Aug 1, 2017 03:37PM marianelizabeth wrote:
Arrggh! Just wrote you a long note Runor and Starbucks WIFi disappeared and I lost it. Will write later though when on real WiFi!
Canadian health care, clinical trials, and life in general in the north.
Posted on: Dec 19, 2011 06:17AM
I'm wondering how many West Coast Gals we currently have on here. It makes it a little easier to compare notes as our health-care is provincial. Would be nice to share tips and such to each other as we wade though the health-care Bureaucracy.
I'm in Richmond BC (a part of the Vancouver Lower Mainland) and the majority of my treatment has been at Vancouver General Hospital and Vancouver Cancer Agency.. with a few small surgical procedures done at UBC and my original Lumpectomy at Richmond General. My GP is also in Richmond. Ive been on the BCO boards since 2007 with a few breaks.
Please pipe in even if only to let us know your here
Posts 1951 - 1980 (2,299 total)
Aug 1, 2017 03:37PM marianelizabeth wrote:
Arrggh! Just wrote you a long note Runor and Starbucks WIFi disappeared and I lost it. Will write later though when on real WiFi!
Aug 3, 2017 10:17PM JennD wrote:
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.
Aug 12, 2017 12:11PM marianelizabeth wrote:
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!
Aug 15, 2017 03:52AM runor wrote:
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.
Aug 15, 2017 09:59PM stellamaris wrote:
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
Aug 16, 2017 08:53PM Wendy3 wrote:
I'm so sorry Marian MJ helps with pain too and there are some great shops in Victoria😜.
Take care of yourself.
Aug 17, 2017 02:28PM adagio wrote:
Marian - so sorry to hear about your recent developments. Hoping they will find out something real soon. Hang in there. I was surprized to hear that you had moved to Victoria - that must have been a big decision. I also like the slower life style in Victoria, and a house with a view sounds pretty special. Take great care of yourself.
Aug 17, 2017 09:38PM marianelizabeth wrote:
Looks like axillary recurrence says the head of rads at BCCA. He again came to the rescue when I got a call Tuesday saying ultrasound guided biopsy was Aug. 29 and not him as he had said last week. A couple of phone message left with MO and pain clinic and somehow he fit me in today for core biopsy. Back in Victoria and MO appt. cancelled for Monday and results should be Monday or Tuesday and will be by phone. But high probability of it being cancer and lump is pushing on nerve thus the awful nerve problems.
I must admit I am not surprised. It is what it is. I will discuss with MO but once confirmed I hope that any treatment can be done here unless it is surgery and then would want my old BS. Adagio, it was a bit of a sudden decision but I had been looking and love it. Husband gradually coming round as he was sailing across the Pacific when this came up. Now I am even happier to have made the decision.
Aug 22, 2017 03:36PM marianelizabeth wrote:
I talked to my favourite doctor at BCCA this morning and yes I do have recurrence of invasive ductal carcinoma~~2.5 cm x 1.7 cm x 3.2 cm. Next I will speak to my MO to discuss the case. Though a month ago I had not really registered cancer, it has been growing for likely a long time and symptoms showing since lymphedema appeared coincidentally while en route to Nepal. Still in shock but since I was not surprised after diagnostic results in the past weeks, it still is a lot to take in.
Aug 22, 2017 04:00PM adagio wrote:
Marian - so very sorry to hear your news about recurrence. I can not even begin to imagine the shock you must feel - that is a sizeable tumour!! Will you still have the same oncologist as before? I actually cannot remember who that was, but hopefully you like him or her and that they are able to come up with a treatment plan for you. Sending warm thoughts and prayers your way .
Aug 22, 2017 07:37PM runor wrote:
Horrible news. Horrible. My stomach lurches when I read this. Prayers travel with you for peace and strength. Wisdom, it seems, you already have in abundance, dear lady.
Aug 24, 2017 12:25AM Wendy3 wrote:
I'm so sorry Marian I've been told over and over a good attitude is everything and that you have. Will you be treated in Vancouver or can you do it in Victoria? My husband is working on the island and we are thinking of leaving Vancouver behind as well. Take care
Aug 24, 2017 12:35AM marianelizabeth wrote:
Wendy I had my first conversation with my MO about the plan today. She will try to get the bone scan and CT abdomen/pelvis done here in Victoria and the rads too but for now I will stay with Vancouver as it should not be too often for now. The team has been so good in the past 6 weeks and there is no rush. I found out today I am metastatic since it is inoperable as tumour is entangled in verves and artieries. Lots to take in but I do feel like my attitude so far is good and sense of humour too. I love Victoria and how much slower the pace is and how friendly everyone is. Sleep time after quite a day.
Aug 24, 2017 02:28AM Annecy wrote:
Hello Marian, I am not sure if you remember me, I am Lise from Tsawwassen . I have attended one of your pot luck gathering few years ago. I am so so sorry to hear this devastating news. I reside near the Ferry terminal , please let me know if in the future you need a ride from the ferry to BCCA in Vancouver. Praying for you to remain strong.
Aug 27, 2017 03:56PM marianelizabeth wrote:
Lise of course I remember you! How is it going for you?
Adagio yes it is tough but it kind of got worse when MO called. BTW, mine is on sabbatical for 6 months and I really like her replacement but tests and rads will be here and most likely file will move here too. I took my first Ibrance pill last night and this from only Wed. with MO! Moving very fast. It is metatastic, inoperable and incurable but treatable.
I really want and need to emphasize to those newly diagnosed and worried not to let this get to you. My cancer 5 years ago was very aggressive and high risk and high % chance of recurrence. I am blessed in a way to have this happen now and not even 15 months ago as Ibrance was only approved in May, 2016. Also our 17.5 years living in Saudi Arabia gave us insurance that will cover the costs of the drugs I need. Paying $4500/year is now a small price to pay and we are so lucky to have been able to pay that too.
So after 5 years and many wonderful times in those years including leading 2 treks to Annapurna Base Camp in 2014, another to Bhutan in 2015 and my swan song trek to Mutang, Nepal in May of this year, plus much more, I know that indeed there is something wonderful out there guiding me. I am certainly overwhelmed and pissed right off but one day at a time.
Love to you all ❤️ Marisn
Sep 6, 2017 10:49PM Ossa wrote:
Marian, You are amazing You are in my thoughts a lot lately Gentle hug coming your way
JennD I am in the Fraser Valley and had my rads at arhcc. My oncologist is there as well. Had my surgeries at Surrey memorial and Jimmy Patterson. Waiting for another surgery as I am having a redo. Changed surgeons as I was not happy with results. Have had 4 or 5 (cant remember) surgeries and it does not look anything like a foob. My nes surgeon is going to take my latissimus muscle swing it around and make a foob out of it. This should fill in my "crevice" under my arm
Sep 11, 2017 05:09PM marianelizabeth wrote:
Hey Leanna, I missed it too! We have now moved to Victoria so that means I can't do it. Did you notice my above post? I have been thinking a lot about all o you. Stacey (sneakychiquita) stayed overnight with us last night and we were talking about the group.
Sep 11, 2017 05:17PM koshka1 wrote:
Hey sweetie ! yes, I did see your post but on the facebook site and i messaged you amongst a whole lot of other women so I am certain I am amongst many messages. I hope you are doing ok and hanging in.
Maybe we can find someone else to host the potluck and you can come out for the day.
I also may be in Victoria soon so will make sure to reach out.
Sep 16, 2017 01:38AM AMH51 wrote:
Recently diagnosed (Aug 18th). Have had mammograms, ultrasounds, 2 biopsies and a MRI. It is lobular carcinoma and has spread to lymph nodes. The surgeon I saw recommended a mastectomy of the right breast, followed with 4 to 6 mos of chemo and then radiation. I asked if reconstruction at the time surgery was possible and he said yes.
At my initial consultation with the surgeon and before he had results from the additional tests, he advised I would probably need a lumpectomy and radiation. Now that this is not the treatment plan based on additional test results, the surgeon advised that the surgery will be done at a different hospital and by a different surgeon. Is this normal? I feel like I'm back at square one again...waiting to see the surgeon, to discuss a plan.
I am still processing all the information I have received so far. I have a ton of questions and waiting for a consultation with the new surgeon is not easy.
Also, any sites, boards that any of you found helpful regarding telling children (I have a pre-teen). I came across this site and forum by accident and I'm glad I did. It has been a wealth of information so far.
Sorry if I sound like I'm rambling, my thoughts are all over the place.
Best wishes to all of us.
Sep 16, 2017 01:57AM runor wrote:
AMH51, welcome aboard and sorry that you are here.
Please do not agree to ANY treatment plan or surgery until ALL your questions are answered. As you think of things, write them down. Really. I was so frazzled that if I didn't write something down immediately it left my head forever.
Do you understand what happened to change your situation from a lumpectomy to a mastectomy? You might feel better if you had this explained to you clearly. Maybe even ask for a 2nd opinion. Although I know the waiting ...oh yes, there is plenty of waiting... makes you not want to rock the boat. This is one instance where you want to know everything you can.
I found that no one asked me who I wanted as any of my medical people. If you know who you want to see, then tell your family doctor or the Cancer Agency that no, you do not want Dr. Hatchetwaver, you want Dr. Magicworker. I got the oncologist I wanted but I had to be the squeaky wheel. I was assigned a surgeon but I was under no obligation to actually let that person operate on me. (I did and I LOVE her!)
I am so sorry. I have no advice on how to tell your kids. I can't imagine it. This is a good place to be, for a really shitty reason. Someone will point you to a post that has kid telling advice.
Sep 16, 2017 12:22PM marianelizabeth wrote:
AMH51, I agree with all Runor says. Where are you located as that often has a bearing on treatment and available surgeons/oncologists. Runor is in the Okanagan~~correct? I had all my treatment done in Vancouver until recently as we moved to Victoria just before I found out my latest run-in with cancer. The team here is excellent in what I have seen in the 3 weeks I have been treated in. There was no choice of doctors though I think if push came to shove I could have chosen my MO (medical oncologist). I saw him first time this week and kind of let him know I was interviewing him as I was not sure I wanted to give up my Vancouver MO. But I like him and the radiation oncologists I have seen two whereas I never liked the one I had in Vancouver.
As for surgeons, depending on where you are, you may have more choice. I was sent to Mt. St. Joseph breast clinic after I found my lump and just happened to really like the surgeon I was assigned.
Always take deep breaths when it seems overwhelming and as Runor says, write notes and better yet take someone to every appt. I find that I am trying so hard to listen and understand that I just can't write it down too and by the time it is over I have already forgotten things.
As you go through the different stages of this, you will find threads for each part. For instance the Sept. 2012 chemo group I belonged to morphed into a private Facebook group once we were done and are still a wonderful group of friends.
Dec 1, 2017 06:59PM TazzyT wrote:
New here and looking for some information, support, and, well, and ear from those who have been there before.
I went for my first mammogram in March. Came back with something in the right breast. Did u/s and biopsy. It was a fibroadenoma. I had some discharge from my left nipple so dr. sent me for an MRI. I had the MRI in Aug. Found nothing in the left breast, but found another issue in the right breast - a different issue than the first. Did a biopsy. Fibroadenoma. Dr. was still not happy though because of the shape of it. The shape made them increase it to a Birads 4C. They did another u/s and biopsy that day. Still same result. Dr. wanted it removed. So, I went in this week and had a Core Needle Biopsy and had it all removed. It wasn't really a biopsy - they took it all out, according to the doctor (Dr. Janzen in Surrey). So, now I wait until Dec. 11 for the results. She did say that she is glad that we took it out because it was not a fibroadenoma. Not sure if that means that it is cancerous though.
I guess I am wondering what next. If it comes back cancerous, do I need anything else done? Radiation? More tests?
I appreciate all of your information, support, ideas...
Dec 1, 2017 07:22PM runor wrote:
TazzyT, sorry you are here.
What happens next depends on if it's cancer or not. As you are rapidly realizing, not all cancers are the same and different treatments are used in different situations. Until you have a pathology report in your hand, (interpreted by your doctor) you just can't know what comes next. The waiting is the worst part.
I hope it's nothing. You've been through a lot though even to get there. Read more topics on this site and you will get a picture of different treatments. Let us know when you find out. It will be a long wait!
Dec 4, 2017 08:12PM moth wrote:
Hi, new here.
I'm 50 & just got word today.
I had a clear mammo in June. Recently l felt a lump, had urgent diagnostic mammo, u/s, biopsy & today got the pathology report that it's "Invasive Mammary Carcinoma Nottingham Grade 3" and I'm seeing a surgeon tomorrow. It's already > 2cm on the u/s so my family doctor she wants fast action on it.
Is what I have essentially the same as IDC? I'm sort of seeing that they're more or less the same thing? I want to know which forum I should be reading. thx
Dec 4, 2017 08:43PM wrenn wrote:
Sorry you have been diagnosed. I think yours shows features of lobular and ductal.
Make sure you keep track of all of your questions and don't be afraid to push for answers from your doctors. It's good that they are moving quickly so you don't have to wait around with unknowns. Take care of yourself.
Dec 6, 2017 01:14PM marianelizabeth wrote:
Hi Moth and welcome. As Wrenn says, we are sorry you are here but hope we can provide support. You should know more today after seeing your surgeon. Where are you being treated? Beginning this journey means a head full of info so I hope you take someone with you each time you meet one of your team. They can take notes while you try to concentrate on your conversation. I still do this. Once you hear more then you can find the threads appropriate. But you can always come here and it would be great if more newly diagnosed women in BC found this thread as it has been great help to many of us and I know wren will agree.
Dec 6, 2017 04:58PM wrenn wrote:
Marianelizabeth is absolutely right. I am doing fine 4 years out but hate to imagine how hard it would have been starting out without the women here. I hope you will stick around.
Dec 6, 2017 09:01PM moth wrote:
Hi, thanks for the warm welcome :)
I think I have more pieces now. I'm in Coquitlam and I guess I'm being referred to the Fraser Valley Cancer Center (though actually I'm unclear about when / how that happens? Am I supposed to call them or wait for them to call me?). My surgeon is new to BC - just opening up an office and my family doc snagged him as he could see me very quickly. His roster hasn't filled up yet. Heck, he doesn't actually have a real office yet and is in temporary digs.
He said T2N0M0 and recommends lumpectomy + sentinel node biopsy + radiation + tamoxifen; decision on chemo to be made after the OncotypeIQ testing. He'll be doing the surgery at Surrey Memorial or Jimmy Pattison and it looks like it will be in the next 4 weeks.
I've actually pulled myself out of reading the other boards because I tend to over research stuff anyway, and sometimes I just freak myself out. I have an online survivor friend who has offered to be my googler and when I have a Q, she'll give me all the good stuff and delete the depressing stuff cause that's how I need it right now.
I'm a board certified lactation consultant so functional breasts at least are my thing & I have a good basic knowledge of the disease but I've had to bring myself utd on current treatments. I brought my dh with me to the appointment as he's a great comfort but he's super *not* knowledgeable about health stuff. He was good at reminding me to check my list of questions though and making sure I had every answer before I left.
Couple things I'm still mulling is
- how much to push for a re-check now of the contralateral breast because when they sent me to check the lump they only did the affected breast. I know odds are low but otoh, this thing shouldn't have popped up that quickly either after a clean mammo.
- BRCA testing. The surgeon said he could send the referral to the genetic testing people but he thought they'd reject it. I can pay out of pocket but I need more info about whether it makes sense to do it and then if so, where to get it done.
Dec 7, 2017 12:07PM marianelizabeth wrote:
Moth, you really have a lot of info from your surgeon and I will read it over again later today. One thing though to keep in mind~~the pathology from the lumpectomy which further define the treatment. It sounds like you have already got a great team. I asked some of the same questions as you like BRAC testing and check of the other breast. My MO (medical oncologist who I did not see until weeks after the lumpectomy while we waited for the path said no to BRAC due to my case I guess). I did get an ultrasound and diagnostic mammo right away with no questions asked.
I have a friend visiting so need to move on. She is 12 years out from lumpectomy and rads!
Hugs, Marian and more later. Ask away.