Canadians in British Columbia
Comments
-
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.
0 -
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.
0 -
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.
0 -
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 .
0 -
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.
0 -
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
Wend
0 -
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.
0 -
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.
0 -
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
0 -
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
0 -
All!
It sure would be nice to have our get together this year....we missed last year.
Thoughts?
Kosh aka Leanna
0 -
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.
Marian
0 -
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.
Kosh...aka Leanna
0 -
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.
0 -
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.
0 -
Hi all,
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...
Thanks,
Tia
0 -
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!
0 -
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. thx0 -
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.
Love Marian
0 -
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.
0 -
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.
0 -
Moth, the one thing you might want to do once surgery date is decided and then after when treatment plan is made, to find threads that are relevant. For instance when I did chemo starting in Sept. 2012, we had a thread Chemotherapy, September 2012 and guess what? That morphed into a Facebook private group, 15 of us met up a year later in Las Vegas with a huge rented house with pool and 30 of us are still friends. I see a few of them when possible. We remain a big support group.
Wrenn came to at least one of three lower mainland potlucks I hosted annually until last year and now we have moved.
Other options are local support groups or friends who have also had BC.
Keep us posted.
Marian
0 -
Hi, my lumpectomy and sentinel node biopsy surgery is tomorrow; was supposed to be Jan 3 but they called late last week to say they could move me up & I said yes.
I found the December surgery thread and the lumpectomy lounge.I have a couple online friends from other communities who are bc survivors and I've already been in contact with them so that's been nice.
Went to see Thor last night with my family; Chris Hemsworth and Tom Hiddleston joking and smashing things does take one's mind off things0 -
Prayers and good luck, Moth. Speedy healing!
0 -
Hi Runor! I keep hoping that this thread will liven up again~~it was so helpful for me. BTW, I am doing really well! How are you feeling?
0 -
Hi MarianE:
After having a scare when a new lump popped up in my good boob, and then hearing that the bad boob still has suspicious badness lurking in it ... I kind of fell apart a bit. There are lingering physical effects from this cancer. When I look back to how life was a year ago, I am shocked at the differences. The side effects from tamoxifen, the boob that is perma-tanned from radiation. The chronic low level pain I have 24/7, due to radiation I think. The worry. The mental black cloud. The cancer that has grabbed onto my head like an octopus and obscures everything. I wanted all that to be over and when I heard that the architectural distortion in my bad boob was still there, well, I didn't handle it well.
I have since spoken to my radiation oncologist who put everything into perspective. She has requested a 2nd opinion on the continuing architectural distortion to see if we wait and see or go digging around for another biopsy. But I do feel more settled after talking to her.
2nd opinion should be reported to me in the next few days. Fingers crossed.
0 -
runor, the last thing you needed was uncertainty and glad for the second opinion. So much happens in the first year that it is at times overwhelming but there is some perception that once treatment is complete, things will return to normal or at least settle. I think this is often misguided and my worst times were over a year after treatment ended. I was so afraid and every little thing made me think the worst. I was also depressed maybe because of same. You have been through so much and hope good news comes soon.
Keep us posted.
Marian
0 -
hello west coast chums! I had the lumpectomy on the 12th and everything went well. At one point I was already admitted and then heard the OR got filled up with an emergency and one nurse came to say they weren't sure if I was just delayed or cancelled, and that was a bit unnerving.
but then another nurse came to whisper - they won't cancel you. They know why you're here, they're going to do you. And they did!
I was zonked all day yesterday, got dressed in the morning and sat in the living room, sussing out how I felt and hoping to make it to the Hillary book signing but the room was spinning and all I wanted to do was sleep, so my adult kids went alone and dh & I stayed home. I'm feeling much less stoned today. My pain is manageable with just otc meds and I've been outside in the garden for little walks with my dog.
follow up with surgeon isn't until Jan 9 though so a long'ish wait ahead now.0 -
So, about the BC Cancer Agency services - can I say so far I'm not really impressed?
The website looked good, I read through all the materials, downloaded intake forms etc. Whoever wrote their web content did a good job of sounding supportive and caring.
I know my doctor referred me and I was hazy about the order in which things will happen next so I tried calling to talk to someone. And that's where the supportive and caring came more or less to an end. They say you can call just to talk if you're new but when you dial any of the numbers, you get one of those automated Press 1 for ____ recordings and none of them are applicable because they're all for appointment changes etc.
When I finally got a live voice it was just a frazzled, mumbly-sounding, super fast talking "how can I direct your call" receptionist. When I explained what I wanted, she hemmed and hawed and finally said "I think you want 'Name'; I'll put you through" and she transferred me to someone completely wrong who had no idea what I was calling about and as far as I could tell had nothing to do with this department.
I finally went through the whole thing again and did manage to speak to someone who is a new intake nurse and while she answered my questions, I didn't actually feel any warm fuzzies from her.Is that just what it's like?
0 -
I remember when I was first diagnosed in 2001, I struggled with the system. I didn't know what to expect and who to speak to. I think part of the problem in BC is the issue of multiple health authorities. Your surgeon, GP etc. all fall under the local HA and your oncologist is under the Provincial Health Services Authority. Unfortunately, they often don't communicate well.
But honestly, once I was truly 'in the system' I could not have asked for a more caring and supportive team. There were little issues along the way but no system is perfect. And given the number of patients coming through the door, I think they do an amazing job. Ultimately, I developed quite a strong relationship with my physicians, particularly my RO who I saw for many years as part of a clinical trial. I will never forget when I got to the 10 year mark he asked if it would be okay to give me a hug.
Now, unfortunately I am back in the system again but was so happy to find that I have the same MO. He is, quite frankly, fabulous. He responds incredibly quickly to my requests and takes the time to answer any and all of my questions. I think it's a bit funny, he is learning what makes me tick and zeroes in on little off the cuff remarks I make - he knows I tend to downplay things and is quick to react if he thinks there is an issue.
At the moment you are in the worst place, in between systems. It will get better. My advice would be to ask lots of questions, particularly to find out who you should call and what the contact numbers are for different circumstances (they will provide you with a cheat sheet).
I hope things improve and you get the medical team you need to support you.
Pat
0
