Hello

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I’ve only just discovered this group, I wish I’d found you all earlier.

I am 55 year old lady who was diagnosed with PPC in June 2023 after 3 mis-diagnosis of menopause, ulcer and inflamed gall bladder.

They drained 9 litres of fluid from my abdomen and I’ve had 8 rounds of chemo and debunking surgery which also included a permanent stoma.

Unfortunately the chemo didn’t work as well as they hoped and they were unable to remove all of the cancer in surgery, so I’m now on Bevacizumab maintenance for a year and have been told to bring any big plans for the next few years forward.

I’ve come to terms with my prognosis (although still fighting and not just accepting) and have chosen to live life as normal as possible for as long as I can. Im back at work part time and this morning swam 500m in a lake. Next weekend I’m having a big party for family and friends whilst I’m still well enough to dance the night away.

I find this a very lonely cancer to have as there are so many meet up support groups for other cancers and so far I’ve only managed to find 3 other lovely ladies in the UK with it but we are all very far away from each other.

I’m wondering if any of you can recommend any meeting up support groups?

latchbrook 7 months ago

Hi Sradders and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

It sounds like you've had a long and difficult journey so I can understand you wanting to find others who have been on a similar path to you.

I'm not a member of this group but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

I don't know if you've used Macmillan's help in your area to search for groups but, if not, you might find it helpful.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

JELB 5 months ago

I am a newbie to PPCancer I am 78 and was finally diagnosed in Nov 2023 having seen my C125 rise from 20 in 2021 to 150 in 2023 being told that it was probably diverticular disease…. I have Grade 3 and had a 5cm tumour removed in April 2024 and debulking plus oleumtum removed… I think thats the spelling! I am about to have chemo as the cancer hasn’t spread but I am told chemo will keep me in remission. I have had a Picc inserted ready for tomorrow, not sure how I will cope with it over time. I can say the operation was successful and recovery has gone well. I haven’t got the energy I had I am taking it slowly and only doing what I can and resting in between.. After the op I have experienced bloating by the end of the day, and I find small meals easier to cope with, has anyone else had eating problems after surgery?

Jemjem 4 months ago in reply to JELB

Hello. My husband is waiting for his diagnosis as he is currently ‘cancer from an unknown cause’. A lot of factors point to ppc, even though it is so rare for men.

I just wondered if you were very poorly prior to diagnosis or was it the fluid that highlighted the issue. He has 6 litres of fluid removed a couple of weeks ago but after a short bounce back period he’s so poorly, constantly being sick, can’t eat and barely gets out of bed. He’s only 47 and was otherwise pretty healthy, except being a little over weight.

JELB 4 months ago in reply to Jemjem

Hello it is a very worrying time for you and your husband I hope that he gets some answers and relief soon.

My diagnosis with PPC took 2years of back and forth to the doctor with pain in my left side and severe indigestion like pain very tired and dizziness and aching muscles, bloating, I had ductal breast cancer 15 years ago and fully recovered, but a blood test C125 showed a possibility of cancer, after 2 years of unpleasant scans for ovarian cancer and a rapidly rising C125 test I was told that there was no sign of cancer and it was probably diverticular disease, the final scan showed the tumour between stomach and colon that had been missed by them on previous scans, I didn’t have fluid as you described but did feel constantly unwell and unable to pursue my everyday interests and activities, I am having 6 sessions of chemo and finding it quite a challenge but I am hoping it keeps it from returning. I will also go on the same maintenance as Stradders above, I am hoping that infusion is a short dose. Has anyone else had genetic test? it seems that I have inherited a faulty gene that could have ramification for my family, I am awaiting a consultation with gene therapist next month. We are a very small group, there are on line activities provided by Macmillan/horizen which can help through this tough uncertain time.

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