Hi I have been diagnosed with primary peritoneal cancer stage 3 aggressive .. Anyone else out there with this cancer

[Elft63]

[Whippit]

Dear Elft63, Welcome to our friendship circle. You'll no doubt get lots of help and support here and will 'meet up' with other women in a similar situation.

The time round diagnosis can be traumatic. I don't have PPC but I do have an aggressive ovarian cancer. I just thought I'd start off the replies by saying you can have an 'aggressive' cancer but it's not necessarily aggressive in your body. I hope that's a glimmer of hope for you. I was diagnosed with the most aggressive type of tumour in March 2011 and was terrified thinking it would be there multiplying and taking over in no time. Sometimes it does - but there are cases where a tumour defies the experts. I'm hoping that's the case for you.

Sending lots of love at a particularly difficult time. xxx Annie

[Elft63 in reply to Whippit]

Thank you for your reply .. The ppc had invaded the whole of my abdomen including my diaphragm .. I've had major surgery and now have started aggressive chemo .. Your right it's a very scary time ..thank you Annie xx Elaine

[Whippit in reply to Elft63]

Dear Elaine, I do know someone who's got PPC and is on the Rotterdam Regime which is a tough sort of chemotherapy. I'll send her a PM just in case she feels she can get in touch with you privately if she doesn't like to post on the site. It would be good for you to have an ally. xxxx love Annie

[Hidden]

Hi

Sorry to hear your news.

I do believe there a few people in this group with PPC and no doubt they will contact you.

At this time of year quite a few people are on holiday

Love Anne x

[Elft63 in reply to Hidden]

Thank you for your reply ..it would be good to hear from other ppc sufferers .. XxElaine

[Hidden]

Hello... I have primary peritoneal and was taken into hospital with an aggressive episode. I was subsequently staged at 3c but since have been told I'm Stage IV since the disease is in my lungs too. Having an aggressive episode is not the same as having aggressive disease, however. For most of the time with aggressive disease, the outcome is favourable because aggressive disease is more likely to respond to chemo. For this reason, I wouldn't get too emotive about the word 'aggressive' because low grade too can have aggressive times. It is a truism at the moment that the more the cancer is active, the better the drugs work. So, that for you, is a good thing. That is what I hope very much for you. Having low grade can be distressing because, although in the early stages the outcome can be better than high grade, the chance of it being found at any other stage than later, is unlikely at best. Primary Peritoneal Cancer is treated like Ovarian because it is essentially the same cell but in a different place.The place makes a difference because when ovarian cancer travels to the peritoneum, it is at a later stage. Peritoneal Cancer is where Ovarian ends. When I was first told, I was beside myself. Now, because of knowing people here, I've found that I'm beginning to enjoy life. Not in the way I did but in a deeper way; a better way. I wish you well and send you my heartfelt good wishes. Love Tina x x

[HerThing]

Hi Elaine, I am sorry you have had the diagnosis leading you here, but welcome you to our community. As has been said, there are women here with PPC and OC and I am sure you will find all understand what you are going through. I thought it was worthwhile underlining what Tina said in terms of the nature of the disease. Don't feel like you need to seek out only those with PPC. Essentially, PPC and OC develop in the same way and are treated the same way, so the experiences of every woman here may prove to help with any concerns you might have.

Best wishes to you, and once again welcome.

Andy x

[Dyana]

Hi ,

I have PPC , stage 3 , grade 3 , had surgery last Sept , after 3 cycles of chemo and then had 3 more cycles of chemo. I echo what others have said.PPC is treated like OC and aggressive cancers are not always aggressive but my understanding is that as the cell multiply very quickly they can be very responsive to chemo. I agree it is really scary and if I can offer you any support , please feel free to message me. Best wishes , dy x

[rgrinbla in reply to Dyana]

Hello, I am asking for my mom, she is about to finish her chemo before surgery, next step is hysterectomy and removal of omentum, what was your result of CT scan and CA 125, Before surgery, how did you decide on a surgeon and any points to think of before surgery, thank you in advance

[harley]

Hi Elft63

Welcome but sorry you are joining our club. I was first diagnosed with PPC in Sept 2010 after being wrongly diagnosed with OC stage 3. I have been told that it very rarely spreads but may return. I have had 2 recurrances since 2010 each treated with chemo. I hope yours does not return but I look on it as just one of a number of chronic illnesses that people live with. I have mostly managed to live life as normal and a positive attitude helps, difficult to achieve at this scarey time I know.

Lots of hugs

Joanna xxx

[Suzy]

Hi

I have PPC stage 4 , diagnosed in Jan 2010.It is treatable . I have had 2 lots of carboplatin, gemcitabine and am now on cisplatin with etoposide . Still going strong . The disease is more likely to be in the peritoneal cavity than in the lungs themselves. The fluid (known as ascites) can be drained . ...and you will feel much better after this . best wishes Sue

[cerise]

Hi there

Just catching up with posts. I too had PPC, same stages etc, etc diagnosed on Good Friday 2012.I had the seemingly standard 3 chemos, op and 3 more chemos then all clear in October and still doing fine....so far so good...... I overhauled my lifestyle and diet, had hypnotherapy and relflexology, all of which I think made a difference but it certainly helped me to deal with things. I had a 'team Sue' which included family, friends and the professionals! I do hope you have plenty of support and know that this site is a mine of information and inspiration!

With kindest regards and very best wishes,

Sue x

[Elft63]

Good to hear from you all , my experience of ppc is so different to others , I never had a raised ca125 .. In ever had the fluid in my abdomen .. I had my ovaries removed in feb ... My Fallopian tubes in march .. That is when they found the ppc cells in my pelvis , I went straight to surgery three days later .. My op took 9 hrs as it was everywhere .. I was in critical care as my lung collapsed .. I had to gave all my omentum removed and a bowel resection .. A pelvic debunk ..they even found it on my bladder .. My surgeon has removed what she can .. Now aggressive chemo to kill the rest .. It's good to know ime not alone .. Elaine xx

[mrsspeedy]

Hi ,I too have PPC grade 3 c diagnosed in oct 2012 been a roller coaster but you will get through it.The first few weeks of diagnosis for me felt like i was never away from hospital.Had 3 cycles of chemo then debulking surgery but unfortunately for me they could not remove everything but did remove 2 tumours that were on my bowel plus a section of bowel went on to have further 3 cycles of chemo for me they have told me that I have to treat the disease as a chronic disease and will have chemo as and when ca125,CT & symptoms indicate. I must admit when I went to my GP it was the last thing that I expected was to be told that I had cancer but looking back there signs were there the main one for me being bloating ,nausea and weight gain but that's not surprising considering they drained of 18 litres of fluid. The chemo I had was carboplatin and placitaxel at first but I had a severe allergic reaction to carboplatin so was switched to cisplatin and placitaxel.

By the way I have just turned 45 so not old in the scheme of things and that's what the drs kept telling me

If you have any questions please feel free to ask I will gladly try to help if I can

All the best

Nicki xx

[iamstillme]

Hi elaine sorry you have had to join us but glad you have found us as you will hopefully be helped through by the friendship on this site. I was diagnosed with high grade ppc stage 3 in march last year. Had optimal surgery and chemo and all clear since finishing treatment in August. There are many others here as well. Hope you are recovering from surgery ok and chemo goes well . We're r u having your treatment

Best wishes

Ally

[Elft63 in reply to iamstillme]

Hi Ally, i had my surgery at Cheltenham hospital , it was massive surgery pelvic debulk , removal of stomach omentum , bowel and rectum resections , removal of ppc from diaphragm , I was in critical care after and it 9 wks now since the op ... Was just beginning to feel normal and started chemo .. Lost my air this week ,that was traumatic , did you ave similar surgery , I have never had a raised ca125 . Bestbwishes Elaine

[iamstillme]

Hi Elaine . Yes similar omentum appendix peritoneal stripping etc . I had a previous hysterectomy and 1 ovary removed few years ago. Not as much as you poor thing . Know traumatic lose the hair but you will be surprised how quick grows back. My ca125 was raised at time . All well to date. Hope keep well during chemo . Best advice make most good days and take easy and be looked after on the bad

Love

Ally x

[Hilsuk]

Hi everyone, new to site, really helps to know there's a few of us around. I was diagnosed with this in June and have just started chemo 4 w ago. I'd had a laparoscopy and this showed multiple tiny peritoneal seedlings, all over bowel and diaphragm too-too much to remove . No ones talked tome yet about debulking surgery mid chemo , which some of you seem to have had , so will ask again about this. Seems the juries out for a standard treatment in the uk but lots of research going on. Are any of you having intraperitoneal chemotherapy as they do often in the states.? Have any of you had useful second opinions? Keen to explore all options as I'm sure you all are, as currently quite well and so much to live for. And tolerating chemo ok. Also know only had this since feb as was being followed up for another different cancer not related o this - ca 125 normal then, 770 a few weeks ago. Wondered if the marsden were open to newer treatments ideas ? Appreciate hearing of your experiences, and great to tackle this as a team, pooling knowledge and ideas. Love and positive thoughts to you all !! Hilary x

[Btte in reply to Hilsuk]

Hi I was diagnosed with high grade 3 OC July 12 after surgery, removal of uterus tubes and ovaries. I had follow up chemo 6 cycles carbo/taxol, finished Dec. 12 .C T all clear. Symptomatic again March 13. Referred back to my gynae. Consultant wh after examination and biopsy confirmed reoccurence in peri urethral region which he says is an unusual place, but after I was reviewed at M D T meeting C T scan showed 3 nodules in Peritoneum. I have just completed cycle 5 Carbo/Gem.I have also been oferred Avastin but my Onc. Is somewhat concerned because I also have Crohns Disease diagnosed just before OC, infact it was the scan for that problem that picked up the tumour in my groin. At the moment feeling quite washed out from the chemo. I was xmatched for a blood transfusion but my Hb had gone upto 11 and at the RUH in Bath that's their cut off so I won't be having. I'm sorry I seem to be going on a bit here, I think it's important that you talk and deal with things as they arrive and this site is fantastic to help. This regime of chemo has made a difference to size of tumours so I am hoping I won't need to do the Avastin . I wish you well and I have learnt over these last 2years that if I change the way I think about things it helps the way I feel.

[desre]

my ma dont know what stage yet

[desre]

i would like to know if stage 4 is it time or paliative care , sorry for the drab ? but i need to know and i know everyone is unique

[Ana_cro]

Hi,

Until a month ago I did not know peritoneum is. Now my father is in hospital almost 4 weeks. First two weeks doctors tried to figure it out right diagnose, and after this I am only listening how rare it is, that they have never seen something like this, etc.... Especially because it is male person... As I can understand my father is in stage 3, at the moment we are waiting for phd results. Yesterday he had a "little" surgery, doctor "opened" him and took some examples of tissue... Doctors are conviced that somewhere is primary tumor. Our hope was Sugarbaker surgery, but after this "little" surgery doctor decided that it is the best first go with cemo and then maybe again surgery...He explained to us that at the moment tumor is like "spider web/network" and that he do knot know where to start Sugarbaker surgery (that is to dangerous for know for him)...At the moment I can not find not even one example of male person with PCC, so my family and I are desperate for any advice, coment, etc...

Do you have experience with male persons with PCC, do you have experiences with first cemo and then surgery....

Please help

Br

Ana

[Ana_cro]

Hi,

Until a month ago I did not know peritoneum is. Now my father is in hospital almost 4 weeks. First two weeks doctors tried to figure it out right diagnose, and after this I am only listening how rare it is, that they have never seen something like this, etc.... Especially because it is male person... As I can understand my father is in stage 3, at the moment we are waiting for phd results. Yesterday he had a "little" surgery, doctor "opened" him and took some examples of tissue... Doctors are conviced that somewhere is primary tumor. Our hope was Sugarbaker surgery, but after this "little" surgery doctor decided that it is the best first go with cemo and then maybe again surgery...He explaind to us that at the moment tumor is like "spider web" and that he do knot know where to start Sugarbaker surgery (that is to dangerous for know for him)...At the moment I can not find not even one example of male person with PCC, so my family and I are desperate for any advice, coment, etc...

Do you have experience with male persons with PCC, do you have experiences with first cemo and then surgery....

Please help

Br

Ana

[Sibby21]

Whether it's PPC or Ovarian, they would probably treat with same drugs. At least that's what I've always been told. I would bet her surgeon was right in dx. Did she start with carbo-taxol first? Usually this is the frontline with either cancer. They treat PPC like ovarian. I am going on her 6th chemo since dx. I had about 3 months of chemo this year but does well with it. 1. Carbo/taxol 2. Carbo-gemzar. 3. Single gemzar. 4. Single agent carbo. 5. Finishing carbo-taxol again. There are so many options for drugs to use to fight this. Stay positive! Also, Olaparib was just approved by fda and has shown good results. It is a parp inhibitor. Doctors have talked to me about how There are many trials based out of MD with these drugs. Good luck!

[livingwithppc]

I was diagnosed almost a year ago with PPC 3c i have done 1 round of chemo 5 surgeries about to go threw another for abdominal hernia come new years eve I'm learning to live with it but the effects of being tired all the time keep me down occasionally I try to push myself to stay strong for my friends and family just wish there was more research on this cancer

[GD78]

Hi there, our mum has peritoneal and was diagnosed 4 years ago stage 3 with ascities. We are still fighting this with her, using alternative therapy now only, which us advised. T many as a cure. Also have just read a post about frankincense being a killer of cancer.

[ellseybellsey]

Dear all,

I have been informed by a consultant that I have cancer of the lining of the abdomen but didn't ask what type of cancer I have. I am being referred to a specialist cancer clinic in Basingstoke, he did inform me that the surgeon will cut out all the disease and my womb ovaries and fallopian tubes. He also told me that I will most probably have the chemo heated and put directly into my abdomen.

I feel such a fool that I didn't ask some really important questions but I was in total shock, I was only feeling unwell for a couple of months.

I suppose the good news was he could not see that the disease had spread to any other organs, and my ovaries are clear, just feel stupid that I don't understand really what type of cancer I have.

[HogwartsDK in reply to ellseybellsey]

Hey Ellsey,

Please don't feel stupid, I don't have the same diagnosis as you but when I heard the word cancer I didn't hear anything else after that! My sis came with me and luckily she was able to ask relevant questions but in the few days that followed I began to realise that there were a lot of questions we didn't ask so I wrote them all down as they came to me and brought them to my next apt. There was repetition but I didn't care and the consultant didn't mind. So write all the questions down that come into your head and I mean any if they are important to you they are important and I am a firm believer in the fact that there is no such thing as a stupid question especially in this context!!! 

Mind yourself and I hope you get some clarity soon. This is the worst time all the waiting and lack of clarity but it does get better!! 

Onwards and Upwards!! 

Dxx

[ellseybellsey in reply to ellseybellsey]

Hi everyone,

Friday was D day I finally had my diagnoses after my specialist asked for a second opinion I have been diagnosed with PPC stage three, I was not shocked as I had done so much reading on cancer of the peritoneal.

I am now waiting to start my first round of chemo, then surgery, thanks to those of you using this site although I am nervous I fee stronger knowing that other people share my journey.

And as DK states Onwardes and upwards!!

Ellsey 

[Gvaadt in reply to ellseybellsey]

How did your chemo go and what drugs did they use? Did it make you tired and sick? I begin mine soon.

[Mslmsmc]

Is anyone still on this post?

[Mslmsmc]

Is anyone still on this post?

[Gvaadt in reply to Mslmsmc]

Yes I just joined this scary battle! Hard to wrap my head around all I have been told. How about you?