Hi, my 15 yr old son was diagnosed with Rhabdomyosarcoma in December 2025. It originated in his testicle, which was removed but it had metastasised to his lung. Chemotherapy started on the day of diagnosis. He was due to have 9 cycles of chemotherapy followed by 12 doses of radiotherapy and then 12 months of maintenance chemotherapy.
Unfortunately, we found out a couple of weeks ago after 6 cycles of chemotherapy that the chemo hasn't worked, one of tumours in his lung has continued to grow and there is also a new one. My son is being being very positive and whilst I'm trying to be, I'm also really struggling and I don't want to let him down. I seem to have gone from coping (within reason) to being constantly tired with awful aches and pains. I feel overwhelmed with thoughts about his health, finances, my employer, feeling like I'm not showing up for my son, husband and adult daughter. I'm struggling to reach out to friends as I'm aware that they have their own problems. I'm starting counselling tomorrow which should hopefully help.
We're awaiting the PET scan results from yesterday (oncologist wants to see the images first and discuss at the MDT). But we do know that providing nothing else is found his new treatment will start next week and surgery to remove the larger tumour in his lung will happen in a couple of months. But we've gone from a positive prognosis to a less positive prognosis and I'm feeling overwhelmed and I'm scared.
I'm just wondering if anyone else has experience with Rhabdomyosarcoma or sarcomas in general.
Many thanks x
Hi Madre
Welcome to our community, I hope you find it both informative and supportive.
I am Steve, one of the community champions and my experience of cancer is via my wife who has Leiomyosarcoma.
In many ways it did seem Janice was coping better than I was, it can be really hard watching a loved one go through this and the feeling of being helpless can be very difficult. When I first reached out for help I was encouraged to speak to my GP and he was very helpful. The local Maggies at our hospital is really supportive and it is great to speak to others in a similar position. Macmillan have a hand tool here in your area that can help find support near you - sometimes it helps to use the hospital postcode too.
I find looking at your emotions when someone has cancer quite helpful as being able to recognize the emotions and accept them as normal can help to make them less overwhelming.
You mention work, I hope they would be understanding and it can be helpful to look at Your rights at work while caring for someone with cancer
<<hugs>>
Steve
