Ewing Sarcoma - Amputation

Hi Kate_ 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your partner's diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Kate

You are having a very rough time, you and your partner.  I don't have a similar situation in myself, just felt the need to make contact with you.   I'm going through chemo for breast cancer - under my arm then it will be surgery and radio therapy.    In my small opinion I think you need dedicated support.   I would like to see this online community used more with lots of emails and replies.    It's still fairly early in your journey and you both need help processing it.  I hope you find something useful and positive here or in your community.   Love to you.

Hi Kate,

I was diagnosed at age 32 with Ewing's Sarcoma in Feb 2025, the bone tumour was located in the heel bone of my foot and had been causing me pain since 2022, periods where I couldn't walk for weeks at a time to the point where it made me cancel a lot of plans and trips. I received all kinds of diagnosis until finally finding out it was bone cancer.

From the first moment, the doctor told me I may lose my foot, so I totally understand how tough it is to swallow such news.

My plan was 15-17 rounds of VAC(VDC)/IE chemo alternating between a 5 hour infusion and a week-long stay in hospital, with surgery after round 9 either being a prosthetic heel implant, or a below the knee amputation. Around the 6th cycle the imaging also showed that the tumor had almost completely vanished.

In July 2025 I met with the surgical team to discuss their recommendations on surgery, and they unanimously said that an amputation was the best option for me, as I also was extremely active before this, doing travelling, hiking, gym etc. Although I always knew this would be a possibility, this was when it was certain - they even showed me videos of some of their other patients just living life, playing golf, skiing etc, which was very encouraging.

In December 2025 after pausing at round #9 for a month, I had the amputation which required a 6-night stay in hospital, then I went home. As for adaptations I live in a flat with a lift, so stairs weren't an issue, I just had to make sure I had a shower/bath chair (when he's able to bathe again after the wound has healed), a wheelchair (I rented one for a few months) and a good pair of crutches with padding on the hands, as he'll be using them a lot.

He'll need help with cooking meals, organising his life and getting outside every now and then in the chair to help his morale. Even small things we don't think about such as going to the bathroom at night, carrying a glass of water or food to the table. When I got more used to the crutches I had a small backpack so I could carry things for myself without having to always ask others - which is a pretty good morale booster being able to do the occasional thing for yourself every now and then!

I'm also lucky in having an extremely helpful and supportive partner, which also seems the case for your partner in having you, so that's great! 

By Feb 2026 I was already at the prosthetic clinic getting fit for my first leg, which is an extremely odd sensation at first, especially the silicone liner you have to wear, it's all about getting used to the new sensations on the stump, which takes time but does happen.

They did a biopsy on my amputated foot and it confirmed 100% necrosis of the tumour cells, which made them revise my scheduled chemo from 17 to 15 rounds.

A month ago I finished my 15th and final round of chemo and I'm on my third temporary prosthetic leg, waiting to be fit for my final prosthetic. I'm walking around the house unassisted and without a crutch, although I still use one outside for stability on pavements. I went to a day music festival almost 2 months ago with a friend and I regularly walk to the supermarket with my partner.

All in all I just want to show that life doesn't stop after amputation, and having this located in the foot is a good thing in spite of the terrible disease that is cancer, as it allows the surgeons to take such a clean margin, and has a very good success rate in removing the disease.

It's mentally very difficult, and that is something that requires a lot of work, there are going to be a lot of absolutely terrible days, but every so often there are glimmers of hope and we just have to try and remind ourselves of that when we're down in the depths of the bad days. Something that helped me is I started writing a daily journal around a month before my amputation, and carried on through it and many months after.

I'm more than happy to chat about this or answer any questions you both might have, I also know another Ewings survivor who also had an amputation below the knee, and they are now 17 years down the line post-cancer.

Feel free to send me a message any time, and wishing you the best.

Joe

Hi Joe, thank you so much for this. Extremely helpful. My partner was very lucky in the sense that they found it a lot sooner than most do I think. From beginning symptoms to diagnosis was 8 months,which I know is faster than most. This was really reassuring and I'm so happy to hear how far you've come in such a short time. I wish you the best of luck for the rest of your treatment. ️

That's fantastic that it was found so quickly! Send him all my love from one patient to another, and do keep me updated on how it goes 

Don't hesitate to reach out any time you need