Does anyone out there have a diagnosis of Primary Peritoneal Cancer. Or am I the only one? Would like to chat.

[JacJac]

I was diagnosed with Primary Peritoneal Cancer in August 2012 and have just completed treatment. Although I have had lots of support from a variety of people I have yet to talk to someone with the same diagnosis. Apparently it is quite an unusual diagnosis and as it is so similar to Ovarian Cancer all the information I can find are references to it witin the Ovarian Cancer information. I understand why but it would be good to speak with someone wit exactly the same diagnosis. My gyanaecological oncology nurse specialist advised me to post here.

[Hidden]

Hi JacJac,

Welcome to the club no one wants to join, I am sorry you have reason to join, there are quite a lot of people on this site with primary peritoneal cancer, it is treated the same as ovarian cancer, I am sure they will be along soon, you have come to the right place for support...

Sending my best wishes love x G x

[doreenharwood]

Hi Jac Jac, I was diagnosed with PPC in May last year if you have any questions about this please contact me, as Gwyn says there are lots of us with PPC so you are not alone.

Love Babs x x

[Hidden]

Ditto .. Me too . X

[Chrissy55]

Hi Jac Jac, I was diagnosed with ppc,Jan 2012,I am done with chemo July 2012. Feeling pretty good!, still get tired easily but keep on keepin on! Any questions feel free to ask,I am more than happy to share my story. I am 57yrs old and was adopted from Germany when I was 3. I like you could not find very much info on our type of ca,never new if anyone in my family carried this.I was told that it is inherited. Does anyone in your family ever had it?.Bless you,and may we all have Looooong...Remmisions!~~~ Peace~~~ Chrissy55

[Hidden]

Hi there... I can write a longer reply now I'm not on the iPad! PPC is treated like Ovarian cancer because the cells are of the same type. Some reported Ovarian cancer is actually PPC and some PPC will stem from the fallopian tubes or ovaries. Even people with no uterus (like me) can get tumours years after they've had a hysterectomy (also like me) when I got a cystadenoma which had to be removed and was from fragments of ovarian tissue left behind after the operation. Years after that, I was diagnosed with PPC as I had no ovaries and the main sites for this cancer were in a different part of the abdominal cavity. PPC involves the peritoneum which like a thin, soft cellophane sheet which wraps itself around the abdominal organs. Its function is to lubricate and protect the organs within the abdomen so that they move smoothly as we walk, digest and do all of those things us humans do. There are different types and subtypes of PPC, as there are with Ovarian cancer.

When Ovarian cancer is advanced, it can usually be found on the peritoneum which is where it's found initially with PPC.

It's sometimes hard to predict the pathway different cancers will take. My PPC is low grade which doesn't really respond well to platinum based treatment which is usually administered for first line defence of this illness Something like 1% of patients with low grade PPC will have a complete response to carboplatin. 3% in total will have a partial response and some others will have stable disease. I'm not sure of the stable disease stats .. I think it's about 53%. People with low grade don't always realise that a partial response to treatment is actually a good response as is getting to a point where the cancer is stable. If the cancer is of the high grade type, it's usually more active but has a much better response to treatment. I was given a poor prognosis at the time of diagnosis because of the late stage and the condition of my abdominal cavity but I'm still here two years later and I think my health is improving slowly. PPC is seen as a relatively uncommon form of cancer. The peritoneum is actually the largest sea of tissue in the body. When I was diagnosed, and after the news had sank in, I was distraught. There seemed to be no hope and then it gradually dawned on me that out of all of the years since time immemorial, I was born when new treatments are being brought out and when more is known about different types of cancer than ever before. New ways of treating cancer are being used now and it's not really acceptable that people are given random chemotherapy agents in the hope that they'll work. It's still happening because that's the only way at the moment but the more scientists know about how different cancers react to different treatments, this will change. I'm convinced that very soon there'll be either a cure or a better way to manage this illness. In response to Chrissy's reply, I was tested for BRCA1/2 mutations and the results were negative. Like with Ovarian cancer, only a small proportion will test positive.

Well, I wish you well.. and take heart. People here will be there for you. Feel free to message me if you'd like to do that. x

[Roksanam in reply to Hidden]

Hi

Your response was very informative.

I have a sister with Ovarian cancer and another one with PPC

Like you I tested tested negative for BRAC 1 and 2

Like you I also had hysterectomy and had removed my ovaries a few years ago

Reading your reply and a couple of other patients with similar condition has made me realized and worried that I am still at risk of getting PPC

What should I do to look for it to catch it soon ?

Should I still do CA 125 testing or should I do scanning of my abdomen on a regular basis?

Any advise is appreciated

[Dyana]

Hi ,

I was diagnosed with PPC in May 2012 , and have had surgery and the carbo/taxol chemo. I would really be happy to talk . I must TinaB ... You are really informed . Dy

[cerise]

I too had this diagnosis in

April 2012 followed by chemo and full hysterectomy, more chemo. I am feeling fine and my hair is growing back . Not long and dark ( ok, a bit of dye might have been involved!) now but short and like a Brillo pad but who cares, still here! I eat well, cut out dairy (ate far too much before) try to reduce stress levels, have a laugh, walk loads and keep my fingers crossed. Any questions you have.....well just ask her, so many mines (and minds!) of all the info and support you need. My very best wishes to you, and everyone else here. Sue xx

[harley]

Hi JacJac

Sorry you have had to join the club, but welcome.

I was first diagnosed in May 2010 after 5 months of investigations as having OC stage 3 with spread to the peritoneum. it reacted well to carbo/taxol and they took me in for surgery after number 3 only to discover that the ovaries were clear and it is in fact PPC I have. I had to return for chemo in September 2011, became allergic to the carbo on the second dose, they tried to combat this with more premeds but it didnt work so they continued with taxol on its own, this appeared to do the trick, I had a year off from any treatment but requested a scan in December after experiencing symptoms which showed that it had come back. After three doses of taxol on its own, (partly my choice I am afraid) the scan showed that whilst there was an improvement, it was not enough so I am now on Cisplatin/taxol and we will see what the outcome is at the end of number 6. My disease is platinum sensitive.

There are a few of us here with PPC and our experiences may be different but it is rare and not so easily explained to people as OC is.

Please feel free to message me, I live in NE Scotland.

Joanna

xxx

[Hidden]

Hi Jac Jac

There you go what a wonderful site you are never alone on here So many caring and sharing.

I wish I had discovered the site at the beginning of my disease

Well done ladies

Regards Barbara

[JacJac]

Ladies, Thank you all so much for your wonderful replies. I feel quite close to tears actually being in contact with others with the same diagnosis. I am so sorry that any of us have to be here but so glad you are at the same time. I have a wonderful family and very supportive colleagues and friends but oh to be in contact with people with the same diagnosis feels such a relief. I honestly have found myself dismissing my condition because it is as if it didnt really exist. I am 56 and had preety much the same treatment as many of you on here. Chemo (taxol / carboplatin) Surgery and more chemo. I have apparently responded well to treatment. My CA125 started out at diagnosis being just under 3000 and by end of treatment was down to 6. My consultant tells me I am lucky. Everyone is amazed at how well I have responded. I have just returned to work full time and hoping for a long remission. I have been so needing to talk to those with the same condition that I am starting a facebook page and blog. I will put links up when I feel a little more confident about what I am doing. However now I have found you all maybe I dont need these pages. (facebook and blog) Thank you thank you. I expect I shall message some of you privately. Wit love to you all and my sincere hope that you all continue to do well. JacJac xxx

[leftleg1]

Hi

Just to say that I am also suffering from PPC. Like you I worried that I could find no info specifically about the condition but I have subsequently found the OC info and this site v helpful. I was diagnosed in June 2012 as stage 4 grade 3 as I also had pleural effusion - Fluid in the lung. I was told I was not operable and as a consequence have just received the standard 6 carbo/toxol rounds of Chemo. I have been in remission since December. I am still finding it a bit of a struggle but trying to remain positive. Hope things go well for you with your treatment.

[JacJac in reply to leftleg1]

Hi, I had some fluid on the lung too at diagnosis. I had very bad ascites (this led to my diagnosis) and a scan showed some fluid on the lung. However my consultant thought that the fluid may just have been fluid from the abdomen flooding through (somehow) into the lung and may be improved by the chemo. (I was beginning to feel a little breathless but had put this down to asthma) Fortunately for me the chemo helped and a further scan showed no fluid in the lungs. I believe I was stage 3. I guess I am in remission although no one professional has used that phrase. I am now on a three monthlyy check up regime with my consultant and just trying to get on with life and not get too anxious about every little ache or discomfort in the abdominal area. Thank you for replying to my post. I too hope things go well for you and all the others on this site. Jac

[Dyana]

wow , I didn't realise that so many of us have PPC! I really value being able to use this site and have found solace finding others with it.

Best wishes to all of you , dy

[JacJac in reply to Dyana]

Yes it is amazing that there are so many others. Just wondering if there is any specific research into PPC as a concer in its own right or is it so closely related / similar to OV that no seperate research needed? I too am finding great solace in the companionship that is clearly available on this site.

[hereshoping]

Hi JacJac, diagnosed with OC August 2010, 3 rounds of Taxol/Carboplatin then debulking surgery then another 3 rounds. Pathology results said it was PPC. I had no uterus but my ovary had a tumour my omentum was covered but my major organs were ok as far as they could see. Had 13 months remission then lapsed last January so began chemo again. Had a reaction on 2nd round of Carboplatin so had to leave that. Have had Gemzar but after 9 rounds caused breathing problems and fluid build up under the lungs so couldn't have the second 9 rounds. Had 6 rounds of oral which I finished at the end of February. I had stable disease after my last scan half way through the oral but things are getting uncomfortable again. See my Onc outpatients Doc on Wed so will see what the plan is. I was Stage 111c so am doing ok. I was 57 when diagnosed. Basically still feeling ok just upper abdo symptoms at the moment. CA markers have stayed around 1100 1200 since last May so will be interested to see what they are now. They are usually a pretty good indicator for me. You have found the right place to chat. It has been very helpful to me over here in little New Zealand. Best wishes. Chris.

[JacJac in reply to hereshoping]

Thank you so much for your reply. Sorry to hear about the relapse and difficulties you have faced / are facing. I believe te CA125 is a good indicator for me to. My consultant gets concerned that I put to much empasis on this and I do understand why but at the same time it is an indicator other than how I feel which is probably the most important. No one has explained the difference to me about stable and non stable disease. I guess it is obvious but you never know. Im guessing it means it is not getting any worse? Hope things go positively for you. Take care. JacJac x

[iamstillme]

Hi JacJac

I too have ppc . As you can see there is a few of us here . It is always good to chat to others who are going through or been throught the same thing . Stable disease really just means that there is cancer cells present but it is not growing or changing . This diease is unpredictable as is ovarian cancer but new treatment is coming along all the time

Ally

[Suzy]

Hi Ji Jac

I was diagnosed with PPC in Jan 2010. I was declared inoperable ....too dangerous as too many lesions and adhesions round the site of previous surgery (burst appendix and 2 caesarians ) Acites drained from abdomen and pleural cavity (5.5 litres and 2.5 litres . Started treatment March 2010 with carbopatin - sent my ca 125 down well - from 3,600 to 58. Enjoyed 15 months with no treatment then 2nd course of carboplatin in 2011 this was less effective . Started carbo/gem May 2012 this had little effect and caused dreadful muscle weakness 21 days out of every 21 days of the cycle. Treatment abandoned and after washout period of 4 weeks I started weekly taxol. This worked really well to begin with with good effect on my ca 125 and I felt full of energy and ready for anything . After 4 months effectiveness began to stall and ca 125 began to rise again ............ around 1,250 now and contemplating next round of treatment ....... so you see we all have totally different stories with different responses to treatment and different periods of remission .......... but we most certainly need chemo sensitivity testing to be made more readily available at an affordable price . No more chemo Russian roulette please .

The most important thing is to ignore all the statistics and remember you are an individual person and be confident in the knowledge that you are different from everyone else

good luck with your treatment Sue

[JacJac in reply to Suzy]

i Suzy, You have had suc a tough time and really appreciate you taking time to respond to my query. I am interested in comment you make about chemo sensitivity testing.I didnt realise one could get tis. Toug it was just a game of Russian Roulette. I know that ifa time comes that I require more chemo that I may respond differently to the drugs. If tis appens sould I ask for a sensitivity test before more treatment? Of course I guess it would probably come down to cost but it migt be wort asking. I totally agree that we are all individuals and it is best to ignore the statistics. Do let us know how you get on with te next round of treatment. Tinking of you. JacJac x

[JacJac in reply to JacJac]

Sorry just noticed my 'H' button gets stuck!

[Suzy in reply to JacJac]

chemo sensitivity is already available ..................... but only if you have access to lots of money .

[VioletK]

I was diagnosed with PPC eight and a half years ago. Had surgery and six sessions of chemo (carboplatin) I have remained well with no return as yet.

[slewin]

hi. my name is toby, I am a cancer survivor. I was diagnosed two and a half years ago with primary peritoneal cancer. i was successfully operated on and the Peritoneal was removed along with my Spleen. I was very lucky in that no other organs were effected but it was very close. I also had a complete hysterectomy. I was diagnosed stage 3 and I was fortunate to have a wonderful caring surgeon at Columbia Presbyterian hospital in new York. the surgeon is a oncologist/gynecologist.

After the surgery I was recovering in the hospital for 9 days. I had tremendous support from my family and friends.

I had 3 ports (2 under the breasts and 1 by the side of my neck). The 2 under the breasts received the chemo and the other was to get blood samples as the blood vessels were hard to find in my body. I have since had the 2 ports under my breasts removed but I left the port in my neck (just in case I have a recurrence).

the week before operation my ca125 reading was 350. the surgeon determined that it was imperative that I have the surgery as soon as possible as the cancer was spreading so quickly. I had the surgery a week later and the ca125 was up to 750.

I changed my lifestyle and now I am primarily vegetarian as I consume some fish. I usually only have organic fruits vegetables and wild caught salmon.

I eat lots of salads, nuts, seeds, quinoa and I go to both zumba and yoga classes.

If you wish to speak with me please email me at: [e-mail] and I will call you back.

Have a positive attitude and be grateful for every day.

Toby

[Julie40]

Hi. I was diagnosed with stage 4 PPC in March 2014. I was 39. They told me it was inoperable but I transferred to Christies and had 3 cycles of chemo then surgery followed by another 3 cycles of chemo. My CA125 dropped from 3194 to most recent reading of 9. It's been a tough journey but I'm thankful that I'm here and feel well generally. I'm struggling with back and joint pain but hopefully time will ease that.

There are some wonderful people on here. I don't often post but take comfort in reading other peoples activity. It really is a supportive community whether you actively post or just browse.

Stay positive and well. Take care

Julie x

[Jessica-DianeB in reply to Julie40]

Hi Julie,

I'm newly diagnosed.

Wondered if any of you ladies are still available to post. Would be good to hear from you.

Thank you!

[Ttucro in reply to Jessica-DianeB]

Hi Jessica, I was diagnosed just in May 2016. Did chemo every 3 weeks all summer and now am ready for debulking surgery and hipec this week. My ca125 started over 500 but has dropped to 14. I am hopeful this is treatable. How are you doing?

[Jessica-DianeB in reply to Ttucro]

Thank you for replying.

Did you have the usual 3 rounds of chemo prior to planned debulking.

It's all very new to me, I was diagnosed 6 weeks ago, stage 4.

Can't find much literature but reading through the previous posts, albeit old have been helpful xx

[Ttucro]

I had 6 treatments before surgery with good response. A little advice-stay off the internet, exercise as much as you can and try to be positive! I tell myself I will survive this!!

[Sunfleury-UK]

Hi both- do please start a new post as I'm sure you'll hear from others with a similar diagnosis... There are quite a few members here and I'm sure they will have information and experience to share!

As this thread is quite a few years old, many posters and friends will have left the site- some will have moved on with their lives and put their diagnosis behind them but sadly some will have left not just this site but this life....

You will get many more replies and responses to a new post or question, best wishes Sx