This week is Sarcoma Awareness Week. I wonder if you knew that? The problem with being a rare cancer type is that even if you have an Awareness Week, you’re only a small voice in the big noise of life. Even if you are able to get others to share the awareness and retweet or repost about it in their own social networking, how many people actually read it or look at links? However I, for one, have tried to share the word. I’ve taken Sarcoma UK leaflets into hospitals and GP surgeries. I’ve even taken to leaving a few on seats of trains or tubes or buses – and loved it when people pick it up and read it to fill a few minutes of their journey. You never know but what they read may well help someone else or themselves understand a sarcoma diagnosis.
So, I’m going to give you just a few facts about Sarcoma (extracted from Sarcoma UK’s website www.sarcoma.org.uk) and I’d really really appreciate it if you could tell someone something about Sarcoma.
- Sarcomas are rare cancers that develop in the supporting or connective tissues of the body such as muscle, bone, nerves, cartilage, blood vessels and fat.
- There are around 3,200 new cases of sarcoma diagnosed each year in the UK.
- Sarcomas account for about 11% of childhood cancers.
- Sarcomas account for about 14% of cancers in teenagers.
- Most sarcomas (approx 55%) affect the limbs, most frequently the leg. About 15% affect the head and neck area or are found externally on the trunk, while the remainder will be found internally in the retroperitoneum (abdominal area).
- There are around 70 different sub-types of sarcoma within these broad categories. These sub-types are determined by the tissue of origin (the tissue in the body where the tumour originally formed), genetic characteristics or by other molecular analysis undertaken by expert pathologists.
Types of Sarcoma
- Sarcomas fall into three broad categories:
- Soft tissue cancers
- Primary bone cancers
- Gastro-intestinal stromal tumours (a type of soft tissue found in the stomach and intestines commonly known as GIST)
Causes of Sarcoma
The causes of most sarcomas are unknown.
Despite the many different sub-types of sarcoma, the general pattern of treatment is similar.
Surgery is commonly viewed as the best option for a ‘cure’. Chemotherapy will usually be used with bone sarcomas before and after surgery, although it is less often used with soft tissue sarcoma. The case for chemotherapy following surgery is uncertain with soft tissue sarcoma but may be suggested with sub-types known to respond well to chemotherapy.
There are circumstances when radiotherapy offers benefits, usually after surgery but occasionally at other times too.
The treatment plan developed by your doctors will be specific for you. You may meet other patients with a similar diagnosis but who are having different treatment but this is usual and nothing to be worried about.
Surgery should be undertaken under the supervision of a sarcoma specialist multi-disciplinary team, even when the surgeon is not a regular member of that team.
There’s a really informative video created by Papercut Pictures called “All in it Together – Living with Sarcoma” from which you will a small selection of different ages, diagnoses and stories. Do take a minute to watch http://vimeo.com/papercutpictures/sarcomauk
Phyllodes is a soft tissue sarcoma…
Tonight found me at our London Sarcoma Support Group’s party to celebrate Sarcoma Awareness Week held at Maggie’s Cancer Caring Centre in Fulham, London. An amazing vital group of patients, carers and friends. The volume was high and the laughter loud. There was also tears and supportive hugs. It was lovely to meet some of the group members’ husbands, wives, children, partners who were also there supporting them.
Sadly one of the group had lost his wife only a few weeks ago and I hope found comfort in our company. Another has just found out his cancer has returned and he is to start yet another course of chemotherapy to keep it in check. BUT whatever was happening with each of us in attendance you knew that there was a strong bond of support there and a lot of giggling and laughter. Despite my not having been to several of the recent monthly meetings due to a number of reasons, I was touched that so many of the group were pleased to see me and remembered what I had been diagnosed with, what I was off doing shortly after we last met.
You see I’m not a ‘support group’ sort of a person. For those of you that know me well, you’ll know that despite my putting this blog up in the public domain, I’m actually fairly private about a lot. For some reason, for me, I find it useful to be able to use this blog to be open! I also know that my family can read it and know what’s going on but don’t need to speak about it or mention it – we’re not good at talking!
All that said, I enjoy attending the sarcoma support group… but I perhaps sometimes appear to the group as the one ‘who’s sorted’ and is ‘supporting’ rather than ‘needing support’!