A cancer diagnosis can have a huge impact on you and your life, whether it’s your diagnosis or a loved one’s diagnosis. When you are diagnosed with a rare cancer, you may feel even more isolated. It can really help to find other people who understand how you feel and may have been through a similar experience. As part of Sarcoma Awareness Month this July, we want to highlight the Soft tissues sarcomas forum. This is a safe place to talk to other people, share experiences and find support. We want to help you find support if you or a loved one are impacted by soft tissue sarcoma. In this Community News blog, we’re going to feature some recent discussions from the forum and show you the topics that members talk about. Remember you can click the links underneath each post to go to the discussion. Why not get involved in a conversation?
If you’re new to the Online Community, we have lots of different forums where you can chat anonymously. If you or a loved one are impacted by soft tissues sarcoma, you can join our Soft tissues sarcomas forum by clicking “Join” under “Group Tools.” You can then post in a forum when you’re ready by clicking “Create new post” next to the forum title.
It’s important to remember as well this Sarcoma Awareness Month that there are other types of sarcoma, including primary bone cancer. While we’re focusing on soft tissue sarcoma in this blog, if you are impacted by primary bone cancer or bone sarcoma, the Online Community is here for you. We have a Bone cancer forum you would be welcome to join.
Lots of members come to the Soft tissues sarcoma forum because they’re waiting for results or they have just been diagnosed.
When you’ve just received results or you’re waiting for news, you may want to look online for answers. One member posted in the forum:
“The survival rates whilst searching the type of cancer they have suggested I have is making me want to throw up worrying about.”
Online Community member, Soft tissues sarcomas forum
Several members offered support, including one member who wanted to reassure them that they would get support:
“Keep your chin up and stay positive and I'm sure you will get the best support you need”
Online Community member, Soft tissues sarcomas forum
Talking to other people who have been through a similar situation can be really helpful, especially when you’re feeling worried.
If you’d like to read more about finding reliable information online, take a look at our blog.
Receiving a new diagnosis can be overwhelming. Members talk about what to expect and how they’re feeling.
“I have since been told that soft tissue mass has been located within my thigh, pelvis and uterus and that I will be preferred to oncology and gynaecology. This was 5 days ago and I have just been so confused since…I suppose if you've managed to get this far with me (thanks) I'm just wondering what next?”
Online Community member, Soft tissues sarcomas forum
Another member responded to let them know about the help and support available from Macmillan:
“If talking things through at any point would help then please do give the Support Line a call…It is understandable that it all feels a bit of a whirlwind. I hope you get some firm answers soon. If there is anything else you need, please do ask.”
Online Community member, Soft tissues sarcomas forum
If you’d like to access more support from Macmillan, please remember that alongside the Online Community, you can also contact our Support Line. Our support team are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat. You can also reach our teams on the Support Line here on the Online Community in our "Ask an Expert" section.
Members on the Online Community often say things such as, that it can be easier to talk online anonymously. Many people find it difficult to talk to family and friends about cancer. Members in the Soft tissue sarcoma forum also talk about how family and friends may find it difficult to talk as well.
One member started a conversation on this topic:
“I want people to talk about how my diagnosis has made them feel and I want the Cancer word spoken. Because I don't want anyone to feel like they need to hide, from me, or the cancer.
Does anyone have any suggestions on getting and keeping the conversation going?”
Online Community member, Soft tissues sarcomas forum
Members shared their different perspectives on this. One member talked about their personal experience:
“From the time of my diagnosis I was always very often and honest about it all from the type and to get awareness out there as I wouldn’t want anyone else going through what I went through. Unless you’ve had cancer or experienced it just the word makes people kinda awkward and feel sorry for you that you’ve had that experience. Ive always made light hearted jokes around it all. If people/friends want to know about it they will ask you in their own time.”
Online Community member, Soft tissues sarcomas forum
It can be difficult to manage situations where you may not want to talk, or someone you love doesn’t want to talk about cancer.
Our webpages on talking about cancer provide support and information which may help.
Members talk about coping with different treatments. This includes lots of conversations about chemotherapy.
One member asked:
“I don’t know anyone who has been through chemo so have no clue what to expect. I would also like to hear from people who have had chemo for recurrence in the lung - how did your body respond? I want to hear it all: the good, the bad and the ugly.”
Online Community member, Soft tissues sarcomas forum
Another member shared their experience:
“I'm on my fourth treatment with doxirubicin. I'm having it every three weeks for six cycles and am waiting on mid treatment PET scan results to see how it's working.
Side effects for me is have chemo Friday and it hits me mid afternoon on Sunday and I'm exhausted till Wednesday (freezer microwave meals and lots of sleep) after that I perk up and can do a bit round the house. Not really had much nausea but my hair all fell out (but I'd buzz cut it prior to starting treatment anyway). I wear wigs (shein ones are pretty great) and I have 12 different ones to match to my outfits.”
Online Community member, Soft tissues sarcomas forum
It’s important to remember you can also post in the forum and ask questions if you’re supporting someone who has been diagnosed with soft tissue sarcoma. When you’re supporting a loved one with cancer, finding support for you is important too. It’s also understandable to have lots of questions about their treatment plan and what to expect.
One member talked about how it can be hard to retain information when you are supporting a loved one with cancer:
“He is getting moved tomorrow to start chemo as his drs want to start fighting the cause (cancer) not the symptoms yet (swelling) I was told its a very rare and aggressive cancer bit nothing else of yet. All this waiting is a nightmare then the short burst of part information is overwhelming and hard to retain.”
Online Community member, Soft tissue sarcomas forum
Another member shared their experience to reassure them:
“If it offers any kind of help I’ve had a rare sarcoma which was stage 4 in 2012, so 12 years ago. Im with the Royal Marsden and they keep coming up with options to keep kicking this can down the road. “
Online Community member, Soft tissue sarcomas forum
We have online information about practical and emotional support for carers which might be helpful to look through.
Members in the forum also share their worries about cancer coming back.
One member wrote:
“It’s all been quite a journey and the prognosis doesn’t appear to be good, and surgeon was clear about high chance of recurrence, often in the same area or in the scar line….but as the oncologist says, live your life, don’t just exist from one x-ray to the next… not so easy to do, but I’m trying not to project into an unknown future and just deal with where I’m at…”
Online Community member, Soft tissue sarcomas forum
Other members could understand how they felt. One member responded:
“I struggled at times but eventually did a living with less stress course that really helped me. Your point about not just existing from one x-ray to the next and that unknown future really matches what I learnt.”
Online Community member, Soft tissue sarcomas forum
You’re not alone if you’re also coping with stress, whether you’re worried about cancer recurring or have other worries about cancer. Our webpage on uncertainty and cancer may help you if you’re feeling worried about cancer recurring. We also have a booklet on worrying about cancer coming back.
Our Soft tissues sarcomas forum is here to offer comfort and support. This is just a snapshot of the many different conversations and stories shared on the Online Community. Why not join the Soft tissues sarcomas forum and share your experiences?
