Newly diagnosed with ‘rare’ cancer and conflicting emotions

Hi

I am so sorry to hear about your journey.  I was diagnosed with primary peritoneal cancer at the end of January 2022, after nearly a month of tests while the medical team tried to pin down what I had (one possible diagnosis was ovarian cancer and I understand the symptoms can be similar).  The medical team have been great and have moved very quickly, so you are right to keep pushing - I have started chemotherapy.  It does seem to be quite an uncommon cancer and some of the stuff online is quite scary.

I do hope you get some action and some answers soon.  I found the waiting for the diagnosis really hard and feel more in control now I have a diagnosis and treatment plan.

Very best of luck x

Thanks for the reply.am glad that you are on ypur way to getting treatment.you are right its the niot really knowing  that i find hardest to deal with.

Can i adk-did u have surgery too or is that for a later date? Hope its nit affecting you too much. 

Hugs.

God i am so sorry for my awful spelling.had no glasses on and very tiny keys on my phone.lol

No not had surgery. Consultant says she’ll review that after chemo 

I’m trying to stay positive but it is quite shocking - I’ve not really been I’ll before …

hope you’re doing ok x

Hiya, I’ve just seen your post and can relate. I’m hoping things have moved on for you since you put the message on. Have you started treatment? I had a lump appear in my bellybutton and was completely asymptomatic. The lump was removed and was cancerous. I had 3 sessions of chemo starting last March, then a scan and another 3 chemo. Then I had a hysterectomy in July and was told it had all gone! Unfortunately a scan in October showed I now have tiny spots on my peritoneum. I’ve been on maintenance tablets for the last few months and whilst it’s not spreading the spots aren’t getting smaller so I’m about to start more chemo! As I understand it you can’t have any surgery for peritoneal cancer. If you Google peritoneal cancer the prognosis is scary but this is in part due to it being rare and as such there’s not so much data and a late diagnosis as symptoms often go undetected. I also told very few people because I couldn’t cope with the ‘pity/so sorry’ comments. 

Hi Ice.maiden. I am new to this forum. I am so sorry you have been treated so slowly. I have peritoneal cancer which was diagnosed last September. I am very lucky that here in Yorkshire all the experts concerned are on the ball. I started chemo within six weeks of diagnosis. I had 3 rounds of chemo followed by the operation to remove as much as they could find. after 3 weeks I started on the next 3 rounds of chemo. The operation is major surgery but so worth having if you are offered it, I was petrified before i had the surgery but the care I received at St James Hospital Leeds was amazing. I took a look on google and it is pretty scary to read but not always accurate. I am now undergoing further treatment to stop the blood vessels from feeding any residual growths every 3 weeks for the next 12 months.

I wish you all the best and hope your doctors pull their fingers out and give you positive news.

ElizabethB 

Hi Elizabthb! I am due to have cytoreductive surgery in July and am quite scared - it looks like such a major operation. Do you have any advice on preparing yourself mentally for this, or any practical advice? Thanks x

Hi  Midj. Yes it is major surgery and I was also scared before my operation. Once I was admitted I knew there was no turning back and felt slightly calmer. When I came round I felt relieved it was over and obviously knew the recovery would be slow. The care I received from the hospital team was second to none. The pain was kept very well under control. I continued to take Dyhydracodeine until recently which helped a lot. I just thought about my family and knew I had to do whatever I could to be around for as long as possible. It helps if you can have a positive attitude, I know it's easy to say but it really does help your recovery. All the best for your recovery and will look forward to seeing a post on here to say you are recovering well. x

Hi everyone my husband was due to have cryotherapy for his peritoneal cancer and the huge operation that you are all mentioning. Yesterday we discovered a malignant rectal polyp. The radiologist was very negative. Waiting for surgeon now and husband seems to have given up. I am feeling desperate. To be a widow at 58 doesn’t bear thinking about

Hi Toyo,  So sorry to hear of your husbands diagnosis of Peritoneal cancer. I have had my chemotherapy and operation, my operation was not cryotherapy but debulking, this is what is normally offered depending how advanced the cancer is. Basically they take away all the cancer they can see. Although this is not a cure it can extend the life expectancy. I had a polyp in my womb which they removed, hopefully they can remove your husbands rectal polyp. Please tell him to stay positive, a positive attitude can make all the difference. If you haven't heard of Deborah, nickname bowel babe please look her up on the internet, she is such an inspiration. All best wishes and positive vibes coming your way for both of you.  xx