Radiotherapy

Hi Sassy

I remember my radiotherapy consents appointment and the consultant did mention that although the treatment may not have an impact on overall survival from womb cancer in the long term- it had an important impact on preventing recurrence. She also said that preventing recurrence is the most important thing to try to do -as preventing the recurrence in the first place is easier to do than to treat a recurrence once it has happened. 

So if a recurrence happens there may not be an overall impact on survival but if it prevents the recurrence happening in the first place then that does have an impact on survival. 

This is how she explained it to me. 

I remember during chemo thinking that I did not want to go through further treatment (radiotherapy) that I'd had enough and worrying about the side effects and how I would cope. It is a tough decision. I went ahead with the treatment. It wasn't an easy decision but at the time I felt so unwell from the chemo that I felt I had to trust the consultant and her expertise. 

I do have lasting effects from the treatment. Many people do not. But I had an aggressive form of endometrial cancer and I am nearly 3 years post treatment. 

What I did before my meeting with the consultant was to write a list of all my questions and concerns and went through it one by one with her. Maybe that is something to consider. 

You need to make the decision that is right for you but just make sure it is an informed decision. 

Do give the Support Line a call if you feel like you want to talk it over with one of the nurses. 

Jane

I had 25 x radio and 2 x brachy in 2022 - mine was deemed an insurance policy/belt and braces (grade 1 stage 2). I consented to it as I wanted to give myself the best possible chance of reducing the risk of recurrence. It was a slog going back and forth to Southampton each day (I live an hour away) but I drove myself and was fit and well throughout. I asked my oncologist in advance for afternoon appointments if possible and this enabled me to not feel rushed in the morning and to be able to have a poo at home lol and to walk my dog, to keep a bit of normality. I had no side effects till week 4 and they were minimal - a bit of bloating and slight urgency - which were controlled with a Buscopan each day as advised by the on call registrar. I followed a pelvic radiotherapy eating plan from 2 days before treatment till 2 weeks post treatment and I think that helped. I’ve never regretted having it and it’s given me peace of mind since. 

Thanks for explaining it Jane. I think I'm trying to find every reason for not having it but my gut feeling is that I should. 

I know in my heart that I should proceed as if I didn't I'd be more worried. How soon after your chemotherapy did your radiotherapy commence? 

I was exactly the same. If someone had given a reason not to, I would have jumped at it. It is so tough going through chemo and then thinking there are still 25 radiotherapy sessions to do. 

My last chemo was on August 1st 2022 and I was on carboplatin and paclitaxel -a 21 day cycle. So I was post final chemo on 22nd August. Radiotherapy planning appointment was the week before my last chemo. The first radiotherapy session was the last week in August- so pretty much as soon as I was post final chemo. It was completed on September 26th.

My hospital did a count down app that helped. Once I had the first couple of sessions done, It soon became a routine. It wasn't fun, I was tired partly due to radiotherapy and partly due to the travelling- I also had tummy effects from after the first couple of sessions- but I had medication to manage it. The radiotherapists were really good and I had a review appointment each week. After the first week I did not do much other than the appointments as too tired. I met a lot of ladies and men having pelvic radiotherapy each day and we were all pretty much the same- diarrhoea and tired. But it helped to have a chat each day and see familiar faces. 

If you do get any side effects, mention them at the first sign as then they can help you more easily with them. Its a bit like with the chemo- if you get nausea- then it is better to try to prevent it building up at the early stage. 

I remember talking through the list of questions with my consultant and the look on her face when I said I wasn't sure- it was one of panic- she said you really need to try to prevent a recurrence, you don't want it to come back. 

I did ask about what treatment would be available if it did come back- she said it depends where and how it comes back. But that radiotherapy works better to mop up the cells rather than treat them if something new pops up. I asked about brachytherapy and she said I did not need it as no cells were found in my cervix. She also said that brachytherapy is aimed at the vaginal vault whereas external beam covers the whole pelvic area. 

Looking back and with everything I know now- I am glad I stuck it out for those last 5 weeks. The thing also is that once chemo finishes- even if you do not go for the radiotherapy- you could, if like me, potentially have 2 years of appointments every 12 weeks to go. 

Only you can decide. 

What is your prime concern?

Is it long term effects or is it the actual continuing to go through treatment?

For me the deciding factor was the look on the consultants face and thinking if I could just carry on for the next 5 weeks- then hopefully I would not have to face any treatment in the future. Whereas if I did not have the treatment I would be sort of waiting for it to return and then potentially facing more intensive treatment that may or may not cure it. My consultant said it is really difficult to predict who will have a recurrence and who may have longer effects from the treatment but on the whole it was better to have it. 

If you decide to go ahead they will check with you before it starts- even after your planning scan as to whether you want to go ahead and whether you have any questions. It is of course helpful to remember that if you do start it then it is your body and you can stop at any time. My consultant said that with radiotherapy you need the whole dose (it is divided into fractions to reduce damage/side effects etc) for it to be effective. But for me knowing that I could stop at any point- although medically not advisable- meant I felt I had some control over it. Once I started, I was determined to finish. 

Jane

I feel you're exactly the same as me with regard to treatments. 

First of all I was indecisive about chemotherapy but went ahead, 

and now I'm indecisive about radiotherapy but know I will consent. I always have many questions for my oncologist but  annoyingly once home have one more pending!

Very appreciative re your reply, it has somehow made me feel calmer. Like yourself, I also had a grade 3 diagnoses which totally floored me. Onwards & upwards. 

I did my treatments in the other order, radio first and then chemo. I was like you after radio re the chemo, trying to find a reason why I shouldn’t do it, but in the end I knew I would never be able to look myself in the mirror if it did come back if I hadn’t done the chemo.  Good luck

Thanks Waidh,It's a hard call but I know in my heart it's the right decision. I'm dreading the fatigue side of things as I'm not one to sit around. ( always had an element of guilt about doing nothing)

Of course, we're governed by events and how we respond.I have support at home but never feel comfortable about dishing out instructions. 

Hi again sassy, I didn’t have chemo first so it may be different but I personally didn’t have any fatigue during my radio - it varies and it’s not a given that it happens, especially if you keep up your calories. I always had a snack immediately after treatment before I drove home, and then had a treat of ice cream or chocolate when I got home. I had a little tiredness after treatment had finished, but I attributed that to relief that it was finally all done.

It is natural to want to know about the treatments and to make sure you are happy with the choice to go ahead. 

I found it hard after surgery because I felt well and I knew that the chemo and radiotherapy had serious potential risks and unpleasant side effects. I knew that I would likely feel unwell for sometime. 

If you think back to your chemo consents appointment where they go through the side effects and risks- it was scary but how many did you actually experience? How did you actually find the treatment? Did your experience match your fears? Chemo is hard but you have done it and are now thinking of moving on, hopefully to your last treatment. Yes radiotherapy can be tough at time, yes there can be side effects and unfortunately for some- there may be some late effects. But if it means lowering the risk of recurrence- especially with a more aggressive grade 3 cancer- then for me it was worth it. 

Break it all down into steps. Write your questions- email consultant or CNS. Ask to speak to the radiotherapists. Then go to the planning appointment. There will likely then be 2/3 weeks while they do your specific treatment plan. Then think of it as 1 appointment, then the next- bit by bit and at any point- you can say stop- probably not medically advisable but you are still in control. If you are like me once you have been to the planning appointment and spoken to the radiotherapists and seen where and how you may be treated- this may allay some of your worries. 

Radiotherapy is very accurate these days- they will target the areas needed as closely as possible, you will be positioned in the same position each time. The actual treatment itself does not hurt. 

Its a big decision and a difficult one and you are right to take time and think about it. Radiotherapy works by damaging the DNA in cells- if there are any tiny cancer cells remaining then my thinking is it is better to damage the DNA now and then they will not be able to grow rather than risking that there are tiny cells remaining that may in time begin to grow and travel through the body and potentially set up elsewhere and cause problems later. If they do spread elsewhere they may be growing for sometime without symptoms. Then it would be harder to deal with them. 

I have long term effects, but they are manageable and in my opinion far better than the potential alternative. 

Good Luck

Thanks for your support in all of this. Like you I'm using the cold cap which I seem to tolerating fairly well. I have shedded but understand this is normal albeit distressing. Being the anxious type I'm always asking them if it's fitted properly! 

From your posts I understand shedding continues post chemotherapy but hopefully a little less. I do find it annoying that I'm unable to email my consultant---- apparently her email address isn't given out. I suppose a CNS would be able to contact on my behalf.