Understanding & Beating PPC - Primary Peritoneal Carcinoma - Help?

Dear sweet community at Health Unlocked, 

My name is Delia, I'm 24, and almost a month ago my mom, 66, was diagnosed with stage 3 PPC. She's currently at MD Anderson in Houston, being treated by an incredible gyn-oncology team. They've told her the survival rate is 70% and things we've read that told us 30% are sourcing outdated research. Anyway, she's had a few hiccups along the way, which included an emergency colostomy last week as the peritoneal tumor was pressing on her colon and causing a blockage. 

I'm writing because while searching for positive & hopeful information from survivors, I saw several posts here from 3 years ago where lots of PPC survivors were discussing their treatment. I'd love to hear from any PPC survivors out there, and if you have any hopeful words or tips to pass on to me and my mom, I would really appreciate it. 

She's the only one I have & I love her so much, so any information would be appreciated. 



10 Replies

  • Hi Delia

    Thanks for getting in touch , your Mum's a fortunate lady to have such a wonderful daughter. There are several long term survivors with PPC on here , I'm sure they will be along soon.

    As well as an Ovca survivor , I am a healthcare profession. I totally agree that the figures on survival are outdated . As I am certain you know , they include all patients who have not made it ,including people in their 80s and over who had multiple other issues that may have affected matters. There is always a lag time between when data is collected ,peer reviewed and published. Treatment has improved dramatically in recent years and this takes time to filter down into hard figures.

    People who survive often long term tend to leave these boards. Personally I have chosen to stay to offer where I can the perspective of long term survival ,although mine was a very early non invasive tumour ,removed 6years ago. Going through this is no picnic  but it's doable. I also firmly believe that avoiding where possible psychological stress helps our recovery enormously , so try to keep your Mum as active physically and socially as you possibly can. Lots of healthy treats , trips out , exercise in the outdoors all help one's resilience.

    Take care xxx

  • You are a love Delia,

    You are supporting your Mum and that is all that matters,I was diagnosed, had radical hysterectomy 6 months chemo and am in remission.

    As Charlie 12 said,treats, anything to forget the C word, excercise, good diet and just plain and simple love and care which you seem to have in reams.

    Oh by the way, I've been to Houston and you have the most amazing Mall, so a shopping trip may help!

    I wish you all the best, you are a loving daughter and she sounds like an amazing mum


    Carole xxx

  • Delia, how lucky your mum is to have you :)

    I'm 61, and one of the PPC women on here, and am stage 3c. I was diagnosed summer 2014, so cannot yet call myself a long term survivor, but I'm working on it! I'm already on my third recurrence, alas, but the thing I keep making myself remember is that my oncologist said, it's not curable, but it is treatable, and all being well, I hope to be around for some time, yet. If not, well, so be it.

    The others have already said the important things. Spend time doing what you really enjoy (I just started an art class!), and try to get outdoors for a walk, whenever you can. 

    With love from Scotland, Eileen x

  • Dear Delia, in Dec 2015 my wife at 61, was diagnosed with high grade  PPC stage 3C with CA125 levels at 750, (no symptoms whatsoever except for evening fatigue) . Our daughter too is a single child, so I can feel exactly for you. Today after cyto reduction surgery with HIPEC and three chemos later her CA125 is 19. Her chemo # 4 is tomorrow out of a total of 6. She is being administered carboplatin and pacli through IV as well as through the peitoneum. The problem with PPC is the symptoms are either not there or they are too minor to understand. Hence the detection is always at stage 3 or 4. Only 5% of the PPC are cured (hearsay from a Doc) but its also very treatable with a combination of surgery and chemo. Since your mother is stage 3, surgery surely must be good to go. Keep her happy at all times even if she is unreasonable and let her know that she has a reason to live..... YOU!  She will also find solace with her friends and family, whose support you will need to rally around you. Lastly keep the faith Delia. 


  • Hi Delia

    I was diagnosed with PPC in July 2013, treated with surgery and chemotherapy. I have had a second line of chemo for 1st recurrence and am probably looking at more treatment in the near future as my ca125 is creeping up again, unfortunately. Like Eileen said in her post, when I was diagnosed, I was also told that whilst it wasn't curable, it was controllable. I well remember the extreme emotions at that time and was convinced I was going to die, and couldn't get a grip on things at all. My husband put it into perspective though when he reminded me that there are other conditions that aren't curable but are treatable, like heart disease and diabetes for example. And yes, I am going to die, as is everyone else. The only difference is, I have been forced to think about it whereas other people live their lives without these thoughts. All I can say though is that I  don't intend to be going anywhere anytime soon.

    Although another recurrence seems likely, my Consultant did say that in the greater scheme of things I was in a good place as there are other treatments available. Yes, it's not fun going through the treatments, but again as previously been said, it is do-able. My advice would be, try and pack the cancer away in a box and put the lid on and only let it out when you have to and deal with each hiccup as it arrives. In between, live life to the full as you would have done before the diagnosis. 

    I wish you and your mum all the best for the future.  She is very lucky to have such a loving daughter to share the burden.

    Love Ali xx

  • Hi Delia,

    My mom and I are going through something similar and in some ways it has caused a strange reversal of roles. I try to wait until she brings it up, so she will feel as "normal" as possible and we can keep with our history of discussing politics, food, kids, etc. without the cancer coloring everything. Sometimes, though, I have to remind her of the things that have been helpful--getting her walk in whenever possible, not getting so hungry that she bolts her food (which has caused bowel obstructions in the past), taking 1/2 ambien when she's had several evenings of poor sleep. Her first recurrence was pretty devastating--she had hoped to be done with the whole thing, though I was somewhat prepared. We have come to accept the "chronic" nature of OC/PPC and she has begun treatment again.

    I find it helpful to visit this site and talk to a few people about this, from a daughter's perspective. I have to be strong FOR her, which means I can't express a whole range of emotions TO her. This, I think, is the best way to love her through this phase of her life. As for me, the thought of losing her is devastating...like falling into a black hole. But I can't tell her that. Instead, I am trying to give her what I can--my time, especially--and learn as much as I can from her because she is an amazing woman.

    Good luck, Delia. I suggest you try to avoid statistics and just take it one day at a time. When you feel yourself freaking out, try to pull yourself back into what is real, here, and now. 

  • What fabulous daughters you and Delia are. As a mother of three daughters, my biggest fear in all this, is leaving them (and my elderly Mum) but my greatest blessing is that I have seen them into adulthood. 

    Keep up the good work of supporting your mums but remember to accept yourself from somewhere.  It may even come from your mum - she still is your mother and will want to be there for you.  Sharing anger and grief can be difficult but quite cathartic.  X x

  • Hi Delia. I 'm hoping I am survivor! Diagnosed Oct 2013. Two operations to remove tumours and all potentially problem bits, followed by chemo until July 2014. No recurrence but very aware that it might recur at any time. In the meantime, some days I don't even think about it but other days, if I don't feel 100%, I think it is back. This is really hard to manage but I am getting better at it as time goes on. My oncologist wont to blood tests or scans unless I have symptoms. He assures me that I will know when it comes back. Symptoms will be persistent and get worse. So, 2 years cancer free and next check up has moved from 4 to 6 months. I hope this helps. I know I just wanted to hear survival stories in the early days so I hope it does. Your mum us very lucky to have you. My two sons are great but I think they think I will just cope!! Good luck to you and your mum. Val x

  • I'm 59 and not sure, if mine is ovarian OR peritoneal, as there we no tumors to biopsy (I'm told). I had MUCH, MUCH fluid removed (several times), mostly around my lungs. Seems they should have done some biopsy of that. At any rate, I'm here, currently NED, diagnosed almost 2 years ago; Had surgery (complete Hyst, and a cyber-knife radiation procedure for a tiny lung tumor). Told that, for now, Chemo isn't needed anymore, but will be checked with CT scans and CA-125 (which was very high at DX, @6,000 and brought down to almost nothing). I hope I don't need to find out where it originated, and hope to continue NED for a long, long time. I've learned to just take it one day at a time, not to worry or fret about "tomorrow", but to enjoy today- much more than I ever did before. I hope everything goes well for your mom, and a long "survivorship"-remission, NED, and many more years with her family.


  • Hello Delia

    This is the first time I have posted on this website for quite a while.  I too was diagnosed with PPC in April 2012, unclear about whether I was was Grade 3c or 4 advanced.  Had two lots of surgery to remove as much of the visible tumours as possible.  Unfortunately I have had two recurrences since which to begin with were devastating.  I have just finished 3rd line chemo and it has been difficult but will be having a scan soon and then appointment with oncologist.  Hoping that I will have some chemo free time as I have lots of plans and things I want to do with my family.

    I have a son who is 39 and settled and a daughter who is 25 and I worry so much about her - I think this keeps me determined to continue with this - I just know that she would find it very difficult if I wasn't around.  So we grit our teeth, carry on and enjoy the fun times in between.  And of course hope that something will come along which will manage the disease that doesn't involve chemotherapy!

    Hope all goes well with your mum.


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