Peritoneal cancer journey

Hi Bubblejam. Can I offer you a warm welcome to the Macmillan Online Community. I’m sorry to read about your probable diagnosis but I’m glad you’ve found us.

My cancer is different, but a cancer diagnosis of any kind makes us ask lots of questions, causes confusion, stress and probably emotions we’ve never experienced before. We all agree, the endless waiting for tests, results and Consultations is so debilitating so to be able to talk to other people who are in the same situation will help you get through this.

The Macmillan Community is organised into dedicated support hubs. You’ve joined our Peritoneal cancer group, this will be a good place to meet up with others making the (support of a family member on the) same type of cancer journey.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. 

The Macmillan Support Services also provide lots of information, support, financial guidance or just someone to listen.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

Sending you welcoming hugs B xx

. 

I can totally understand how frustrating and worrying this is for you.  The time between tests and results can next steps can seem agonisingly slow when every minute it seems that nothing else is on your mind.  I was super ill when I was going through the same kind of process and quite frankly I wasn't capable of much. Feeling helpless and not quite in full grasp of what was occurring was truly scary.  My own 'lifeline"  was my Cancer Nurse Specialist who was able to talk through all those worries.  I'm 6 months on from that initial diagnosis and feeling much more "in control".   Do reach out to those who can advise you and  to steady you when you wobble. This forum of others like yourself, and the "ask an experts"  section could help.  

Hi Bubblejam

ive had the same diagnosis. It started as an appendix tumour.  I then had cytoreductive surgery and HIPEC in March. I’m feeling pretty well but experiencing some discomfort. 

I’m very happy to offer you any advice or support you think you may need as this cancer is largely unknown. That makes me feel a bit lonely sometimes as we don’t always take the same journey as other cancer patients. 

I do hope you get the tests resolved and they can offer you some peace of mind soon. The middle of the night can be overwhelming so I tend to listen to podcasts. 

Please let me know if I can help in any way.  

Hello,

I am reading this two years after you posted it but wondered how you are?

Vicki

Hi Vic.. 

I just read the above posts and was wondering the same.  
I too have peritoneal cancer, it would be good to chat with someone with the same xxx

Hello Tina

I am so sorry to hear of your diagnosis. I’m at the start of the tests for peritoneal cancer and am terrified. I’ve not been diagnosed yet but am expecting the diagnosis following the tests. I see the consultant on Sunday and at the moment don’t know what to expect or what any plan will be. 
Was yours an incidental finding or did you have symptoms and if so, what were they if you don’t mind me asking?
Please forgive me if you do.

I can’t offer any support at the moment as I am at a stage you have already gone through. It’s all a bit overwhelming. 

Thanks

D

Hi ‘D’.. hey you ask what you want hun ..

I’m sorry you’re in this situation & I do understand how you feel. 

Where are you ? Plonker sounds very British 

Mine was found in January, I had a twisted bowel / hernia & was scanned.  That scan showed what they suspected to be secondaries and during the emergency operation on my hernia etc. they removed a large chunk of my omentom to be tested.  The findings were positive & later confirmed as stage 4. 
I had 3 & a half lots of chemo, then a large ‘debulking’ operation in May. A primary tumour wasn’t found, just bits / smaller tumours sprinkled all over.  I then had a further 3 lots of chemo & am on Avastin to prevent the cancer growing / spreading.  

The only strange ‘symptoms’ were a sudden onset of severe heartburn for months and worsening pain which was due to the twisted bowel.. So to answer your question, I have zero idea if the heartburn had anything to do with the cancer.
Though a study had been carried out on women’s shopping habits and an increase in purchases of indigestion meds & painkillers showed a higher rate of ovarian cancer in the group.  ( Ovarian cancer is in the same ‘group’ as peritoneal cancer) 
I’ll see if I can find more accurate details of that study & let you know.  ( chemo induced brain fog , sorry )

Nothing I can say to you right now will stop you being worried sick, but please wait until you see your consultant. Try not to drive yourself mad until you get your diagnosis, easier said than done I know.

What symptoms have you got / what made your docs suspect peritoneal cancer ? 

Tina x

Thanks for replying so quickly. My main symptoms are pain and nausea but bloods were off. 

I'm in the UK. Where are you? 

In regard to the study, I've never had to buy heartburn meds before but recently have bought loads.

My anxiety is through the roof at the moment like so many others. I know I've just got to wait and sit it out.

Thanks for replying and answering my questions.

D

I’m living in South wales..  where are you? 
I heard about that study just after I’d been diagnosed & mentioned it to my oncologist. She knew all about it but agreed with me that had I gone to my gp & told her I’d like to get tested for cancer because I had heartburn, I’d have been laughed at & given gaviscon ! 

Don’t be frightened on your own hun.. Im here if you need to talk. X 

Tina x

www.imperial.ac.uk/.../