Canadians in British Columbia
Comments
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Marian, let us know how you are doing. We are all thinking of you.
I too would love to get together again and a potluck would be lovely. My condo in Vancouver is very tiny, or I would be happy to host. I have space in our house on Galiano Island, but that is a long trip!
I went for my first diagnostic mammo yesterday. I thought they would tell me on the spot if it looked okay but there were no radiologists available - apparently they were all at a seminar yesterday. They said my doctor would get a report in 2 weeks.
So today I got a call from X-ray 505 to come in January for another mammo and an ultrasound. I told them I went through this last Christmas and I couldn't wait until January. They booked me on two different days, next week for another mammo and Dec. 20 for an ultrasound. I hate putting my family through this worry with me. This was how we spent last Christmas. We had to cancel our holiday in Hawaii because of my surgery and treatment,
It's in the same breast so I hope it is just fluid or scar tissue. I don't see how cancer could recur a few months after 16 radiation treatments. But it sucks..
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Dear Life
Does your lab have 3D? Maybe worth finding out whether 3D will be more indicative vs. having the same 2 D again in 4-6 weeks.I asked about where I should do my follow up mammo, radiation oncologist suggested to go to the one I had history which was only one mammo and they couldnt see nothing.
I Asked Doc Chia this week. He recommended BC Cancer or an private lab in Fairmount medical building, he says they have the newest technology including 3D. I think Women's hospital also have 3D from what I can read online.
Keep us posted.
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NVDobie - Yep I had 3 D tomography. Went to the private lab in Fairmont - Linda Warren & Assoc. They have always done my mammos. I pray they are just being cautious. Yesterday I knew enough to ask if I had dense breasts and was told yes, which makes them harder to read. I thought they were automatically telling women about breast density now in B.C. but I had to ask.
They say 94% of recalls are benign. Maybe this time I will be lucky. I’ll keep you posted.
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HI all;
It was great to meet you all and thank you for your messages of support. I've been licking my wounds and reorganizing my life. Was deflating, but I've reoriented. And I'm baking. I'm a stress baker.
Thanks for the tip: I did ask to be on a waitlist, but was told there is none, and that her next surgery date is Jan 28th, full stop.
Oh man, Pearl, I'm sorry you have to go through this: the waits are gruelling. I am holding space for you and sending good vibes for expedience!
I look forward to the pot luck
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Dropping in quickly while on break from final exam prep
BlueSky - sorry to hear about your delay, that truly sucks. I hate how they talk about patient centered care but so many things are obviously not patient centered at all. Is there any point now in looking for another BS? It seems out in Surrey/New West etc area, the waitlists for things are shorter but maybe starting fresh now will just put you in the same place...
DearLife - ugh, that's a kick in the teeth. When I had the callback (+ ultrasound + biopsy eventually) this summer about my healthy breast my MO told me that he thought they were just being super cautious. He was very reassuring before I went in for all the appointments. Have you or your docs seen the initial report itself yet or what birad they gave it? I'm planning to ask for an MRI for my dense breasts. My gp said she would give me a requisition so we'll see.
Re the dexa bone scan - fwiw, my MO requisitioned it even when we had pretty much decided that I wouldn't be doing hormonal therapy. I got the sense that there's no way he would have started hormonal therapy without sending me for it. Walden, pale small boned women of N European origin are at risk just by our genetics so honestly, I'd get it done. Chemo itself can cause osteopenia & osteoporosis - I'm sure that's where mine is from. Nobody in my family has bone loss and I've been active and doing weight bearing exercise my whole life. Given how badly chemo affected my bone marrow, I'm not surprised it hammered the bone turnover itself as well. If absolutely everyone refuses to requisition it (though I really don't see why they would), it's not expensive to pay out of pocket for it (& it's very non invasive and such a low amount of xray that the technician sits in the room with you).
Marian- fingers crossed for good results from your mri.hugs everyone
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Thanks Moth - it is so reassuring to know your MO thought your recall was just super caution and that you have been through the same thing. And I thought recalls were just for lettuce!
The report was faxed to my GP but she was not in on Friday. I will call back on Monday and ask about the Birad. Good suggestion about an MRI too.
Good luck with your exams! I know you will ace them 🙂.
About a bone scan - I am over 65 so they were happy to give me a baseline. I think the cost for private pay is under $100 according to the clinic where my DH goes for his osteoporosis.
http://www.prohealthcr.ca/msp-funding-for-dxa-vancouver
It is so comforting to be able to talk to you about this boat we are in. Gentle hugs to all.
❤️ 💕😘
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More about osteopenia from the Research thread, posted Nov. 29.
Evaluation of Osteopenia and Osteoporosis in Younger Breast Cancer Survivors Compared With Cancer-Free Women
- Breast Cancer Research This prospective study examined bone loss in 211 breast cancer survivors (mean age at breast cancer diagnosis was 47 years) compared with 567 cancer-free women with a familial risk for breast cancer. The breast cancer survivors were at a significantly increased risk of osteopenia and/or osteoporosis compared with the cancer-free women (HR, 1.68). Younger survivors ≤50 years old were also at increased risk relative to cancer-free women.Younger breast cancer survivors face an increased risk of osteopenia and/or osteoporosis compared with women who are cancer-free.Studies are needed to determine effective approaches to minimize bone loss in this population.The association was stronger among recent survivors after only 2 years of follow-up. A higher risk of osteopenia and osteoporosis was also observed among survivors aged ≤ 50 years, estrogen receptor-positive tumors, and those treated with aromatase inhibitors alone or chemotherapy plus any hormone therapy relative to cancer-free women.https://www.practiceupdate.com/C/76308/56?elsca1=e...
- https://breast-cancer-research.biomedcentral.com/a...
- https://doi.org/10.1186/s13058-018-1061-4
- I can't understand why any doctor would hesitate to order a baseline bone scan for a breast cancer patient, regardless of age. You might have to show them the research.
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Thanks everyone for the info on osteopenia/osteoporosis. I talked to my NP about a baseline bone scan and it seems, from my discussion with my MO, that she misunderstood and thought I was saying I thought my bone pain from chemo was some other cancer and thought I wanted an MRI or something. Have not been impressed by my NP or her office so far. I will need to bring this up again before I start hormone therapy.
Enjoy the weekend everyone! We're putting our tree up tomorrow!
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Hello everyone! Thanks for asking about my MRI. This is my third one since the summer of 2017 when my metastasis was first diagnosed. It is odd but I do not recall the first one as being very difficult but maybe it was just a very short one without contrast. The second one was in June and it took over an hour and I just barely managed to make it that far. I did not worry about yesterday's thankfully and didn't think about taking some sedation but did not. Next time I will ask. Long story short but I was there well over two hours with my friend. Lack of IV nurses created the most difficulties. It took ages to find a nurse to access my port then once they pulled be out of the MRI to put the contrast in there was no nurse to do it. There was a concern of the pictures for the second lot not lining up so at that point I said try to get an IV in and thankfully it worked the second go. Once part was over my port had to be flushed and guess what? No nurse so another 20 minutes. Now that it is done it is just a wait and we all know what that is like. Because my MO plans to send it to Vancouver to the head radiologist at BCCA it is likely that I will not hear until Tuesday or Wednesday. But my Vancouver radiologist is really great and chances are I will here Monday if he is not too busy. Regardless of the outcome it looks like I will start paclitaxel on Thursday at 10:30. I go to chemo teach on Monday and blood work on Tuesday.
Back to one week ago when 11 or 12 of us met for lunch. It was wonderful to see old friends and new ones too, even though I hardly got to talk to those in the second booth. Let's see how it goes in the spring and if not then, the fall. NVDobie, what does your Avatar mean if you don't mind my asking? I do not see why North Van would be a hindrance. For those coming from the valley it may even be easier. Anyway let's keep the talk going on that.
I have read back a couple of times since our lunch and I love it that so many are posting. Wrenn, I was so glad you came I took that chance when you drove up in front to come and meet us. I too enjoyed the conversations in our booth as I said above. My memory is not very good these days but DearLife, did you send an email with all of our contacts? Apologies if you did and I missed it and if not I would love to have it sent. I know that you are now playing the waiting game, something that all of us have faced. Hoping for the best.
I have had breakfast in bed this morning after a really busy week but I think it is time that I get up and do a few things here. My husband is away until Tuesday so I'm having a chance to be independent. I hope all of you're having a good weekend.
Big hugs, Marian
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Hi Marian
I am sorry your MRI was an ordeal. So many problems caused by short-staffing, especially this time of year. I am glad you don't have to wait too long for the report and I am sending you healing energy for the very best results, also for the chemo starting this week.
Breakfast in bed is a perfect antidote! Somewhere on BCO is a thread called “Slices of Joy" and I try to remember that when it all seems too much.
Thanks for the reminder about the contact list. I just sent an email to everyone who attended. It's called “BCO Vancouver Contact List" so look in your Spam folder if it doesn't arrive.
I think you also have a list from prior get togethers. Perhaps we can combine them and have a big bash next time we meet!
Slices of joy to all
❤️
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Thanks so much everyone for the bone density tips! I feel very luck to have found such a smart group of ladies to chat with.
Wren, that's a good point. I'm quite sure I used the word "bone scan" when my MO said it wasn't necessary.
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Pearl
Got your email. Thanks!
Marian
I have two doberman, and live in North Van. That's where the name was from. I live in a house with my husband and 2 dogs. If anyone is afraid of dogs, I can leave them in the family room where we stay in the dinning area and living room. As long as there is no one allergic to dogs. I am happy to host pot luck here. A
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DearLife, you wondering if cancer can come back so soon after radiation reminds me of my event. Forgive if this is a repeat.
I felt a lump in the good boob. Freaked out. Went for mamm on BOTH boobs. Report said the new lump is a cyst and it's so old it has dust on it HOWEVER the bad boob has a suspicious mass that we don't like the look of, we want to look again really soon, it might be scar tissue or it might be cancer, not sure, bi-rads 4.
I freaked out. I freaked out HARD. I started making phone calls. I was a serious pest and called my radiation oncologist until she called me back and I said , "Do you mean to tell me that you burnt my boob to a crisp and I walked out of that clinic with an active cancer ?!?! Didn't this stupid radiation KILL the damn cancer? Wasn't that the whole point of this?! "
She said, if you walked in here with an active tumour you walked out with it. Radiation after surgery is designed to mop up a few stray cells, it is NOT the kind of radiation that targets tumours, that is a whole different animal, so if you walked in with active cancer then yes, you walked out with it after three weeks of radiation.
I freaked out some more and there might have been words of extreme unhappiness, I can't even be sure, it was a blur.
Long story short, I had more follow up mamms 4 months later and then again 6 months after that and the 'thing' is shrinking and they are calling it scar tissue. Surgery and radiation do DAMAGE and scars are a real thing. I am hoping with all my might that is all this is for you.
Side note: Normal procedure is that you have a mamm, sit in the waiting room until they tell you either to go home or come in for more pictures. But no one gets any information of any sort at the mamm room. People ask. They are told their doctor will call them with the results. NOT ME! They take my pics, I sit down, the tech walks my pics into the radiologist's office and when she walks out she gives me a full and complete report of everything the radiologist just said and what the report going to my doctor is going to contain. I guess there is a sticker on my file that says: SHIT DISTURBER, tell her everything so she doesn't go away mad and confused and cause problems. I can live with that!
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Oh yikes this is scary. I had huge clean margins and three different radiologists looked at my tumour scans last time (including my radiologist friend who took an independent look), so I will be devastated if they missed something. Or maybe it was hiding in my dense scarred breasts.
I already have lots of scar tissue from reduction surgery many years ago. So I will pray it is scar tissue. My lumpectomy breast is actually larger than my intact one, which is also scary. Or maybe it is swelling. Awful not to know what is going on.
I just got an insurance payment yesterday from cancelling our trip last February. I hope I don’t have to cancel our dream trip to New Zealand planned for this year.
But I will insist on more information after the mammogram on Friday. Send prayers, any kind will do.
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Dearlife, I see you had a lumpectomy in 2018. The size of your breast could indeed be swelling. It took a year and a half for my breast to begin to 'settle down' (damn rowdy boobs!). As I am sure you know lymphedema does not just occur in your arm but can affect many areas of your body, including the breast itself. I had my lumpectomy early 2017 and here we are, end of 2018, and my breast is still sometimes rock hard, swollen and with HUGE gouge marks from where it was pressing into the wire in my bra. I swell both above and below the bra strap on my side. Beneath my breast, there is a dense 'tire' of swollen tissue that never goes away. If I lay on my back, hike my boob up to my chin, you can SEE this huge, swollen ridge and even Hub has commented, oh my god what IS that?! So yes, it is extremely likely that you are still swollen. I am sending all kinds of prayers.
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runor - I have now had 2 mamms since dx in November of 2016, and because of my BC,they advise me right away that all is good and see you next year the doctor reads it right away which is nice, so I am thinking that is the case with you too, not that you are a SHIT Disturber (though you may well be?!)
Wishing you well!DearLife - I just returned from my dream trip to Australia - 5 weeks of awesomeness! I truly hope and pray you can go as it was an amazing experience for us. I am in Alberta so we flew Calgary to Vancouver, then straight to Brisbane (14 hours)! Praying all good things for everyone...
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I'm still under the care of my MO for annual mammograms,but wondering is there a point where they officially say, you are "discharged" from the cancer agency - i.e. start booking all your follow up imaging and checkups through your GP?
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Thanks everyone for your good wishes.. They should call it SCARE TISSUE 🙄.
Runor my breasts have always misbehaved. Mostly benign, but not this year. I am sorry to hear but it is reassuring to know your swelling persisted too. Even after a reduction I am double D so there is lots to corral. And my tumour was small but 7 cm deep so it must be a big scar. It doesn't hurt, can't feel a lump and have no symptoms except anxiety. Yes the waiting is hard.
Went for a walk around the harbour today. Lots of ducks - including hooded mergansers - and a couple of sea lions. A slice of joy in the sunshine
Janky, I am glad you had your dream trip to Oz!
I will keep you posted.
❤️
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Scare tissue - good one!
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Waiting for results sure messes with your mind...I think we all jump to the worst case to protect ourselves. I get CT scans every 3 months, it's how my MBC is being monitored and I usually work myself into a big knot the week before getting the results. Yes scanaxiety is real. To cope...I tell myself that the results are only information. Once I get the “information" I can make decisions, plans etc. I still get a mammogram on my remaining breast once a year. Yes it is part of monitoring.
If you don't mind, I would like to share a bit of wisdom living with this dreadful disease. My MBC wasn't found on my annual mammogram or in a CT scan. It was found on a chest X-ray that was done to check out a cough. Yes completely random. So my advise is that the monitoring is important but also pay attention to how you feel. Are you more tired, have a cough, have weird aches...it's hard figure out what is the new normal and what is weird. I keep a journal to track how I feel, track what's changed. It's all information.
On a happy note, my last CT scan shows that after 6 months of low dose Taxol, 2 out of 3 tumours disappeared. The remaining tumour shrank even further. I am considered stable which is terrific news. I’m back on an AI in the hopes that it will starve the last one. Yes I am more easily tired post-chemo and my feet hurt more from neuropathy but I actually feel pretty darn good.
I live in east Van and would be happy to host a gathering if you would like a more central location. We have lots of room and a big dining room table. I’ll be back from our Australian/New Zealand adventure in mid-February so early March would work for me.
Be well,
Ann
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Hi, Ann
Thanks for sharing your experience and wisdom. It is good education to some of us still learning about this. I am going to take your advice and learning to be more in tune with my body, know what is normal and what is not.
Great news on the latest scan! Sounds like Taxol kicked butt. That is great!
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Pots that is such great news that the Taxol is working for you. Everything is going in the right direction. Now you can breathe and enjoy the holidays. And get ready for your big trip!
Taxol was originally derived from the Pacific yew tree. There is a yew growing along the path where I often walk. I like to pat the trunk as I go by. I love the fact that some of these treatments have come from natural sources.
Good advice to monitor how we are feeling.
I had my recall mammo yesterday and the spot in question did not show up! They said it might be an “anomaly". I have an ultrasound on Monday to check. (I was able to get an earlier appointment at BCCA than at X Ray 505.)
So far, so good, and I asked for way more info before I left the clinic. This time the tech was willing to talk to me. Seeing the two scans on the screen helped a lot. She said last time they may not have told me much because it was my first 3D mammo and they need more time to study the images.
I have heard that ultrasound monitoring is best for dense breasts and alternating mammos and ultrasounds is a good idea, say every six months. Even if you have to pay, ultrasounds are just $100.
Does anyone rely on regular ultrasounds for monitoring?
As for another get together, I am in and will go anywhere! All being well, we will be in New Zealand until mid March, so I hope it could be after that. Thanks to Marian, NVDobie and Pots for all offering to host.
Marian, how are you doing on the chemo?
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Hello friends, I'm having a meltdown about hair on the hair hair hair thread https://community.breastcancer.org/forum/69/topics...
It's been months since I've cried about anything but I cried about my hair last night. stupid cancer.
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Hi Moth, I'm so sorry to hear about your experience. Wanting to turn back time is a heart wrenching feeling. I really do appreciate your sharing your experience with us. Even through your own pain you are helping others. Thank you. I've been very frustrated with how my hair has come back grey when it was not like this before the diagnosis. I've been thinking about shaving it again but have just resolved to leave things be. But I wish I could just look (and feel) like my normal self again. It will take time but one day things will be better. Take care Moth. Truly, I was taken back by your inner and external beauty when I saw you. xxxx
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Moth, I have had hair meltdowns over the past 6 years but this time I decided to do this. I have read that hair should come back and mine did though over the years with AI's, age etc. It has certainly got thinner but somehow this time I just had to go wild. Mohawk with colour today. I had my second Paclitaxel IV yesterday and expect to lose my hair in the next week or so. Fun!
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Moth, I wet to the hair site and saw what happened. I had the exact thing happen when I was in my 40's and had to pick up kids from school with orange hair then went back and had the same thing done as you. I ended up with a weird reddish colour that just had to grow out. I have never had colouring done again except this washout stuff. What do you think about having it buzzed short before you go back to school?
I had some rough weeks of late but last Sunday I posted on my blog and decided to try harder not to be so angry, sad, in denial and the week went better and then Paclitaxel yesterday and not knowing how it will affect me as I go forward, I did the mohawk with colour. Made my day.
I hope you can find something fun to do with you hair.
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Oh Moth I'm sorry the hair colouring turned out that way. I agree with Van2018 that you are a beauty inside and out. Oh She Glows. That's you!
Marian that is a wild hairdo! Love the cheeky smile and glint in your eye. What a fun thing to do!
❤️
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Happy New Year! Wishing you all the best in 2019
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Happy New Year Walden and all BC BCO sisters. My very best wishes for happiness and good health in 2019 and beyond. Hope to see you again soon!
❤️
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Hi,
I am quite worried. Four-five weeks ago I found a lump and I had a diagnostic mam and an ultrasound on Friday, I have a appointment with my family doctor tomorrow for the results. The technicians were super nice but had that quiet, worried expression that I remember from when I had complications with one of my pregnancies. I go in to see my family doctor tomorrow for the results. I am in Kamloops. I don't know what next steps might be but does anyone have doctor recommendations? I should be ready with some names, I think, in case the news is not good tomorrow. Thanks for any help.
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