Hi Everyone
My mum has just been diagnosed with Primary Peritoneal Cancer. We don't know at which stage and we are waiting for the consultants to look at which treatment she is going to have. We also don't know if it has spread anywhere else.
I'm trying so hard to be positive but I've googled PPC (I known I shouldn't have) and now I'm just filled with fear.
Is there anyone on here which can help with further information etc.
I hopefully look forward to hearing from someone soon.
Sarah x
Sorry because your mom going through this. I would say don't Google too much, but don't keep yourself in dark as well. If you've questions, ask your doctor and not the Google. Each and every individual is different and reacts differently to treatment. As you don't know the stage yet, wait for it. I know how it feels. I've been through hell when my was diagnosed with Ovarian cancer just last month . Wait for others to reply.
Hi Sarah
Cancer affects people differently..try not to jump to the worst case before your Mum has all the facts. I know it’s hard but it may be a little while before you know what you (and she) are dealing with.
Please consider getting support beyond your nearest and dearest..Macmillan are great and other organisations also have support for relatives.
Don’t feel you must wait for the full diagnosis...this slow bit of waiting is excruciating. Love to you and your Mum xx
We have all been to Dr Google and terrified ourselves so you’re not alone x
However Dr Google is out of date and every individual is just that, an individual who will respond in their own way to treatment none of us are a statistic!
It’s a very scary diagnosis but trust your team and write down any fears or questions your mum might have before any appointments x
You can help your mum by writing down the answers from the oncologists so you can both refer back to them later it’s surprising how much we forget if we don’t write it down x
This is a great forum for support and you will find it invaluable for advice xx
Take care
Bev xx
Hi Bev
Thank you for getting back to me. I'll not be seeing Dr Google again if I can help it. Thank you for the advice and I'll be thinking of questions and writing them down next time. They asked if we had any questions this time and my mind went blank. I'm pleased to know at least I can come on here and there's always someone to speak to. Thank you again for your help.
Sarah x
I will do thank you x
Hi Sarah
As so many people have advised try to wait until your mum is given her stage and her teams plan of action before you jump ahead. As you know Dr Google is not very helpful at this time . I was diagnosed with stage 3 c high grade serous P P C in 2011 and apart from recurrence in my lymph modes in 2015
and totally unrelated breast cancer last Dec I am thank God still here. I was 66 when I got my diagnosis. P P C is rarer than O C but there are quite a few ladies on this website with same diagnosis. Try to just take it all step by step. If I can be of any help after your mum gets her diagnosis confirmed let me know.
Take care💚💗
Hi
Thank you so much for getting back to me. I came across this site after searching on Google so some good has came from it. I hope your doing ok? Thank you for saying I can come back to you once my mum gets her diagnosis confirmed...you may just regret that haha. Thank you once again Sarah x
I have PPC grade 3b diagnosed 1 year ago. I did the same as you googled and scared myself so much. It’s been a tough journey but I’m still here 1 year later and doing ok and hopefully for many more years to come x x
I know it's hard to wait for a diagnosis but there is no good in looking at worst case scenarios on the Internet. Fear causes stress. Stress causes illness. I know you want to know what actions will be taken and a treatment plan will help you a lot.
I was diagnosed with PPC 3b in Sept. 2015 when tumors were discovered in my peritoneum and omentum during a routine hernia operation. A treatment schedule was set in place. 1 IV chemo, debulking surgery, and 5 chemos (cargo and taxol) after that, the last 2 being IP chemo.
Well, during the debulking, labs came back with the discovery of a small tumor in a Fallopian tube. So my diagnosis switched to Fallopian tube cancer. A pretty rare form of OC. No change in treatment. I am still NED after almost 3 years. CA125 is still below 7. No recurrences. There can be and is good news after a seemingly dire diagnosis. Big hugs! Keep checking in here.
Hi
All you ladies have been wonderful. My mum has been told they are almost certain it is PPC but they have not ruled out OC although they have said they can not see anything on her ovaries and her recent smear test came back clear. She was diagnosed after having Ascites and they are currently testing that to get the correct diagnosis and going forward treatment plan. I'm so pleased you are doing so well it's great news. I won't be looking on Google now. It's just the waiting game now...but thank you and I will keep checking in Sarah x
*Update*
My mum has just came off the telephone from the nurse. She has to go to the hospital on Friday and the nurse asked if she would be bringing someone with her....is that normal? I'm back to fearing the worst now.
Many thanks
Sarah x
They told me that too. It's standard so another person can listen and take notes. The patient is usually too nervous and worried to ask good questions and note things down. Take a note pad especially for this and add everything to it you learn, and everything your Mom goes through. It's good reference for future visits and anticipating side effects of treatment.
Thank you so much for getting back to me. I was trying to convience myself that it would be because there would be a lot to take in but I just started to get myself panicked again. We knew she would be getting chemo and/or surgery but it just threw me a little. Thank you once again for your help and support x
Sarah I have PPC. Diagnosed in March 2014. If you have a look at my profile will give you my background. Definitely stay away from google when looking at stats. We are all individuals and just make sure your mum has an oncologist who understands PPC xo
Hi Julie
Thank you for replying. My mum has her initial meeting tomorrow which we are both nervous about but in another way it means something is actually happening. I live in Newcastle but she is being referred to Gateshead so hopefully that means they may have more knowledge (fingers crossed). After reading Google I was devastated but I'm just so pleased I came across this site and all of you amazing women. I'll never be able to thank you enough x
There is an amazing surgeon in Gateshead. His name is Raj Nail. If your mum can have surgery I would push for him. The hospital trust in Belfast use him for all their complex cases.
Good luck for your mums appointment tomorrow x
Thanks for that Julie...that sounds promising, you would like to think that if they have a surgeon as good as that then they have a good team at Gateshead as well. Thank you once again for getting back to me x
Primary Peritoneal Cancer
Primary peritoneal cancer
Primary Peritoneal Cancer (PPC)
Primary peritoneal cancer
Primary Peritoneal Cancer
