Next steps

Hiya I suppose everyone’s first consultation depends on their personal pathology and what exactly they are dealing with but my first consultation with my consultant in the private clinic was a discussion about needing more surgery (cytoreduction with hipec) something which completely took me by surprise as I wasn’t expecting to need anything further. I was sent for up to date scan and bloods and a plan for surgery was put in place. I was allowed to hold off the surgery for 5 mnths as with my pathology it wasn’t super urgent. Hope this helps a little? X 

Yes it has, thank you Flowery. I guess them saying you could wait 5 months was a positive thing, I don’t have a clue about my pathology yet. I know I will need further surgery. When were you diagnosed and how are you now?

Yes I took it as a positive once the shock of needing further surgery had wore off haha I had my last surgery in October 2018 and it took the best part of a year to get pretty much back to a decent state, fingers crossed so far all my scans have been clear so I’m classed as NED no evidence of disease at the moment. My next scan which was due in May has been postponed with the Covid outbreak but hopefully it won’t be too long now. 

I hope not. How many surgeries have you had? If you don’t mind me asking what did they consist of? That is a fairly long recovery time, what do you think made it so long? I am so pleased that you have had two years where things have been clear for you. Have you been able to do all the things you want to? Sorry so many questions, please feel free not to elaborate if you not comfortable with any of them and thanks for discussion so far, it is really useful to me

It’s no problem, it’s a long story so I’ll try to keep it short ha I had part of my bowel removed along with appendix due to having a rumour which had leaked mucin into the area. Had this surgery in my local hospital then they referred me to the Christie where I found out it was pmp and I needed cytoreduction surgery with hipec (localised chemo) to make sure that everything was removed with less chance of anything developing further. This type of surgery and treatment is typical with pmp/appendix cancer and you’ll find a lot of us sufferers have had the same treatment. With having so many bits and bobs removed it takes approx a year to recover as it’s quite intensive although I did go back to work after 6 mnths but really struggled. I am doing alright now with some bowel issues but nothing I can’t cope with. I really does depend on what your pathology is from whatever explorations you have had as there is lots of variations. 

Thank you For response. Did you have a stoma to aid the bowel issues. I have one at present but hope when get next surgery to have it reversed. Will let you know what happens next. 

Alitoot

No I just about managed to avoid having one. Keep us updated with your progress and good luck with it all. I found this and other online pmp forums really helpful and gave me a lot of support so don’t think you have to worry on your own there are a lot of us that have come out of the other other side of this condition. 

How are you doing now? Hopefully OK.

I am newly diagnosed. Was referred to the Cristy hospital

last week. The Liverpool women’s hospital feel this may have originated in my bowel, which is unusual. Once you are referred to the cristy hospital what is the process? X

Hiya I’m doing fine, hope you are not too bad considering. After I was referred to the Christie I had to wait for the consultants team to assess what the plan was going to be , this took a couple of months before I was called in to see the Dr there who went through my treatment plan etc. If it is pmp it tends to originate in the appendix which is attached to the bowel (large intestine) but they will go through everything with you obviously. You will be in good hands there , they are amazing x 

glad to hear you are doing ok.

wow, a couple of months! How did you feel in that time? I’m lethargic and struggling to do basic tasks. 

The consultant I seen initially thought this had come from the appendix. Now thinks maybe the bowel. Not sure if he meant PMP which originated in the bowel, or a mucus bowel tumour which has leaked into the abdomen area? I didn’t even think to ask this question until after I’d left the hospital! 

I have only been referred to the cristy this week.

praying to be seen ASAP as I just don’t feel well at all. Sleeping around 12 hours a night and the bloating is so uncomfortable. Also short of breath, particularly at night time Xx