appointment with oncologist to discuss adjuvent radiotherapy

I have leiomyosarcoma which is a very rare and aggressive cancer. I saw my sarcoma consultant at the Christie hospital a couple of weeks ago and expected him to say that I needed chemo or radiotherapy as I have LVSI too. I was graded at stage 1a grade 2. My consultant said that chemo and radiotherapy aren't effective against leiomyosarcoma so I will be monitored every 3 months with scans and consultations so that if I develope metastasis in my lungs they should be able to remove them quickly. It does worry me that the LVSI is not being treated though. Deb

HI Josb.  My diagnosis was similar to yours 1a, Grade 2 with LVSI and the MDT advice was for external RT.  The oncologist I saw also recommended brachytherapy as well .  She reassured me that she only suggested a course of treatment if she felt that the benefits outweighed any drawbacks.  However she did warn me that although the RT would reduce  the chance of a local recurrence in the pelvic area , there was still a chance of a remote recurrence elsewhere.  I went with her advice, and didn't find the treatment too arduous although it was very time consuming .  After 5 years I was signed off last November and thankfully have been pretty free of any long-term side effects.   Since treatment, I have read accounts from other people in a similar position and read various research reports online.  It seemed that the recommendation was firmer for older patients ( I was 76 years old at the time)  than for younger people.  So sometimes it seems that one option is to hold back on RT and only use it in the event of a recurrence.   Perhaps the thinking is that younger patients have more years to live with side effects and possible late onset problems.  

It would be marvelous to have a crystal ball to help with one's decision but sadly they haven't invented it yet,   There are certainly different opinions among the professionals.   I was told  at my first Hospital that I would not have brachytherapy as they felt it was of no value but at the second they felt it was important.  Sometimes they quote statistics but those are usually out of date and anyway refer to an average of lots of people not a single individual.  All one can do is ask lots of questions, trust the doctors, make a decision and then have confidence in that decision. i 

JoSB. Hi Jo. It seems no Oncologists agree on anything! I do know that Brachytherapy is a "one-off" option administered 6-8 weeks after the hysterectomy. I was stage 1B/grade 3 and had Brachy. Brachytherapy can effect bladder and bowels and I can say , 10 months on I've experienced changes in bowel habits but not too bad.

Other ladies who had LVSI were offered external radiotherapy, normally 5 weeks of treatment.

I think it's some of the older ladies (in their 70s - I'm a very young 68!) sometimes decide to decline Chemotherapy as it would impact more on their lives.

I'm not sure I've read here about long term effects from radiotherapy, hopefully some ladies will be along to also offer experiences. (My hubby had 3 weeks of external radiotherapy for Prostate cancer and suffered no side effects whatsoever - I know that's not helpful - sorry!)

Hopefully you'll get the answers you need to help you make your decision.

Sending hugs, Barb xx

Hi Jo I was also Stage 1b grade 1 with LVSI. My oncologist recommended external radiotherapy  as an insurance against recurrence ( his words) The risks of side effects was explained to me but I was never in any doubt that I would go ahead with it as my fear of recurrence far outweighed my fear of any long term side effects . Like oldlady I didn’t find the treatment too arduous , I just found it quite tiring and obviously annoying that you had to go each week day for 5 weeks . I am 2 years post treatment and am happy to say that I do not have any long term effects xx

Hi JoSB I was Stage 1a Grade 2 with LVSI and was treated at the same hospital as oldady, and had external radiation and brachytherapy.  It will be 4 years next month since I completed treatment, and I do have a few long term side effects, but as long as they don't get any worse I think I feel that it was probably worth it to have reduced the risk of recurrence, although I do of course realise this could still happen in spite of having the treatment.  I felt I wasn't really given much of a choice.  When I received my results after surgery, I am afraid to say I couldn't understand most of what the Oncologist was telling me as English wasn't his first language.  Thank goodness my daughter was with me as she told me afterwards more than I had taken in.  I had never heard of LVSI and had absolutely no idea that this could happen, I was led to believe that my cancer was contained and so surgery would be the end of it.  I hadn't found this forum until that point and made a post asking about radiotherapy.  When I went to the hospital to discuss the radiotherapy treatment, the Oncologist was lovely but it was a very rushed appointment as they were running so late and I didn't really have much in the way of questions as I had no idea what LVSI was all about, but I did feel that I didn't really have any other choice than to have it done.  I did have regular check ups to start with including blood tests and chest x rays, but that stopped last year with Covid and they have now decided not to do those any more and rely on us spotting symptoms, so I have an annual telephone consultation with the hospital I received the radiotherapy and an annual physical examination at the hospital I had the surgery.

Hugs, Lesley x