Cancer, self-advocacy and pre-existing health conditions on the Online Community

Our forum members share experiences of self-advocacy, pre-existing health conditions and variations in cancer care. Self-advocacy means speaking up, asking questions, and making informed decisions, whatever stage you're at.

Managing your own healthcare can be even more difficult if you have other health conditions as well as cancer. And there are unacceptable variations in cancer care across the UK. This means not everyone gets the same experience, depending on who they are and where they live.

Learn how Online Community members navigate these issues.

“I have inflammatory breast cancer and was told the only options was non skin sparing mastectomy with a year long wait for reconstruction, after being referred to another hospital despite being told by the previous hospital I couldn't have an implant, they are offering me an inplant, they are offering just to take out the tumour area, they are offering a mastectomy as well with a diep flap reconstruction straight afterwards.  I find it so odd that without that referral to another hospital I would not be given the range of options and people in a support group I used to be in tried to tell me I could only have a full mastectomy then diep flap, this is why it is so important to ask questions, get referred to some where else if need be, and take support but concentrate on your journey because everyone's cancer and treatment options, as well as personal views and preferences are different.”  – samroz3, Inflammatory breast cancer forum - Anyone else out there that doesn't want masectomy? Importance of checking out options and also battling BMI criteria. 

"I'm chasing every appointment myself. Blood tests are being scheduled wrong (too early) and I have to fix them. Pain is returning, and I still pass blood despite the stoma. I’ve had to ask my GP to order tests that oncology ignored, like a testicular scan. When I ask questions, I’m told “it’s aggressive,” “it’s advanced,” or simply “no” — no explanation, no hope" - Sicl45, Neuroendocrine forum Stage 4 NEC Neuroendocrine - poorly differentiated carcinoma Ki-67 90% 

"I don’t quite understand why they wouldn’t look at my mum’s molecular profile upfront. I know it’s something I shouldn’t bog myself down with too much but I want to know that my mum is getting the best possible treatment and that the doctors know as much info about her specific tumour and can treat it accordingly. It helps to know there are constant innovations happening for endometrial cancer but frustrating when you realise some of the innovations aren’t being utilised in the UK as they may be in other countries. I don’t want to wait for the cancer to come back to start finding out this information but it doesn’t seem like this is something that’s really done in the NHS." - Rlove965, womb cancer forum - RE: Molecular testing after hysterectomy 

" I was diagnosed with base of tongue cancer yesterday... it has taken me a while to get to this point after going to doctor then Pharmacist then sent back to doctor then sent to the dentist then phoning the hospital myself to ask why ive not heard anything." - Susie, New to the Community forum - RE: tongue cancer diagnosis  

"Thought I'd say hi and see if there is anyone else out there with MS? And now I've just been diagnosed with CML. Kinda feels like my body is going through it at the moment. And it seems to be a rare thing, of having both of these conditions, as all the cancer specialist consultants that I have seen regarding the CML haven't dealt with anyone with both these conditions before. Makes me feel a bit alone with it all." - Kitty1175, Chronic myeloid leukaemia -  RE: New diagnosis alongside existing neurological condition 

"I have had a mastectomy and am in the middle of chemo to be followed by 15 sessions of radiotherapy.  I have a pre-existing anxiety and depression condition which is being made worse because of the massive change to my life and the side effects of the treatment.. Is there anyone out there in a similar situation who can give me some tips on how to survive this." - Christabelly, breast cancer forum -  Breast cancer and anxiety 

We hear that many of you are working really hard to manage your own healthcare. We hear that it can be particularly difficult for people with a pre-existing condition. At the bottom of this blog, we will include some useful links to information that might be helpful.

There's also lots of useful experiences being shared on the Community, from people who have been through it themselves. Here's Community Champion Millibob to tell you why he spends time volunteering on the forums to support others.

"I do what I do because on diagnosis I had a great urology team but the information provided wasn't enough. I was told HT/RT get on with it. Joining this Community opened my eyes to how the treatment works, the side effects and tips for living a normal life with Prostate Cancer and they were a great support to me - so I have stayed and although my personal journey is far from over, I am more than happy to help others." – Millibob, Prostate cancer forum  Thank you︎ 

There's lots of useful information and heartfelt support to be found across the Online Community. For example, a member approached the Triple negative breast cancer forum to ask about recommended hospitals. Members responded to share their experience of cancer care at their hospital. 

"Hi I'm new to this forum and would like some advise about hospitals in London with consultants that specialise in treatment for TNBC." - TNBC24 Triple negative breast cancer forum

"I've been really well looked after at St. Bartholomew’s in London. The Pembruzolembaub, carboplatin, and paglitaxel combo for 12 weeks, then AC + pembro for 12 weeks has been my protocol. I was diagnosed triple negative, grade 3 and I have the brca 2 mutation. I responded well to treatment and had surgery earlier this month. I am waiting to hear if the cancer is gone or if I need radiotherapy. St. Bart’s  oncologists, surgeons, breast care nurses and chemo nurses have been really really good. Sending you lots of support as you navigate through your choices." - HiddenGrayDog, Triple negative breast cancer forum

In the Prostate cancer forum, members shared their experience of pushing for better care.

"Well we finally rang the hospital hoping that they may have a list of those willing to take a cancellation for biopsy cancellation but it was a waste of time.  They said the they rarely get cancellations and that if they do they look at the people who have later biopsy appointments and prioritise them. So all we can do is wait.  Apparently they only have 2clinics a week.  She also says if the consultant is called into surgery these can be cancelled!  She was a bit grumpy tbh. On a more positive note the GP has done good and LH has now started on Tamsulosin.  Gutted about the biopsy though and with the resident doctors going on strike 2 days before LH's appointment I am really worried" - Dogs4me, Prostate cancer forum - https://community.macmillan.org.uk/cancer_types/prostate-cancer-forum/f/diagnosis-and-treatment/298007/biopsy-cancellation---no-luck?

"When I have needed to 'gee things up' I have visited our trust's cancer centre in person and asked to speak to a person responsible. It's worked for me twice. My Trust had biopsy clinics on two days  per week (Thursday & Friday) with eight patients per day but did call in private support to put on a Saturday clinic when necessary." Osca2023 - Prostate cancer forum - https://community.macmillan.org.uk/cancer_types/prostate-cancer-forum/f/diagnosis-and-treatment/298007/biopsy-cancellation---no-luck?

To meet other members talking about self advocacy and pre-existing conditions, find our guest blogs:

• Meet Mr U - self advocating through cancer treatment with a pre-existing heart condition
• Meet Kirsty, living with breast cancer and ulcerative colitis

Macmillan believe that everyone should get the very best cancer care and treatment, no matter what. If you’re worried about the care you’re receiving, or feel you’re being treated unfairly, Macmillan can help:

• Understanding your cancer care rights
• Raising Your Voice toolkit
• Cancer waiting times

How do you advocate for yourself through cancer care? Have you experienced variations in healthcare across different hospitals and areas of the UK? Are you being treated for cancer alongside a pre-existing health condition and want to share your experience? 

Join the conversation here in the Cancer Chat forum. 

Please do contact the Community Team by email at community@macmillan.org.uk if you have any questions, or would like to get involved in sharing your story.