Radiotherapy conundrum

HI Christmas2019,

I was 76 years old when I had my  Hysterectomy.   I was advised to have 5 weeks of external RT and 2 sessions of Brachytherapy. . I was stage 1a grade 2 they did not remove my lymph nodes because they appeared OK on the MRI but the histology showed the presence of cancer cells in the vessels  leading to the Tumour (LVSI)   The external RT was targeted at the pelvis generally and in particular the lymph bodes.  I seem to remember my oncologist saying she would "cook" the nodes!    

The brachytherapy is comparatively local and targets the area at the top of the vagina and requires no preparation. It is, to say the least, a bit personal and many find it embarrassing..   

I think it is generally felt the external RT is more likely to cause problems post treatment with the bowels and bladder. There is more preparation required each time  (you may have to modify your diet) and you need to drink plenty of water befor each session.   Going for treatment daily for 5 weeks is in itself quite tiring and rather rules your life for that time.  I  travelled by public transport and was able to go to quite a few shows and concerts over the treatment period. 

As far as the brachy is concerned there are two types .  High dose which is delivered as an outpatient in short sessions lasting a matter of minutes, this is what I had and I found it very easy after the external sessions.  .The other is low dose which requires an overnight stay, . Some people have suggested there are fewer side effects with the latter.   

Your friend would probably be well advised to find out which type of Brachy is suggested.  I was always very glad to have my husband with me to listen to the answers to my questions and help process the answers, 

The fact that she has been offered a choice might mean that there is no major specific reason for having external treatment. Brachytherapy does seem to be suggested very frequently nowadays as the area at the top of the vagina is a likely place for recurrence.  .  

Even statistics can be misleading.  My consultant told me that she would never advise any treatment unless she was pretty sure that the benefits outweighed any disadvantages but even so, she admitted she had no crystal ball to tell her exactly who were the patients who  would experience side effects from the treatment.  

 I have rambled on a bit.  I hope some of it is helpful  and as you can see from my signature so far the treatment has done the trick!

Hi Oldlady (Anne)

thank you for sharing all that information, it’s extremely useful not just for my friend but also for me as I suspect it will feature in my future treatment too (worst luck)

it’s so encouraging to know you came out the other side

Xxxxx

Hi Christmas2019

Glad it was a help.  

I have remembered something that shows there is no simple answer.   I had two options for my RT treatment.   One, the 'local'  centre that would involve a lengthy car journey each day in heavy traffic,  with no feasible public transport alternative.   However I chose the other option, UCLH, which I could  reach easily by public transport, even though this would still involve  about 1 1/2 hours travel each way, it was preferable.  I could read or sleep on the train and I could still do most of the things I had planned.   However, afterwards I was surprised to find out that whereas UCLH regarded brachytherapy as an important and valuable addition to the external treatment, the other centre would  have only done the external treatment as they didn't think adding brachy would be worthwhile! 

So when even  the experts differ,  how are we to decide?  I had made my decision on the basis of travel. If the actual treatment offered had been added into the equation I might have found it more difficult.

I think what they recommend usually depends on stage and grade of cancer found and extent of operation.  For anything more than  stage 1 a grade 1 they usually recommend brachytherapy as the next level.of treatment. How this is delivered may depend on equipment available - aspecial type of machine is used for brachytherapy - and extent of radiotherapy needed.

I just had stage 1a grade 3 vaginal vault brachytherapy. Oncologist recommended it as I had total hysterectomy and am officially clear but grade 3 is aggressive and most likely to target VV area if anywhere. He said pelvic radiotherapy has more far reaching effects and at this stage just targeting the VV made sense. Most likely side effect is pelvic scarring. He said he finds his patients rarely have any significant bladder or bowel side effects long term after VV brachytherapy. Do not worry about being embarrassed. The nurses do it all the time and are very matter of fact. 

Hi Christmas,

My only experience with external radiotherapy is with my daughter's breast cancer, and my husband's throat cancer.

In my daughter's case her boob was very sore, and the skin split, but she healed up fairly quickly. My husband had 7 weeks of radiotherapy. Initially, his neck was red raw, and hard as a rock. After a year it was decided that the radiotherapy had damaged his larynx, and that was taken out. So, I can quite see that the bowels or bladder might be affected in womb cancer. Having seen him, and the after effects it amazes me how anything could survive radiotherapy! I would say it took him 3 years for his inside to heal completely after the radiotherapy. My daughter is still fine after 6 years, and my husband is 14 years post treatment.

They were both tired during radiotherapy, but that is the body repairing itself.

I have no experience of internal radiotherapy. Hope this helps.xxxxx

Hi Christmas2019,

I've been reading some of the other posts on this thread and what seems clear is that most of us have been offered a specific course of  some Radio therapy, consented and proceeded with it.  We are probably all a bit apprehensive at the start but once we start, we usually find it all very doable. 

Your friend is in the more unusual position of being given a choice of treatment.    This may be because of her particular medical circumstances or because of her age or some other reason.  I have to admit I would have found it very difficult to know the answer and make a choice.   On this forum I have sometimes seen it suggested to people who are uncertain about such a decision that they should ask their doctor  " If it was your mother/wife/partner what would you do?"

Hi Christmas,

I agree with Oldady. In all our dealings with cancer, the consultant has advised us on the best course of treatment, and we have gone along with that! After all, they are the experts. My daughter was advised to have a lumpectomy, chemo and radiotherapy because of her young age (37). She was also advised to have her ovaries removed, which she did, two years later.The consultant said he wanted to throw everything at it. Maybe your friend could ask the consultant for help in deciding. I've always found them approachable. xxx

Thanks nightingale19

good advice and very reassuring with regards to effect on bladder and bowel. Can I ask if you had pelvic scarring what effect that had? 

It’s encouraging to know your hysterectomy did the trick and you are cancer free. I expect you had lymph nodes removed too? 

Thanks again oldlady

I too would find it hard if I had to choose which treatment to have. My friend’s consultant didn’t advise her and just sent her off to the radiologist who again didn’t advise on the choice. It seems a bit hit and miss to me

She did see her GP and said she felt more informed following that and the information I passed on from you lovely ladies.

I expect I will also find your replies on radiotherapy helpful in the near future  xxx

Hi NannyAnny

thank you - all advice helps as knowledge is power!!

I expect it’s naive to think radiotherapy would be without some side effects. Your poor hubby though went through an awful time.

so glad to hear he and your daughter came through it but sorry to hear it damaged his larynx.

xx