Posted by Susanb on Dec 3, 2019 3:48 pm
Posted by Veryhappilyretired on Dec 3, 2019 10:18 pm
I was diagnosed with invasive lobular cancer in August of 2018. I had my original screening, ultrasound and biopsy in a smaller centre and then went for consult in London, Ontario. There they did a new biopsy and mammo on both breasts (with more sensitive equipment) even though only one breast had shown cancer. This confirmed that only one breast required surgery. I had a lumpectomy and radiation. An Oncotype DX test showed that I wouldn't benefit from chemotherapy but would have to take anastrozole for 5 years. Fast forward to a year later and I had mammogram on both breasts which showed no cancer although I have some mild swelling going on related to the radiation treatment. In your case I am not sure why they wouldn't be checking both breasts. I definitely understand why you want to ask your doctor for more imaging.
The following info comes from the American Cancer Society website: "Most experts recommend that women who have had breast-conserving surgery or BCS (sometimes called a partial mastectomy or lumpectomy) get a mammogram of the treated breast 6 to 12 months after radiation treatment ends. Surgery and radiation both cause changes in the skin and breast tissues that will show up on the mammogram, which might make it harder to read. The mammogram done at this time serves as a new baseline for the affected breast. Future mammograms will be compared with this one, to help the doctor check on healing and look for signs that the cancer has come back (recurred). You should have follow-up mammograms of the treated breast at least yearly after that, but some doctors may recommend that you have mammograms more often. You will still need to have routine mammograms on the opposite (untreated) breast as well." italics mine
It would be good for you to have the assurance of knowing that everything is just fine.
Posted by FireflyNS on Dec 4, 2019 3:59 pm
Posted by Susanb on Dec 5, 2019 6:21 am
Posted by gogirl on Dec 5, 2019 11:33 am
you have dense breasts. Research indicates mammograms miss picking up tumours on a regular basis. After what I have gone through and knowing what I know now, i would insist on an ultrasound as a minimum. Mammograms are a waste of time on dense breasts. I would even pay it myself. If they refuse I would try another province or the US. I feel uncomfortable about your oncologist’s understanding and attitude. I got my oncologist from my surgeon’s recommendation. Could you speak to your surgeon about seeing someone else? One thing I’ve learned is you have to push for yourself or you will be lost in the system. That doesn’t mean yelling or anything, but be insistent. With dense breast tissue you need to be concerned. We are being diagnosed unnecessarily late. In my case I have to thank the lobular cancer for finding the ductal cancer before it unknowingly grew to stage 4!! Thanks for reaching out. I read this site regularly, although never posted. It is a great help
Posted by Lianne_adminCCS on Dec 5, 2019 12:28 pm
If I am reading your post correctly, it sounds like you feel like you are not being heard. Perhaps you might feel better with a second opinion. Getting a second opinion is not uncommon and can be for many reasons.
I am going to link you here to a section on cancer.ca on second opinions. http://www.cancer.ca/en/cancer-information/living-with-cancer/your-healthcare-team/second-opinions/?region=on
I hope it helps. Regardless of what treatment plan you end up going with, you need to be comfortable with it and make the decision with as much knowledge as you need to come to an informed decision.
We cannot offer medical advice but talking to another medical professional may put your mind at ease.
Wishing you well as you navigate this process
Posted by ashcon on Dec 5, 2019 12:40 pm
Susanb I would agree with the others and explore how to get additional imaging done (even if at your own expense) to get peace of mind. Going back to your surgeon may not be a bad idea. I live in Ontario as well, and my surgeon proactively ordered an MRI on both breasts halfway between my chemo treatment - even though the cancer was just in the R breast. He wanted to get some baseline images and wanted to ensure the chemo was doing its job. (which it was)
Another thought...we often forget that our GPs are part of our medical team, even during our cancer treatments. I can't recall if you indicated if your GP is someone you like & trust, but you could approach them with your request for additional screening, if the surgeon doesn't come through for you. You could explain your situation and your concerns, and if they can't secure an MRI for you, then they could probably make a case for getting you an US at least.
As gogirl says, you don't have to be a yeller or screamer to have your voice heard, but don't give up self-advocating.
Posted by Susanb on Dec 5, 2019 1:27 pm
Posted by gogirl on Dec 5, 2019 3:04 pm
Posted by ashcon on Dec 5, 2019 3:55 pm
It's funny (NOT!) that it is when we are at our weakest moments that we must don our gloves and fight for what we know is important to us. But you said it....you will regret not doing so.
For what it's worth, I was (am) treated in South West Ontario at Grand River Hospital. But I don't think that matters. Sometimes I think the variance in treatments we get from our doctors (and nurses, too!) is simply chalked up to the fact that they, too, are human. And they, too, have bad days like the rest of us.
With that in mind, it is really important to have a positive, trusting relationship with your doctor. Your life is in their hands. In one appointment I had with my oncologist, I was honest with how I felt our relationship was going at one point. I said "Last time we met, I felt rushed, and I felt I didn't get all my questions answered. I know you're very busy, but I would feel more at ease if all my questions and concerns were addressed when we meet. How can we fix this? Would it help if I wrote down my questions ahead of time for you to review before we sit down?"
When I took this "partnership" approach, she chilled out and became a real aly - someone that really had my back later when I needed an intervention with the surgical team.
There are standards of care when it comes to screening, diagnosis, treatment, surveillance, etc. This page from Cancer Care Ontario has some good information and may be of help for you.
CCO - Guidelines and Advice/Modality of Care/ Imaging/Breast
gogirl I love this:
I managed to change my extreme frustration with the system and the changes in my life, along with panic and fear, into more of a decisive resolve to get hold of myself and resolutely deal with what I still consider unacceptable , calmly and vigilantly.
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