Primary Peritoneal Cancer

[kaza64]

Just wondering if there are many more people in the UK like me, I beleive that this cancer is very rare, woud like to talk with people who are experiencing the affects of the cancer. thanks Karen

[fannyanny]

Hi Karen, I am not sure as I have just been diagnosed. I think it is primary peritoneal but not sure yet. Waiting for 2nd opinion at the Royal Marsden and will know more next week.

Will contact you again when I know ok. Thinking of you.

[kaza64 in reply to fannyanny]

Hi there thanks so much for replying, may I ask why did you ask for a second opinion, I had problems 3 years ago and they said there was nothing then when they checked again now I had the PPC. Look forward to hearing from you again as my oncologist says there is not many people in the UK with Primary peritoneal Cancer. Hope your appt goes ok...speak again, Karen

[Hidden in reply to fannyanny]

Hi Fannyanny

Reading your profile... didn't you say you had a cyst on your ovaries first ? doesn't that mean yours is OC? and now you have a recurrence in your peritoneal... I know the peritoneum is one of the first places that OC recurs, so I would have thought your OC is primary... just wondering or are they telling you something different to this ? and I'm not fully understanding... I know it makes no difference to the treatment.. just me being curious.. best wishes x G x

[iamstillme]

Hi Karen, i was diagnosed with Primary Peritoneal in March this year . It does appear to be rare but it seems the treatment is the same as ovarian cancer as is the staging of the cancer

I do hope this helps. Sorry to hear you have to go through this

Ally

[kaza64 in reply to iamstillme]

Hi Ally, how are you doing did u have surgery and or chemo ?

[kaza64 in reply to iamstillme]

I was diagnosed in march also.

[doreenharwood]

Hi my letter says I have primary peritoneal cancer stage 111c but I was not told anything about it being rare. I was diagnosed at the end of May this year. I am having 3 sessions of chemo then a CT scan to see if my tumor has shrunk then hopefully surgery to remove everything. I will be seeing my Doctor on Monday so I will ask if it is a rare one , Love Babs x x

[kaza64 in reply to doreenharwood]

Hi there, i havent had cchemo they just did the surgery and my CA125 levels are low at the moment fortunately, Please let me know the outcome when you see your doctor on monday thanks, Karen

[iamstillme]

Hi Doreen . Apparantly it is a rare one but treated the same

Ally x

[doreenharwood]

Hi Ally , After reading the blog I searched the Internet about primary peritoneal cancer, and yes it is rare. When I went for my first consultation I was not told this. It was not until I got my a letter about my diagnosis that I knew what I had. As I was just told it was ovarian cancer. But as you say the treatment is the same as ovarian cancer. I have had one chemo session and have got the next one on Wednesday 11th July. What treatment are you receiving and where are you having your treatment. I'm having mine at Maidstone hospital. Hope to hear back Love BABS x x

[iamstillme in reply to doreenharwood]

Hi Doreen . The key issue i think is that the actual ovaires themselves are normal and the ppc effects the peritineal lining and the lining of the ovaries . The treatment is the same ie chemotherapy drugs and the surgery . I am doing ok . Have had 3 lots chemotherapy and then surgery . Now having final x 3 chemotherapy and hope only 2 to go . My consultant says now in remission as ca125 normal and after surgery no evidence of disease . Long may it continue

Ally xx

[harley]

Hi Karen

So sorry to hear about your diagnosis with this very rare cancer.

I was diagnosed with OC stage 3 after 5 months of tests in 2010. after 3 sessions of chemo, Carboplatin/paclotaxel I had a scan which showed it had shrunk then surgery to remove ovaries. This is when they disovered it was PPC, my ovaries were fine but they removed them anyway. Treatment still the same as you say, after 6 sessions of chemo no sign of cancer was to be seen. I had quite severe stomach pains in June/July last year, 7 months after finishing chemo and a scan showed that it had come back, a further 6 sessions of chemo, the same prescription was proposed but I developed an allergy to Carboplatin so they continued with paclotaxel on its own. again after 6 sessions, no cancer to be seen. I am waiting to go for my 6 month check up at beginning of August so fingers crossed, I do suffer from some tummy pain but I have been told that with everything that has happened inside with scar tissue etc, I should not be surprised.

I could write a book about the whole procedure and I have to say I was not aware of the high rate of re-occurrance for OC and PPC during my first cycle of chemo so it came as a real disapointment to find out that it is so high. But fingers crossed yours will not return, a positive attitude goes a long way.

I lost my hair twice - surprised it has the tenacity to grow back although I really dont remember it being so grey Ha Ha. Not happy with the big tummy I seem to have now a days.

I didnt find the whole chemo experience too bad, the ups and downs with the steroids was difficult for hubby to handle but I have met some amazing people on the journey.

I live in Scotland (what part of the country are you from?) and am studying stats on OC/ its recurrance and the costs to the NHS for repeat cycles of chemo. My arguement is that they know what treats it, its time they took the next step to stop it coming back.

Much fund raising is done for research into breast type cancers but very little is being done for us with this silent disease.

I hope I havn't depressed you, as I said stay positive and live life to the full when posible.

Hope this has been helpful

Joanna

[fannyanny in reply to harley]

Hi Joanna, just read this after sending my last reply. How right you are about what is being done for us ladies with OC. I did a run (walk actually!) in Hyde Park last year with my daughter for Ovacome. Do you know that out of the hundreds of woman there, we could only find 5 of us with Ovacome T shirst. Target Ovarian were there - more evident that us - but still the minority by far!! God!! If the NHS know what to do - why don't they DO it?? So many ladies are suffering. We have heard from friends that there are drugs in France and in Spain that are being used - drugs that are being manufactured in the UK - shipped out to Europe but we in the UK cannot get them? What is going on??? Listen, I hope that you'll be ok as I do myself... will let you all know how the outcome of Fridays appointment at the RM goes ok.... x

[fannyanny]

Hi ladies, thanks for all your replies. Not being medical, one can only glean bits and pieces as we go. I had an ovarian cyst removed in June 2011 - stage 3c grade 3. (total de bulking) Had chemo - had all clear. 3 months on another all clear - went for another scan so that I could have my temporary colostomy reversed ( had to have part of my lower bowel taken away also in op) Scan was all clear to have this op. Imagine my bitter disappointment to wake up in recovery to find I still had my 'bag' and then to be told that they had found 'seed like' surfaces on my peritoneal!! Another scan 2 weeks later showed this and then my oncologist said I would need more chem - gem/carbo - but if this did not work - well count the months!!!!! Now, I see on this website that many ladies are on 3rd, 4th, 5th and more chemos?? This is why I am going to the Royal Marsden for a second opinion because I want to know exactly WHAT is going on with me! Not ready to give up - ever!!

[Hidden in reply to fannyanny]

Hi Fannyannie

It still sounds to me that your primary is "Ovarian cancer".. and that you have secondaries (or spread) in your peritoneum..." Primary Peritoneal cancer" .....starts in the peritoneum first... I am sorry with all you are going through and hope you will get a good result soon.. love x G x

[GeorgeSuffolk]

Hi Karen

I had a very similar experience to Joana, after my surgery they said that it was possibly PPC because there was only a tiny spot on one ovary and both ovaries were normal size, but that it didn't make any difference to the treatment.

I was diagnosed initially with OC April 2011 and unfortunately had very early recurrence after only three months, second line chemo failed and now on weekly Taxol as they say I am platinum resistant.

Wishing you all the best with your treatment, the Marden is an excellent hospital.

George x

[Archiebanana]

Hi Karen, I was diagnosed with primary peritoneal cancer in December 2011. I was not told that this was rare but have since read it. I had 4 cycles of chemo then an op in April with a full hysterectomy & debulking. My consultant told me he had 'got it all'. I had to have 2 more cycles of chemo followed by a ct scan. This luckily showed no cancer. I feel really well in myself and am trying to remain positive. Good luck!

[doreenharwood]

To all the ladies thank you I have primary peritoneal cancer stage 3c and after reading all your stories I'm again filled with hope. I am looking forward to my next chemo as each time I fell they are shrinking my tumor a little more. Love to everyone and lets fight this together . Babs x x x

[nandi]

Hi Karen, I was told I had PPC in Nov.2009. I was diagnosed with OC in July in July 2009, but after 4 chemo carbo/taxol sessions I had surgery and my ovaries etc were clear and the diagnoses changed to PPC. I have responded well to treatment both initially and for recurrences. I wish you all the very best.

[Honey3]

My daughter's cancer was OC and not PPC, but I just want to add to George's comment about the Marsden being an excellent hospital. The Gynaey team there have been wonderful. They are very on the ball and explain things very clearly in our experience. I hope all goes well with your appointment. Stay positive - it sounds as though you are very determined and good on ya!

Very best wishes,

Honey xx

[Hidden]

Cancer of the peritoneum is treated as advanced ovarian cancer because the cell is identical. When ovarian cancer spreads, it sometimes moves to the peritoneum which is why PPC is treated as advanced ovarian cancer. This is not one disease. There are distinct cancer types and within them, sub-types. It is now thought that low-grade PPC is a distinct entity to high grade cancers of the same area. More research needs to be done to determine how the different pathways run, how and why they develop, and what drugs need to be developed. There is a shift I feel to a more personalised way of tackling cancers of all types. There is a growing feeling that some cancers of the peritoneum actually begin in the fallopian tubes and spill out into the abdominal cavity. The pathway could be from borderline tumours and this may be one of the reasons why the surfaces of the ovaries are affected. It amazes me that all ovarian cancers seem to have been lumped together for research purposes for years. It doesn't take the brain of Britain to realise that if one cancer spreads relatively quickly but is responsive to chemotherapy and another doesn't move quickly but is platinum resistant, that they could, in fact, be distinct as entities. I can't understand how we got to 2012 and this is still an issue in terms of research. The dawning of realisation takes too long sometimes, but we are all human, I know that. The good news is that new drugs are being developed all the time and at some point, this disease won't be an issue. The trouble is that whilst this cancer is not silent, it's hard to spot where the noise is coming from. I got the Ovacome magazine through my door today. I thought the Teal nail polish campaign was brill but I was too late to get people to join it. Maybe next year. I wish you good healing thoughts.

[mrsspeedy]

I too have PPC diagnosed in sept 2012 like everyone found very little info but have been treated absolutely wonderfully at queen charlottes/Hammersmith hospital I have had 3cycles of chemo then debulking surgery but only did a partial planned op but unfortunately for me some disease was too spread and full surgery would have been way too radical so have been told that I have to live with this as a chronic disease ! Coming up to having my last cycle of chemo but am so scared of what the future holds I feel that the chemo has been my comfort blanket tho on a good note my ca125 has continued to drop I just think its back to the beginning of the unknown again so we will have to wait and see !!