On the principle that many minds are better than one, I should like some help to think through a decision about whether to go a head with the scan i was offered at the hospital today.
I have had a pain in my spine for three weeks now, coinciding with radiotherapy which is due to finish tomorrow. I strongly suspect that it is caused by the uncomfortable position needed on the rads table, keeping still each time, plus all the driving, an hour each way for 20 days. I also had a neck injury, a very long time ago now though, on a trampoline which could be the original cause of any weakness.
I had an X-ray on Friday which is normal. Now the oncologist says I can have an MRI but it is mostly for my peace of mind. When pressed he agreed that I could wait and see if the pain subsided after treatment has stopped.
Now I am thinking I should have had it anyway. Am I being silly turning down a free peace of mind check? But would it give me 100% reassurance anyway?
I’d be so grateful for any input, your experiences, pro’s and con’s
x
Rusty
I really sympathise and I hope you get lots of opinions. My initial thought to consider are scan can show things but not always tell what they are. So the scan might show something that needs further investigations but may not be cancer. Therefore if you think it is most likely not then having the scan may lead you to unnecessary worry. I had tomotherapy and had to lie with my knees bent it put a lot of pressure on my back and it took me some time to realise how tense my body was holding still.
Often consultants are guided by us and wish to reassure us. I had a liver scan after rads and it was v stressful, even though my onc did not think I had mets but she wanted to reassure me.
So a clear scan would be great, but you have stress waiting for test and results.
A scan that shows something suspicious that is not cancer is v worrying for no reason and could lead to further tests.
And obviously a scan that shows cancer is a life changing dx.
When my liver scan came back clear I did not feel the enormous relief I thought I would. I thought I bet this isn’t the last time I have a symptom of secondary cancer and have to go through this worry. So when I had an unusual migraine recently I knew I could probably get a MRI if I wanted, but I can’t keep being scanned. I have to learn to be rational about my body and what might cause things and leave scans until I really need them.
So your decision is do you really need reassurance so much that you are prepared for further tests if the scan is not straightforward. Do you think it could possibly be mets? Or are you willing to wait and see and cope with having uncertainty, until you have more evidence or it gets better.
Sorry if I have gone on a bit. I wouldn’t blame you if you had the scan. Sometimes the very fact that we are offered them makes us think we are irresponsible not to take them- that they most know something we don’t. But there comes a point where we will have to trust our bodies and recognise that other things do go wrong tpwith them.
Am going to shut up now. You can tell I have thought a lot about this,: )
It’s a dilemma, isn’t it? You’ll be worried about results if you have it and have constant nagging thoughts about ‘what if’ if you don’t have it. My thoughts are below but please bear in mind I have bone secondaries and have done since day 1, although I didn’t know it at the time.
One of the things some of us on here have wondered is why we aren’t scanned a few months after ‘normal’ treatment is finished to ensure that nothing nasty is lurking so in a way you are having this opportunity and from that angle I would say have it.
Because of my bone mets, I do have bone scans every so often and have also had the occasional ultrasound when I’ve had aches in the liver area. The ultrasounds have always been normal and the scans stable until I mentioned some increased aches I’d been having in my spine and surrounding area at a checkup in Dec. Although we all thought it was just one of those things/down to the weather/sleeping funny/doing something too much, they did another bone scan and found a slight spread so I have had a one-off zap of radiotherapy. I don’t say this to scare you but just to say that even if you have the scan and they find something, it can be dealt with very quickly.
I’m also waiting for CT scan results - never had one in all my 3.5 yrs of treatment - and although the waiting is unpleasant and nerve-wracking at times, I personally would rather have tests done and get any issues sorted asap.
Of course, from what you’ve said it would sound like it’s the rads, travelling etc and probably stress but to give yourself peace of mind have it done. I’ve heard of so many ladies who have either wanted or needed MRI and other scans and had to really fight to get them or been refused completely.
Hope it all goes well for you whatever you decide.
I’m with Liz on this one. Also I think you are fairly recently on tamoxifen and this brings with it its own set of aches and pains! If that is the case the aches will go on and you will always be wondering if it is something more serious - at least at this point in time (if you have the MRI) you will know it was nothing to worry about. I’m sure the onc doesnt mean if you say yes, it will happen tomorrow, so why not ask if you can have it in say a months time and then when it gets closer if you have decided you don’t want it then you can cancel. Does that makes sense
Deb, your Sometimes the very fact that we are offered them makes us think we are irresponsible not to take them is exactly right, you put it into words for me.
Liz and Dawn, I guess my second question is, if the pain goes away, won’t that give me the same reassurance?
I don’t know enough about secondaries to know if the pain is constant or variable. You said you didn’t know you had secondaries Liz, does that mean you had no back pain or you just didn’t know why you had it?
And the question i asked the oncologist, If it is cancer related, ie mets, does it make any difference whether we do the scan now or in three weeks time? He seemed to think not.
At diagnosis, I didn’t know I had bone mets as I had no back pain/ache and my original scan had been filed away without surgeon seeing it. It was only when the stand-in surgeon was looking at my notes pre-op that he found it. I had chemo first because of the tumour size. The first I knew was post-op when the surgeon requested a new scan after an MDT to see if it was wear and tear or mets. So guess I’m saying if the pain goes away it doesn’t necessarily mean there are no mets…
Anyway, since then it’s caused no problems really until late last year when I was getting more persistant backache. I did get some aches if I did too much or did things like hoovering and ironing for too long but otherwise it’s not caused me much trouble so far.
Like Dawn says, why not ask about having the scan in a month or so. Timescale-wise from my latest experience, I saw registrar for routine check-up on 9th Dec, he discussed with my onc and ordered bone scan which was done on 23rd Dec, follow-up appointment 13th Jan and rads done on 26th Jan. However, a slightly longer timescale would have been fine I’m sure, it’s just that my onc seems to be pro-active for which I am very grateful.
Hi Rusty
Good thread - thanks for posting. Whilst I don’t have the wealth of experience as some of the ladies on this thread have, I am at a similar stage of treatment as yourself.
I finished radio therapy last week Wednesday and throughout the 18 sessions of radio I had various painful spots. Around my ribs on the side of the treat area, painful neck (trapped nerve?). Today my back and right shoulder still feel stiff. I have decided to let things settle for a bit until my next ONC appointment mid March. Very difficult as part of me would like the reassurance of a scan to put my worries to bed (if only it was that simple!) But I feel that I need to give my head and body some time to recover and to get some confidence back.
Tamoxifen has also caused changes in my body including aches and pains, and I am waiting to get through the first three months after which some se’s should settle.
Sorry I am rambling here about me, but I wanted to share my experience after finishing radio. I think the suggestion to book the MRI in a month time is a good idea. It gives you some time to recover after radio and also, if the pain goes, it’ll give you the reassurance you need and hopefully some confidence in your body.
It is really great that your ONC has offered you the scan - whatever you decide, wishing you all the best reaching your decision.
