Hi, Does anyone have any experience of primary peritoneal cancer, I have been diagnosed with it after originally being told it was OC with spread to peritoneum. I got the all clear last December but am now having to undergo a second course of chemo, carboplatin and paclitaxel. Apart from being pretty rare and coming under the umbrella of OC, there seems to be a dearth of info about it.
Can anyone help?
Harley
Hi harley
I have primary peritoneal . Yes it is very very rare . There is a dearth of information as no research being done on it - consequently it gets lumped with OC ...................... but it isn't OC . Also it get treats as if it were OC since no one has any idea what else to do with it . I shall post more later today ,but I am out all day, needing to leave now . There are a few others with PPC on this site ,who will also get in touch with you
stay strong Sue
One of the problems is that our medics know very little about PPC. I was told when first diagnosed that most doctors will not deal with a single case of PPC during their entire working life. As a result their expectations are as for ovarian , which may ......or may not ........ be at all relevant . PPC is similar to OVCA only in so far as both are epithelial cancers (cancer of the soft tissue )
I spent 12 months knowing that something was wrong and being given a load of wrong(and , for me unlikely ) diagnoses. ...... as a result it was very late before any kind of diagnosis. that fitted my symptoms. I had 5 litres of fluid on my abdomen and 2.5 litres in my pleural cavity - Ovca was assumed ..... until exploratory surgery revealed that my ovaries were not cancerous at all . I was told that surgery was too dangerous ( Peritonitis , following a burst appendix when I was 4 years old had left a load of lesions and adhesions in my abdomen.) so after a pleural and an abdominal drain and an attempt (failed) to seal off the pleural cavity , I was told I was PPC stage 4 . I started with chemo in March 2010. I had 6 lots of carboplatin at 3 week intervals. The last one was July 1st . At that time I felt really quite well again (almost normal !) My ca 125 had gone down from 3,600 to 47 and the tumour had shrunk.. This disease will constantly recur and so does not go into remission but I did not have any more chemo until end of August this year.(when ca 125 had got back up to 2,800 .) I have now had 2 lots of carboplatin this cycle ...... ca 125 going down .................... slowly but I still feel a lot of fatigue.
It is frustrating that there is no information out there and no research. I contacted Cancer research UK to ask them why they do not even list peritoneal cancer on their web site . They said that it is too rare for any research to be justified. They told me that if I raised enough money to pay a reseacher's salary then of course research could be done . Maybe we should all band together to try to raise sufficient funds.
Feel free to ask any questions. I will answer within the experience that I have had . (ie all my information is subjective and individual - scientists would say anecdotal )
Ignore the nasty statistics about PPC. I just tell myself that I am an individual and not a statistic . ( But it is more of a problem persuading the NHS to treat me an individual rather than a statistic.)
Keep in touch
Hi Sue
Thanks for getting back to me. I had clinic appointment yesterday in Aberdeen so on track for my second session of chemo on Thursday. My CA 123 level was hardly raised at all originally and not at all this time, it was only my insistance that something was not right that pushed them into doing a scan which showed that it has come back. I asked them about a plan B, they informed me that there is always a plan B and that if it doesnt react to the chemo this time, they will try another type but they are expecting the same positive reaction that we had last year. I never felt bloated last year but do this time, at one appointment they told me my abdomen was full of wind. Apart from feeling pretty scunnered that it has come back, I am keeping fairly positive, I am a local councillor and still working, after what you said about the lack of research I will be making some enquiries as well.
regards
Joanna
(Harley)
You might find this link helpful.
inspire.com/groups/ovarian-...
If you have not already found this web - site, it is a useful one . The value of the posts is very variable but some are very informative . The titles are a good giveaway and I sift . As usual this is about ovarian cancer, but there are a few people with PPC as well - more than on the ovacome web - site as this is a US and international site rather than mainly UK .
inspire.com/groups/ovarian-...
Here is a link to another discussion - this time about primary peritoneal
Hi Harley
Like you and Suzy, I have found that PPC does not seem to be that common.
I was diagnosed Stage 3 in May/June this year after vague feelings of bloating, aches and pains, and not being able to eat a full meal. I also looked about nine months pregnant with all the fluid!
My doctor started everything happening straight away and because of the discomfort had me admitted to our local hospital where a biopsy and CT scan showed it was PPC. I was referrred to a nearby city hospital where I have had four sessions of carbo/taxol and am now waiting for op at end of this month.
I have looked on the internet every so often and found out most of what I know about PPC from this site, and as Suzy says mainly from American websites. But don't study them for too long - you can get bogged down in too much information.
I was told by the surgeon that the peritoneum does not seem to be necessary in an adult! Also, my ovaries do no appear to be affected. But what to make of this information .....I have no idea. If I think I can answer any of your questions I will.
Thank you Suzy for the links you have posted.
Hello
Just wanted to add that my mum has PPC grade 3c. She had her first symptoms in March and was not diagnosed properly until May. She has already had 6 cycles of Taxol but has not been told that they cannot operate. Does anyone know if this is the case with all PPC?
Like you I made the mistake of googling for information which is very frightening!
Good luck x
Hi, after coming through 6 sessions of carbo/taxol last year, I have had two bad reactions to the carbo even after all the extra pre meds yest, I have been told I wont be able to have carbo again. I will have to wait to see what the alternative is when I see my Oncologist in a few weeks. Has this happened to anyone else, I was told I should sail through it this time as well - gutted that the body has decided otherwise.
Harley
foundationforwomenscancer.o...
is my favorite site for PPC.
You're right: finding good info is difficult. I currently have a chip on my shoulder: Why are rare cancers kept in the dark? Why can't we find out about them as easily as we can find out about other cancers?
My team of doctors are excellent. The oncologist and surgeon met to determine the best treatment. I am infused with Taxol every TU and Carboplatin every 21 days. However, no explained why surgery didn't come before chemo.
I'm really concerned about "how serious" my cancer is. That's the one issue doctors will not address with me at this time. I'm due for CT scans mid-May and will ask the question again then.
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