Hi, sorry, to keep posting but I get so worried. I was misdiagnosed so no the cancer was there for over four years. Lobular invasive stage 2. When I went for bloods for first chemo the nurse said I should have had a bone and body scan. When I asked the oncologist she said she could justify doing one however, she wasn’t happy about doing one as she said if i haven’t had any problems with my bones she would be reluctant to do them because of the extra radiation given. She also said and some time they can show things that are quite insolent that have been there for years which just adds to the anxieties and leads to further tests. She also said you have had a chest x ray and nothing abnormal was detected. I am not sure if this is ok or I should insist on having the tests. First thing is I don’t really have any confidence in what the tell ,e after the two misdiagnosis. Secondly, if they do the scans and they don’t find anything does that mean it won’t return?
Hi Suzy
I thought bone and body scans were the norm at whatever stage you are at.
If you are having chemo you should have these scans at the begining of your treamtment and then about 3 months later to see if the chemo is working.
When I started my firt chemo 2 years ago, I got a body CT scan at the start middle and end, and a bone scan at the begining and end.
I didnt have any problems with my bones, but the scan showed up I had mets all ove the place, the CT body scan showed up the mets in my liver.
I have just started my 2nd lot of chemo and had bone and CT body scan at the begining to see where we were at, and will get another CT body after about 3 treatments, to see if it is working. This CT scan showed I have mets in the pleura of my lung.
So, in answer to your question, YES, push for these scans and if possible change your oncologist.
Having the scans will show whats going on and help you to come to terms with things and help your anxiety.
I wish you the very best.
Love and hugs Janexxxx
Oh my goodness, thank you for that advice. I shal speak to them when I go for chemo on Thursday. Seems there letting me down again. What type of breat cancer was yours, what stage and was there any lymph node involvement?
Hello Susy,
In my experience, bone and body scans are NOT necessarily the norm at primary diagnosis, but those with secondaries are scanned more frequently to check that their treatment is working. You don’t say whether you’re having chemo pre or post op, but if it’s post op, your tumour has been removed, so they can’t check if the chemo is working in the same way that they would for someone with secondaries or who is being given chemo prior to surgery. Also, the chemo is being given almost as an insurance against further spread and not to treat an active cancer - a very different scenario to those with secondaries.
A bone and body scan would be to look for any further spread, so you may want to push for those to give you some peace of mind, especially after your misdiagnosis. In answer to your final question, even if the scans are clear, that doesn’t mean that the cancer can’t return at some point down the line, but the chances are that it won’t.
Good luck with your treatment. Take care, Angelfalls xx
P.S. The fact that you’ve had a clear chest x ray is a good sign!
Hi Angelfalls, thank you for your advice that is the reason they gave me for not doing the scans. I’m having chemo post op then tamoxifen after that. I think I will push for the scans as I am suffering with worry at the minute.
As angel falls says lots of units do not scan pre treatment in primary cancer. My unit only does if there are more than 3 nodes involved. This is because the risk of spread is not great (although possible) and it may delay treatment further, cause anxiety and also because often the treatment choice would be exactly the same.
I completely understand your anxiety that the tumour has been there for so long, but my onc told me that mine was probably there for 2-3 years before I found it- too young to screen. I am really sorry you were miss diagnosed, that must make every descsion so much harder and having trust in your team is so important. Part of their task is also to manage your anxiety and they should take that very much into account when dealing with you. Please don’t feel like you should not make it perfectly clear to them how anxious you are about everything and why. They are there to help.
Don’t rush into any decisions about your team until you have completely explained what your concerns are and why. Once they completely understand you made find they do things differently. If not the, You can change.
Dx
Yes I can see your point as only the sentinal node was involved. I am truly grateful for your advice and can’t thank you enough.
Hi Susy,
In my part of the country you are not given a scan unless you have symptoms that give them reason to believe that it may have spread.
Its good your chest xray was clear, but if you feel so anxious that you are not coping with it then you must ask for what you want, its bad enough worrying about the primary diagnosis let alone the added extras.
I wish you luck on your journey
Debh x