Yesterday we got the results from my husband's PET scan (10 weeks post treatment). It was positive in that they said the cancer (larynx and lymph nodes) had responded well to treatment. However there were two new areas lit up in his shoulder and side. He said the radiologist thought the shoulder might be due to the radiotherapy and the side may be due to trauma (my husband bashed his side a few weeks ago when he slipped in the kitchen). We were told he will need another scan in 3 months.
I feel really unsatisfied with our consolation. It was a different doctor than we have seen before and his communication was poor and the whole thing felt really rushed, When I quizzed him further about the lit up areas he started going on about how my husband had one of the worst and most aggressive forms of cancer (we have never been told this before!) so it was important to look out for any changes in his condition. He then wished us a merry Christmas!
I want to ask to speak to another doctor. I feel that if the cancer has spread, 3 months is a long time to wait to find this out. I don't want to upset my husband though by showing him how worried I am.
Any thoughts appreciated. I feel as stressed now as I did when he was first diagnosed.
Jane....take a deep breath.
The others are right. A ten week scan is far too early and I am surprised it was offered so soon. As I explained earlier it might well be that a slot opened up early and the radiology department just slotted it in.
Now, I had a scan at sixteen weeks. At that time I was being seen every six weeks. My oncologist ordered the scan saying it would fit in nicely just before my next appointment if it was done in five weeks (that would have made it 21 weeks) I got a slot five days later which showed a hotspot. Instead of contacting me straight away they left the results till my next appointment five weeks later. It was a wise decision because five weeks later the hotspot had disappeared on biopsy. They took eight FNAs, no cancer
Some trusts biopsy and some re scan in three months. It's just the way it goes. It does add weeks of uncertainty but all you can do is put your heads down and try to get on
Hotspots are common I'm afraid but most of them are just that. Residual effects of RT. A PET can't differentiate between acute inflammation and cancer. Many other things form part of any diagnosis.
I know the bedside manner you have been exposed to is lacking and I know some clinicians just don't have the experience to deal with traumatised patients. They don't teach it much in med school and it only evolves from sympathetic teaching.
It is an aggressive cancer which is why the treatment is agressive but it works in over 95% of patients.
I hope this helps explain what's happening
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
. So it looks like 12 weeks?
That’s about standard. It’s usually a PET but sometimes an MRI
A lot of oncologists would like to do it much later to avoid the stress of false positives which are not uncommon.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
