radiation? Are you able to come to the lunch on Nov 23, it would be great to meet you!
Elderberry.... I am chuckling about your wig being nice and warm now that the weather has turned cold. Now is probably the only time of the year that it’s comfortable.
I have a table at the pottery sale this Saturday Nov 9 at Douglas Park Community Center in Vancouver 10-2. I’m shamelessly promoting this sale b/c 18 months ago I wouldn’t have thought it would be possible..and here I am. This pottery reflects a lot of who I have become and what I valueas I navigate living with Mets. Feel free to come by and say hi.
Be well,
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Hi Pots,
I will meet MO tomorrow to settle down chemo, if I opt no, then radiation will start two or three weeks from now.
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runor - Yup, as far as I know, the imaging place will not book it without an order so each time the doctor has to send it in.
are you still under the care of the MO /cancer agency? I got discharged back to my family doctor and she's in charge of ordering my diagnostic mammos & any other follow up. If she has any concerns, she's to request the MO /cancer agency involvement back again asap but otherwise she'll take care of it all. I'm supposed to see her in person every 6 months for a physical exam as well.generally speaking - as a student nurse & seeing things from the other side - I'd say the patients have to keep an eye on the calendar. I think for all of us it might be a good idea to find out from the booking clerk at the facility you go to how far in advance they book diagnostic mammos (I think they're not all the same - some might book 6 mos in advance, some only 3). Once you know how far in advance they book, make sure to either see or call your doctor that far ahead of when you should be getting it, and remind them to send the requisition.
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Hi,
I just got my oncotype score, it is 6 with 11% as 9 year recurrence rate with AI only, so no chemo!
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Moth, you are correct. That seems crazy to me. Automatic call backs should be generated somewhere in a system and not dependent on a doctor remembering to request an annual mammogram. It's too easily lost in the paper shuffle.
I was going to get all in a flap over waiting anotehr three months or so to get a mamm but as someone else said, if the cancer is back, i'ts not like getting a mamm NOW is going to change anything. So I wait.
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congrats cathy, that's very good news!
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BCCA guidelines for follow up care and surveillance include a physical exam by your PCP every 6mo for 5 years and annually thereafter, plus an annual diagnostic mammogram. I lived in Toronto when I received my tx in 2015. In Ontario MOs conduct patient follow up annually for 5 years, after which you are discharged back to your PCP. BC's healthcare system is overburdened, just like Ontario's. My exposure to BC's healthcaresystem has been primarily as an advocate for my father-in-law, since moving here a couple of years ago. Both systems are overburdened, but I do believe it is possible to receive truly excellent care, provided you advocate for yourself or have someone else do so on your behalf. Should that be necessary? No, but that's the reality.
Diagnostic mammos need a requisition to identify the areas of concern, including new issues, if there any. runor, if you don't trust your doc's admin to follow through in a timely manner when you request the requisition, you may want to consider booking your follow up appt with your doc, requesting the diagnostic mammo at your appt and then following up after your mammogram for the results. Sure, she'll say no communication means no issues, so don't call, but patients fall through the cracks often enough. Book a follow up appt if necessary for the results for peace of mind, if she won't give you the results over the phone. Ideally you could phone and request the mammo x weeks/months before your appt and get the results at your 6 month appt, but that requires an efficient and helpful admin/receptionist.
BCCA guideline info:
http://www.bccancer.bc.ca/books/breast/follow-up/detecting-recurrences
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Thank you Downdog. Oddly, after having been told I would not receive a call for an appointment until late December or early January (that was for the call, NOT the appointment, which would be later!) I got a call TODAY for a mammogram in 2 weeks. Hmm...maybe it does pay to phone the BC Cancer Agency?I will never know for sure.
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Great news, runor! Unfortunately, it's just a job for many people in the system and they lack empathy for the stress and mental anguish caused by waiting. It sounds like a combination of events - your doctor slipped up and the Rush requisition was finally received or potentially even tracked down if it had been misplaced within the BCCA, you followed up and hence the call. Best wishes for uneventful results.
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Pots: I will apologize publicly for not coming by and seeing you.Shame on me. I got hung up on my own crafty stuff. I am repurposing a completely bashed up, trashed circa 1940's, made in England cardboard suitcase I found at one of those "treasures" places. It is small and my DH said it reminded him of the one he had when he started at boarding school as a little boy. I hope the craft sale went well and you made some sales.
runor: it always pays to raise a little Hell.
Cathy67: good news on no chemo!
Keep on truckin' Ladies!
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Thanks Jean, no apologies needed. Because my work is so different, I spent quite a bit of time talking about what inspires me and how it is reflected in my work. A few people observed that I am a ceramic artist now and not just a potter. My work doesn’t look like anyone else’s and I certainly feel that I am getting more comfortable with this new me. This past year and especially post Taxol I have moved into a very different headspace and making. It’s kind of ironic that after trying valiantly to live a “normal” life after my 2013 diagnosis, it is only now (21/2 years in with Mets) that I am actually living more fully, I’m more authentic to who I am and what matters to me, and being more present. Sigh
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Pots: Be authentic! Be a ceramic artist. As a cocktail napkin I once had said "Be yourself. Everyone else is taken"
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hi ladies in B.C., I was wondering if you can help me? I have stage 4 bc extensive Mets to bones and little bit to liver. I’m 38 and mom of 2 boys (6 and 1). I’ve been on gemzar/taxol and it has worked well for me so far. I’ve been diagnosed for almost a year now and I feel it’s time to change oncologist. He has terrible bed side manners and has zero plans for me in regards to treatment after taxol.I’ve only had ct scans every 3 months no bone scan no PET scan. Do you have any recommendations for a good breast cancer oncologist? I heard Dr Gelmon is retiring soon. Thanks!!
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Mk1118,
I am sorry to hear that, actually I am also thinking of this. We Canadian, under government insurance, actually no option for second opinion. I am in richmond BC, my family doctor said, only two MOs in our city, and they two work together, backup each other. My MO is good, and I am already released into local hospital's cancer clinic, he said won't see him till three months later. I am not sure if same situation in Vancouver, hopefully you can get a good MO and easy to have appointment.
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Elderberry, thanks!
The greatest encouragement is always from patients or their family members.
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wrenn,
I know we can change our MO, but at the same time, we cannot see two MOs for different opinions. I use oncotype test as second opinion for chemo decision, and fortunately my RO gave me his opinion based on the score, so I got two Dr's opinions.
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thank you wrenn and Cathy, I think we have the same MO wrenn, initial SC as well. Sigh! I know about Callanish. But having 2 little ones and this illness is a full time job I just don’t have time to go to any of their meetings plus traffic is not on my side as I live in west van, the bridge can be trick
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Mk1118,
Before my first appointment at BC cancer agency, I went for appointment with counselor, cause I already felt pressure from cancer treatment, thanks God my daughter is already 14 years, so she can take bus for her daily activities, and I have friend to help if she needs ride in the evening.
I told counselor some hardships I met, fortunately husband and daughter so far so good. Counselor said, cancer treatment is no. 1 for us, put our other roles aside, mum, wife, daughter,... but be patient at first. If you do think that MO is good, you shall go, and you can hire someone or find someone to help care your two kids.
My MO is so far so good, but hard to meet, it takes more than two weeks to see MO after getting oncotype score, and front desk cannot tell me score in the phone, and my RO also said, he can not tell me the score, but he said his opinion, thanks my RO, he did what he can in this system.
Best wishes to you! Take care yourself. We always care other family members, but we also have the need to be cared.
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Hi mk1118, getting a Mets diagnosis is tough on so many fronts. Good for you for reaching out! How many Taxol have you had, how often?
Not knowing your MO, my hunch is that he is waiting to see what the Taxol does...he may not know what is next yet. I finished Taxol and was NEAD but from one visit to the next after finishing Taxol, the strategy for my next drug changed. CT scan may very well tell him what he needs to know right now....every 3months is standard. I've lived with Mets for over 2 years and in 2 provinces....you always have the option of requesting a new MO but new may not mean better. I’ve had a patronizing dismissive MO and also an empathetic MO, what I value the most is 1)whether they know their stuff and 2) listen...how nice they are is less important to me, just makes the visit easier. My Ottawa MO was direct, plain speaking and sometimes abrupt but she knew her stuff, I respected her judgement. My first MO in Vancouver, not so much. Elderberry sees an MO in North Van that she likes....hopefully she sees this post and can weigh in.
In the meantime, know that we care and are here. You aren’t alone.
Ann
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hi Pots (Ann), thanks for your post. Since March i did 9 cycles of taxol along with 18 cycles of gemzar. Now I’m just doing gemzar weekly. The scans so far have shown more and more shrinkage and I’ll be getting the latest scan results soon so we will see. MO did say he wants to see my scan results and then determine what to do next but he gives me a different treatment plan every time I ask this question so it just confuses me. I’ve been with him for a year now and I just don’t trust him. He doesn’t seem like someone who genuinely cares.
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FYI, Dr Simmons is on sabbatical until February.
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Hi ladies,
I went to BC Cancer Agency radiation department for therapy setup yesterday, and they game three pages information. For the moisturizer, they recommend water-based product, which means the first item in the ingredient list is water. I checked my moisturizers, all of them start from aqua in the ingredient list, does that mean I can use either of them, for example, the aloe vera lotion from vaseline that I bought in costco?
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Cathy, I used Glaxol base which was the one that my RO preferred me to use. I don't know about the one you're talking about, but the RN told me no alcohol in it, which is sometimes hard to find an aloe that doesn't have it.
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