Any follow-up testing in Ontario?

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BorneoMom
BorneoMom Member Posts: 38
edited June 2014 in Canadians Affected by Breast Cancer

Hi,  I just had my 3-monthly app't with onc. Got clear results from the mammogram, and good report on the echo (because of Herceptin). I found out that I will only get a mamo once a year on my remaining breast--he said no increased chance of bc just because I had it on my right side. That seems a little strange to me--that my chances of getting it in the other side are no different than any woman who hasn't had bc.  Anybody know of anything different?  Or is that what your onc says?   I only have OHIP coverage and no funds to pay for anything additional that OHIP doesn't cover.  But I'd like to know if others get any other diagnostics/tests/scans out of OHIP.  Thanks for your help.

Lois

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  • rinna40
    rinna40 Member Posts: 357
    edited January 2010

    I go for my first follow up appointment on Tuesday. But I think that I've heard of women in Ont getting more follow up than whats been recommended for you. I'm sure some other ladies will post here, and I'll let you know what I find out on Tuesday

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  • BorneoMom
    BorneoMom Member Posts: 38
    edited January 2010

    Thanks, Rinna.  I should mention that I had a rt mastectomy with immediate reconstruction in Singapore on March 4/09, since I was living in Malaysia at the time and Singapore is close. My onc. there did a CT scan and bone scan before I started treatment, to give me a base line.  Everything was clear.  I asked my onc. here about a bone scan, or tumour markers in the blood, and he said they are unreliable. So he's not willing to do anything.  And because I'm HER2+ I think the chance of recurrence is greater in the next couple of years. I am seeing my onc. every 3 months--at least while I continue on the Herceptin, which will finish the end of April.  And it's because of Herceptin that I get the echo every 3 months.  I notice that we were diagnosed at almost the same time. Hope your app't goes well. 

    Lois

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Hi Borneo,

    I don't think most ontario oncs do any routine scanning after treatment.  Yearly mammos, maybe a breast MRI or ultrasound is about what they do.  They only scan if you have sympton.  My chance of new BC in remaining breast is 15%- about 1% risk per year, cumulative to 15% and about 5% risk on affected side.  I think that I also read that elsewhere so not sure it is related to me being Stage 3.

    Welcome back to Canada.  I will remind you about how much you missed winter in a few months.

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  • BorneoMom
    BorneoMom Member Posts: 38
    edited January 2010

    Hi thisisme. Thanks for the welcome, and the info. Wow, your chance of getting bc again sounds so low--that's great.  I'll have to ask my onc if he has any statistics like that for me. 

    Have a great day, Lois

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  • rinna40
    rinna40 Member Posts: 357
    edited January 2010

    Well, saw my onc yesterday (six weeks after finishing rads) and all he did was a manual exam of the breasts, but couldn't do too much to my bc breast because it is still swollen from rads. Thats is. He made another appt for me for 3 months from now and then an MRI and a mammogram in June. He also said, just yearly exams and self exams and thats it. I was hoping for more. Maybe some other ontarians can let us know what they do. I felt sort of let down. Also thought it would be smarter to stagger the MRI and the mammo so that I would be tested every six months. 

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  • lovemyself
    lovemyself Member Posts: 29
    edited January 2010

    My oncologist explained to me that the chance for another breast to have cancer is the same as other organ, that is no higher risk of developing cancer on the other breast. Cancer cells won't spread from one breast to the other. Unless there is genetic linked kind of cancer, that making both breasts have high risk of developing cancer but still there are considered as separate cancer. I had one breast having cancer and then on the course of treatment, the other breast also confirmed with cancer. I had bilateral mastectomy and immediate reconstruction. After one year follow up, I don't need to go back at all because I had DCIS instead of higher stage of cancer. I also had a genetic test done as I am under 50 and having bilateral breast cancer is considered as uncommon. It turned out to be negative. So there is nothing I need to do further.

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  • BorneoMom
    BorneoMom Member Posts: 38
    edited January 2010

    Thanks, Rinna, for the report from your visit. I sure can relate about hoping for something more. And it sounds like a good idea to stagger the mammogram and MRI. I'd suggest it to him at your next visit.  At least you get an MRI, though, so that's something!

    Thank, lovemyself, for your response. I'm glad for you that your genetic test was negative, and that you're all clear. That's great.

    I still wish there was some follow up with regard to the possibility of mets, especially since I'm HER2+. I'll ask my onc again in 3 months.

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  • Mantra
    Mantra Member Posts: 968
    edited January 2010

    I was trying to think of the stats I was told but I can't remember if it was: 1/10 chance of breast cancer in women, but 1/15 in women who have already had breast cancer. It doesn't make sense to me so I really think they must have told me 10% for people who haven't had breast cancer and 15% in my case. I do know they said that the % increases the older I get.

    I had a Breast Screening Gamma Imaging done in Naples Florida while I'm here for the winter. It's not available in Canada but popular in Europe and the US. It showed no evidence of cancer in my remaining breast. When I return to Canada, I'm booked to have a digital mammogram. I also had an ultrasound before I left to come down south. Again, it showed clear.

     I've decided to have a prophylatic right breast mastectomy regardless of results. Even though I have no family history, and am BRCA 1 & 2 negative, I just feel it is the right decision for me.

    I think my doctor said I would still continue to have mammograms even though I've had both breast removed. One doctor said I will have MRI. The other doctor said they have too many false positives and she doesn't recommend them. So I may just continue to have my annual mammogram and have the BSGI again when I'm in the US next winter.

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  • Kyta
    Kyta Member Posts: 713
    edited February 2010

    Hi ladies. I haven't had any tests since dx in Nov 09 (except for a chest xray pre-op to my left mx in Dec). I asked my oncologist last week about doing any other tests (beyond mammos) as baselines, but he said he doesn't recommend them as there are too many false positives. I don't think I'm very comfortable with his reply.....I'm not looking for trouble....but just have a nagging unease about it.

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  • BorneoMom
    BorneoMom Member Posts: 38
    edited February 2010

    Hi Mich.  I'm with you---don't feel comfortable with only have a mammo once a year. I understand that there may be a lot of false positives, but we're (unfortunately) not part of the normal population.  We're already dealing with the beast!  I'll need to get reading all the studies my GP gave me on the subject.  I'll let you know if I find anything useful that would encourage our oncs. to do something more. 

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  • Sig
    Sig Member Posts: 138
    edited February 2010

    Hi Ladies, I am three years post diagnostic with HER2+ and I only have yearly mammogram and I am fine with this now. At first I was very scared about not having other scans but the oncologist explained to me that getting extra radiation from the scans is not a good thing as well as the study did not show better outcome if mets are found earlier and that the treatment would be the same. I was a bit septic about his comments and asked the same question to my other oncologist and also did a lot of research and turns out that he was right and that we have to minimize the radiation exposure as much as possible, so now I prefer not having scans. I asked about MRI and they also don't do it because of too many false positive which in turn cause extra stress and anxiety which is not good either for us.

    Sig

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  • Kyta
    Kyta Member Posts: 713
    edited February 2010

    Hi ladies. Just wanted to update you on my appt last week with my onc. I again asked about doing tests, and he basically said that in his opinion, they're a waste of time (similar to what Sig described). I responded that it wouldn't be a waste of time for me if I slept better at night. So he ordered a bone scan (which I had 2 days later), while still saying 'but I'm telling you it's a waste of time, because I know that you're cured, but I also want you to sleep well but let's make a bet'. I saw the onc again this week and he told me that I lost the bet and owe him a bottle of wine at Christmas, which I will happily buy for him :)

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited February 2010

    When I finished chemo last week, my oncologist said he'd see me in 4-5 months and that I would be having an annual mammogram and regular physical examinations...no other scans or anything. I'm seeing my surgeon in a couple of weeks before I start radiation so I plan on asking him what tests, if any, he has planned for me.  I'm trying to figure out who my quarterback is and I think it's the surgeon but am not positive.  Because I'm hormone negative, I won't be getting anything by way of hormone therapy so I think the medical ongologist is probably done with me. Does anybody know who ends up being the main doctor afterward?

    Sherri 

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  • mke
    mke Member Posts: 584
    edited February 2010

    I think the main doctor depends on your circumstances.  On my first BC I had a lumpectomy and radiation, no chemo, and the rad onc. followed me.  I just saw the surgeon for one or two visits after surgery.  With subsequent BC it was similar but I had chemo and now I am followed by the med onc.  I've had a bilateral, no reconstruction so there really isn't much for the surgeon to be interested in.

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  • wallan
    wallan Member Posts: 1,275
    edited February 2010

    Hi there:

     I had my treatment and follow-up in Ontario. The mantra goes that scans, x-rays etc are not needed unless you have symptoms. I was told that catching mets earlier makes no difference to the outcome. It is your response to treatment that matters.

    I am 6 years out from diagnosis now. After chemo and radiation, I saw my oncologist every 3 months for 2 years, then every 6 months. This December I was told I can start coming yearly.

    At each visit I had blood work and a physical. If I had symptoms, I was scanned. I had lots of scans because every ache I had I was sure was cancer. LOL.

    I do have to have a mastectomy on my other breast yearly because I was told I have a higher risk than the general population for a new breast cancer. So, I would push that one if I were you.

    I go to the Juravinski Cancer Centre in Hamilton. Where do you go?

    wallan

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2010

    wallan, you "have to have a mastectomy on my other breast yearly"?    Shock 2  That must be awful!  I'm glad that I just have annual mammos and MRIs.

    Okay, I know it's a typo - you meant "mammogram", I'm sure!  Anyway it's been a rough week for me and reading your post, I had my first good laugh.  So thank you!   Winky 2 



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  • wallan
    wallan Member Posts: 1,275
    edited February 2010

    LOl LOL LOL .... Yes, I have my other boob cut off each year... LOL

    I mean a mammogram every year, of course.

    Wendy

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  • Sweetlander
    Sweetlander Member Posts: 10
    edited February 2010

    Hi,

    Congrats on being cancer-free or so long. I'm wondering if you are doing the hormone suppressing therapy and if so which one(s)? If you are/have, did you have nay side effects or misgivings about it?

    Thanks, Sweeetlander

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