To scan or not, that is the question!

YellowRobin

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

ddon

I get the anxiety. PET scans only show clusters of cells - not individual ones - so a negative scan only tells you there’s nothing biggish right now. There’s no scan available that will tell you how many malignant cells escaped and are travelling around. And following chemo there’s no way of knowing if it’s been effective. Just have to cross all fingers and toes!! It sounds crazy but that’s how it is. Constant stress - yep!! 

YellowRobin

Thanks @ddon Sounds like fun!

Afraser

It can be a worry if you let it but while your checks with a surgeon will focus on your breasts, my oncologist does a physical examination over chest, stomach, under arms etc, in addition to blood tests and has done so for seven years. There are heaps of things I don’t know about my body and they don’t keep me awake. Anything odd I get checked ASAP. I’ve never had any issues from doctors about getting things checked, prevention works for them too. Best wishes. 

ddon

I try to shut my brain down but it sometimes escapes me and I picture these demon cells in multiple places, just waiting to grow. Some more deep breaths. 

PV123

I did a CT and Bone Scan as suggested by the Breast Surgeon. She said it gives a baseline to compare if something shows up in the future.  The oncologist was not particularly keen on it but I went ahead and did both the tests which were negative. There is no way of knowing what might come up in the future. I also have borderline osteoporosis and have aches and pains in winter. My husband is always reminding me that nobody knows what is going inside the body so I should just  focus on living well today.

YellowRobin

@Afraser @ddon @PV123 thanks. Still unsure what I’ll do. If there was one thing I could change it’s how I am always indecisive. I’ve now DECIDED that this will be something I will change about me during this adventure. I am going to be a decision maker and stop phaffing about. 👍🏼

Afraser

Good for you! No-one wants to be here but I reckon if you can drag a few good changes out of it all, it’s a plus. I used to worry a lot but have considerably reduced that futile activity. Living in the present takes on extra meaning when you realise that no-one, no-one at all, really knows how much time they have. So using it well, for our own well-being, matters. It always did of course, just brings that knowledge home. Best wishes. 

strongtogether

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.

kmakm

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

Emma17

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

kmakm

Terrific links @Emma17, thank you.

YellowRobin

@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

TonyaM

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.

Mahaica

I never heard about tumour markers test 

YellowRobin

@TonyaM thanks, I will look into tumour markers as I don’t know much about how they work.