Forum Discussion
To scan or not, that is the question!
Hi lovely ladies.
I’m seeing my oncologist tomorrow for chemo and radiation regime. I asked him about getting a PET scan before and he advised it could give false positives and doesn’t recommend. It’s been playing on my mind for weeks. So question......
I’ve had my lumpectomy Triple Negative Invasive ductal carcinoma stage 1B Grade 3, no nodal activity. If I don’t do a PET scan, how do I know it hasn’t spread elsewhere through blood system or another node. Won’t future scans to check the chemo effectiveness just be looking at my breasts? I’m guessing the usual monitoring is look out for symptoms. That’s going to be a pain because I’ve always suffered from strange pains everywhere. I have early osteoporosis and pretty bad herniated disks, hiatus hernia. Goodness it’s going to be hard not to stress out knowing if somethings new or the usual.
i wish we could do a POLL on who did full body pre scans. Any advice or should I just suck it up and follow the advice of my oncologist?
Thanks xx
I’ve had my lumpectomy Triple Negative Invasive ductal carcinoma stage 1B Grade 3, no nodal activity. If I don’t do a PET scan, how do I know it hasn’t spread elsewhere through blood system or another node. Won’t future scans to check the chemo effectiveness just be looking at my breasts? I’m guessing the usual monitoring is look out for symptoms. That’s going to be a pain because I’ve always suffered from strange pains everywhere. I have early osteoporosis and pretty bad herniated disks, hiatus hernia. Goodness it’s going to be hard not to stress out knowing if somethings new or the usual.
i wish we could do a POLL on who did full body pre scans. Any advice or should I just suck it up and follow the advice of my oncologist?
Thanks xx
17 Replies
- Hi @YellowRobin I'm glad you i have an understanding Dr
I had the base line scan after treatment finished, once I was over the worst of the after effects.To me it Was a New starting point And a bit of piece of mind that there was nothing to be seen.This is just my understanding.The scans can’t give a precise answer as there are other possible answers IF anything shows up, its one of several tools in the process to the next step really.I think the biopsy gives the confirmation one way or the other.To our other bcna people if anyone has a different understanding Please let me know. 😊 - Hello @YellowRobin,
I am pleased to hear that you have been to see your medical oncologist and now have a plan. I have attached the following information regarding tumour markers for you and @Mahaica as it explains what they are and provides some examples
https://www.labtestsonline.org.au/learning/test-index/tumour-markers - @TonyaM thanks, I will look into tumour markers as I don’t know much about how they work.
- I never heard about tumour markers test
- Hi Jude, I’m a believer in ultimately following your gut after getting all the info.Grade 3 triple neg bc is not to be taken flippantly and I think I’d feel the same as you. I’ve had bc twice-2003 and 2010(same breast,hormone +ve) and I only had a body/bone scan after the 2nd diagnosis.Although scary,it gave me piece of mind when it was all clear. What I do now is ask my GP to order me a range of blood tests, including tumour markers, once a year
I know high tumour markers could mean many issues but when my levels come back low,it gives me piece of mind and that’s what it’s all about. - @strongtogether @kmakm @Emma17 thanks for your thoughts and info links.
I have just returned from seeing my oncologist and I must say I feel so relieved. I have only met him once before and felt I needed to give him a speedy get to know Jude and how I think! He was great and understands how I want to cross all my current symptoms of the cancer list. He has referred me for a PET CT and agrees that he would like a baseline to monitor also.. so thanks again. XX Jude - Terrific links @Emma17, thank you.
- Hi @kmakm Links to three resources for insight into general growth rate and cell estimation for BC tumours:1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3320224/ From start of 7th para: 'The number of cancer cells is a function of tumour volume in cubic centimetres. Each cell is about 20 μm in diameter. A 1-cm cancer has about 100 million cells, a 0.5-cm cancer has about 10 million cells, and a 1-mm cancer has about 100 thousand cells.'2. https://scienceblog.cancerresearchuk.org/2018/10/18/science-surgery-how-quickly-do-tumours-develop/Near the end 'Scientists have found that for most breast and bowel cancers, the tumours begin to grow around ten years before they're detected.'3. https://oregon.providence.org/forms-and-information/a/ask-an-expert-breast-cancer-growth-rate/ Q&A re breast cancer growth rate
- I think most of us tussle with this question. I have asked many questions around it, the most recent being why my BS doesn't use an ultrasound when I have a check up with him.
I think I read somewhere here that it takes a million breast cancer cells before anything is visible. Our technology isn't perfect, we just have to make do with what we've got. For now. And living in perpetual fear from one scan to the next can be horrible. Ask anyone with a Stage 4 diagnosis.
However there is hope, technology is improving all the time. The recent discovery of blood markers means the scientists are refining these tests all the time. At a BC conference I attended on Friday one of the presenters said they need to get them more sophisticated to be accurately useful. Another 20% I think she said.
Some oncologists are happy to give a baseline scan to relieve anxiety I believe. There can be so many false positives that this can be risky for one's mental health. Only you can know which path you can live with.
I was having rib pain last year so my BS sent me for my first ever CT. It showed nothing in the ribs but something on my liver. So I was referred for an ultrasound, which cleared me of liver worry (polyps) but found something on my gall bladder. It's unclear what that is and it's too small to be biopsied, so I have to monitor it with regular US scans. The first one is next Monday.
Now all this has not worried me overly much; I'm not stressed by it. I'm glad I had a scan because that meant the gall bladder issue was detected. If it does turn out to be cancer it will have been discovered early and able to be dealt with. It's highly unlikely to be (three in every 100,000 people in Australia) but with my luck, you never know!
It's going to be about knowing yourself and how you'll respond if anything is picked up. All the best, K xox - Hi @YellowRobin
All the questioning, doubts and fears are the worst. The truth is that imaging isn't conclusive and doctors seem to prefer being conservative with monitoring for symptoms rather than taking regular scans.
