For some people, sarcoma can change their appearance. This can affect how they feel about themselves and their body.
Some people find this affects their sex life. In this case, talking to your partner can really help. You can also talk to your GP or clinical nurse specialist (CNS). They are used to having conversations about sex and relationships, and will treat what you tell them sensitively and confidentially.
Living with scars
People with sarcoma have told us that living with scars from surgery has an impact on their mental health. It might be that the scar is noticeable, and you no longer feel confident wearing certain clothes, or you worry about people staring.
Some scars, like keloid scars, are more obvious raised bumps. They tend to be more common in young people, pregnant people, or South Asian, Chinese, African Caribbean or Black African people.
Speak to your healthcare team about treatment for your scar. They can explain whether treatments such as scar massage or laser therapy may be suitable.
The charity Changing Faces provide support for improving your confidence if you live with a visible difference.
I had a massive love-hate relationship with my leg. I could not look at my leg or even touch it, so that all had a knock-on effect. Eventually I grew to love my leg and its scars but knew there was more I could do to help get it working and I ended up having scar massage therapy, which really helped with the appearance of the scar.
Lorna, who was diagnosed with spindle cell sarcoma
Limb loss and phantom limb syndrome
It is common for people with limb amputations to get phantom limb syndrome, or phantom limb pain. Some people feel sensations such as:
- sharp pain
- shooting pain
- stabbing pain
- throbbing
- burning
- aching or cramping.
You may feel a sense of loss or grief for the body you used to have. You may find it difficult to adjust to changes in your independence. It is common to feel this way.
If you’re going through this, there is support available. Charities like the Limbless Association help people to live well with limb loss by providing practical and emotional support.
Hair loss and identity
Sarcoma treatment, like chemotherapy, can cause hair loss. For a lot of people, hair is an important part of their identity. Losing your hair can be a difficult thing to go through, whether that’s head hair or facial hair.
If you are worried about hair loss, there are ways to help.
- Ask your healthcare professional if scalp cooling is suitable for you. This is a way to reduce or prevent hair loss from chemotherapy. Macmillan has more information about scalp cooling.
- Get a wig through the NHS. Some people qualify for help with the cost of wigs on the NHS. Find out more on the NHS website.
For me, losing my beard (which I’d had since my teens) was really difficult. Combined with bloating from steroids and my head hair loss, I didn’t really recognise myself. But for most people, it is temporary, and I tried to remind myself that looks are so unimportant in the grand scheme of surviving and spending time with loved ones (while still grieving for the facial hair that was part of who I am).
Ben, who was diagnosed with osteosarcoma
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