Nervous about radiotherapy

Hi , good to hear a plan has been put together and you can get started.

No experience with radiotherapy to the abdomen but lets look for other with some experience to come and help you out.

You could also send a question to our nurse team in our ‘Ask an Expert’ section but our mostly Volunteer Experts will take up to 2 working days to get a reply to you.

((hugs))

Hi the highlander! 

Thank you for your advice once again, I feel a lot more settled now I’ve got my head around this type of cancer and feel a lot better now they have decided to go against watch and wait,as tough as it may be,I feel better for doing something! 

Good post to Kate our radiographer xx

Hi as you have one of the less common types and radiotherapy is often an option as first line treatment its important to talk through the options and what each option means should future treatment be needed, plus the benefits and risks of each, only then can you make an informed choice. I see from Mikes reply you have asked a question of the radiology nurse which is good as they can explain the risks better that we can. 

have they suggested any options other than radiotherapy?

John 

Hi john,thank you for taking the time to reply.

I have another meeting on Thursday where I’m sure she will tell me in further detail more about the side effects.

No other options have been mentioned to me as of yet though.All that has been mentioned so far is a kidney function test and their main concern seems to be how much will be falling out of my backside throughout the process lol 

Hi, yes `I get all of that as nearly 10 years ago they wanted to give me radiotherapy to my small intestine and abdomen and in those days the machines were not as good as they are today (if your at a top hospital) and I declined due to the risk of long term damage. That was after 8 rounds of chemo so a calculated risk and I do believe from what others have posted and what I have read the should be options, the challenge being once an option is used thats it and it cannot be used in the future.

So ask about the type of machine and how much healthy tissue is at risk of damage, you may want to talk to the radiologist if you have not already, 

John 

Morning john

Oh I see!! So say for example if I have radio on this one then if it returns to say my neck,I won’t be able to have radio again?i didn’t realise that but it does make sense..

May I ask what treatment option you ended up having instead? 

I have had 45 radiotherapy zaps over my treatments. 5 on my tennis ball growth on my forehead. 10 sessions of TLI (Total Lymphoid Irradiation) on all my Lymph-nodes to get me ready for my first Stem Cell Transplant and then a further 30 sessions on my skin again to get me ready for my second Stem Cell Transplant.

Radiation therapy is measured in grays (Gy), and varies depending on the type and stage of cancer being treated. A typical dose for a solid tumour is about 60 to 80 Gy, while lymphomas are treated with 20 to 40 Gy....... I had 40Gy during my TLI

There is a limit to the amount of radiation an area of your body can safely receive over the course of your lifetime. Depending on how much radiation an area has already been treated with, you may not be able to have radiation therapy to that area a second time. But, if one area of the body has already received the safe lifetime dose of radiation, another area might still be treated if the distance between the two areas is large enough.

Hi discuss this with the consultant but my understanding is if your disease appears in a new site then yes that area may be eligible to be treated, but with the type you have that area could only be treated once. Thats part of the reason I declined because I did not want to waste a treatment if it was not needed, which it turned out to be the case. Other types of lymphoma like Mike's can have several treatments which is why we share our experiences but always advise to check with your consultant. 

Make a list of all your questions so you make sure you get the answers you need and ask them to explain the risks of short term and long term side effects and their experience of treating your type of lymphoma.

hope this helps

John  

I don't have any experience of this, but I'm sorry that you are going through this and I can completely understand why you are nervous! It definitely sounds like a good idea to make a list of questions and thoughts to take to your appointment.

Jess x