Newbie

Hiya hope you’re well considering everything at the moment. Basingstoke and the Christie in Manchester are the specialists in the UK who deal with our condition so you will be in great hands once you are referred. One thing I will say is be don’t be surprised if they recommend further surgery particularly with hipec (if you already haven’t had it) the special hot chemo which is applied to the area to kill off cells. This thing can be beaten/managed so don’t lose hope and do some research and find the online pmp forums for support from many of us who have come out of the other side of this. Good luck x

Hello Mandac33,

Gosh, what news to receive in the current climate! Your story sounds very similar to me. I was misdiagnosed with ovarian cancer and had two large tumours removed on April 6th 2010. There was a fair bit of 'stuff' left in there. I was referred to an oncologist for chemo and got the news at the first appointment that they were going to refer my case to Basingstoke.

I hope the fact that I had my hysterectomy in 2010 is some sort of inspiration? 

Angela

Thankyou for your reply ! I think i won’t be going to Basingstoke till after the virus has died down ,I suppose as they’ve said it’s low grade ,slow growing this will be ok? I’ve not done too much research as yet but my consultant said to come on here and get support from the people who love with it x

Hi Newbie, we are in a similar boat, I was diagnosed about 9 weeks ago and am going to Manchester to have surgery in 4-6 weeks, I need vaccinations 4 weeks before any surgery and I’m getting them tomorrow . At my consultation there was no mention of Covid at all, just the treatment I needed. How am I remaining positive?

Once I was told the extent of surgery I needed I was overwhelmed. When I came off the phone and asked how my husband was feeling he said “ relieved” not a feeling I had experienced. His view is, you can be treated that is a positive. Visiting this site has helped, talking about it helps. My moto is” it will be alright in the end, if it’s not alright, it’s not the end” I guess not thinking about it in too much detail helps too. Hope this is helpful.

alitoot

Hi. Hope you are doing OK. Have you had your surgery yet? I have been newly diagnosed and just been referred to the cristy hospital x 

I had my surgery in April although it wasn’t till after I was diagnosed with Pmp , I had full hysterectomy ,appendix and gallbladder removed ,but I haven’t had any treatment as yet ,I’m under Basingstoke but having scans Etc at my local hospital ! 
how were you diagnosed ? It’s a shock to be told and even more so that it’s so rare !! x

Hi and good morning.  I hope you are doing well after your after your surgery, that sounds like a big old operation.

I have had surgery back in February and I have had my appendix, bit of bowel and subsequently found out that I have had 2 different types of cancerous tumors removed. 1 was neuroendocrine and the other a appendiceal neoplasm.

I am now waiting for delayed tests due to the virus and am so wanting to know where I am with my current health situation.  Whilst I feel quite well I have started having sharp pains again albeit not too frequently but they are the pains which originally took me to the GP and final surgery.

You are still awaiting treatment? Can’t believe how slowly these things move. So sorry to hear this.

i was suspected ovarian cancer. When they went in to take a biopsy they noticed the mucus and a tumour. They took a biopsy and the pathology report showed, peritoneal adenomucinosis- basically PMP. 

I have been referred to the Christie hospital and am awaiting my first contact from them. I feel fatigued and am struggling to do daily tasks with breathlessness. How do you feel? 

Hi ..

It's good you have been referred to the Christie they are apparently good in their field I believe.

I hope you hear soon about your plan of action.

Personally I am awaiting tests and eagerly await that, never thought I would be so excited to be waiting a colonoscopy and endoscopy...

Fatigue is very unpleasant, frustrating and depressing.  

All the best and feel free to contact me again, I wish you well.

The fatigue, and slowness of things is very frustrating! I hope you get your tests sorted out soon x 

contact me any time. Best wishes x