I had an ultrasound and a large cyst was found. They could not see where the cyst was attached as it was so large, the size of a small baby. After surgery to remove this cyst, I was given a diagnosis of pseudomyxoma peritonei (PMP). It took three months from when I originally saw my doctor to getting a diagnosis.
At my local hospital Poole in Dorset, I had a full hysterectomy and my appendix with the tumour removed as well as part of my bowel a small section of my stomach lining and 2/3 litres of mucin. If I was to recommend anything to have in hospital, it would be your favourite perfume because it helps make you feel human (although I know this might not be true if you have had HIPEC as it can affect your sense of smell for a while).
I listened to my favourite music when I first came home and slept a lot. The biggest change I faced after my operation was to become reliant on my husband. I did my family history and I watched a lot of daytime television. I went on a pre-booked Mediterranean Cruise 6 weeks after my operation. I was told in my local hospital that I would have a further operation but when I saw Mr Mohamed at Basingstoke and North Hampshire Hospital six months later (!), I was put on ‘watch and wait’ with yearly scans. Emotionally, I’m constantly anxious and I find support both from my husband and from Pseudomyxoma Survivor. I do sometimes get tired and have stomach pains but otherwise, I would say my health is good. I do feel guilty as I have been lucky compared to a lot of PMP patients yet I am anxious all the time.
My advice for someone newly diagnosed is to take a notebook and someone with you at your appointment with your consultant. Write down any questions in the book beforehand and make sure you go through them all. If possible, record the meetings with your consultant. You can be so emotional at the time that it’s difficult to take it all in and remember afterwards. Talk about your concerns. If you don’t feel you can do this with family, find a friend who will listen and make sure you join the support group.
– Susan
I'm on watch and wait
Susan’s story is in her own words and we’d like to thank her for allowing us to share it.
Watch and wait
'Watch and wait' is also called watchful waiting or active monitoring. Sometimes, as hard as it is, there's nothing to be done but wait and see how the disease develops before going ahead with a course of treatment.
Hi Susan
I have just been diagnosed with PMP yesterday by Mr Mohamed at Basingstoke Hospital.
I have already had an operation just eight weeks ago at another hospital where my appendix, right ovary and fallopian tube was removed. I am just recovering from the surgery.
The result from the surgery where sent to Mr Mohamed and I am coming to terms with the diagnosis still.
I have just had another CT scan and I am booked in for a colonoscopy. Based on the results of these tests i will be on watch and wait too with another scan to be booked in for March 2021.
I still trying to take it all in!
Hi Susan/Julie.
I have just come across this site and it’s bringing back emotional memories. I am 10 weeks post op cytoreductive/HIPEC/right hemicolectomy surgery at Basingstoke.
I had appendectomy and bowel obstruction surgery at my local Trust in February following many visits to GP with right-sided pain. I was later told, following biopsy, that appendix had been cancerous and had attached to bowel as well as leaking into peritoneal cavity, hence the right side pain. I was referred to Peritoneal Malignancy Unit Basingstoke.
The Basingstoke team were great but being so far from home (North East) was difficult for me and family during lockdown.
I can totally understand comment about having favourite perfume! I was really self conscious of bowel function issues.
The journey home was difficult in the car for seven hours. Post-op, I would say abdominal pain, constipation and tiredness have been most challenging physical symptoms. Emotionally it has been a rollercoaster.
We just celebrated the birth of our first grandchild two weeks ago, and questions about future health and prognosis is anxiety provoking a lot of the time. Now waiting for an Oncology referral to see if I need ongoing chemotherapy. Still feeling tired a lot of the time and conscious that I need to think about returning to work. Can’t believe how my life has changed in last eight months.
Hi Julie, It is tough when you are first diagnosed. If you want to communicate either by email or phone please do let me know. If you contact Pseudomyxoma Survivor and ask for your message to be forwarded to me, we can make contact.
Take care
Susan S x
Has anyone experienced the cancer returning around the lung.
After two surgeries 12 rounds of Chemo I was stable for two years.
Now fluid around lung as appendix cells .
I am on Fofox and Avastin.
Anyone with similar problems.
Hi Anne,
I have recurrence in my pleural, outside lung. During my cytoreductive surgery I had part of the right side of my diaphragm removed due to disease. This is how the spread occurred in my case. I did have some pleuritic pain, but that has settled and the areas are not really causing a problem.
Hi Anne. I am on watch and wait with nodules on my lungs for about 5 years. No symptoms at all xx
Hi Anne. After 2 MOAS (one in 2016 and 2019) I was diagnosed this year with a recurrence in my lungs. In my 2016 surgery my diaphragm was scraped quite extensively leaving a number of holes in it which is how I assume the cancer got in there. I have a large tumour in my right lung (about 5cm x 4cm) and many smaller ones in both lungs. I am on capecitabine. I chose not to do folfox or folfiri as I did both of these at the beginning and I hate the effects they have on me. The brain fog left me barely able to hold a conversation. Whilst on the capecitabine the tumour has grown slightly by a few millimetres. I’ll no doubt have scans again in Jan/Feb and see how it’s progressed. If it has progressed again I may have to consider other chemo options which I’m not looking forward to.
My lung capacity had been affected by my 2016 surgery as my diaphragm wouldn’t expand as much as it used to and is further restricted by this. I have about half a normal adult’s lung capacity which obviously has it’s issues. I get frustrated at times that I am so limited and can’t do things like I used to, but I have an almost 9 year old foster son so I’ll take what I can get!