Supporting mum (80 yrs with stage 3a womb cancer)

Hi LinaM, welcome to the group. I’m 64 so a bit younger than your mum, I had radiotherapy last year and had hardly any side effects. I drove myself to and from every appointment (hospital is an hour away), had no side effects at all till week 4 when I just had some bloating and a bit of urgency. My radio was belt and braces/an insurance policy in case there were any stray cells in my lymphatic system. I’m very glad I had it and it gave me a lot of peace of mind. The mild side effects were gone within 3-4 weeks of finishing treatment,

Thank you so much for the reply. Good to hear that your side effects were mild.

She is still feeling pretty wobbly from the chemotherapy and has only started driving very short distances again in the last week.  If the radiotherapy had been offered first I think she would have done it - but coming after the chemo, when she's feeling worn out, is affecting her decision. 

Hi LinaM 

In 2015 I had External RT and Brachytherapy.  I had been diagnosed with Stage1a, Grade 2 +LVSI, and the aim was purely to reduce the risk of recurrence.   I was only 75 then and was lucky enough to be able to sail through the treatment, cope with 1 1/2 hours travel each way by public transport and even go to the theatre quite often.  I remain cancer free with no side effects.   I  am now 84 years old  and I feel that if faced with it now, I could find it difficult, even though I am in quite good health (no regular medication) I do have mobility issues and get tired more easily.   At the time my oncologist said that she would not want to put someone through the treatment with its attendant risks unless she felt there would be a real benefit.  It's a difficult situation and one in which some people on this forum have said they asked the doctors how they would advise their own mother!

Good Morning LinaM

Welcome to the Online Community and womb group.

I am very sorry to hear about your Mum's womb cancer.

I had the same type of womb cancer as Mum although an earlier stage. I also had LVSI.

The thing with carcinoma sarcoma and some of the other type 2 cancers is that they can behave more aggressively and recur more frequently. I was given chemotherapy due to this and the LVSI. I also had the 5 weeks of radiotherapy. 

There is another type of internal radiotherapy that Mum could ask about- its called brachytherapy and is suitable for some ladies. The advantage maybe that it seems to be normally 3 sessions and seems to cause minimal side effects. It is not suitable for everyone and I did not get offered it due to not having cancer cells in my cervix. Because of the LVSI/ carcinoma sarcoma  I was given the 5 weeks instead. Brachytherapy is intended to try to reduce the risk of local recurrence. I do not know whether it would be an option for Mum but it may be worth asking about it.

With external radiotherapy many people have few side effects and these resolve fairly quickly after radiotherapy finishes. There is not really a way that they can predict who will be affected. Although I had a bad reaction myself, this was managed by medication. My main side effects were fatigue (I think a lot was from the travelling), diarrhoea (I was given medication) and nausea. Symptoms were worse during the radiotherapy and for the first month after. After this my symptoms have settled but I do still have some issues a year later. Most people do not seem to. However I would still do it all again- the chemo, the radiotherapy because with carcinoma sarcoma and the LVSI I was more frightened about recurrence than the side effects. And remember although there is a small chance of long term side effects- this is not the case for most people. My side effects at a year are just that I probably have to wee a bit more often and can't wait, and I have to watch what I eat as certain foods can bring on a dodgy tummy. I have a bit of urgency and go more often than before. I have regular check ups where these are being managed. 

I also felt rough after the chemo and I can understand with Mum's age this is an added factor. I had about 3 weeks after chemo before the radiotherapy started- but still found it hard. After the chemo- I just wanted it all over and done with and my life back. I was fed up with the hospital visits and the thought of 5 weeks of travelling daily-I thought I would not cope with it. However once I got started on it, it almost became the new routine and it went much quicker than I thought it would. I had a lovely team of radiotherapists and I think that helped. When I had my consents appointment with the radio oncologist I was scared at the list of side effects but I think also the thing to remember, like with the chemo consents appointments- they have to tell you every possible side effect to be able to get your informed consent and it does not mean that Mum will have all or indeed any of them. If you think back to the chemo one it's the same. I did not get half the side effects but they still have to tell you.

I think it is a really good idea for you to get advice from her team. I would be thinking of writing a list of questions to make sure nothing was left out. I would be asking about brachytherapy and whether this may be an alternative. Also about the actual chances of recurrence. The doses of the radiotherapy. Whether it would be possible to hold back on the radiotherapy to be able to give it if there was a recurrence. (radiotherapy can not normally be given to the same area twice) Or perhaps whether it would be possible to delay the radiotherapy to give Mum a little more time to recover from the chemo. Would there be a possibility that Mum could have for the time being scans to monitor her. If Mum doesn't have the radiotherapy and the cancer recurs what treatment would be available. We are not medically trained on here and can only talk from our own experiences but these are the questions I actually asked my consultant during my consents appointment. You and Mum will probably have your own questions but these are just to give you an idea.

It is a really hard decision to make so my advice would to be to get as much information as you can. I wish you and your Mum well whatever she decides she wants to do. If talking it through would help then there is the Support Line and they are lovely on there. The number is below. 

I hope this helps a bit but if there is anything else that would help Mum or you, then please just ask.

Jane

Thank you for the reply. That's a good point about asking how they would advise their own mother.  Best wishes for your continued good health. 

Thank you Jane for your reply and sharing your experience of radiotherapy. It is good to know your side effects could be managed with medication. 

The questions you've listed are really helpful. I'm hoping she will be able to speak to someone from the cancer team next week. I hadn't realised about radiotherapy not being done twice in the same area so we'll definitely ask about option for having it in future if she doesn't go ahead now. 

Best wishes

I took a the list in with me and the consultant was fine with it. It does help focus the appointment on what you want to know rather than what they are more concerned with. I went with my consultants advice as I trusted her and that she wouldn't have put me through it if it wasn't needed. The thing with womb cancers are there are different types and some are likely to cause more problems so its about Mum making the right decision for her but making sure she has all the information she needs. I wish you both well, whatever decision Mum makes