Our new blog mini-series is based on a question ‘what you wish you had known’. The blogs feature different cancer treatments or situations you might be facing. We’re bringing the Community together to share hints and tips.
Today we’re encouraging the sharing of your experiences of diagnosis. We know how helpful it can be to hear from someone who has been through it themselves.
If you are facing a cancer diagnosis we hope this blog will help you find the suggestions you need.
Everyone's diagnosis experience will be different. But there are some things that can help us all.
"I'm glad I got advice here about making lots of notes and asking lots of questions. It's helped me feel in control." - Community member, Prostate cancer forum
“Things will get easier when you know what you’re dealing with and what your treatment plan is, it somehow feels like you’re more in control. ” -Community member, breast cancer forum
"First I must thank all on this forum….we went into my husbands’ first appointment on the Fast Diagnosis Pathway this morning better prepared than what we would have been." - Community member, Lung cancer forum
Some people might feel confused about the diagnosis process. The Community is here to share experiences to help you find your way.
"Usually any results from testing and biopsies go to a multi disciplinary team meeting (an MDT) where a number of the medical professionals will discuss your case and decide on treatment going forward. Depending on how often your hospital holds these meetings will determine when you get the results." - Community member, breast cancer forum
Lots of people say that the waiting and the not knowing can be the worst part.
"When you are waiting time goes really slowly and you can feel like nothing is happening. Behind the scenes it probably is all go but for me it felt a time of limbo. Diagnosis is hard and you just want to know for sure and the uncertainty is hard. For me once I knew what I was dealing with and had an idea of what would happen and when, things felt a bit less overwhelming." -Community member - What you wish you'd known about diagnosis conversation
Some members felt that the wait for a full diagnosis was a lot longer than they had expected.
"The only niggle I had during the whole process was not being warned about the length of time it could take. I was told after radiotherapy finished to start getting my life back to normal, so assumed my treatment was done ... I just wish I'd been told an approximate time frame from surgery to treatment ending if both radiotherapy and chemo are needed. If it turns out that both aren't needed then that's a bonus." -Community member - What you wish you'd known about diagnosis conversation
"I would have found it helpful to know that diagnosis is not a linear process. It's not so much step by step as a lot of things that are going to happen, sometimes really quickly and sometimes really slowly. It's helpful to know you may need to ask for your GP to receive a copy of all results and letters (not always automatic) and that having digital access to your GP records is useful. It's good to know how communication will happen - via app, phone or post or a mixture of all." -Community member - What you wish you'd known about diagnosis conversation
Some members are talking about self-advocacy within the healthcare system.
"My advice is to ask for as much information as you need, insist on meetings with the proposed surgeon, see what other research is out there, ask for referrals if you want one, reach out to other teams for a second opinion, challenge where you feel you need to, and choose the option that is right for you."-Community member, What I wish I'd known about diagnosis conversation.
"Also, when you are not happy with the treatment or service, raise this, if we don't speak out then how do we expect things to change." -Community member, What I wish I'd known about diagnosis conversation.
It can make a big difference to be able to talk with someone who understands. This member was looking to chat with someone who had been through a similar diagnosis.
"We are all in shock and trying to come to terms with our new reality and I was just hoping to connect with anyone going through similar. "-Community member, Oesophageal cancer forum
They were able to connect with a member with direct experience who shared some advice.
"My mum was diagnosed this time last year...previously fit and healthy, and a huge shock when she was diagnosed. Leaves you feeling very disorientated, but after the process gets started and you have contacts at the hospital you can begin to focus on your journey with all of this. Hardest bit is the waiting. Sending you strength, and if you ever have questions these forums are really helpful. One thing I will say is everybody's diagnosis is incredibly different, the circumstances wont always match up to Googles predictions, for good and bad. Try not to let your thoughts runaway with you, and focus on what you can do when you know more xx" -Community member, Oesophageal cancer forum
"I was really glad I did my homework relying heavily on the Macmillan website and community and other reputable sources. I don't regret being prepared!" -Community member, What I wish I'd known about diagnosis conversation.
It's important to use trusted sources of information when looking for information about a cancer diagnosis.
Looking for more tips or have your own advice to share? Go to What you wish you had known before diagnosis?
