About to start primary peritoneal cancer treatment and looking for buddy with some experience in West mids

Hi and welcome to the Online Community. I just dropped by and noticed you've not yet had a reply as yet so I hope someone comes along to chat. I have a different type of cancer but being able to talk to others going through the same worries and anxieties made things a whole lot easier - especially since my hubby called me a drama queen!

This is quite a quiet forum so why not read some of the older posts and click on reply to join the chat. There's no etiquette as such here, we all join in to share experiences and offer support (that's why I've dropped in!)

I hope your Oncology meeting next week goes well, things seem easier once our path is planned out for us.

Sending all the best, B xx

Hi NatureLover1, 

I've been diagnosed with PPC back in May. It was a complete shock me being only 37 and not having any history in family. I was stage 3c and BRCA1 mutation.  Had my 4 cycles of chemo, after 3rd cycle had CT scan and response was good to chemo but surgery date wasn't available within 3-6 weeks after last chemo ( that's the aim) that's why I got given another cycle. This Friday I'm having consultation with my surgeon about CT results and surgery however we we're looking into HIPEC and want to get an opinion from Christie in Manchester where they perform this surgery ( stages of trial but I like the idea) If you have any questions feel free to ask. Good luck 

Hi Julia

Thank you for your reply. It's really good to hear from you and your positive news. Mine is also 3c and three to four rounds of chemo then surgery is also the plan for me too.  That makes sense now why it may be four while they are trying to get a surgical date. I was wondering about that. I have no idea about the gene testing for me because it hasn't been mentioned.. Is that something that i should ask? I've also not heard of HIPEC?

Wishing you the very best of luck, that it all goes well.

Jayne 

Hi again julia

I've just done a quick Google of hipec and the outcomes look good. Can I also just ask did you find out about the trial yourself? I'm going to ask my oncologist at my first appointment with him tomorrow but did you contact Manchester direct? Or will my MDT be open to organising it? 

Hi Jayne, 

Your oncologist will probably mention and offer you genetic testing.  My sister in law which is a GP in London did research for me about HIPEC. It's a new procedure still at the stages of trials but I like the idea of it and will try to have it if I will get accepted. Only 2 hospitals in UK are doing it Christie in Manchester and Basingstoke and North Hampshire Hospital. You can look into that and discuss with your Dr. Good luck, sending best wishes x 

Hello again, 

Initially we contacted Manchester directly before  I started my chemo. They advised to start with chemo in Derby ( where I live) then contact them again with my CT scan results after 3 rounds. I've requested my results from hospital and will be contacting them soon as I receive them. You can mention to your Dr about HIPEC,  I've always said from the start that I'd like another opinion and would like my Dr to forward my documents to Manchester which he's happy to do. If you have any more questions feel free to ask.

Best wishes 

Julia

Hi

Thank you for this info, it's really helpful. Would you have the names of the Drs to contact in Manchester and Hampshire?Dr Christie? Or the department? I'd like to contact them too. 

Many thanks

Jayne 

My number 07532 781 221 if you want u

to contact me directly that will be easier 

I just turned 31 in July and found out I have ppc and also a 10 cm tumour which is also cancer found out about 3 weeks ago about everything. Really struggling to cope at the minute as still unsure of what grade/stage mine is. But hopefully will be finding out tomorrow. I'm from Manchester. The sitting around waiting for news is the worst part. My tumour is also inoperable. Hope you manage to get to christies in Manchester they've been brilliant with me.

Wishing you all the best 

Xx

Hi Racheal

Thanks for your message. It's good to talk to someone going through the same thing isn't it.  Although family have been brilliant, I must be driving them crazy . I think we must have found out about the same time and my first oncology appointment is today. It's a roller coaster isn't it. I was alright initially when the nurse said to me you can beat this with the right positive attitude and have managed to stay that until a passage in a non related book I was reading brought up cancer and sent me into a little bit of a whirl. Bloomin cancer it needs a kick in the teeth!   I have a telephone assessment today with BUPA. I found out that they have teamed up with macmillan to give six free specialised counselling sessions.  So thinking about taking that up, if I'm offered.  Although sometimes I just want to live my life and the thought of having to revisit it all formally once a week isn't always appealing. Be nice if they could offer it adhoc just when you're feeling like you need it! I'm going to ask the question, you never know . If you are struggling though, perhaps you could email them and ask them for an assessment if you think counselling would help? I was sent a link by macmilan but I think you would be able to find it one this page. I was told PPC responds well to chemo. Sending lots of positive vibes to you. Hope your appointment tomorrow goes well.  Always here to chat to, if you need it

Very best wishes

Jayne