Hi ladies, I have my coffee and read every morning all questions but barely ask questions. Today I have a question, I’m in Canada and get my basic 15 minutes with my oncologist. When I leave I ask for a copy of CT scan results. This time when I read it, all it mentioned was previous evidence of mastectomy. Report mentioned my lungs, kidneys and all the other things they say everytime on my previous CT scans which is all normal. This time they did not mention my tumour, the radiologist always puts size of tumour. When I went for my monthly falsodex shots I asked the Dr (not my oncologist) what the report meant, she said they can’t report what they don’t see and that was it. It seems it’s impossible to get them to give any info. Questioning them just came up with I don’t know. Anyone else get their reports without tumour mention. So strange, I know in the past 19 cycles of Ibrance it shrunk a lot, if it is gone why wouldn’t they mention NED, or something. Thanks for all you help. Great site to get info.
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CT Scan Results
Dear Griffie120,I don't know which province is where you reside.
In Saskatchewan, we can open a "My Sask Health Record" where we can read all the results of our lab reports, and CT/MRI/PET scans (as well as an automatic record of our prescriptions, clinical visits, etc.). These results are filed within hours of our having blood work or a scan done. I find it very useful to monitor my own test results, and then discuss these with my oncologist at our next telephone consultation if necessary.
I hope your province may have a similar system as it is very true that we are our own best advocates. Do telephone your cancer center, and ask for a call from your oncologist who will open your file before talking to you. "The squeaky wheel does get the grease."
Regards,
Cindy
Hi, unfortunately in Manitoba we don’t have anything online to access our records. I ask for a copy of my CT scan every time I see my oncologist. I could ask for my records it’s complicated and costs $15 for every 1/2 hour it takes to find what you are looking for.
My oncologist is like yours. I had nothing two times, for almost a year each time, since I was diagnosed in 2019. They never said that. When I pressed about why I was feeling so well, they said I had a "low tumor burden." I think my oncologist wants me to remember this is incurable; it is there (in my bones at least) and will rear up if I stop treatment or a treatment fails. I didn't realize I didn't have any evidence of cancer until the last treatment failed and the radiologist report said I had a "recurrence." That suggests to me that the radiologist, at least, thought I hadn't had cancer, or no evidence of cancer, but now it was back.
I get all my test results from the patient portal as soon as they are ready. It can be nerve wracking at times to have to wait days to talk to the oncologist, but I do come in with a list of questions and force her to talk about what I read. You should definitely go with the last scan to your next appointment.
Hi, yes nerve wracking waiting for results. I’ll have to ask her what’s going on as I’ve had the same radiologist since 2014, small town. I remember 2 scans ago she said the bump is not showing on the scans anymore, I thought she was talking about something else and didn’t question it.
I had something similar and I caller down to radiologist and asked him to sit with me and explain!! At first no reply then called the complaint department and I got him to explain..the whole thing...hope this helps!ROXANNE
We have a similar portal here in the Kentuciana part of the US (I live in Indiana on the Ohio R.) called My Chart. An app I can access on my phone & track my progress, but some of my blood tests or some scans will have a note saying "there are no components to these results." In a nut she'll, you can't view on this device. So I email my Onc's office with "?" Please explain? 50/50 time they get back immediately or some days later. Poor woman, her every day is booked solid min. to min. from open to close. I don't know about any where else, but we're overpopulated with a lot of cancer.
I appreciate your question. I have had four CT scans in the last year and every report is written differently. Some have measurements in comparison to previous reports and others don’t. Each radiologist puts their own spin on it, which makes it challenging.
I had a report that indicated that I’ve had a broken rib and a compression fracture and I’ve never had either that I’m aware of. And I’m pretty certain I’d know if I’d had an injury that caused either of those results.
I’ve had scans that show measurements of tumours and lymph nodes and then the next says the lymph nodes are ‘normal sized’. Like you, I wonder if that means the cancer is gone from those areas? And if yes, why not say so?
I’ve asked and my oncologist, who I completely trust, and she is most concerned with how my liver is managing because that is what is driving our treatment plan. so whether or not my lymph nodes are clear or my breast lump disappears, doesn’t matter as it doesn’t change the plan until things with my liver change. But I would like to know if there’s some progress regardless.
She said she’s happy to arrange time to go over the scans in more detail, and I plan to take her up on that after my next scan in early July. I’m actually going to go one step further and see if I can get time with a radiologist who actually writes the report.
With patient-centred care, I think it’s important that the Radiologists know that drs aren’t the only ones viewing these reports. Some consistency would be nice 🙂
Kim
Thank you for your reply, I’ll have to question my oncologist more when I see her in Nov. I’ve had the same radiologist since 2014 as I go to a small town for my scans. The reports are basically the same all the time, except this one.
I tried to get to the radiologist as well. Every report is written differently by different radiologists. It’s so frustrating! The reply I got was, “ They don’t work on site”. Ugh! In 2022 shouldn’t we have better access to our doctors and support people? Very frustrating.
Yea, same here. Every radiologist writes up the report differently,and shrinking or disappearing tumors or pulmonary effusions are under-mentioned or omitted in the reports. But anything growing gets super highlighted! In my experience anyway. So I guess no news is good news? Wouldn't it be nice if the good news was as celebrated in the reports though? 🙂
Well that appears to be the same here. In my 15 minutes that is allotted I basically get, nothing to worry about on the scan, you’re stable. But the scan for the last 7 years always mentioned the size of the tumour except this one. The scan before this one she said the “bump” isn’t showing on the CT scan. I couldn’t get a copy of the scan because of Covid and we did telehealth because I live in the country. Maybe I need to ask for all my CT scans from Manitoba Health and pay the price, then I’ll know better what’s going on. They really give no information unless it’s not good news.
Wow that is very terrible and sounds like the radiologists might not be that reliable... I hope you find a medical care team or some solution that does a better job at no additional cost to you! Wishing you all the best.
Is it possible for you to email your questions or leave your onc a voice mail asking for a quick call? Waiting until November seems hugely unfair to you. Best wishes.
She told me Im stable and nothing to worry about, I was just curious why they didn’t mention the tumour. It’s on the outside of my chest so I can see it, it has all but disappeared, wondering if it’s scar tissue that’s left. I should have asked but didn’t know they didn’t put it on the report until I left the office.
I have the same questions when I see a new scan. Why don’t they compare and comment on the sizes of my lesions. They tell me if it is active but I want to know if the lesions on my bones or anywhere are shrinking. The tech asks me if I want to see anything and I always say comparison but don’t get it. I ask oncologist to put it on the order, and I put need comparison of lesion size on paperwork I fill out before scan. Never get it. Not sure why they don’t deep dive more.
You deserve answers; this is your journey! Demand answers by making a separate appointment with your oncologist if necessary. Have your questions ready. Good luck
I am new to this site and only just now read your post. Hopefully, you would have gotten your questions answered. If not, I'm sorry to hear you're having so much scanxiety! It might be helpful to know that the size for CT scan tumor detection is 2-3 mm. The radiologist will only report findings that are visible, so not getting a mention on the size of the tumor probably indicates a size less than 3 mm.
I don’t know if this is helpful. However among blood tests, tumor size, self reporting etc., My oncologist also pays attention to the total SUV. He gave me a big high five because the total SUV is dropping. He didn’t mention tumor size although per the report they are slightly smaller.
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