Here on the Online Community, there’s lots of different forums where you can find support and talk to people who may be impacted by a similar diagnosis. Ahead of Urological Cancer Month in September, we’re catching up with recent conversations in the Kidney cancer forum and exploring the ways people have supported each other.
If you are affected by a different type of urological cancer, remember we also have a Bladder cancer forum, Prostate cancer forum, Testicular cancer forum and Penile cancer forum.
Let’s take a look at some of the common topics and conversations that have been happening recently in our Kidney cancer forum. If you’d like to respond in any of these conversations, just follow the links under the quotes.
A new diagnosis can be shocking, whether it’s your diagnosis or a loved one’s. Dealing with the news can be hard to cope with.
One person posted about their experience receiving the news:
“It's a long story but I ended up in hospital after a few days having a chest X-Ray and 2 CT scans. Turns out I have kidney cancer… I'll never forget the moment I was told. I have surgery to remove my entire kidney and surrounding "bits" in a few weeks. It still hasn't sunk in at all. I'm a shy person so find it hard to talk to people but I desperately want to. I'm aware of all the online help but actually asking for it is tough for me.”
Online Community member, Kidney cancer forum
Lots of members reached out with support and to remind them that they’re not alone:
“I'm sorry you have to find yourself here, it must have been an awful shock to be told your cancer news in such a blunt way. But you have done the right thing in reaching out to the people here on the forums, where you'll get plenty of support from people who really understand what it is like to go through this.”
Online Community member, Kidney cancer forum
“We're all here for you to offload.”
Online Community member, Kidney cancer forum
Macmillan also has lots of information and support if you are coping with a cancer diagnosis.
The forum isn’t just for people who have received a diagnosis themselves. If you are supporting a loved one, you can also find support on the Online Community. One member posted about their husband receiving a kidney cancer diagnosis. They shared how they and their husband are feeling:
“We received the unexpected news this afternoon that my husband has kidney cancer…This news has come as a huge shock, but the consultant was very positive that this would be a cure and not just treatment, the tumour is early stage (not sure I have the right words)…I have been feeling very stressed about the biopsy results ( I suffer with depression and anxiety) but now feel calmer now that I have the diagnosis and treatment plan, but will burst into tears if anyone is kind to me! He is absolutely terrified.”
Online Community member, Kidney cancer forum
Other members shared that they had been in a similar situations themselves, and they were happy to answer questions.
“I have been through this situation myself when I was diagnosed in September 2022, feel free to ask any questions you may have!”
Online Community member, Kidney cancer forum
Another member shared a bit about their experience:
“You've just described the situation I found myself in this time last year. My tumour was bigger though. I eventually had the kidney op at the end of February…After 4 months of it I'm tolerating it pretty well, have been away on holiday, and have returned to work part time. Try not to worry, it sounds like it's been caught early and you are looking at a tough few months, but if your consultant says there's a cure then grab it with both hands! I spent two nights in hospital post op and was home on the third day. Very happy to answer any questions if you think that would be useful.”
Online Community member, Kidney cancer forum
If you’re supporting a loved one, Macmillan has online information about practical and emotional support for family, friends and carers. If you’d like to find other people supporting loved ones with cancer, you can also reach out in our Family and friends forum.
Lots of members in the Kidney cancer forum talk about preparing to go back to work after cancer treatment. This can be a challenging time with lots of emotions and questions. Members share how they’re feeling and share their experiences.
One member wanted to find out how other people felt returning to work:
“I'm mentally preparing myself to return to work on the 21/8 - 8 weeks post op. I'm anxious but returning on reduced hours! Anyone else back at work!? How did you feel?”
Online Community member, Kidney cancer forum
Alongside other members who shared their experience, one of our Community Champions let the member know about our Work Support Advisers:
“I hope that work will be supportive during your return. Macmillan Work advisors can also be contacted via the Support Line or the Ask an Expert section if you do need to talk through any issues.”
Online Community member, Kidney cancer forum
You can talk to our Work Support team about options that might be helpful for you if you are navigating work and cancer. To get in touch with the Work Support team, you can call 0808 808 00 00, send an email or use live webchat between 8am – 6pm, Monday to Friday. You can also contact them on the Online Community in our “Ask a work support adviser” section.
We also have online support on returning to work after cancer.
We also have members who have come to share their experience of successfully returning to work:
“After 5 months post full nephrectomy I am back at work albeit only a couple of days a week. For all those who are early days post surgery I get it can be frustrating and painful but listen to your body and take the time you need…There's no doubt having cancer and going through major surgery changes you both physically and mentally you need to learn the new limitations of your body but it does get easier with time.”
Online Community member, Kidney cancer forum
Lots of members in the Kidney cancer forum talk about recovering after treatment.
Many people in the Kidney cancer forum talk about having a radical nephrectomy or partial nephrectomy. These are surgeries to remove all or part of a kidney. If you or a loved one has had this surgery, there are lots of people on the Online Community who are sharing their thoughts and experiences.
One member talked about coping with discomfort following surgery:
“Last week I had a partial nephrectomy. I had very little discomfort from the incisions. I have six incisions. I have noticed that some of them are reddish and weeping a little.”
Online Community member, Kidney cancer forum
Another member responded to share their experience, and to encourage the person to contact their medical team:
“I would ring the ward you were on. I developed a lump and was worried and they told me to go straight in and a doctor checked it.”
Online Community member, Kidney cancer forum
Another member asked for other members’ experiences coping with side effects after surgery:
“Has anyone else experienced extreme tightness in the flank area where the kidney was removed?? Unsure whether to contact my GP, or am I just being too optimistic, feeling like everything should be more normal now…”
Online Community member, Kidney cancer forum
“I'm afraid it does take time and can feel tender for a few weeks. After all, the procedure cut through skin, muscle, veins so there's a lot of healing to be done! I had a partial last October and, while all "normal", the operation site still doesn't feel as before - the specialist has confirmed that is "normal". Just take it steady, day at a time and all that....”
Online Community member, Kidney cancer forum
It can be important to remember that recovery and coping with side effects can look different for everyone. But it can still be helpful to get support and tips from other people who have been through a similar experience.
These are only some of the conversations that happen in the forum. People who have been diagnosed with kidney cancer and their family and friends talk about lots of different emotions and experiences every day. You can join the Kidney cancer 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. You can also scroll through other people’s posts and click “reply” to get involved. We also have guidance and support on using the Online Community on our Help Pages.
