Please somebody anybody.. I’m going out of my mind worrying at the thought of loosing mum. We have a meeting at the hospital tomorrow to discuss what they can and can’t do and it will be the first time the hospital has really discussed any of this with us. I’m so scared their going to tell me my mum doesn’t have long to live :( please does anyone know anything about this type of cancer? Xx

Hi

im so sorry to hear of your mums diagnosis, I understand how scared you must be. 

Im sorry I don’t have experience of her cancer, I have stomach cancer but I hope someone comes along soon to offer advice. 

I hope things become clearer after your meeting tomorrow, try not to use google it’s not helpful. There are many people living with cancer even those with stage 4, there are treatments and trials that may be suitable for your mum as well as alternative therapies. Try and make notes at the meeting, I found I forgot everything the second I walked out of the room, it’s also helpful to go armed with questions. 

I know it’s very scary, it’s a huge emotional rollercoaster and I really feel for you. 

Good luck tomorrow, I hope all goes well x

Hi Lol, 

I'm very sorry to read of your mum's diagnosis but hopefully the meeting at the hospital today will answer some of your questions.

I'm not sure what time your appointment is but I just wanted to give you our cancer nurse's telephone number in case you wanted a quick chat with them before you head in. You can call them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

I can see you've done a little bit of research already but I'm just going to include the information we have about primary peritoneal cancer on our website for you to have a look at as well in case you haven't come across it yet.

I hope this helps and I wish you and your mum all the best for today.

Kind regards, 

Steph, Cancer Chat Moderator

Hello Lol90

I know your post is quite old now, but I sadly find myself in almost the same position as you with my mum. I wondered how you were getting on and how things are with your mum. I'm hoping they were able to do some treatment for her.

i really don't want to spring this on you out of the blue, so i'm sorry if this is upsetting for you, but I wanted to connect as, like you, I am struggling for information about this rare cancer. My mum also has fluid around the lungs. 
 

If you feel able to reply, i'd be extremely grateful. If not, I completely understand and I wish you and your family well. Many thanks xx
 

Hi Johol, 

I am too am in the same boat, with my mum, I just wondered how you are, I'm hoping you and your mum are ok? 
 

xxxx 

Morning all

Reading the previous posts breaks my heart that everyone of you were absolutely terrified! With little or no information about this dreadful disease.

I was diagnosed in June 2020 With primary peritoneal cancer with a high grade serious cancer! And that it was extensive.
I too was absolutely terrified as I believed I was going to die at any time, there was little information given and I was in such a state that I didn't want to know anything about it as it was so terrifying.

After speaking with my cancer nurse and my daughter who did some research on the disease gave me a sense of relief when I learned that there are options to prolong life, depending on the extent of the cancer and whether it has spread to other parts of the body, specifically the liver, lungs and lymph nodes.

thankfully for myself the cancer has not spread to these areas.

At least two weeks after diagnosis I started my chemo and I have been responding to it very well, therefore I have now been offered surgery, this surgery is huge, it's called Cytrolreductive ultra radical surgery also known as debulking, the aim of the surgery is to remove as much of the cancer as possible, once recovered from this surgery there will be more chemo.

(Please note I am no expert and different people may be treated differently, I can only speak from my own experience)

I am a 57yr old grandmother, and I am also scared, I feel I am too young to die, and I want to see my grandchildren grow up, I don't want to leave my mumand my siblings either.

But I feel confident the treatment I am getting will prolong my life, it's amazing what advances have been made to treat this disease and people are living with it rather than dying from it.

There is a Facebook page which gave me some encouragement, there was a testimony of a lady who was 17 yrs free from the disease after her treatment, I must be honest there were some dreadful horror stories on there as well so I removed myself from the group, I would not recommend you look to the internet as it can be scary, but CancerUk is a good place to start, or there is a resource called Maggies, I found them extremely helpful, so I would definitely recommend them.

last week I was in hospital and the lady on the next bed to me was diagnosed 3yrs ago with the same cancer and was given 3 months, she's still hear and is undergoing more chemo, she's living with it, as am I.

As I said I'm not an expert, but I have asked lots of questions re this disease and I am more than happy to help anyone who needs some advice or just a shoulder.

take care everyone x

Hello April59,

I am sorry I have only just seen your reply to my post! How are things. I hope you and your mum and doing ok. I am pretty much in the same situation as I was with my mum xx

Hi Johol,

I hope your mum is doing as well as possible with the diangonsis and you have managed to find some further research. 
 

Unfortunately I lost my mum in august of this year very suddenly in a matter of weeks actually and I'm still coming to terms that she's gone. I cared for my mum for the last 6 months and attended every hospital appointment scan and chemo session over the last two years. 
 

Firstly, my mums case wasn't easy she suffered with chronic kidney disease the year prior to her emergency bowel resection and diagnosis with primary peritoneal cancer. Her kidneys operated at roughly half their capacity and as such she was never offered the treatment April59 has talked about below. Due to the kidney disease we were unable to have the full dose of chemo (carboplatin as this is kidney toxic but had a much better chance of working than taxol). My mum had 4 lots of chemo in the spring to summer of 2019 and responded really well with little side effects. In summer 2019 the scan revealed she had stable disease. The cancer hadn't spread further but the chemo hadn't shrunk it either. Basically we were in limbo. The oncologist said further chemo risked the kidneys so best to pause and go again when the cancer started growing again (we were always told it would grow). My mum lived a happy life for the next year. It was amazing I had got my mum back laughing and joking and we cherished every moment of her well-being. 
 

A scan in February 2020 revealed the cancer was still classed as stable and so off we went enjoying our life's and time we had 'bought back'. The pandemic started leading my mum and me to shield. She still was doing great health wise despite tortured by not leaving the house. She had 2 weekly calls with a hospice to check on her well-being. We were never told she was at a terminal stage. 
 

All of a sudden my mum started with health problems fever feet swelling (a common sign of her kidney disease flaring up) shortness of breath and tiredness. In July she went for a kidney scan as a check up on her disease to which they found a new tumor pressing on her kidney pipe. A full body scan later that month revealed the cancer had spread to some parts of her liver but only small tumors close to one and other and her kidney which they couldn't remove. At this point the oncologist would not offer another session of carboplatin due to her poor kidney health (we risked dialysis) and so the options were down to taxol (nasty side effects) or tamoxifen (hormone drug less effective but better quality of life). My mums number 1 priority since being diagnosed was always her quality of life. So we bite the bullet and went with tamoxifen. Once again her diangosis was never upgraded to terminal despite the change and we were never made aware of the risks this drug can have in increasing the risk of strokes. Unfortunately 2 weeks later my mum suffered a stroke at home I was there to ring the ambulance (I thought would be the most traumatic experience of my life). An mri scan later showed the cancer had grown in just two weeks with a large tumor now in her liver. It had gone from doing nothing to a year to growing fast in a matter of months. My mum recovered really well from the stroke which gave us hope but unfortunately 2 weeks later she suffered a pulmonary embolism and died within a matter of hours in the hospital we were not able to visit because of covid (this was the worst day of my life) I will never forgive myself for this. And I will never forgive myself for not researching the risk of strokes and cancer patients and that drug. I miss my mum terribly

I know this will scare you, and it's rich for me to say don't let it. I was so angry my mum had this rare cancer. But I realise my mum had such an unlucky hand dealt to her. If she hadn't had had kidney disease she could have had full strength chemo and maybe been offered the operation below. My mums case was unique in the problems she had prior and towards the end of her life. Sadly she got dealt a poisoned hand and we did the best we could in the 2 years of the diagnosis by going on a few walking holidays many theatre trips and being together

I found the experience of this cancer truly frustrating the lack of information regarding the disease survival rates and treatments is crap. The lack of support my mum received from experts on the disease was neither that helpful. Please take care of yourselfs and also to you April59, I hope your operation is successful and you beat back this disease. 
 

I am grieving the loss of my wonderful mum at just 25 which sounds as I type so unfair. But please don't loose hope I hope your mum is in a better starting position than what mine was, all the best x

Hi Snippy, 

My mother (62) has recently been told she has cancer in peritonium area. The primary is still unknown. We was told yesterday (after me asking what stage (our first appointment with a Gastro Oncologist) that it is stage IV and non curable .....but treatable?

I am still very confused by this information, as doctor wasnt very clear. Waiting for endoscopy and colonoscopy next thursday and a furth MGT meeting to discuss findings hopefully of a primary I presume?
 

Would appreciate any advice, from yourself or anyone on this type of cancer, amazing to read your story gives me a lot of hope for my Little Mum who is adored by us & my heart is broke into a million pieces. 

Hi April59, 

My Mum has just been told recently she has peritoneal cancer, so I am too in the same boat. I hope you are ok, how are things now with your mum? Understand if you do not wish to chat, just thought I would reach out.

xx