Radiotherapy recommended although no cancer on Pet scan

Hi again Pastyum over my many years I have had 45 zaps of radiotherapy (5, 10 then 30) but all the reasons for this were clearly explained by my various consultants…… I had two face masks one being lead and a full upper body mould.

Some radiotherapy is precautionary….. as in forestalling any cancer development……

You do need to engineer a further appointment with the consultant to get to understand the rational for this better.

Thank you, unfortunately the specialist only does clinic monthly locally and is often full! Am dismayed we have had no phone call at least to discuss! Makes you feel like a condition and not human. 

Does your partner have a CNS (Cancer Nurse Specialist) as they could help you out.

He was given one at initial diagnosis but apart from one call- he left messages but a different person got back- they didnt know him or his case so he had had to explain again! Which to be honest put him off! Since they said all fine we not needed them- the nurse was through Haematology but we are now with oncology so unsure how it works?? Staff member said the head & neck nurse will keep an eye on his symptoms once treatment starts!

He is with Oncology as they oversee Radiotherapy…… but he most likely is still on the Heamatology books.

The decisions around what type of Radiotherapy and how many zaps he will have will be set by the Oncology team, including a Consultant Radiologist and medical physicists….. so contacting anyone in the Radiotherapy department would be the way forward.

Thank you, we had appt last week- expected to just be told about the radiotherapy plans and then go back next appt but no we were there nearly 3 hours moved from one area to another and had medical physics create his mask etc all a bit overwhelming to be honest!  Obviously they ask ‘any questions?’ But too overwhelmed to think of any

3 hrs is rather normal as it’s all very complicated…… but you do need to get in contact and get some clarity.

thank you Yes we do! Will encourage partner to call on monday even though he hates asking for anything!

Based on my 25 years experience on this journey having clear information and getting answers to questions is an essential tool to protect our mental wellbeing.

Very sorry to hear this and of the worry it is causing. The World Health Organisation has identified nearly 30 varieties of T-Cell Lymphoma and the sub-type often determines the best course of therapy. It would be a good thing to enquire regarding the sub-type so that it can be studied. As often said, knowledge is power and one should not feel left out of the decision-making process.

As to radiotherapy, are they speaking of focused or a more generalised irradiation? Each carries advantages and disadvantages. As to the PET scan, the threshold for detection of cancerous activity may be as many as one million cancer calls (possible refinements have probably altered this), so a PET is not the final word on the presence of a malignancy.

Since T-Cell Lymphomas are very rare and generally require a specialist, I would certainly hope that doctor is consulting with other T-Cell specialists, as this can be a murky area regarding the best course of action.