Peritoneal cancer

[Travis2403]

Hi, could anyone tell me how long they have survived from being diagnosed with peritoneal cancer. I've just been told I have it, my ca125 reading was 1660. I haven't started any treatment yet x

[Hidden]

Well how long is a piece of string? I dont have that type of Cancer with OC so cant give you any information. What I do know from my own experience and from this site, is we are all different, we have reactions to different drugs and some which work for some wont work so well with others. Having said that there are ladies on here whose 125 were in the thousands and they are doing good. Perhaps bring a relative or friend along to you next consultants visit, write down the questions you need to ask. A second pair of ears is helpful because we cant take in all that is said to us as patients. For now you should get a treatment plan and once that is in place you will be much more positive, We can give some tips to cope with treatment side effects and do come back and ask for help at any time

[Lynn_B]

Hi. I have (ppc) primary peritoneal carcinomatosis.stage 3c in 2014.My ca125 was 1200 when first diagnosed.I had 4 rounds of chemo then debulking surgery,followed by 3 more chemo treatments . Scans came back clear. NO CANCER..Ca125 down to 15.I had reoccurred after 10 months in 2015.I am now 9 months clear with my scan coming up this month.Hoping for good news for the holidays. This cancer is treatable and it is treated the same as Ovarian cancer.I wish you all the best.Lynn

[Choski in reply to Lynn_B]

Wishing you all the best for your scan Lyn xx

[IrishMollyO]

Hi Travis

My diagnosis in 2011 was PPC with a CA125 count of over 8000. I had chemo only for 6months at the end of which I was declared NED ( No Evidence of Disease ) . My CA 125 was back to normal. I remained like this with three monthly check up to this year when I had a recurrence in my lymph nodes and will finish my treatment for that tomorrow. I remain hopeful I will respond well again. Good luck with your treatment. If I can help in any way let me know. This is a great website for encouragement and answers . Take care

XXX

[IrishMollyO]

Sorry. I just realised yours is Peritoneal Cancer which I think is different to mine which is Primary Peritoneal Cancer . I didn't read your post properly . The treatment is the same for them all im sure .

XXX

[Gleedy]

I have PPC. I was diagnosed in Jan 2016. Had debulking surgery and 6 rounds of chemo. Been NED since August. I am on a trial so have Avastin till next May. I'm slowly getting back to some normality and can't wait to see the back of 2016. Keep strong and keep us updated x

[Choski in reply to Gleedy]

Oh yes 2016 has been a 'bit of a year' hasn't it!?? I last had 'normality' in Jan and am now trying to make a new normal. !!

Here's to us all

Clare xx

[Choski]

Scary time when first diagnosed however you will soon have a treatment plan and a team supporting you and life won't seem so bleak.

Diagnosis can be a stark phase for some and a relief for others as they finally know what has been going on with them.

There's lots of info around however if you are a more of a pessimist then I say don't research as lots of stuff is out of date. if - like me - you are ok with reading and can use it as knowledge only - then that's ok. Use the proper sites - cancer research, this site of course, Macmillan etc.

As has already been said , write down all your questions and also on a seperate sheet of paper everything you've been told or have found out about PPC. Then go through everything with your Oncologist. I took two A4 pieces of paper with me to my first meeting and went through every one of them. One was full of my questions and one was full of things I'd researched and wanted confirming or disputing. That worked well for me.

My hubby wrote down the answers and prompted when I forgot to ask something. It's too easy to think "I can't bother this 'Expert' with this question!! But you MUST otherwise you'll find yourself outside the room with unanswered questions!!!

PPC is treated the same as OC, as Suzuki has said though - it's hard to get a definitive response as everyone is different however I do understand fully that you're looking for hope. You can find it here, in your treatment, in your surroundings, in your family and in yourself .

Take care, let us know how you get on 🌷🌷

Clare xx

[Emalou71]

I was diagnosed stage 4 in July 2014 one reoccurrence in July 2016...

I intend to be here for a long while yet. I hope you have your plan and start treatment soon. I felt so positive once the treatment started and adjusted to the new normal. This site has been a huge support to me over the last few years, keep in touch.

Wishing you well and good luck with your treatment xxxx