Surveillance X-ray now 2 months overdue

Hi Rachella12a04b 

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. 

Janice was diagnosed over 10 years ago and has been treated with chemotherapy, this has rendered her cancer stable - living with cancer sounding a lot better than the alternative. Now she only really has a check up once a year and the consultant does talk about releasing her to the care of our GP.

How long since your husband was diagnosed and what form of treatment did he have? I wonder if if might help to talk to one of the staff on the helpline here - 0808 808 0000 - open from 8am to 8pm as they might be able to provide some support.

<<hugs>>

Steve

Thank you for your reply, Steve, and for sharing your and your wife’s experience. It sounds like you both must have had a pretty tough time of it, but I’m so glad she got the right treatment and is down to yearly check-ups now. It can feel like it’s consuming your life a bit when the check-ups always seem to be just around the corner.

My husband found a lump in his inner leg, just above his knee, in August 2021. It was quite small at 17 mm at its largest point. Both in our thirties and, never having heard of soft tissue sarcoma before, assumed it must be a swollen gland and delayed going to the doctor for two months. The lump was visible through his skin. He went to the GP, who sent him for an ultrasound. We waited another two months for the scan. They said they couldn’t tell what it was and referred him for an MRI a few weeks later.

Three weeks after the MRI, he had a phone call from his GP asking if he had any family history of sarcoma, or if he’d been feeling unwell or lost weight. We both went into panic. He was then referred to the Royal National Orthopaedic Hospital in London. He later received a call to say there wasn’t enough evidence to confirm it was sarcoma, but there was enough to justify removing it. As it was small, they operated in March 2022 to remove it and sent it off for biopsy.

In May 2022, he was told it was leiomyosarcoma grade 2 and that the lump had been fully removed. He was advised to have a chest X-ray to check it hadn’t spread. In July 2022, he went to London for an MRI on his leg and the chest X-ray. He was told at the appointment that the images would need to be properly assessed, but they all looked clear and this was later officially confirmed.

They explained that he would be on close three-monthly surveillance for the first two years, then it would move to six-monthly, and after five years to yearly, continuing until the ten-year mark. He’s now been clear for three and a half years.

Unfortunately, despite him being all clear, we’ve both lived in fear of it. We didn’t ask many questions or do much research beyond the initial “what is sarcoma” Google search, which was a huge mistake. I’ve only just learnt that it was leiomyosarcoma because it’s taken me this long to be brave enough to research it properly. I actually feel better since doing so, and I’ve been able to share the positives I’ve learnt with my husband.

He now struggles with terrible health anxiety and scanxiety. Every ache or pain sends him into a state of worry, but he finds it difficult to talk about and suffers in silence. It’s hard to know how best to help him. If you have any advice on that, it would be amazing.

The good news is that London Royal National Orthopaedic Hospital are going to get him an appointment with a different clinician this time. It should be within the next two weeks. He's no longer high risk, but we'd rather not take any risk.

Sorry this was such a long read.

Rachelle

Hi

Yes google can be "interesting" as there is a tendency for people to more often share horror stories than good news and that is even before people who want to make a quick buck out of people with cancer with their latest choice of ?cure?.

It is quite interesting when Jancie sees a new GP though, when she talks about Leiomyosarcoma the number of doctors I have seen look it up on wikipedia. 

Scanxiety is really very common, however if we can change the mindset to "if something started then it would be found really quickly and treated early that can be helpful. 

<<hugs>>

Steve

Hi Steve,

Yes, even just the mention of sarcoma seems to shock the GP's. I remember one time we thought he knew something horrendous that the hospital were keeping from us, judging by his reaction. I’ve since learnt that GPs rarely see sarcoma cases in their entire careers, which really puts it into perspective.

I’ve definitely started to view the scans differently now. I’ve been through a lot myself recently, and as a result, I feel a lot braver than I did before. I wish my husband could get to this place too, so he can live freely without constant worry. I hope one day he will.

I’ve spent a lot of time on the forum today reading people’s posts, and I noticed quite a few of your responses about your wife. She’s been through so much, and it sounds like she has incredible strength. It’s also inspiring how much you’re helping others here with your experience. You’re both extremely admirable.

Wishing all the best for you both.

Rachelle