Radiotherapy support

Hi Angiaqua

Thank you so much for your reply. How are you? 
My oncologist advised me that without brachytherapy I would have a 14% chance of recurrence in the vaginal cuff and with brachytherapy this would reduce to 5%. 
My final pathology changed my stage to 1b, but no lymph nodes were assessed, so there is a big unknown and unfortunately a higher risk of nodal involvement than originally thought.  Based on stage 1b, the proposed treatment is 3 sessions of brachytherapy. 

I had
 5.6cm tumour completely filling my uterus,

> 50 % myometrial invasion - 3mm from the serosa on the fundus 

focal LVSI

I got a copy of my pathology report, which also showed focal displaced tumour in the lumen of my right fallopian tube. The length of this tube was stated as 16mm, which seems extremely short and pretty worrying. 

I’ve had quite a slow recovery from my hysterectomy, late bleeding from vaginal cuff and quite frankly am dreading having further treatment at this stage and concerned about any longer term side effects.

Thanks again for your message and hope you’re doing ok  

You are welcome Dolly3. Good your oncologist has given you that information, I have not had any statistics for any of my treatments. Sorry to hear you have had a slow recovery from the hysterectomy. I understand your worries about further treatment and concerns about longer term side effects. I have only just finished radiotherapy and about to start brachytherapy and have the same concerns as you. Maybe in the future I will be able to alleviate those worries and concerns, but for now I am swimming in all those concerns and worries too. 

I have finished radiotherapy a few days ago. I have chronic diarrhea, sciatica and radiation dermatitis on my lower stomach. I am also very tired. Add onto this since yesterday I have had swelling and pain all over my groin, inside the vagina too. I can't figure out what is going on, nor what to do about it and my radiotherapy team don't work weekends so supposed to wait til Monday to speak to them, but won't be able to as I head into Brachytherapy Monday morning. I do not know if what is going on is normal, serious or if it affects Brachytherapy treatment. Will I be wasting everyones time by going to Brachytherapy appointment only to be told I can't have it because something is wrong down there? Or will they go ahead anyways and leave me in even more pain? I am not sure if its the heat or what, but do feel like I have reached my limit with side effects and the delays to getting help are very frustrating too. 

Angiaqua said:

wait til Monday to speak to them, but won't be able to as I head into Brachytherapy Monday morning

Speak to them about your concerns & side effects. At my first brachytherapy appointment I spoke to them about the burnt skin on my stomach and they were very helpful. I was ill on the way to my appointment and they gave me some time to recover before my treatment. 

H 

Hi Angiaqua

I am so sorry to hear you are having a difficult time. Definitely speak to your team on Monday.  You have come through so much and certainly won’t be wasting anyone’s time. It’s important you are properly assessed on Monday. Please outline any concerns you have. I’ve gone though this “don’t want to be a bother, keep asking stuff etc.”, but we really need to be able to ask questions and advocate for ourselves. 
I haven’t had any external radiotherapy, only offered either brachytherapy x 3 over one week, or no treatment and six monthly observation. 
I have seriously considered the observation route, but have some factors that increase risk of recurrence. I have so much respect for those of you who have bravely gone through even more treatment. 
I pray you get through this final stage and things settle down. 
x

Hi

I am sorry that you are feeling so unwell after your radiotherapy. 

Has your hospital got a 24 hour cancer helpline? I would give them a call- regarding the swelling and pain in your groin and vagina. This is not something I have come across on here. Have you checked your temperature?

The chronic diarrhoea, dermatitis and tiredness is something I have come across more often. 

If you are unable to speak to anyone at the hospital then I would suggest giving NHS111 a call. They may well tell you to wait until Monday but I would still give them a call. 

Alternatively why not give the Support Line a quick call and get some advice. 

You are not wasting anyone's time. There could be different reasons for this and it needs checking.

Jane

Thank you Dolly3. After I posted I decided to try the cancer helpline which is open 24 hours a day. A lovely nurse reassured me that swelling and redness can be normal with radiotherapy. So that was a relief. She did say to monitor my temperature to check for infection. Otherwise she said the Brachytherapy team may be able to offer some creams to help. I am glad I called, and as you say, we need to be able to ask questions and advocate for ourselves. I am usually good at asking questions, but when its out of hours, I find it harder to do. 

It is not easy making these decisions about what treatment to have is it. My cancer is stage 3 and grade 2, which is advanced and has a high level of recurrence, so knew I had to have the treatment. My health was not great before this and think that may have affected my struggle with side effects. 

Thank you, I do appreciate that. 

Glad your Brachytherapy team looked after you so well. xx 

Thank you Jane 2511, very helpful advice. After I posted I remembered the cancer helpline and called them and a lovely nurse reassured me that this can be a normal side effect of radiotherapy. She did suggest I keep an eye on my temperature to make sure its not turning into an infection. And she said that the Brachytherapy team may be able to help with creams tomorrow. So feeling better now I know what is going on and hoping the Brachytherapy team can help me tomorrow too. 

Thank you for recommending 111NHS and the Macmillan support line too, all good options that I didn't think of and am glad to be reminded of in case I need help at the weekend again. I need to get past my fear of bothering doctors at the weekend, as you say, sometimes things need checking. Thank you :) 

I'm pleased you have spoken to somebody - I've found it helped me quite a bit. I think I might need to speak to somebody again though?

My cancer was only grade 1 and went from a 1a to a 1b. I don't have any more information than that. I had the brachytherapy which came as a bit of a surprise but I thought that was the end of it.

I'm now being tested for cancer genetics because of this and another condition I have - has anbody else come across this?

Hi Chipmunk
When my tumour was tested, it showed a protein called MSH6 missing. I then had follow-up blood tests to check if this is genetic (Lynch syndrome). I am awaiting results of these, which apparently take a few months. If it is genetic, I understand I would be offered more regular cancer screenings and my family could also opt to be checked too. 
My cancer was 1a, changed to 1b too. Had no lymph nodes taken. 
How did you find the brachytherapy treatment? I’m due to have this next week. 

Brachytherapy was ok - I had it over 4 sessions. Was a bit sore after the second one and after the fourth one was glad it was over but I'm a wuss anyway. Started with cystitis like pain which ramped up a bit over the next couple of weeks and then settled down. I still have some increased frequency but its not painfull at all. I have longterm bowel issues and I was already on medication for that. Again frequency did increase but hasnt really settled. Im hoping that it will eventually? I'm glad I did it if it stops anything coming back