With the many different Community groups you can get support from here, it’s not always possible to keep up to date with everything that’s being discussed.
This blog is highlighting some of the recent discussions from the Soft tissue Sarcoma forum to help keep our members connected with each other. Although you may not share the same cancer type, there will probably be some similarities with the questions asked from emotional challenges and practical needs.
There may be some featured discussions that you relate to in this blog so stay and have a read, you may find some comfort from knowing you're not alone with how you are feeling.
“I’m sure these forums will help as well to connect with those in a similar situation.”
Community member, Soft tissue Sarcoma forum
What are members posting?
What it is like living with a rare cancer diagnosis:
Living with a rarer cancer may leave you feeling isolated and lonely. This is why we often see how helpful it can be for members to join groups like our Soft tissue sarcoma forum to connect with others who have a similar diagnosis to you.
“I am sorry that all you ladies have found yourself here due to LGESS but I am very pleased to be able to talk to other people who have the same disease. Cancer puts you in a very lonely place, and it is even more so when nobody else has the same disease. I hope my story will encourage you all with your new diagnoses, to know that this is something we can live with.”
‘Anyone else been diagnosed with LGESS?’ discussion thread, Soft tissue sarcoma forum
Worrying about symptoms and waiting for results:
It’s natural to worry about symptoms. If you have some concerning symptoms, it’s always good to speak to your doctor about them. They might be nothing to worry about, but it can be helpful to put your mind at ease and have some with your GP to talk about your concerns.
Your GP can arrange for some further tests to be done which can take some time. During this time, it’s natural to feel anxious as you are still waiting for more information. If you're feeling anxious, there's some useful support information in our The worry of waiting blog.
“Last week I had to go for a breast exam which ended up with me having a mammogram an ultrasound and then having biopsies on two lumps found under each of my nipples so I'm playing the waiting game again to see what my results are and I'm not going to lie I'm really scared!”
‘Worried’ discussion thread, Soft tissue sarcoma forum
Waiting for results can cause a range of emotions and can be helpful to reach out for some support. Why not share how you are coping in our Soft tissue sarcoma forum today just like this member has done?
Practical issues and side effects:
It can be helpful to ask others how they cope with the practical issues like this member has done below. The Online Community can be accessed 24 hours a day so when you need support in the middle of the night, why not log in to ask questions and chat to others who are also going through something similar.
“My husband has sarcoma. Has been on various treatments. Now on a drug, Selinexor, permanently it appears. He had a pituitary op in 1988 and that affects frequency of weeing. Now he is up as many as 8 or more times in the night. No-one seems to know what to do. Has anyone had experience of this too frequent urination and what they did.”
‘Getting up many times in the night to wee’ discussion thread, Soft tissue sarcoma forum
“I have recently undergone a radical mastectomy following diagnosis of a high grade angiosarcoma, caused by the radiotherapy I had 7 years ago for breast cancer. All been a bit of a shock as I am sure you can all relate to. Was getting on with our lives, cancer was behind us, all was good with the world.”
‘Radiotherapy induced angiosarcoma’ discussion thread, Soft tissue sarcoma forum
Emotional effects of cancer:
It’s not uncommon to be left feeling confused after your appointments. Understanding and making sense of medical information isn’t always simple which is why there’s teams here at Macmillan who are here to help. There are often discussions about diagnosis, treatments offered and the coping with side effects like these ones below.
“we are feeling like a whirlwind has hit us. GIST it seems is a rare type of cancer, though the nurse never said the word cancer.”
‘GIST’ discussion thread, Soft tissue sarcoma forum
Looking for more information?
If you want to know more about the types of soft tissue Sarcoma and the symptoms of soft tissue sarcoma? why not take a look at the ‘What is Sarcoma? Who gets it and how to treat it’ blog the Macmillan Cancer information team have posted on the site recently?
There’s more information about Soft tissue sarcoma on the Macmillan website if you want to read more.
Don’t forget you can speak to the teams here at Macmillan if you need some support. You can post questions in our Ask an Expert section of the Community, or contact the Macmillan Support Line on 0808 808 00 00 for free.
You can also get in touch by sending an email or using live webchat during the opening hours of 8am to 8pm, 7 days a week.
If you’re affected by soft tissue sarcoma, why not share what's brought you to join the Online Community in our Soft tissue sarcoma forum. All groups are safe and supportive places to access peer support when you feel you need it. If you need a place to talk about how you’re coping and ask questions, start a discussion to connect with others.
