Canadians in British Columbia
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Hi Bluesky, That is a lot of information for you to process and many of us can only say what worked for us which involved many considerations that vary.
I will start with mine. I chose mastectomy to avoid radiation complications and chose not to have reconstruction. I didn't care about reconstruction and that was very likely because of age (66) and living alone and not really concerned with appearance. My main reason though was fear of pain. I had heard the recovery was not easy for some (People who sail through often don't visit forums). Mastectomy alone was relatively pain free for me. I was using plain tylenol by day 2 and not for that long. It was a nuisance having drains but most people get those out fairly quickly.
I wonder if your recovery from that would be affected by auto immune things?
I guess you should first decide whether you want reconstruction (not an easy decision) and if you are really torn then waiting 5 years might be a good option. I think wait times could very well improve so it might not be as long as 5 years.
This is a quiet forum so I am hoping more people come along with their experiences soon. Check outside the Canadian threads too.
You can change to the VGH doc if you want Dr. Mcadam. I have heard good things about her as well. Not sure about the MSJ PS but hopefully someone hear knows something.
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Bluesky. Both peter Lennox and Sheila macadam are affiliated with ubc reconstructive plastic program and are very involved with it. Both are highly recommended. Noelle Davis worked with Peter for my double mast.(he was head of plastic then not sure about now). with immediate implants. I had no troubles. Ask about diep procedure. It's were they take fat from your stomach and make a boob. It's one of the most natural and advanced plastics for recon out there. Long surgery. Not many dr do it in Vancouver. Maybe only those two, not sure. It’s been a long time since I talked plastics.I would want diep if they offered it to me but it was brand new on the market when I had recon done and only just available in Toronto( with one dr only doing)where all new procedures seem to make their way out west eventually.
Unless they train more reconstructive plastic DRs your wait could be long if you don't take immediate reconstruction.its hard to get Drs to do these types of surgeries, training is years. It took dr Lennox a long time to get macadam lined up. I think she was on van island and he convinced her to come to van. Before that a beloved plastic surgeon that worked with Lennox. I think her name was Patricia cluggson if my memory serves me right, died of a terrible disease and it was such a great loss to the reconstructive plastic community.
I called a few months back and dr Lennox Sec said it would be yr and half wait for me to see him about simple fat graft fill. Too long of a wait I'll just leave things alone.
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Quick comment re reconstruction. I chose it and it did not go well both attempts. However looking back I did choose it. Not sure who says you have to go with PS who works with BS at MSJH. My BS did my lumpectomy at MSJH but I told her who I wanted and she arranged to do my mastectomy at UBC with Dr. Lennox following after her part was done. I would not choose him as he is head of plastics and even when we are in his system the waits are very long.
I am not one for regrets which is why I have managed pretty well over the years but if I had it to do over I would have just had the mx which is what I have now and like just fine!
G'night!
Marian
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Hey everyone, I'm a newbie to the forum. The Canadian Cancer Society website doesn't offer much information, and most of the books I have read are at least 10 years out of date. I was delighted to find breastcancer.org with up-to-date info, and this forum, and the BC thread.
I'm a SAHM of 6, grandma to 8, Kindermusik and Simply Music Piano teacher, empty nester. Eighteen months ago we moved from Burns Lake (north central BC) to Courtenay on Vancouver Island to be closer to the kids and grandkids. I'll be 66 next Tuesday.
In mid-January I found a small lump in my right breast. A biopsy showed it to be malignant. On March 20 a surgeon performed a partial mastectomy and sentinel node biopsy. The lymph nodes were clear, but the cancer was "ductal in situ". Two days ago they took off the rest of the breast. Everything happened so fast, I am still processing it all.
I am trying to look on the bright side. The cancer is gone, and I don't need followup radiation. I can have reconstruction down the road, if I decide to take that path. I was able to have the surgery locally (diagnosis in Burns Lake would have meant long journeys to Terrace, Prince George, or Vancouver for treatment!) I will be around to watch my grandkids grow up. My husband still loves me, and my cat could care less as long as I feed her.
What is really preying on my mind is that I might have avoided this mess had I been more diligent about regular mammograms. "Ductal in situ" is a slow-growing cancer with no visible symptoms. It can be spotted in the early stages via mammogram, when it can be removed by a relatively noninvasive procedure. I had a baseline mammogram in 2012 when I turned 60 (on my doctor's insistence) but didn't bother after that. I was complacent because I believed that I was in the lowest risk bracket (6 pregnancies, nursed my babies 1 year or more, early menopause). I used to joke that my breasts were "too small to squish between glass plates".Anyway, thanks for listening. It's good to be able to talk about it.
Bless y'all!
Magpie
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Welcome MusicalMagpie to this forum. There is lots of good information here and gentle support.
I know what you mean about missing mammograms but with a small Grade 1 DCIS like yours, it might not even have been visible until recently. That's what the radiologist told me.
I missed two biennial mammograms simply because I relied on the “system" and I didn't think about it. We are supposed to get reminder letters from BCCA or at least a question from our doctor but I got neither despite annual check ups at our rural health care centre. On top of that, there has been very little publicity about mammograms during the recent merger of BC Breast Cancer Foundation with Canadian Cancer Society. Then there is the ongoing medical debate about whether or not mammograms are even a good idea which leaves many women confused about what to do, or at what age to stop.
I was also very upset that I didn't get my scans and am actually talking to CCS about a renewed awareness campaign in B.C. I think many older women skip mammograms because they think it's ok to stop.
It sounds like you have an excellent prognosis. Good luck with your healing🌷💐🌸!
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Hi Magpie & welcome!
Look forward to getting to know you
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Magpie it is late here in Victoria (not far from you) but quick note to say that mammograms are not great, especially for some breast, dense being one type. I had a mammogram 7 months prior to finding my lump and my return letter said come back in 2 years. Never beat yourself up. Dr. Susan Love's "Breast Book" has a good section on that subject. You can likely borrow it from your library though I bought it and consider it a Bible on breast cancer. She wrote the first editon about 28 years ago and she does an up-to-date redo every 5 years.
Now, 11:01 and I am exhausted but feeling good e even on this rainy night.
Good night to all my BC/BC friends.
Marian
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Hi. Thought i would join this thread. I am just about out the door of the victoria cancer clinic. Just started with letrozole a month ago. Generally i am doing ok with it. More aches and pains but still working on being more active. I can't say that i have had the best care in my cancer journey here. My cancer did not respond well to the chemo. No PET/CT scan or any other monitoring during chemo to see if it was effective. The counselling department sucks - i've had better lay counselling! I don't think that I really have a "team" for my care. I seem to have to advocate all the time for case management, wait lists, and discussing options outside the cancer agency box just is not allowed. There are no other options for second opinions - i have just found this whole experience frustrating. I will actually be glad not to go back to the clinic as i feel like the experience has been so shitty that psychologically i hate going into the building. I would like to get treated elsewhere. Anyone else experience frustrations with the bc cancer agency and oncology in general in our medical system? This is my first serious illness and what an eye opener to our health care system.
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Welcome all, just chiming in on mammos, I was diagnosed at 45 but they figure my cancer was there since 35. My dense breasts hid the slow growing cancer and it really didn't present as a lump but more like file folders stacked up. I don't know why they don't routinely mammo and ultrasound dense breast tissue. There is a very little chance it would be discovered by mammo alone. My daughter has dense tissue as most younger gals do. Something is wrong with this kind of a hole in the screening program.
Roaming star. You can always say your not comfortable with your onc and change. It's sad you had a bad experience with such a terrible disease.
Also the head of counselling needs to know their services were not up to your expectation.
Yes our health system can be mind boggling. That is why I keep good notes, all my tests, etc in a binder for reference and I advocate for myself.
My main problem with bcca is that they really don't like complementary approaches.My onc voiced his displeasure when I let him know I was seeing a naturopath and a cancer TCM doc that actually had a grant or something like that with bcca Ions ago but then moved on once the grant was done. He was so opposed that I didn't ever mention it again.
Other than that I had real good service, I showed up one day at the booking desk, real sick without an appointment, my onc wasn't there and I had super low white cell count but I didn't know that. Bcca arranged to have a onc look at me that very day and popped me into hospital for a couple days to give me white cell boosting med.
I also come here and learn from other gals experiences and they guide me to.
I'm glad your done treatment. Yippie! You Just got to finish those nasty AI's.
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Hey BC/BC gang! Not long since I posted but have to say this past week has been way better than the previous. I never know what is the turn around but this time I started yet another journal, hand written with left hand and just for judging exercise and mood. I wrote the first blog post in 2 months and that felt good. If anyone is bored the link for it is at the top of the personal data.
I went from 50 mg of nortriptylene to 25 mg a week ago and can feel the fog lifting. It was another trial for my nerve pain and did not work so waning off. I asked my Van MO for advice on changing MO here in Victoria and after trying her advice from a month ago, she made the change happen and I am excited for my new and younger woman MO who I see April 30. The plastic surgeon/physiatrist team I saw Tuesday was unable to help me but were lovely nevertheless. I am being referred to a specialist in nerve blocks and I will see the physiatrist in May.
Today, two friends from the last trek I led in Nepal last May made a big effort to visit. One was visiting her daughter and family in Tswassen and the other lives up island. They worked out meeting up and getting to my house for tea and a long and leisurely walk. This is on top of an outpouring of support on Facebook via my blog.
And Hugz4u, I love the UBC study! I feel truly blessed to get 19 hours of Virtual Reality over 4~~6 day weeks to see if distractions work and/or cage the cognitive parts of the brain. They brought all the equipment over last weekend and I have tomorrow off. What an incredible opportunity if you have had/have BC and have a pain score of 4 and above on a scale of 1-10.
Marian
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Hi All,
I just want to chime in to say that over my 17 years of experience with the BCCA I have had excellent care. It wasn't always perfect but I have felt well cared for throughout my journey. Hugz, your comment about complementary therapy is interesting as my MO is very supportive of alternative therapy. His only concern is that he wants to ensure it is not toxic and that it does not cost me a fortune. He went so far as to write to my naturopath to ask questions about what he was targeting with his suggested treatments to help me to make a more informed decision which I appreciated.
Roaming Star, how do you know that your cancer did not respond to treatment? Typically initial treatment does not involve scanning as it is extremely unlikely that anything would show up unless you are Stage IV at diagnosis. The problem with BC is that those small, undetectcells migrate and sit inactive in your body until something triggers them to grow. This is what happened in my case. I had no evidence of disease (and did have a couple of scans over the years when I had symptoms) until many years later, when almost 16 years after I was originally diagnosed I had a right pleural effusion.
I wish you all health and happiness as you put this behind you.
Hugs.
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Hi Musicalmagpie, glad you found the site. It really helped me both for information and for not feeling alone in this. I hope you will return and keep us updated on how you are doing.
Hi everyone else too. Is anyone else tired of the grey days? I would like to see some sunshine. It makes such a difference.
I finished the UBC study today. The 4 weeks flew by and I really think it made a difference. I found two of the weeks challenging (because I wanted to win even though that wasn't the objective) but fun. I had never picked up a joystick/controller so by week 4 I had it down and it was fun to navigate through the games. I really did notice a decrease in pain during.
The meditative walk week actually put me in a good mood and that always helps with pain. The two guys setting up were great too and fun to talk with.
Take care everyone. xo
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bluesky1969
Do you know your recurrence risk? With and without radiation? Maybe ask radiation Oncologist what is the risk of cancer recurrence without radiation?
Is chemo in the plan or not? Have they asked you to do oncotype test? That is normally used for determine chemo effectiveness but analyze recurrence risks.
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just chiming in on the mammos - I had a clear mammogram in June 2017, biopsied positive for IDC in Nov & removed at 1.7cm in Dec. That sucker either grew super fast (possible as it's Grade 3) or it was there & missed.
I do kind of wonder if anyone has gone back to look at the June films to see if it was there....
And speaking of screening - I posted this yesterday on my Feb chemo thread but want to share it here too."Just saw the new guidelines for breast cancer screening from the American College of Radiology, published March 2018
They're recommending breast MRI for us if we have dense tissue or diagnosed by age 50."Breast MRI is also recommended for women with personal histories of breast cancer and dense tissue, or those diagnosed by age 50."
Full text here https://doi.org/10.1016/j.jacr.2017.11.034
summary write up at DenseBreast Info is here: http://densebreast-info.org/higherthanaveragerisk.... "
I don't expect msp to start covering this so I think I will opt to pay privately, unless my doctors make a really good argument that these guidelines are too aggressively in favour of breast MRI.
Glad to hear from all of you.
Marian, esp nice to see you back and feeling better and had a lovely visit with friends. Hope the new members of your team are brilliant & find effective solutions for you. -
On Mammo
Has anyone used tomosynthesis 3D mammogram? I asked my MO when I first met him regarding the accuracy of Mammo when it comes to dense breast tissue, he said he will order Tomosynethesis.
Any thoughts?
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also a quick question about chemo.
Any of you ladies were or are on TC for chemo? How many sessions you were prescribed?
I have 4 sessions planned and half way thru. One IV every 3 weeks. One of surgeon I met ( 2nd opinion surgeon for my margin re-excision discussion) seem to think it is short.
Also seeing some our Americans peers are going thru 16 session for Similar diagnosis. Just wondering whether BC has a accelerated dosage or what have you.
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About regular mammos and missing them...
I have had people shake their finger at me when I tell them I had gone 9 years between mamms. Tut tut, you were a bad girl and didn't have a mamm every other year and look what happened, you got breast cancer, shame on you!
I have actually has this go-round with my mother who mutters under her breath that I should have kept up my mamms and I tell her DETECTION DOES NOT EQUAL CURE!! Somewhere in her mind FINDING cancer is the same as CURING cancer and my research tells me that just ain't the case! Also in her mind is magic thinking. Magic thinking says that by looking for something (cancer) you prevent it from showing up and that cancer only shows up to those lazy people who do not annually look for it. This is a belief held by many without them even knowing it. Examine your own thoughts. Have you ever said, "If only I'd had that mammogram..."
As I see it, in some cases, early detection gives you better chances at a better outcome. But in other cases early detection doesn't help. For some of us finding it early will stack the deck in our favour and others, no. So do not waste a sinlge breath beating yourself up over missed mammograms. The outcome of your cancer battle is dependent on so many other variables that early detection fades quickly in the treatment plan. Early detection is one bullet in the gun that fights cancer, but it is by no means the biggest bullet or the bullet that does the job. Breast cancer cannot be eradicated by early detection. If only it were that simple!
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Yes. That. ^^^^
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Well said Runor.
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Early detection does not equal cure but it does mean easier treatment for many women. For the most common types of breast cancer, early detection can mean lumpectomy instead of mastectomy, avoiding chemotherapy and less lymphatic invasion.
It bothers me that the national goal is for 70% of women to have regular breast screening, and we have never achieved that. Only 52% of B.C. women who "qualify" for screening had a mammogram last year. Mammograms miss many cancers, but they find a lot too and are the best tool we have right now.
We also need new detection methods to detect abnormalities in dense breasts.
I do not blame women who miss their screening. There is confusion and the reminder system is not effective. It is wracked with debate about false positives and efficacy which is really about cost-savings.
But better treatment is also desperately needed. I support both better detection and better treatment for all of us.
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DearLife, I agree. Despite the debate about the pros and cons of mamms, they do seem to be one of the best tools we have right now.
However I disagree that early detection leads to easier treatment. Whether you have a lumpectomy versus mastectomy hinges on MANY factors, including your geographical location (many more women in the U.S. seem to have mastectomies for smaller tumours than here in Canada, U.S. does more mastectomies for DCIS than Canada) the opinion of your surgeon and doctors and even your own reaction and feelings. Age has a lot to do with lumpectomy vs mastectomy. Chemo and radiation can happen for early and late stage cancers and neither are 'easy'. So it is too broad and not quite accurate to say that early detection leads to easier treatments. It might lead, in some cases, to more treatment options, but early = easy is an oversimplification.
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good morning all! Oddly enough I came to the realization that no matter how many mammograms I had, or didn’t have, I was still gonna get cancer😟 so no point beating yourselves up for missed ones! I agree that in some cases treatment may have been less invasive, in the end though cancer seems to find its way back into us whether it started at stage 1 or stage 4...just try and enjoy each and every day!😃😃 when spring arrives for real, that will help
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Thanks Janky. I agree nothing about breast cancer treatment is easy and we still don’t understand why it recurs.
I also hope soon we will have Spring 💐!
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Janky, you are so right! If cancer is going to show up, it's going to show up whether you have regular mammograms or not.
Way too many of us think that being vigilant in some way safeguards us against getting cancer. It is a very sneaky belief that cancerless people often hold. They make a WRONG equation in their brain and it goes like this: I have a mamm every year, I do not have cancer, therefore having a mamm = keeping cancer away. And then to further their position they add supporting statistics: Runor did NOT have a mamm every year and she got breast cancer! But they blatantly leave out reams of evidence that would blow their theory up, that evidence being that you can eat right, exercise, wear pink, donate to boob charity, cut off your hair and make a wig with it, have no family history, have regular mamms and do self exams and YOU CAN STILL GET BREAST CANCER!!! The random nastiness of this reality is too much for most people to cope with, so they shut out the truth and cling to their belief that they DON'T have cancer because they are doing everything right and you got cancer because you forgot your mamm, stupid you, you did it wrong and no wonder you have cancer, duh!
The saying that 'early detection saves lives' is under heavy scrutiny and debate. It is a slogan, not a proven truth. It is a promotion, not a promise. It was written by an advertising agency, not a statistician. And despite this, having my own cancer when I had ZERO markers for it, out of fear I tell my daughter GO HAVE A MAMMOGRAM! Because it is better to find the monster and fight it with everything we have, than to not find it. The outcome of early detection is unknown. The outcome of no detection is certain. Mammograms (and upcoming technologies) are our first line volley in the war. Have a mammogram.
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Hi everyone,
Great conversation re mammograms! I had also read that in Ontario if you were high risk that an MRI was also recommended with your mammo. I was thinking of dishing out for a private one too if i can't get one included in my follow up care. My surgeon is doing my follow up care and he is an incorporated company so maybe more apt to order imaging? I have dense breasts (breast) too.
Sadiesservant - thanks for asking about how i know that chemo wasn't effective. I went from having two lymph nodes being positive on my scans before chemo to having 6 lymph nodes positive with macro invasion and metastasis outside my lypmph nodes. The original tumour in my breast did shrink from 2.2 cm to 1.6 cm - however the margins were clear before i did chemo so i could have done surgery first. Most chemo is not effective on highly positive hormone cancer (mine is 8/8 on the allred scale for both er and pr). Needless to say it was a mess when they went in there. Lots of studies are showing that for some chemo just causes the cancers cells to shed from the tumour and travel further along and set up camp. I think that is what happened in my case. No one told me that hormone positive cancer might not be treated effectively with chemo. It certainly didn't help me sitting around for 6 months having cancer sells circulate around my system while i was doing chemo. There is a forum on this topic if anyone is interested:-)
Cheers,
Roaming
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Roaming - do you have a link to the forum - is it here on breastcancer.org?
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MusicalMagpie,
I’m also scheduled for a mastectomy for a cancer that includes DCIS and IDC. Do you mind sharing what prompted the surgeon to do a mastectomy after your lumpectomy? Hope you are recovering well
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If anyone else is interested in the UBC pain study they still need people.
http://blogs.ubc.ca/arvrha/files/2017/05/Recruitme...
I just finished and it was easy to do and they pay $400.
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Anyone here have a mastectomy in the BC cancer agency building (600 West 10th). I have one coming up in the first week of May there
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