Canadians in British Columbia
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Tazzy, glad to hear it is soon and let us know how it goes.
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well, I went yesterday. They gave me a folder on a clipboard with the results in it and another form to fill out. As I filled that out, I looked inside the folder to take a peek. I saw .... Cyst - 0.6 - 6 o'clock. BiRads 4C, looks benign, but ultrasound recommended.
Saw doctor. He could not feel it so is going to do a ultrasound guided biopsy. Said there is about a 10% chance that it is cancer.
Then, I went home and I googled. Birads 4C. Ummmm... looks like that contradicts what he is saying. Doesn't it? Not sure what to think, but know I should stay away from Doctor Google.
Got a call for the biopsy - is scheduled for May 12.
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Yes, Dr. Google is an ass! May 12~~hmmm, not as soon as it would be nice to be but I know you have lots of practice in the waiting game. Keep us posted! I am off my swan song trek in Nepal April 26 and back May 24 but will check here when I have email.
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marianeelizabeth, wishing you a wonderful trip. I am off to Kauai in the same time frame. Would love to hear the details when you get back. All the best!
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Hello from Coquitlam!
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hello TazzyT,
New to this forum. I had a stereotactic core biopsy at Jim Pattinson Breast Clinic yesterday. I have only been told that I have suspicious micro calcifications, wish I had asked for the Birad score, I didn't know about it until reading more today. My original screening mammogram was February 15th, the wait times are difficult to understand and endure.
The technicians were so informative, caring and kind. I was there for almost two hours. I am feeling better today but yesterday I was a mess. Take an extra strength Tylenol afterwards cause when the freezing comes out, you will need it.
Can anyone comment on their experience at Jim Pattison Breast Clinic? How long will pathology results take? If surgery is required, does anyone have recommendation - RCH vs. Surrey? what is your experience with wait times?
This is not my first rodeo, I recovered from Stage 3c endometrial cancer eight years ago but all surgery and treatment was done in Vancouver.
Hoping that I will dodge this bullet and life will move forward again.
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Hi all.
New here. From the sunny (soggy!) Okanagan.
Had mammogram Dec 5, 2016, followed by more mammos and ultrasound, surgical biopsy, diagnosis of cancer, lumpectomy. Lumpectomy was April 12th, 2017 and now my next appointment for a stress test, BEFORE the oncologist begins chemo, is not until July 31st! I guess I will start chemo sometime in August. Overall, from first suspicious mammogram to August will be 8 months. I am feeling utter despair over how long this is dragging out! No sooner do I fall into a lull of thinking 'this isn't really happening' then I get a call for one more appointment or procedure and get all freaked out all over again. The emotional exhaustion and stress of waiting and thinking that I have cancer in my body and nothing is happening .... has worn me right out.
I have been treated so well and kindly by every person involved in my care, I can't say enough good things about the lovely people I"ve encountered. But the waiting, the 3, 4 and 6 weeks between appointments. ANd then you read that there are optimum times in which to begin treatment. I can kiss those times goodbye!
Hurry up and wait...we all know the tune!
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Hi Runor,
Welcome! Although I'm sure that it's not a place where you really want to be. I'm in the Okanagan as well, in Kelowna. I'm 7 years out, but I certainly remember all the emotions and frustrations that you described. You can pm me if you want to chat, I'd be happy to pass on any wisdom that I may have retained. I hope that things start to move forward for you soon!
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hi, the waiting is terrible. I am in Vancouver. Between 1st lx and final mx was 5 months, with all the uncertainty in between. It was the toughest experience of my life. But you will get through it, I promise. Hugs
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Oh, this waiting is insane! I get a little impatient with the early detection push only to find out that once detected, you will be shelved for months while things move at a snail's pace! Knowing what's coming is like torture, SLOW torture! I just want this to be over with. Ugh.
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Hi Runor. It does seem odd that chemo is so far off. What does the oncologist say assuming you have seen one? I am curious about Stage IIB with 2 cm and no negative nodes? Stage IIB describes invasive breast cancer in which:
- the tumor is larger than 2 centimeters but no larger than 5 centimeters; small groups of breast cancer cells -- larger than 0.2 millimeter but not larger than 2 millimeters -- are found in the lymph nodes OR
- the tumor is larger than 2 centimeters but no larger than 5 centimeters; cancer has spread to 1 to 3 axillary lymph nodes or to lymph nodes near the breastbone (found during a sentinel node biopsy) OR
- the tumor is larger than 5 centimeters but has not spread to the axillary lymph nodes
Would be nice to think maybe not IIB! Mine was just under 3 cm but 7/14 nodes for IIIA. But I hope you can be a bit assertive and get wait times moved up.As for me, Lymphedema for first time ever and upper arm big and not going away. Fingers tingling most of the time and can't sleep on my right side due to arm/shoulder pain. Saw RMT Monday and she is going to send me a colleague who does manual lymphatic drainage. Saw physio on Wed. for knee and LD arm. He is concerned. Saw PS today for 6 month post reconstruction surgery. I am now on Dr. Lennox's waitlist again but ASAP because it is not working out and so after all this time, I have decided to get rid of the mess and also he will remove implant on good side. Knee surgery also on the agenda but after that I am looking forward to moving on. Well, I am hoping so. My swan song trek that I led in Nepal in May went well despite my knee and LD. But I am done high altitude and lots of high pass trekking! My group loved it totally and so worth to pass on how much such an adventure can change a person's perspective and future.
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Hi Marianeliza:
I'm not sure about the waits. It seems my case gets sent to the 'appointment making people', but the appointment making people just make appointments and do not take into account the situation and how critical it might be. I could be totally wrong about that. I find that I have no one overseeing this for me. As I have said before I am on a conveyor belt and have no one medical person to go back to if things get derailed. I have read of people who have nurse guides. Sounds like a wonderful idea! But here... when I ended up back in the emergency room 2 days after lumpectomy with extreme pain and bruising all down torso to pubic bone, I sat there for 4.5 hours like everyone else. There was no 'team' that I could call at any time. I even had to explain to the admitting nurse what a lumpectomy was! (as I held my boob and doubled over). Sheesh.
I think I am 2b because my lump is 2.5 cms. When I filled out my bio it didn't give me the option to write 2.5, I just had to pick one of the provided answers and 2 was the closest. But it actually was 2.5, which I thought bumped me up to 2b. Negative node. No LVI. No necrosis.
I do go see Oncologist June 13th and we will discuss the Onctoype test and next steps then. But he has ordered a heart stress test because I said I did not want Adriamycin as I did not want to risk heart problems and he said I looked pretty darn healthy. Yea, well, looks can be deceiving. So if the heart test is July 31 I am assuming that I will not be starting any chemo until AFTER that...which puts things into August!
I think at this June 13th meeting (which will be 2 months after my lumpectomy) I will be all mature and rational and say, DUDE, WHAT THE HELL ?! Not that I want chemo ... but if I must, I don't want to leave it so long.
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runor, I had my lumpectomy in early February 2010 and didn't start chemo until the end of April that year. The waiting is the hardest part, but I kept telling myself that if the situation was really something to be concerned about, it would have been expedited. Also, I think that we have a nurse navigator here at the cancer centre, are you in Kelowna? It might be worth looking into.
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Runor, BCCA no matter which city you are in should have nurse navigators. If you don't mind my asking, how old are you? I did not question the A of A/C as I knew it was protocol for my aggressive BC. But, I should have had an echocardiogram or MUGA scan. My MO said not needed as since I had just done a high altitude trek in Nepal. A couple of years later I started having SVT's on uphills in Nepal and then here too. Echo and cardiologist said keep trekking though I do have arrhythmias and SVT's. I credit it all to chemo but probably would not reject it if I could go back and do it over.
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Marianeliza, I am 53.
I already have some heart issues, high blood pressure and a family history of bad hearts. As I understand it CT has a similar outcome as AC-T in low to moderate recurrence risk cancers. But at this moment I do not have my Oncotype score and cannot say for sure where my risk will fall. I am very reluctant to do anything to risk my heart. I also asked about Abraxane (nab - paclitaxel) but it needs to be granted special usage to be used in my case. It does not carry the allergic reaction risk that taxol does although it carries a higher risk of neuropathy, as I understand it.
I am in a small town and no one has mentioned a nurse navigator to me.
My oncologist is NOT part of the BCCA. This was made clear, I have no idea what it means but am pretty sure it has more to do with politics than medicine. I actually asked, so if my oncologist isn't part of the BCCA does that mean I don't get real chemo? That he hooks me up to Jack Daniels and gin? (cause I'd be all over that!) But they assured me that I would get the same drugs as anyone else.
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Runor, are so so far from Kelowna that it is too far? If not that is a BCCA center that many of us in British Columbia seemed satisfied with. With your heart issues it seems like a better idea to have chemo there too where the monitoring would be the best. I like your attitude~~jack daniels and gin indeed!
How are you doing Wrenn?
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Kelowna is just over an hour away. I will likely be staying there at the lodge for radiation.
I am planning on having my chemo in Salmon Arm. I know lots of people who say ewww, ick, it's such an old hospital with such a small, yucky chemo room, who would want to go there, things are better where the facilities are newer, brighter and shinier.
I disagree. A new building in no way is connected to the quality of care. A bigger, brighter chemo room in no way is equal to superior care. The idea that newer = better is a false conclusion. You can go to a state of the art hospital and receive lousy service.
Hub will be taking me to and from chemo. In Salmon Arm he has people he can go visit and things to do while he waits. It is also close to home. By the time I am done several hours of chemo the LAST thing I want to do is sit in a hot truck and fight my way through an hour and half of summer tourist traffic to get home! I admit freely that this decision was made with comfort and convenience in mind. I met the oncologist and feel okay about him. I know that I have other choices should the relationship sour.
Plus, if I want my fellow citizens to get cancer care close to home, then I have to show up and use the facilities and do my part to make the case for support and improvement to the facilities that exist. I have to put my money where my mouth is. If everyone goes off to the 'bigger, newer' facilities, it kicks the legs out of smaller, local initiatives. So I am aware that my choices carry an impact in the bigger picture of local care and the allocation of dollars.
But yeah, the wait times are sucking.
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Good afternoon ladies ,
It's been awhile I hope you all are doing well reading through the posts seems like you are😊. I wanted to ask if any of you in the Vancouver area know of a good oncologist who isn't against alternative therapies. Having issues with mine of late. Thanks so much and I wish you all the very best.
Wendy
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Runor I lived for eight years in Salmon arm up until I was misdiagnosed for three years. Watch out for doctor Hiscock an awful person. It was not only him but the radiologist and an oncologist as well. The care was unbelievable bad so I sold the farm and moved to Vancouver where I'm now in treatment and stage four thank you Salmon arm hospital. I wish you the best of luck.
Wendy
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Wendy, good to hear from you. I can't help with the onc. I am seeing Chia and he is a bit on the colder side, and I don't know how he feels about alternatives. He is brilliant though. Good luck with your search and stay well.
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Fairly quiet here but as always nice to see some of you. Runor, how is it going as it has been a couple of months since you were on. Wendy and Stella, also good to hear from you.
I am doing a quick copy paste from another thread as typing is painful~~explained here. The tingling/burning and pain in my hands mentioned months ago has continued and worsened with pain either radiating to or from my scapula. The lymphedema continues and I did see RMT for a few sessions of manual lymphatic drainage but absolutely nothing from that.
Backing up to when LE started, I had my compression sleeve on and was even on a lie flat bed in business class a (a big treat as I was using all my points. I had flown longer flights in January and March for NZ so was really surprised to see my hand like a balloon. Anyway, long story short I was on my way to Nepal to lead my swan song trek which I did do~~Mustang which is a high altitude trek. The lymphedema was there but did not bother me. Some of this I did briefly describe here in early June.
On my return to Vancouver I already had 6 monthly appts. made and by that time I did have the tingling in my hands and the pain from my scapula but still not bad. However my implant redo only less than 6 months prior, was already contracting and cording starting, the reasons for the redo in December. My PS decided to remove all ASAP and scheduled that for June 26 whereas it took me well over a year to wait for the previous surgery. We were moving also in June and there was a fair bit of stress~~duh! But all the problems were getting worse and by the morning of surgery, I could hardly wait for anesthesia everything hurt so much. I had hoped that would resolve the issues but no and the past weeks have intensified the pain and my fingers and hand have tingling/burning and intense pain at times along with the pain from scapula and through my arm. I now have numbness in my under forearm where there is mild edema. The strength in my hand has decreased remarkably in the past 10 days.
I had an ultrasound of axilla and supraclavicular area July 11 and unremarkable. I already had an MRI booked for same and since then my cancer agency has worked hard to decide what to do and luckily head of radiation was in on a weekend a couple of weeks ago when the MRI dept. was trying to decide on two MRI's. After lots of consultation the MRI July 31 is to be C-Spine and brachial plexus in hopes of finding out where the nerve damage is coming from. I also started Lyrica last Sat. 75 mg twice a day. I think it may be helping but am not jumping up and down about adding another drug.
I have not been able to lie on my right side for a month as immediately the pins and needles start and arm to hand goes numb. Wish I was left handed too!
That was just about a week ago and yesterday decided to stop the Lyrica for now. It did not seem to be doing much other than make me unable to wake up in the morning though does not always allow me to go to sleep. Also I am doing some highway driving this weekend partly on my own and the S/E that include possible sedative like effects may be why I was struggling to wake up. While on Lyrica though the loss of strength in my hand has moved fast and now cannot open most things nor use a key in a door. I am trying to finish a baby quilt and nearly impossible. Also that forearm remains numb.
MRI can't come soon enough! Am hoping that it will show up where the nerve damage is and that there is something that can be done not only to stop this relentless progression but also to reverse it. Am not thinking recurrence though that is a possibility.
Ah, the cancer take-aways!
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Marian I'm sorry to hear your dealing with pain I hope you are able to resolve it and get on with your life.
I just wanted to send out a shout out. If there are any of you interested in trying out dragon boating with a group of lovely cancer survivor woman on Abreast in a boat there is a boat leaving Granville island at 5:30 till 7:00 . There is usually room for some woman who want to try it out. PM me if your interested I got Haidi on board this year and she loves it.
Wendy
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Marian I'm sorry to hear your dealing with pain I hope you are able to resolve it and get on with your life.
I just wanted to send out a shout out. If there are any of you interested in trying out dragon boating with a group of lovely cancer survivor woman on Abreast in a boat there is a boat leaving Granville island at 5:30 till 7:00 Wednesday evenings. There is usually room for some woman who want to try it out. PM me if your interested I got Haidi on board this year and she loves it.
Wendy
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Hello all!
Just got home a few days ago from radiation and my stay at the cancer lodge in Kelowna.
Had 16 zaps, wasn't supposed to see much reaction until midway through, zap 8. By zap 3 my boob was swollen, hot, bright red and sore! Now it looks like bacon that was overcooked in the microwave. Ewww.
I am tired. Tired on a level I can't explain. I start the day with energy and motor along getting things done and then all of a sudden it's like someone pulls the plug. It's not a gradual slowing down. It's a sudden hitting the wall. Powering out. I'm done. I have never had anything like this. There is open, broken flesh under my boob in the crease. It weeps and hurts. But if that's as bad as it gets I'll be happy. Although they did warn me that for the next two weeks it was going to get worse before it gets better. Great.
The cancer lodge was a unique experience in that it forms its own little culture, a temporary, tight society. But it's also very sad and sobering to see all the people, rotating through ceaselessly, fighting this filthy disease. The suffering that humans endure is staggering.
My mental state is not good. I think I am too informed and realistic to think this disease is cured. At least not my definition of cured. 5, 10 or 15 years is not cured. 15 years won't even get me to 70 years old. And the next person who tells me I have to be positive ..... God that pisses me off.
I have my first boxes of tamoxifen and I have to confess that I have no plans of taking the full dose. If I take it and feel like hell, I will quit completely. I will not dial it back and hope to tolerate it. My best chance of taking it for 5 years is for the miserable side effects to never be so bad I can't stand it. My best chance of taking it is to take 10mg a day and hope to god it does me some good. But do I believe that ..? Good question.
Marianeliza, your struggles are heartbreaking. I think I have pre-lymphedema symptoms and despite bringing it up repeatedly with the radiation techs AND the rad onc, I never got much more than a shrug or advice to go buy a compression garment. Telling them you really don't want lymphedema and maybe they ought not be nuking the shit out of your armpit produced no change in treatment. I suppose shrieking I WANT THIS CHANGED! Might have resulted in something. But mentioning my symptoms and concern seemed to be of no concern to anyone. Marian, I hope there is relief for you somewhere!
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Arrggh! Just wrote you a long note Runor and Starbucks WIFi disappeared and I lost it. Will write later though when on real WiFi!
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Hello! I'm from the Fraser Valley in BC and I was wondering if there is anyone else who has been seen at the Abbotsford Cancer Agency? I've had some ups and downs there since I started the journey with my first MO apptJune 22nd. It would be great to find someone who has had good experience there. I feel like I am doing something wrong.
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JennD I hope someone from Abbotsford chimes in as I know there are some.
Runor, I found rads tough and since I am not a napper, I was surprised when suddenly some days I could barely drag myself around. I did not have the burns like you at all and am hoping yours are starting to heal. How bad is the air where you are? What a summer for much of BC!
Here in Victoria it cleared overnight but I just can't imagine what it is like north and east for all the people who have to endure it.
As for summer and me, I did not know I would be back and forth to Vancouver so many times but am happy to do it with the care and teamwork I am getting at Vancouver BCCA. I was in Vancouver 3 times in the past 10 days~~once for 3 nights, second there and back in one day one transit and ferries and this week I went over Tuesday but with the car and expected to be overnight but appt. for Wed. was cancelled for good reason.
MRI on July 31 and Tuesday I saw my new MO for the first time as mine is on sabbatical. I took a friend and as I had said to her, bet no results though I knew a preliminary was on the system. Yes, no report but I said that did not work for me and she called radiology and good old Dr. Martin was there and had a look~~enhancing tissue in brachial plexus shows up. He ordered a CT scan with contrast of chest to be done within 5-7 days. My new MO ordered an appt with a neurologist and an appt with pain and symptom clinic and gave me an Rx for Oxycodone.
I got a cancellation for the CT for last Sat. on a long weekend! That was my 10 hour transit day and the two techs in CT were very efficient. Back over Tuesday for pain and symptom clinic which I felt was cart before horse not knowing the cause. But again, great teamwork and pharmacist and doctor and the doctor called Dr. Martin to see if he could check the CT results. He had a look and can see a lump and told the doc I was seeing that she should be able to feel it. Yes she could but for me it is all such a mess with the recent capsulectomy etc. Anyway, he will do an ultrasound guided biopsy still to be scheduled. But looks more and more like a recurrence or new lump and in same area my first one plus 6/8 positive nodes were in. Nerve damage is less a possibility too. Appt with neurologist for the next day was cancelled for that reason.
I still feel very cared for my the Van BCCA team and despite the situation, at least in the near future there should be an answer or two. Pain clinic doctor who I really like, put me on Oxyneo which is longer acting and twice a day. Of course S/E includes good old constipation but after not being on top of it this week I am also on the regime of sennekots I was given.
Sorry for this long winded epistle but we are pretty quiet for now with everyone until we know some answers and felt I wanted to let you all know. I love our new home and its ocean views and Victoria is much slower paced which suits me just fine. Now if we every get fully unpacked it would be nice but not too concerned really as main stuff is done.
So glad too that I did my swan song trek in May!
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Marian, my heart falls reading this. You sound so ... sane. I am in awe.
The smoke here has been the worst I anyone remembers. We have had some smoky summers before. But this? This is off the scale. The devastation is unfathomable. We live on a tinder dry, heavily forested mountainside. Everyone up here is on high alert, as is everyone in the province. When I was staying at the cancer clinic it was sad to see the people there undergoing treatment while their home towns were evacuated. What a horrible feeling for them! Some had no place to go back to when they left radiation treatment!
My boob is healing, although I have learned that zinc diaper cream does NOT wash out of a black bra. Oh well, it gave its life to a worthy cause. That Zincofax is like axle grease! I pray for you Marian.
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MarianElizabeth, so sorry to hear you are having to deal with all this again, on top of having the capsular issues. I am thinking of you and sending healing prayers. God bless
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I'm so sorry Marian MJ helps with pain too and there are some great shops in Victoria😜.
Take care of yourself.
Wend
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