Canadians in British Columbia
Comments
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M, well that makes me feel better. Have good day today. Spring flowers up here like crazy, crocus peaked in yard and clock spring forward Sunday.
S U M M E R soon. Your gonna see it too girl !! Cause you got the will to live. I can tell
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Hugz, I have no idea if my MO is on 'contract' or not. To be honest I didn't pick him because of anything I'd heard about him, in fact I had heard that he can be quite prickly and hard to deal with. I wanted to work with him because, thinking I would have to have chemo, I wanted a closer drive home from the hospital. The assigned oncologist was a worse drive in summer traffic and I thought no, just no. So I asked to go with the onc in the closer hospital.
I do not understand how an oncologist can't be part of the BC Cancer Agency .... whatever. I have enough to worry about other than the inner political wrangling of the medical system.
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Runor. That was my dilemma to. If I was to go back in treatment I didn't want to have to have my family drive me but I would put my big girl panties on and do the drive myself. Surrey would have cut drive time in half. As it stands when I went for CT the breast doc said all on her own without prompting,"well if your reoccurring you'll want your old MO in Vancouver." That kind of sealed the descision for me. My MO in van is a smart cookie, just needs to stop and become a human again and not a robot. I do have to give it to him. He does work hard.As it stands as of today I believe I'm off the cancer merry go round....well... maybe I'm off the hook today but who knows about tomorrow. Cancers a crapshoot.Ok girls I'm packing up the car for mountain trip tomorrow. I wish you all a great day and that something small brings you joy.
I’ve just taken a pic of pure joy in my yard just now and posted for all those that can’t get out cause their feeling rotten. I hope it lifts spirits.
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Happy International Women's Day! I have some good news.
I saw the locum in our clinic yesterday (thanks moth for the tip) and she gave me a copy of my surgery report. Clear margins, no lymph node involvement and I am downgraded from nuclear Grade 2 to Grade 1!!
The report was done in three days. It just seems to take time to get it to the patient and I am not in Vancouver this week so couldn't pick it up from BCCA
The locum told me that with breast cancer, the older the better. 80s is better than 70s, 70s better than 60s etc. I guess I have lazy old lady cancer.
So far, so good. There may be challenges ahead with rads and hormone blockers, but it looks like I won't need chemo. I am seeing the surgeon on Monday to remove my dressing and discuss treatment. I will ask her about Oncotype testing and I have a little black book of good and bad oncos thanks to your recommendations. I do not want the stress of dealing with an arrogant personality, no matter how brilliant they may be.
Hugz, have fun in the mountains and a spring bouquet to each of you 🌷🌼🌺!
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Dearlife. How delightful. What good news. Keep us posted. So hope you will be chemo free.
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That's great news, DearLife! So glad you got your report quicker & it's such good news!
And yay, Hugz!
I had my 2nd infusion a few hours ago (delayed by a week because I was hospitalized with febrile neutropenia) & just finished dinner. I'm eating while things still taste ok
I'm probably going to take all my meds and try to go to bed early. Last time I started feeling really shaky and in all over body pain about 6 h after the infusion; I'm hoping to just sleep through all that this time.0 -
DearLife and Hugz4u, so glad for both of you and weekend too to celebrate.
Moth, I do hope that this chemo treats you OK~~I never had febrile neutropenia, only low Hg once which long ago put me in VGH for a weekend of great care and a couple of transfusions. I do fear neutropenia as it is the main S/E of Ibrance. I think I escaped it yet again this month though I am winging it with no blood work until I get home a day after I start cycle 8 of Ibrance.
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DearLife, woot woot, doing happy dance for you! A small weight lifted off the shoulders.
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Back from mountain trip. Did more eating than hiking. Thank goodness it’s daylight saving time so I will have longer days to get my walks in.
Mariane, was reading about the Nepal plane crash. A few days ago. Is that the airport you used for your treks? It’s the airport that has the really tight turn before landing they say, it was so disheartening. Curious?
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Hi from YVR;
I'm reeling. Have a Bi Raids radiology report categorized as 5. Have a Core Biopsy Mar 22nd. AM told an appt for surgical excision biopsy will be made after Core results are in.
I feel like I'm twisting in the wind. Can't tell anyone - don't have that kind of family. And not up for inquiries and others concern. And my boys - haven't told them yet. I'lll wait to see what the biopsy results are.
I'm terrified of course. Managing quite well, keeping busy. Nights are hard though, anxiety wells up. Is there anyone out there? I'm lost.
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Welcome. Sorry about your worries. Yes it's a nervous time. We usually say it's best if you can get some anti anxiety meds and use them just to take the edge off or have them handy just in case. (Yes I too hated the thought of meds)This is not the time to be brave and suck it up. This will allow you to sleep and take one day at a time so you don't frazzle out. As you sort thru your emotions it will get better.
As for telling kids, they use to have a great program at bcca that I sent my kid to which educated her in a artsy way about cancer or counseller at sch can give you ideas. Mental health services at cancer centres are experienced in this to but your right, do wait for your results so you don't worry them unnessarily.
Do keep us posted so we can support you. When your ready you will talk to friends as needed.
Try and go for a walk. The air and surroundings are helpful and keeping busy is a great idea! Do something nice for yourself.
I agree this cancer stuff sucks but at least we understand each other.
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BlueSky, I don't know the details of your mamm, but it is possible to skip the core needle biopsy and just have the excisional biopsy. It was suggested that I have both, which I found redundant. So I said no to the needle biopsy and just had the surgical / excisional biopsy and that way there is a pretty good hunk of stuff to look at under a microscope. In my case it is known that needle biopsies give sketchy results so I just said to hell with that, cut a piece out since we're going to end up there anyway.
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BlueSky, welcome to the Breastcancer.org Community. We know it's hard not to worry but please, try to stay positive until your appointment, and come here any time you need to! We're thinking of you!
The Mods
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Hi BlueSky - hugs. We're here for you.
Just FYI, my gp spent some time on the phone to get me a super fast biopsy time. She just kept calling to see who could get me in fast. She also referred me to a breast surgeon right away (like started the fax machine & phone calls now, when we only had the suspicious ultrasound & mammo) so I saw my surgeon the day after I got my biopsy results. She didn't want to wait until we got the biopsy results because that would add more time.
To be honest, this level of speed isn't strictly medically necessary, but it made my mood a whole lot better to feel that things were moving quickly & my team was being assembled. Perhaps you can see your gp today & ask them to call around & see what can be done faster. &/or give you some anxiety meds...
Also, without family & friends that you can share this with, I'd really really really recommend you see a counsellor this week. IMO, it's critical to be able to see and speak to someone because keeping it inside will add to the burden. Be gentle with yourself & give yourself the space to be scared & comforted.0 -
I'm moved tears. Thank you for the support and suggestions. Obviously I'm still trying to absorb and process this. After pressing my Dr and not getting much info I ordered my radiology report from Xray 505. It was sobering.
I took a few lorazepam (half) for a few nights but I found it made me more anxious the next day. Or, maybe, as I was understanding the implications, I was more anxious. I'll never know at this point because this week is a huge week work wise w many immutable deadlines and detailed information to integrate. I've got zopicilone to sleep and am able to do so thank goodness.
I went for a jog tonight and will continue to use all the tools in my toolbox life has shown me work.
My ex husband has been helpful as well - we talk for a few minutes at night after the boys go to sleep. At his urging I called a friend to accompany me to the Core which I was going to go to alone - as in get it over with
Next week I'll connect w BC Cancer and look for support programs, etc.
Moth & Runor: I had no idea that your description of events could occur. With a Bi Raid 5 and language contained in my report I'm pretty surprised Ive had almost 3wks wait for the Core, then more for the surgical excision Mt. St Joseph's. Maybe I need better GP Dr?
Saw a councillor today. Not at BC Cancer but my own. She's shoring me up for sure. But all I want is for a stage and treatment plan. can't tell the kids, or anyone else, until I know more info.
Hope that makes sense? I'm a terrible writer...
If I ask to skip my Core Mt St Joseph sounded like it would be an even longer wait for surgical biopsy...
Lost. Walked through a door to a parallel universe.
BIG Thank you to you all for answering my SOS. Very moving.
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Sky sounds like your on the right track. If you find the zopiclone is not giving you restful sleep ask doc about sleep meds that give you REM sleep which is restorative. The one I used to take was amytripiline but it goes by a different name now.your doc will know. Good stuff. Get doc to tweek anxiety meds.
Nice that you took ex advice and are having a friend join you for core. Ask if they will use a numbing agent on the skin. I hear they do now but not 15 yrs ago when I got it done. It helps a wee bit. Breath slow to relax when you get your core. Think of your fav vacation or something you really like. Use visual to distract. Keep us posted. My fav saying is. “Moving forward."Yes you can do this ky! We're in your back pocket!
Very clever girl to go tocounselling
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BlueSky, I see that you have lots of support here already but thought I would throw in my thoughts. Step by step is helpful. Unfortunately, much of the angst in the beginning is the waiting game and often overwhelming information to digest. Bi-Rads aside, there area number of tests and procedures that will get you your initial diagnosis. I felt really lucky that I got sent to Mt. St. Joseph and feel it is well organized. I had my ultrasound and digital mammogram there followed some days later by a core biopsy done by Dr. Lee, head of radiology at that time though I have seen other radiologists there as well. I did push for a rush on the results as I was ticketed to go to Turkey the following week~~yes it was all crazy! The order of things is for good reason and the results of your core biopsy so give useful info on grading, hormone receptors and type of breast cancer. Once you have the results from that, then (if warranted) you will see a surgeon quickly. I would not imagine things have changed much~~I think I waited 10 days not 3 weeks so I would go in or call and ask to speak to a nurse navigator about that wait. If you don't mind, could you explain the steps so far for you from finding your lump? I assume (tough word that!) that you did have ultrasound and mammo at Mt. St. Joe's? Getting late and my brain is winding down but It would be good for me and others not to mention yourself, to explain step by step what has happened so far. One last question~~has a breast surgeon been mentioned? The lumpectomy or excisional biopsy as it is sometimes called, plus usually a sentinel node biopsy is a real surgery with anesthetic absolutely necessary. Mine took 7 weeks to be done as my luck was summer and all surgeons or OR's busy.
Good night all!
Marian
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BlueSky I feel for you. The first few weeks are so hard, when you don't know where you stand. You are wise to take steps to manage the anxiety - jogging and seeing your counseller. I found deep breathing helped me, also being in nature.
I had a core biopsy at xray505 in January and it was not bad at all. I had local freezing and a very kind doctor. She made a small incision, then took five samples. I wanted to be sure she got enough tissue to test so I didn't have to return for a surgical biopsy (this happened to me years ago.) It healed easily.
I got an appointment with the surgeon within a few days and didn't wait long for my lumpectomy. I did have to wait for pathology reports from our local clinic until I learned that you can get them yourself, which you already figured out.
This community will be with you all the way. There are so many wise and generous women who offer support and advice.
MarianElizabeth, glad to have you home! I hope your treatments are going well and you are enjoying the beautiful spring flowers 💐 in Victoria.
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Bluesky, glad you've found a friend to go with you & have seen a counsellor & have meds on board! All great steps!
As I understand the whole referral thing, if a gp just puts in a referral they get what they get. But mine spent time calling various radiology & surgeons' offices around & seeing who had openings early. She told me she was looking throughout the whole lower mainland, not just our own health region. No guarantees that they'll find something but a proactive gp can make a difference. It's so hard to find any gp accepting patients now though, that I don't know I'd recommend switching. If you have a decent relationship I'd just see them and point blank say "I need you to be in my corner 1000%, including making extra phone calls and making sure I get treated as quickly as possible and get all my results fast. Please do this for me from here on." My doctor gives me paper copies of any reports she gets that I don't have access to online. She has my file flagged that if I call & she is in the office she will see me that day even if she's fully booked. She has also called me by phone to update me on things. She's only been my doctor for a few years and it's a total fluke I ended up with her but I feel so lucky that she's in my corner.
just fyi, my timeline: Nov 20 mammo & u/s; Nov 28 biopsy at RCH; Dec 4 got results & cancer diagnosis; Dec 5 met surgeon; Dec 12 surgery at SMH (originally scheduled for Jan 3 but moved up). Chemo started Feb 15.
For the biopsy they will freeze you. You'll feel a mild sting when they start the injection - like freezing for a dental if you've ever had it. Depending where your lump is, the most uncomfortable part is having to have your arm over your head for a long time. The nurse gave me additional pillows & props. The tool they use for it is loud - it sounds like a staple gun. My radiologist demonstrated the sound it made before she started, and each time before she did it she counted down so I wouldn't be startled & move. I felt nothing & my radiologist said if I felt anything to tell her right away and she'd apply more freezing. It was an easy procedure & I went grocery shopping on the way home. The most stressful thing for me that day was that there was someone obviously going through chemo in the waiting room with me and that almost made me cry because suddenly it all seemed real.
Mount St J is wonderful for breast surgeries btw. One of my kids is a RN nursing student & has done med/surg clinical rotation on that ward and says they provide great care. She observed several lumpectomies there too and met the surgeons & teams & says they're all very, very kind and attentive. You'll be in great hands there.0 -
Thank you everyone! I mean it - this has been a lifeline for me. I feel like I've been around the world in a week - jet lagged and not quite firing on all four cylinders.
My boys are out so I can steal a moment to write
Feb 28 mammo Xray505; Mar 5 mammo and u/s at Xray 505; March 22(next week) Core biopsy will be at Xray505. They tell me 7-10 working days for results, then surgical biopsy at MSJ by beginning of May latest - or a sooner depending on the results. I will be getting a surgical biopsy/lumpectomy, just not sure when.
Moth: I am going to copy your email and bring it with me to my Dr - for prompts. Thank you, your advice is invaluable. I am still in 'stunned mode' and not quite through the shock of It or how to manage this whole process. Thank you too for explaining the Core procedure. I am sending a big grateful hug to you via the universe.
Funny DearLife: I've been playing Both Sides Now in my head for the past weeks
. Having a hard time deep breathing, still shallow breath and pretty keyed up. Oscar worthy performance for everyone else tho ; )Wrenn: Thank you for your warmth, for letting me know your timeline.
MarianElizabeth: thank for explaining the process. Knowing the steps and having this information reduces my anxiety.
You are all amazing - thank you. I am moved to tears that you've taken time out of your lives to reassure me, share your strategies, and explain.
With gratitude for all your generosity, xo
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Hi, ladies
Thanks to moth. I found this group! Hello all the sisters here.
Do you have a good surgeon in Vancouevr you can recommend? I am looking for a surgeon for 2nd opinion.
Really could use your input and advice as well
Had surgery in early Jan and MSJ surgeon sent me on my way with clear margin at 0.5mm,Even though I had multi focal ( found 6 of them). Two of margins are 0.5mm including IDC margin.
saw the radiation oncologist first time yesterday, she said 2mm is minimal she believes should be clear margin.
The dilemma is also MSJ surgeon didn't really explain anything about the margin during post op review. She actually said BC cancer agency will likely send me back to her for not going for mastectomy. She said she will put comment on my file as " patient insists on preserving the breast" which is not correct. I never asked breast preservation to be a factor. Surgeon said both lumpectomy and mastectomy are options for me When she asked me to make a decision.
This conversation in Post ops has left doubts in my mind.
1st oncologist for chemo said is ok to not to do mastectomy in my case as new standard is 1mm. Now I just realize I have margins that is only 0.5mm based on surgical pathology report. So not sure I take comfort in his words anymore given he misread my report?
Radiation oncologist said her experiences make 0.5 mm too small for her liking.
I would have worried less probably if my tumor wasn't multi focal, the fact they are satellite to the main with distance at times 2.5cm, make 0.5mm very close call.
When I asked my surgeon how do we know there isn't more satellite tumors in the breast, she said we neve know anything for sure.
Will really appreciate if you ladies can share your thoughts and a good surgeon to consult with.
Thanks in advance
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Hi All,
Bit late to this discussion but with regards to oncologists being on contract, I think you are simply referring to the model of payment they choose. Some choose to be salaried employees of the Provincial Health Services Authority which oversees BCCA while others choose to operate their own business much like GP’s or other specialists do. There are advantages to both models but it doesn’t make any difference to the treatment and in most cases you are unlikely to even know.
I recently found out that my MO chose the business model when he started his career. He’s been my MO for over 17 years and is no less dedicated (in fact I might argue he is more dedicated than many).
As to research, oncologists in Victoria do carry out research. I participated in a clinical trial at the Victoria Agency during my original go around with BC. My MO specializes in research on delaying resistance to endocrine therapy. They may not be quite as ‘in your face’ about it. I can’t speak to that as I have only been treated here.
Cheers. Pat
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Pat, Wow I'm still learning new things everyday. I'm glad we have each other here to navigate dang cancer. How are you doing? I see your stage 4 in 2017 after being cancer free for a long time. I really hope your coping. Dang cancer. Almost thought I had a reccurence this past month. Ugh. I wish you well and many good nights rest.
NVdoband Wrenn; Noel Davis did my double mast in 2005. I had multifocal sattilite hockey puck size ILC tumor stuck deep into chest wall. As I said,I've had a few false scares lately but I'm still here to say she was great. Noel answers questions and doesn't make you feel rushed. I hope she has not changed and not burnt out because she is so compassionate that she could wear out. I always thought if I needed other surgery it would be her. I'm disappointed to hear she only does cancer surgery.
As for margins back then things might have been different idk. I just told Noel Davis. Take wide incisions, I'm raising a kid and need to live. It worked, I got to see my girl graduate etc! I'm so thankful.
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NVDobie Welcome. I am sorry you are having difficulties getting clear answers from your surgeon.
Dr. Noelle Davis did my lumpectomy on Feb. 26. She is wonderful. Calm, patient and very skilled. She was happy to answer my questions and I had lots, thanks to this forum and my own research.
I don’t know the current standards for margins, but my margins were 12 mm from IDC and 14 mm from DCIS. Noelle also took an extra node - she said she likes to be thorough.
I hope everything turns out well for you. Good luck with getting a second opinion.
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NVDobie & I were chatting in another thread & by pm just ftr for anyone else looking in the future, I recommended the following 3 surgeons; all are oncology trained surgeons
Amy Bazzaerelli (Providence)
Michelle Goecke (RCH)
Francis Zih (Surrey Memorial)
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Ladies;
Thank you. I'm learning so much, better able to ask questions and advocate for myself. Thank you!
When I meet the surgeon at MSJ any ideas of questions I should ask?
Are there any other topics I should check out?
With gratitude
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Pat, your comment on oncologists in Victoria is interesting. Mine says no research in Victoria and it is all done in Vancouver. He says he is a contractor and I have detected (correctly or incorrectly) that he has some angst about it all. This week he explained that he could not sit and he was clearly uncomfortable. When I asked, he said he is seeing someone but has to pay the bills. He also said last month that BC is no longer is a "have" province. I asked who is a "have" and he said maybe Ontario is best. I do at times consider trying to go back to my Vancouver MO but it would mean travel one a month or so to Vancouver. Yesterday I did pick up the phone but it went to answering. What I know for now is that my treatment would be the same since my Vancouver oncologist (who was sitting in for mine who was on sabbatical) organized "the plan." Last month that came out with my Vic MO who I now believe to actually have angst about Vic and Van.
My BS may be the doctor some of you have referred to at MSJH. Kuusk is famous and is a colleague of my BS, both being of an age. I don't like to actually put names in public but am happy to PM. Mine does not have the best bedside manner but I believe she is a great surgeon and has dedicated her life to it her husband told me once~~he and my husband know each other through ham radios of all things and he is the house husband. My case changed dramatically from initial findings to lumpectomy but mine was very aggressive and surprised everyone.
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Hi Marian,
Very odd conversation. I assume, based on your narrative, that "he could not sit" meant he has some type of malady and "seeing someone" means he is getting medical support? (Sounds a bit like he has a new girlfriend... LOL.) Again, he may simply be operating with his own small business as many specialists and GPs do. My MO chatted about this (discussion was a sidebar conversation related to my own employment - which is not health care BTW) and he mentioned that, as a small business, he does not have the typical benefits of an employee such as a pension, health care, sick time etc. In other words, if he gets sick he is not earning which would explain his angst depending on how well he insured himself. Of course, I am sure that there are some physicians associated with the Agency who are on short term contracts as well. You could ask him how long he has been with the Agency.
Odd comment about research, particularly in light of the fact that the Deeley Research Centre is attached to the Victoria Cancer Agency. Full disclosure... I did work on a contract with the BCCA a number of years ago before joining my current employer.
Sorry you are not happy with your MO. I think the world of mine. Met with him today and as always, we had a good laugh and I got the answers I need. My biggest fear is that at some point he might consider moving on!
Hope those of you in the south are enjoying a beautiful sunny day. It's gorgeous here in Victoria.
Pat
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Thanks everyone for your comments and advice. Means a lot!
Hi, Wrenn
Thanks for your comments. I heard about Kuusk as well but she retired in Jan. My surgeon was the one took over from Kuusk as the director at MSJ breast center. I think She got skills as my post surgery pain was minimally so either I am lucky or she got good skills and damaged very little nerves.
A friend of mine also mentioned Noelle Davis so I will check her out and a couple of names Moth gave me.
Hugz
Thanks for sharing your experience with Doc Davis.
Dearlife
Thank you! Nice magins! I like the extra nodes idea since sentinel nodes are not 100%, but 95%+ accuracy if I remember correctly.
Hope your recovery is going well. Don’t forget to start exercise to regain range of motion. BC cancer website has instructions. It’s important as a friend of mine in Toronto had tough time later on and have to go thru painful physio to slowly recover . I learned from her, so started small exercise day 3 after lumpectomy. Full range motion for me 3 weeks after.
Bluesky1969
I found it helped me a lot to talk to someone who went thru it. My close colleague/friend connected me with someone they knew. Talking to someone who went thru it all made a world difference for me. So I can ask questions and talk without having to dealing with empathy but no useful insights.
If you ever need someone to talk to. Pm me and I will give you my number.
I know it is hard, But you do need sleep and energy. We need those healthy Melatonins. You have things lined up and have an army here to support you thru.
I try not to read too much about the topic before bed, as that leads to sleepless nights and stress. I read them in the morning, then usual night routine to keep my mind off it before bed.
ALso to share with you, I excerised everyday before surgery as prep, eat healthy for better body recovery. Same after surgery before chemo to make sure I am in top shape I can possibly be to tackle whatever is getting in my way.
Keep us posted on your progress.
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BlueSky, my questions at the first meeting with the surgeon were mostly about the biopsy report. She was the first person to show it to me. I didn't have a family doctor then (do now!) and I think a cancer surgeon could answer in more depth than most GPs anyway. I had read up on the indicators - stage, hormone status, Her2, grade etc. so I could follow what she was saying. All of this background info is on the BCO site.
She told me about the surgery, anaesthetic, where she would make the incisions, after effects and the likely follow up treatment.
One decision to make is block versus general anaesthetic. I chose block and was glad I did. No pain and quick recovery without nausea. But your options may depend on the size and location of the mass.
You may have other questions - keep a running list as they occur to you.
I don't really understand why they would do a core biopsy then a surgical biopsy for you. I had core, then straight to lumpectomy. I believe surgical biopsy is when the core doesn't provide enough tissue, but maybe someone better informed can explain.
Good luck with all of this. It's a lot to absorb.
Gorgeous sunny day out there - went for an hour walk and saw the daffodils and skunk cabbage coming up!
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