How are you now? I was diagnosed in 2020 with LAMN. Contained to appendix and just an appendectomy. Watch and wait 1 yr intervals. Reocorrence in March 24 developed PMP. Tumour markers rising consistently and 12x13 cm mass low in pelvis on my last scan. Seeing hospital on the 18th.
Hello, I was diagnosed in August 2022, I was due to have my kidney removed but when they opened me up , they found that I had a ruptured appendix. They removed the appendix, but could not take the kidney as the pmp had spread over the body. I was then referred to Basingstoke where they took my kidney, spleen, gall bladder out plus I had HIPEC and the chemo wash, they could not not remove all my pmp, I am still living with it plus I have kidney, liver and lung cancer. Sorry this is so long. I hope this does not sound too depressing , I am still here 2 years later and I do not feel any different. How about you, how do you feel, are you coping ok. It sounds like you have been caught in time. I do so wish you the very best of luck, on the 18th, I am LAMN with Basingstoke but Stage 4 with my Hospital I am having immunotherapy with at the moment
Goodness you’ve had a very tough time. Mine was found when they thought I had an ovarian cyst, seems to be the way with most thats they find it incidentally. Yes you’re right mine was found early and I’m very lucky, is the cancer in your liver, lungs and kidney related to PMP? I'm with Basingstoke, yes I’m coping quite well I think, it’s a pretty stressful time waiting to see if this time I’ll need the surgery, feels like you can’t really make any plans until I know and have some idea of a time line. I keep thinking that 6 months ago I didn’t have the 12x13 cm cyst in my pelvis and if they leave me another 6 months could it potentially double! Probably doesn’t work like that but that’s how it feels. How was your recovery from the CRS and HIPEC? I hope you are doing as well as can be expected and you have some good support. Sending love x
Good morning, my Liver and remaining Kidney is not related to the PMP nor is the Lung Cancer. They are classified as renal cancer, but I was told it is extremely rare to have 2 completely type of unrelated cancers. The PMP hospital is still keeping an eye on my PMP, I am wait and see with them. They have the MDT meeting with my hospital (I live out of the area), I have been monitored since I left the PMP hospital, where I was told about them not being able to get all the cancer. The HIPEC and CRS was not a problem for me, I left hospital a week before I was due too. The staff are brilliant at the PMP hospital. have since been seen at my hospital, every 6 weeks for immunotherapy (I managed to change to 6 weeks from 3 weeks) again I don’t live in the area so travelling is a lot for me, but it is worth it. potter around at home, as this is my comfortable zone . I think maybe they will be seeing you as it seems large (to me it does,) I don’t know what the size was of mine, my pmp covered the whole of the inside area, but I don’t know when or even how it started, both my cancers were found by chance, a blood test, for another routine operation that was cancelled . I know how you feel about the uncertainty of making plans, I was/am still feeling that way, you are the first person that has had this cancer that I know off. It’s not the same when no one understands it. xx
There’s some great groups on Facebook. A Uk based one too, really helpful. You sound like you’re dealing with a huge ordeal, you sound very brave! Happy to chat anytime.
Hi, I hope you don't mind me joining your chat as I have just found this forum and am relieved to find others talking about PMP. I was diagnosed last Christmas when I had a scan for an ovarian cyst which showed PMP. I had CRS surgery in March when I had a full hysterectomy and my spleen and gall bladder removed, followed by HIPEC. Although I have recovered well, I still struggle a bit emotionally. As you say, it's tough having a rare cancer and although I'm being positive and getting on with life it's always at the back of my mind. I hope you both are keeping well and thank you for chatting about your experiences x
Hello, thank you for your chat. I am now 2 years after my MOAS, and I still struggle with this disease, no-one knows how you feel, I don’t know anyone with this. I also have kidney cancer stage 4 (one of my kidneys was removed 2 years ago) referred to as Renal with Liver and Lung. The PMP is never spoken off at my hospital appointments. I am having immunotherapy on an indefinite basis. I am LAMN, the cancer has never been fully removed. I am on the wait and see, but going no where fast . The Renal Cancer is always mentioned, and everyone knows a little advice to give you but PMP no one ever mentioned it. I think, if you can talk to someone, anyone it’s so much better, as you feel you are not alone. It would be nice to communicate with someone who understands how you feel. X
Hi, thank you for replying so quickly. Sorry to hear about your renal cancer, it must be tough having to deal with the PMP on top of this. I know what you mean about no one understanding how it feels to have this disease. There's so much info about other cancers and no one has ever heard of PMP - I certainly hadn't! Although I feel really well now, I do struggle with my emotions still. Everything happened so quickly and I think I was probably in shock and didn't appreciate at the time just what a big operation I was going to have. I think that's what I'm still struggling with. As my next check up isn't until March, I don't feel like I can plan ahead past March and I'm trying to pack as much in as I can before then, just in case. It's nice to be able to be open with someone other than those closest to me, as I really don't want them worrying. Would be happy to chat any time x
