.....And Another 6 Months!

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OntarioGal
OntarioGal Member Posts: 2
edited March 2021 in Not Diagnosed But Worried

Thanks for allowing me to join the group. I've been following the site for a while and am impressed by the amount of knowledge and mutual support. Hoping to get some insights from those who have travelled this road, and apologize in advance for the length of my post.

I have a lengthy history of benign breast findings (mostly cysts) but not many in the past 10 years. I'm 61 and postmenopausal, no HRT. Feb 2020 I found a lump in left breast 1 o'clock, small and pea-sized. Due to COVID, my annual screening mammogram was cancelled and my GP's office was closed. I decided to wait it out for a few months, but by May it was still there. Saw GP, she felt it and estimated 2 cm. Imaging finally happened in June. Mammo clear, US showed 2 cysts and a suspected lipoma (area of lump). Follow-up imaging in December: mammo still showed nothing, but US now shows a new finding of suspected intramammary lymph node in addition to the previous lipoma and 1 cyst. I have both reports, and the description of the lymph node is scant except for size (8 mm), Birads 3. I requested biopsy or referral to surgeon, GP refuses and says it is not warranted and too small to biopsy. She will repeat imaging in another 6 months to ensure things "remain stable". I countered that things weren't "stable" from the imaging in June….the lymph node is a new finding. Her response: "but the good news is that your mammogram was clear!". WTH?? I have had an intermittent dull ache in the area of concern for months, but she tells me it's likely a muscle strain. Lump is still there. Ugghh…

Some background: 2 sisters diagnosed with breast cancer, 2nd one was diagnosed at age 70, first one was diagnosed at age 42. My GP said the 2nd one "doesn't really count" re: risk elevation because she was 70 when diagnosed. In terms of other cancers, there are 7 primary cancers in 5 first degree relatives (parents and sibs). I cared for palliative mother and sister who were both diagnosed so late there was no treatment for them (lung cancer); they were gone a year later. Did this permanently scar me and make me cancer-phobic? You bet.

I am new with this GP - my previous one (I had been with him for decades) retired 2 years ago. He always trusted my instincts. I don't have much confidence in my new GP as she has dropped the ball on a few things around diagnostic and surveillance testing. I am unfortunately stuck with her because in Ontario, you don't get to choose your primary care provider, you get who you get. I can't even self-refer to a breast clinic because it's all run by Cancer Care Ontario and accessed via physician referral. If the borders were open, I'd self-pay and go to the US! I'm in rural Ontario, and our imaging centres aren't the caliber of those in Toronto or Ottawa.

My question…..Should I be pushing harder? I know that 98% of Birads 3 cases are benign, but I also look back to my mother's and sister's cases of delayed diagnoses. I can't help feeling I should be listening to my gut feeling that something is very wrong. Thank you for any advice!

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited March 2021
    Just my opinion based on my lack of diagnosis after a negative mammogram and ultrasound, keep pushing. Mammograms miss finding malignancy about 10-20% of the time. Your family history should not be ignored.
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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2021

    Inframmary lymph nodes within normal size and appearance limits are a normal finding and are just noted in the report as being visualized. Some radiologists are more diligent about noting normal visualized “findings” than others, so it may not be new. I had a biopsy for “cyst versus inframmary lymph node.” When I got there and got to ask the radiologist questions, it had indeed been on imaging before, but not noted. I was aggravated and told her I would have been happy with short term follow up. She said she would have been too, but since I was already there we proceeded, and of course it was a cyst. My understanding is that ultrasound is pretty good at distinguishing between normal and grosslyabnormal appearing lymph nodes.

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited March 2021

    Welcome OntarioGal! I hear your worry and frustration. I do not know anything about the medical aspects other than biopsies are typically not done on Birads 3. What I really wanted to share was regarding your family history of cancer. I have a similar family history and thought that likely meant some kind of genetics was going on. I lost both parents and three siblings to various forms of cancer. I also have aunts on mother and father's side (5 of them) with breast cancer with 2 of them dying from it...a 3rd died from breast cancer treatment. I had genetic testing done - a very large cancer panel so not just breast cancer related. Nothing showed up except a variant that may put me at greater risk for colon cancer though that is already being watched b/c I had a precancerous finding 5 years ago. The genetics counselor told me family histories like mine are typically "coincidence" esp. where lung cancer is involved b/c it is more environmental in most cases.

    I don't know if you'll be able to find a way to get imaging or something done sooner as you would like. I would also add that 6 months screening again is not unreasonable and is a way of keeping a closer eye on things..... I wish you well!

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  • Shar2020
    Shar2020 Member Posts: 234
    edited March 2021

    Hi OntarioGal,

    It’s understandable you feel concerned. Just so you know for future follow up, you can self refer to the Ontario Cancer Care’s breast screening program at any location of your choice. Also, two sisters of any age with breast cancer qualifies you for annual screening. There is more information at the following link:

    https://www.cancercareontario.ca/en/guidelines-advice/cancer-continuum/screening/breast-screening-guidelines-summary

    Did someone tell you that in Ontario you “don’t get to choose your primary care provider, you get who you get”? Contact the Ontario College Of Physicians & Surgeons or check their website to see who is accepting new patients. As far as I know, you can still choose a family physician or general practitioner. The challenge may be in finding a doctor in your area who is accepting new patients. Hopefully, you do not have to settle for this doctor, if you would prefer someone else or want a second opinion.

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2021

    You need to find a new GP. I'm in Ontario and as Shar2020 said, you absolutely can pick your own GP. If you are in a small town, the issue might be lack of choice - but that can happen in any small town anywhere.

    You are right that this 6 month follow-up did not show stability - even if the radiologist believes that new finding is quite clearly benign. With your family history, I think a second opinion from a breast specialist would be a good idea. The recommendation might be the same, another 6 month follow-up, but a second set of eyes on your situation makes sense.

    By the way, your GP is wrong about your sister diagnosed at 70. If she had the only case of breast cancer in your family, then it likely wouldn't count for much. But in the context of another sister being diagnosed at age 42, a second sister having cancer, even at a later age, is relevant. Has anyone in the family had genetic testing?

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  • OntarioGal
    OntarioGal Member Posts: 2
    edited March 2021

    I'm so grateful to all who responded. Your suggestions and insights are much appreciated and I pursued these over the past few days. Re: the question on genetic testing, neither I nor any of my family have ever had it or been offered the opportunity.

    Re: new GP, I tried the CPSO website but they don't allow me to filter for docs who are accepting new patients. I called 4 local offices yesterday at random, and they all told me to register with Health Care Connect to be placed with a GP, but HCC requires that I be without a GP in order to register, meaning I'd have to quit my current GP. Not sure I want to go back on the 2 yr wait list again and rely on walk-in clinics for Rx renewals and other diagnostics.

    I am already registered with Ontario Breast Screening for my annual screening mammo, but I can't self-refer there for a diagnostic mammo. I researched some Toronto breast centres online Toronto (UHN, Mt.Sinai, Women's College) and they say I need MD referral. I seem to be caught in this crazy endless loop of "you can't get there from here." I actually work in the medical field and thought I knew how to navigate it, so this is beyond frustrating.

    I think my best option at this point is to push my GP for a second opinion. By the time she gets that lined up, my 6 month imaging will be due anyway. Aagghhh!

    I'll provide an update as the saga continues.....again, my thanks.


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  • LivinLife
    LivinLife Member Posts: 1,332
    edited March 2021

    What a stressful hassle OntarioGal!! You certainly have done quite a bit of footwork... Sounds like returning to your GP for the 2nd opinion is your best option at this point - like you said. Definitely update us again with any new developments - whenever those occur. I do hope things happen more timely than you're preparing yourself for.

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