My name is Richard White and I am a 38-year-old married teacher. On March 1st 2016, I was admitted to hospital with abdominal pain and operated on the next day. The surgeon found a tumour in my appendix and mucin throughout my abdomen. This story is about what happened next, my surgery, coping with the stress and the positives that came out of it.When I started feeling unwell in mid-February I was too busy to take it seriously. I put my loss of appetite and stomach ache to a bug and kept telling myself it would pass. A week later and I finally see my Doctor who can’t explain it and sent me away.You can read more on my blog:
https://ioseducation.wordpress.com/2016/09/09/cancer-when-it-hits-you-out-of-the-blue-mid-career/
In case you missed it...
Cancer 52 meeting
Did you know that the percentage of patients diagnosed with a rarer or less common cancer in the UK is now 53%? No, I didn’t either until I went to the latest Cancer 52 meeting at the House of Lords.
Findacure Rare Disease Showcase, Cambridge
The charity Findacure recently organised a Rare Disease Showcase in Cambridge, and I attended as a representative of Pseudomyxoma Survivor. My only slight problem was that my badge simply said ‘Pseudomyxoma Survivor’ so I had to keep explaining that I actually represented an organisation and wasn’t there as a lone survivor of a rare disease!
My belly size surprised the doctor more than my hernia
He asked if I drank a lot, thinking it was a liver problem causing accumulation of fluid in the abdomen. He requested an ultrasound, which revealed the presence of intense ascites. There seemed no other abnormalities.
I was diagnosed with stage 4 appendix cancer in April of 2013. The surgeons told my children I was terminal and only weeks to live. I am now 57 years old and still extremely confused. I underwent surgery for a right hem colectomy in April of 2013. What prompted my doctor visit was I had developed a hernia in my stomach. I was in no pain nor was I ill. A general surgeon decided to remove my appendix which on a CT was enlarged but with no signs of cancer. I had a massive surgery with weeks away from home. I began chemotherapy multiple rounds and was told last year the treatments were not successful. My oncologist moved away and I met with an oncologist taking her patients. He suggested I visit with surgical oncology. I was the third person over the years to undergo a HIPEC surgery. I was in the hospital with multiple complications for almost three months. I had no follow up care except with my primary physician. I now am experiencing several other organs malfunctioning. Three weeks ago I was told and so were my children I am cancer free and there is absolutely NO signs of cancer in any or my digestive tract or organs. It seems almost impossible to believe due to the fact I was a hospice patient for three years. I was also informed there is not a cure for appendiceal carcinoma. I would greatly appreciate any comments positive or negative regarding my final diagnosis.
Hello, Beth. You didn’t say what your original diagnosis was, I assume from your comments later on that was appendiceal carcinoma. Have you seen an appendix cancer specialist?
Hi Beth, sounds like a worrying and confusing time for you. Where are you being treated? Is it a pmp/appendix cancer specialist? If not I suggest you see one to explain and help you understand your situation.
Good luck,
Susie
Hi Beth, do you have a Facebook account? Please message Angela (above) so you can join our Facebook group. The Facebook group is private so that we can all post about embarrassing things (we talk about our bowels a LOT) and find support in our local area. We have over 800 members whose lives have been touched by appendix cancer. I’m 42 and had the surgery just over a year ago. I’m now fit (relatively) and healthy. Obtaining a specialist team who are very experienced is really important. As Helen said, appendix cancer is usually diagnosed at stage 4 but it’s different than other cancers and can be quite treatable depending on your individual circumstances.
This is a very confusing cancer. Even the name! Pseudo means fake! So we have a “fake” cancer of the peritoneii. Where do u live, UK? There are specialists that will be able to explain more and do further investigations. You found the best place to get advice. I’m from Aus and I saw two hospitals and four GPs before I had a GP who finally did further investigation and didn’t do what the other doctors do: say there was nothing there and then hint it was in my head. When I had my peritonectomy with hipec last year, it was spread from ovaries to lungs. And those other doctors r useless cause they had never heard of it. Like SO many ppl! I had an ex colleague say that she had never heard of it, so I must be making it up (not said TO me of course, this was what i overheard her say to someone else). If you are in UK, ask other PMP patients and find out the doctor to get a referral to at Basingstoke and see a specialist. Other doctors just don’t know what they are doing.
Hello Beth,
gosh that does sound confusing! It does sound like you need a second opinion on your previous and current state of health. Where are you living (which country, and if in US, which state) – might help others give some input on where you can find a specialist to talk to.
On the happier side, appendix cancer is rather often stage 4 at diagnosis, as it tends to be a silent grower. But HIPEC is the treatment of choice, and there are people around with many years survivorship.
Hang in there,
Helen
Beth, I really don’t know what to tell you. Where were you treated? Miracles DO happen. Enjoy the holidays.
Hi Richard,
Thank you for your post and a blog. It would be great to know how you are doing currently, I had a complete cytoreductive surgery +HIPEC at Basingstoke December 2016 , and am now meant to commence a 6 m course of chemo (probably Folfox), so just wondering what the most successful regimens out there for appendix cancers and what was your experience in terms of chemo if you had any.
All the best wishes
Andrea
Feel an update is required after this article was posted.
I’m coming up for 4 years all clear and life has returned to normal. Been skinny, fat and getting skinny again. It’s made me more compassionate to others and reminded me to enjoy the little things.
I’m now far more honest about my health and advising others to get checked out, men can be stubborn when it comes to admitting they need to see the Dr.
Rick x