Anxious about radiotherapy

[OrdinarySoul]

Hello everyone. I’ve just come back from seeing my oncologist and am feeling flat and anxious. I was thinking that I might need a couple of sessions of radiotherapy after finishing my chemo but have just been told that I’ll have 25 sessions over 5 weeks with 2 further chemo (cisplatin) in weeks 1 and 4. The consent form always freaks me out but I’ve focused on the potential permanent damage to bowel/bladder maybe needing a stoma and ongoing side effects. I can feel myself getting in a tizz so I just wanted to post on here and see if anyone has any advice/reassurance/experiences that might help. Instead of feeling relieved that I’m done with my carbo/taxol (last session is on Thursday) I’m now feeling low. Thanks for reading 🙂

[0462County]

Hello Ordinary Soul

I don't have any experience of radiotherapy. I just wanted to send all my love and hugs.

Beth

[OrdinarySoul in reply to 0462County]

thank you - how’re you getting on? I think I remember you being a couple of chemos ahead of me… hope all is okay x

[Lyndy2]

Sorry to hear you are in that zone where you have to agree to something without really knowing what you are agreeing to!

Could you ask for more detail? As I understand it there are different types of radiotherapy and some are able to target very accurately the area and leave surrounding tissue.

Perhaps if you were able to go through the process with someone you would feel reassured?

Also I think it’s worth saying that you feel deflated and low about this news. Perhaps your oncologist can explain what they are trying to achieve which might help you get on board?

If you are finding it difficult then I would encourage you to say something and have them listen to your concerns xx

[OrdinarySoul in reply to Lyndy2]

thank you - I think part of the problem is that it’ll be at a different hospital under a different consultant so I probably just need to wait and speak to them. It’s just floored me tonight because I wasn’t expecting quite such an intense treatment - I thought I’d done the worst bit but now I’m not so sure. I will definitely try and talk it through more once it’s settled in my brain a bit! Hope you’re okay xx

[Trickysite]

you may not need a stoma, but just to let you know my non OC sister in law had one about 3 months ago and is doing really well. Out and about and leading a good life. Emma x

[OrdinarySoul in reply to Trickysite]

thank you for this - it’s all the unknown stuff I think that is so scary so it’s good to hear about people managing well. Hope you are okay x

[Yorkiepudd]

Hello. From the schedule it looks like you’re having external radiotherapy as opposed to brachytherapy?

I had radio over the same schedule (roundabout the same time of year actually 🙂) and it’s definitely less taxing than chemo. Probably the biggest faff is having to go to the hospital every day for such a short treatment.

I had tiredness about three weeks in but more the ‘I need a nap’ type than the bone crunching fatigue you can get with chemo. It does affect your bowels as the rays are targeted deeply but the trick I found was to get the balance right of not taking things to bung you up completely but solidifying enough! Please don’t worry about that though and look on the up side that any skin issues are very little or nil compared to radio targeted nearer the surface.

Do let me know if you have any questions and I’ll do my best to help xx

[OrdinarySoul in reply to Yorkiepudd]

thank you so much - it’s so helpful to hear from someone who’s done it too. I have to have brachytherapy too but after this external lot first. Can I ask if you have had any long term effects or did the bowel stuff rectify itself once the treatment was over?

[Yorkiepudd]

wow he really is hitting it from all angles, I’d definitely ask for their reasoning as to the multi layered treatment plan. Mine was part of the belt and braces approach to hopefully mop up any random stray cells but I knew that prior to dealing with consent forms and the like (which I think I signed when I had the planning scan where they mark you up).

No long term effects from it and the bowel issues cleared pretty quickly as I recall x

[Leniko]

your feelings are totally understandable. I also had 28 sessions of radiation, which significantly reduced the size of my tumor. About 2/3 of the way into the cycle I did start getting pretty tired, but other than that I was OK. I wish you all the best as you go through this.

[Summergold2]

I have no knowledge of radiotherapy. but have been on cisplatin and gemzar since June just finished and waiting for pet scan next week nervous as well thinking of you and hoping this will work for you and you can tolerate everything!

Debbie

[OrdinarySoul in reply to Summergold2]

Thank you for replying - sending hopeful vibes your way x

[ZenaJ]

I have no experience of this but it will be worth it in the end. Thoughts will be with you. xx

[Kblaisel]

can you ask if it will be Cyberknife or Proton therapy? Those are more targeted radiotherapy and less damage to surrounding organs.

[OrdinarySoul in reply to Kblaisel]

I don’t know much about it at all at the moment - I have a planning discussion and scan in a couple of weeks and I’ll make sure to ask. Thank you for replying - it’s such a minefield and I don’t even know what questions to ask to get more information so this is really helpful ☺️