Pseudomyxoma peritonei

Pseudomyxoma Peritonei is a rare cancer of the appendix. If you're suffering from PMP, or know someone who is, join this support group.

Newly diagnosed

Cassie78
Posted by

Hi

I was diagnosed on the 9 Feb 2018 with PMP and I am now waiting for an appointment with the specialists in Basingstoke.

My profile will help you to understand how I got here. 

Still trying to get my head round what’s happened, happening, going to happen.

Cassie

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
Dreamthief
Posted by

Hi Cassie  /   

Sorry to read you have now also been diagnosed with PMP :(

I have 'tagged' group member so hopefully as a new member they will make contact to answer any questions you may have.

While you settle in here do check out the PMP Survivor UK Support Site (clickable link) One of their patrons is also a Macmillan Voice.

Hope this is of some help for now, take care, G n' J

pmpsurvivor
Posted by

Hi Cassie

Your path to Basingstoke isn't dissimilar to my own. I was diagnosed with Stage 4 ovarian cancer in 2010 and given a few months to live. The diagnosis was changed to pseudomxyoma peritonei (PMP) after a full hysterectomy. I was referred to Basingstoke and had my operation there in 2011. The team there are fantastic although it does seem to take ages to actually get to that first appointment. That can be sooo frustrating.

As Dreamthief suggests, have a look at the Pseudomyxoma Survivor website and you can get in touch with me, if you think I can help!

Angela
Pseudomyxoma Survivor


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor 
Cassie78
Posted by

Hi Angela

Its so nice to heat that someone has experienced similar to me. They had refused to operate and were heading down the chemo route For me. Thankfully my oncologist had sent off the biopsy to another hospital or I would be started by now. It was he that wasn’t happy with the pathology and their diagnosis. 

I hope I dont have to wait for too long for the appointmen. 

Im sure I will have questions furthe down the line so thank you in advance. 

bestest wishes to you

Cassie xx

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
harleyquinn78
Posted by

Hi Cassie, 

I was diagnosed after having my appendix out may 2017 it followed me having a part of my bowel removed in sept 2017.


They now only have to do yearly scans and bloods, which is a massive relief however not is still frustrating and scary, I was operated on in Whiston then referred to the Christie as that was the closest hospital for me to attend. 


I hope you are ok and make a quick recovery xx

peace and love 

HQ x

Cassie78
Posted by

Hi HQ

Thanks for your reply.

Struggling waiting to see what can be done. The longer the waiting goes on, the more I think it’s spread too far.  Two weeks since referral and nothing as of yet.

i fell well enough and have little to no pain.  My stomach is quite swollen and I get full quite quickly. I still can’t help thinking the worst though, although this I’m told is a natural thing our brains do. 

Hope you are keeping well, bestest of wishes to you

Cassie xx

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
harleyquinn78
Posted by

Try not to worry, you are in the best hands, if you are worried try to call the hospital and remind them you are there it can be stressful as I say I waited 12 weeks as I somewhow slipped through the gaps! 

They don’t mind answering your questions as they know how stressful it is, i hope you hear from them soon! 


Best wishes 

Xxx

peace and love 

HQ x

Cassie78
Posted by

Thanks HQ

Ill try and stay calm but will call and remind them I’m here 

take care

Cassie xx

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
Pinhead
Posted by

Hi Cassie, have you had your appointment for Basingstoke yet?  I was admitted to hospital in April 2014 with stomach pains and diagnosed with appendicitis - when opening me up they found a ruptured tumour similar to the one your described, mucinous, in my appendix and removed it along with part of my large and small bowel (I was fortunate the surgeon in A&E knew what to do). Nothing else was done at the time. I’ve had annual CT scans and bloods, most recent one December 17, which showed a pulmonary embolism on my right lung and I was called in 7/1 to see docs and started on blood thinners. Scan also showed a thickening of the scar tissue in my bowel which, following further tests etc, has been confirmed as a reoccurrence of the tumour. I was referred to Basingstoke who reviewed my case (this week) and have asked to see me, I’m now waiting for an appointment. My local hospital are a large Bowel Cancer unit and could have removed the tumour but I’m keen on the specialist treatment from Basingstoke intended to prevent further reoccurrence. The waiting is very difficult – like you, I have 2 kids (4 & 6), married, uncle, 40 in a couple of months . . . . . .

Cassie78
Posted by

Hi

i called the specialist nurse at Basingstoke on Wednesday this week and was told my case ha sheen discussed this week (Tuesday). I have my appointment to meet them on 6th April. Still waiting for the letter to come in the post. You can call and leave a message and they will get back to you, that’s what I did. 

My local hospital hasn’t sent my colonoscopy report so they’re waiting for that. I expect if you haven’t had one they’ll ask for that to be done before you go, it seems to be common practice from the experiences of others I’ve heard from.

The waiting Is excruciating. Can’t relax even with the appointment pending. Trying to keep as busy as possible.

Have you seen the PMP survivor website?   Could be helpful to you maybe.

Let me know how you get on.

Best wishes

Cassie

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
Pinhead
Posted by

Thanks Cassie, I had a colonoscopy about a month ago - Basingstoke have asked for a new MRI which I'm hoping to have done locally and sent on.  6 April is a long wait, I was hoping for a far quicker turn around than that.  I had a little look at the website but yet to look at it in detail.  Trying to keep distracted too but not easy.  Take care, Adam 

Cassie78
Posted by

No problem. I was hoping it would be quicker too. Took 10days for my local hospital to send my notes etc and they still forgot the colonoscopy report. When I asked others how long they’d waited it was between 2-3 months. My appointment is about a month after they discussed my case and nearly three months since local hospital diagnosed. I’ve never been a big reader but apparently that’s my thing now to keep my mind off things. Take care too Cassie

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.