Primary Petritoneal Cancer

Hi Roonie, I'm not as far along as you so can't help with the specifics, I'm waiting for biopsy results. I must admit that I am dreading chemo, which I've been told will be the next step. It must have been an awful shock for you and a massive amount to go through since December. Wishing you all the best and I hope you are able to get back on track with the chemo, xx

1. Hi Aleanna-thank you. I’m going for covid & blood tests tomorrow so am hoping chemo will go ahead on Thurs. I was very apprehensive about starting chemotherapy too but found that although not a pleasant experience it hasn’t been as bad as I had imagined. I do take the anti sickness tablets for nausea that they give me to take at home after chemo along with steroids & have found they really do help. The support of the chemo nurses who are so knowledgable helped too before starting chemotherapy as they were able to answer my many questions. Write down any questions you have or fears that you have and take them with you when you chat through things with your nurses. I hope you won’t have too long to wait for those biopsy results & wish you all the best too. xx

Hi, I see your post is from 2 months ago, how are you getting on?

I was diagnosed CUP just before Christmas 20

I have had seven chemo sessions, after the second scan after 4 sessions several minor tumours have gone, one small Peritoneal tumour left but was greatly reduced, but the last 6 chemo's where at 80% dose to limit the side effects, which have mainly been and still is numbness in the feet. My blood test except after the first chemo have all been ok. I have a scan on 3rd June and hope for the best.

What is a debulking operation?

I wish you well, its good to exchange stuff via this site. 

Robbe

Hi Ronnie I too have PPC. I have stage 3c. Mine stems from my BRCA1  gene mutation . I received 7 rounds of chemotherapy and had debulking surgery along with Hipec. My surgery was long but so worth it. My cancer is "asleep " for now and am so grateful. I hope I at least I helped with something. 

Hi Roonie

How are you doing now? I also have primary peritoneal cancer, Stage 3c, and was diagnosed in August 2019;. It was a complete shock and I now also know I have the BRACA gene mutation. I have had six rounds of chemotherapy and after three of them, had the debunking operation.  This all went extremely well leaving me pretty much clear with CA125 cancer marker count down to 12.  I am now on Olaparib tablets since last September and my CA125 is 7.  I feel well, if a bit tired, and leading a normal life. I am not saying the treatment wasn’t tough, and I have had issues with adhesions in the bowel from scar tissue, requiring another operation, but I am still normal, and didn’t need a stoma bag or anything. I think you just go with all the care and treatment you can have and trust in the specialists.  I am so grateful that right now, I can lead a normal life again.

Hi Glenisanne,

Thank you so much. Your message is so encouraging to read.It’s  good to hear from someone who is going through or has gone through similar circumstances. Like you it was a complete shock to me being told that I had stage 4 PPC. I hadn’t heard of it & then struggled to find anyone who’d experienced it until I found this Macmillan community site which has been such a help for me. 
After the 6th chemo I had a scan which showed I’d responded well to chemo & CA-125 levels were around 20 & so debulking surgery was arranged. 
I had surgery 3 weeks ago & am recovering well at home. Bit bruised, battered & battle scarred but other than feeling tired at times am definitely getting a bit stronger each day. Just have to pace myself and not over do it. 
Like you, I didn’t need to have stoma in the end. They did find more disease up in the diaphragm area so they removed what they could & have said I’ll need further chemo to deal with that. 
Genetic testing results show that I don’t carry the BRACA gene mutation. 
I’d been thinking about what’s next & about further treatments or follow up scans & blood tests so reading about your ‘journey’ has really helped me to understand the process. 
Like most people I just kept thinking will I have CA-125 follow up blood tests & scans too. How will I know if it’s come  back if I don’t have regular tests? It’s perfectly natural I expect to question & it’s the same old fear of the unknown! 
I’m so glad for you that you’re living a normal life right now after what you’ve experienced and long may it continue too! 
Take care & thank you again, 

Roonie x

You must be 6 weeks post surgery now and feeling much stronger?  I would suspect that by now, your oncologist or CNS would have re-assured you about how you will be monitored.  With my own treatment, I'm having blood tests that include CA125 a few days before the telephone consultation I have with my oncologist, now every 4 weeks.  When it rises too high or I'm getting symptoms that are too uncomfortable, then I shall have a scan before beginning the treatment the resurgence of my cancer needs: another round of chemo (this time Caelyx).   

I did think that I would be too anxious just waiting for the cancer I knew was still there to regrow... but in fact, I'm finding it relatively easy to live with the fact that it is already, mainly because I feel more like myself.  But mostly because I know that this is my chance to live life to the full and enjoy everything I can 

Hi 797, I've just found your post. I've got same diagnosis stage 3c PPC and it's also BRCA1 mutation. I've done 3 rounds of chemo Taxol/ Carboplatine and awaiting my CT scan to decide whether I need more chemo or surgery. I hoping to do surgery with HIPEC. Wondering how it went for you/ recovery etc. Did you have it done at Christie in Manchester? 

Hello Julia, my experience with HIPEC went wonderfully. I was in surgery for nine hours hospitalized for 10 days and I'm so grateful for HIPEC. Recovery went well, of course some soreness mild pain which was controlled with medication. After I came home I had a home health nurse come to my house twice a week to help with my wounds which helped a lot. About a week of being home I was up with my walker walking around. I hope I helped. If you have anymore questions please feel free to ask. I am in California and I go to City of Hope cancer hospital in Duarte 

Hi 797, thank you for your response. I'm only 37 and it's a complete shock to me. I've had 3 rounds of TC chemo every 3 weeks now waiting for CT scan to see how much shrinkage is there. My local hospital doesn't offer surgery with HIPEC but could traver farther if I fit the requirements for it. I've been told that HIPEC is at the trial stage as this is fairly new procedure. I like the idea of it but I'm also worried. Is this standard procedure in US for this type of cancer? How long have you been cancer free? Have you had more chemo after surgery?  How long ago was your surgery? Thank you so much, sending love to you