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!
Hi,
Following MOAS in July, and good ongoing recovery, I had CT this week and have been told that there is recurrence at spleen, and deposits in peritoneal cavity. Local Trust waiting for advice from Basingstoke re next steps. Felt so positive – now devastated.
Hi everyone.
Well recent CT shows recurrence of cancer cells on spleen and Iliac crest area. Now need chemo and waiting for appointment with oncologist. Only had CRS / Hipec in July so this is a shock to the system. Anyone else experienced recurrence so soon following MOAS?
I had recurrence a year to the day after my CRS & HIPEC at Basingstoke in April 2018. It IS completely devastating, but not insurmountable, though very hard for you physically: you’re unlikely to have fully recovered from your last surgery. Emotionally? That is even tougher I think. Groups like this can be invaluable. I hope you have all the support to sustain you. I managed to climb the highest mountain in Britain two months after being told of my recurrence. We all have a warrior within us!
I have recently been diagnosed with PMP and now awaiting surgery. It took a long time for diagnosis. I had been unwell at the start but then felt good again however I have a lot of discomfort now with the sensation of needing to urinate and also have Jelly seeping from my belly button. Did anyone else experience this and what did you do to try and relieve it?
Maeve, please contact your doctor to discuss the symptoms you describe.
Hi Maeve, I had a ‘leaky belly button’ but before diagnosis- in fact I was fobbed off by my GP but it was only a few months before I got very sick and then diagnosed. I just tried to keep it very clean but definitely speak to your specialist, it sounds very uncomfortable. All very scary at first but I’m nearly 6 years from surgery etc. and no more leaky belly button issues since!
Hi
I have just found this site and I’m very glad l have as I was diagnosed with appendix cancer in March 2020/ This was after having terrible pain in my bowel which my GP put down to constipation. From Christmas 2019 till February 2020, l was kinda fobbed off so l got really mad and demanded they did tests.
I had a fast track 2-week appointment and the results of my colonoscopy were diverticulosis disease but l was fortunate to have a very thorough surgeon as she said she wasn’t happy with how my appendix looked and did a biopsy. I had debulking surgery at The Christie under Mr O Aziz. My ovaries, stomach lining, the appendix and some lymph nodes were removed, then followed with FOLFOX chemo in June, and I’m now on FOLFIRI chemo. As my cancer is like a “blanket” all around my intestines and stomach wall, they don’t feel at the moment that another operation is feasible as they can’t remove it all.
I have been in touch with Mr Cecil at Basingstoke who, after my next scan, thinks he would like to try another debulking but my oncologist and other team feel it would not be the answer as they will leave some cancer in there and I would be stopping chemo for me to recover from the surgery. It is a risk it could grow right back.
I was given a prognosis of 1 to 2 years of survival and less if there becomes any obstruction in my bowel in March last year. I feel a bit low atm as l was only told about the down side of having more surgery on Monday so waiting now for March CT scan, then I have to make a choice, I guess.
What are other people’s thoughts or experiences of being told they might only have a couple of years, or take a risk having surgery as a pose to just staying on chemo until it stops working, would love to hear from someone who as my oncologist calls them ‘the lucky people’!
Take care everyone, and keep your pecker up.
I am in a similar situation. Although not for debulking but for pelvic exenteration. My oncologist has given me 2 years and says I shouldn’t have the op it but Mr Moran in Basingstoke has referred me to a specialist to discuss. I read somewhere that ‘if we are given the opportunity to live a little longer we should take it right!’. My oncologist has always erred on the side of caution.
Hi Teresa, l agree, l think my oncologist is also always trying to either avoid the facts or is playing it toooo safe, after my scan in March l will have a clearer picture, As anything that prolongs life, has risks but l think is worth the risk, rather than just letting it beat us !! Keep me posted on your choices please. X
Hi Jude,
I have found that oncologists typically tend to have conservative views about surgery. My local oncologist has a relatively poor view of my surgeon. He believes he is too radical and operates when he shouldn’t. I know of a woman who was diagnosed with appendix cancer who was seeing my oncologist and his response to her when she asked about the surgeon was ‘he’s just a liver specialist’. Whilst that was his original specialisation, he has performed the most MOAS* of anyone in Australia and is considered the expert on it here.
When I was first diagnosed, I was 33 with extensive disease and told by the first specialist I saw that I wasn’t a good candidate for surgery and should do chemo for six months. I got a second opinion and was told I was an excellent candidate for surgery. That first surgery gave me two fantastic cancer free years which I wouldn’t trade for anything.
I think have honest conversations with the surgeons about exactly what outcome they think they can provide. How much disease do they think they’ll be able to remove, how much extra time do they think it will give you, are there any concerns they have about going in, what is their opinion on the chemo working, what do they think recovery will be like? And then go with the option you are most comfortable with. Also, consider how you recovered from your first surgery. Did you have complications, did you feel ok, do you think your body could handle it again?
There is no right answer, just the one that suits you. You are right – after your scans you’ll have a better idea of where you stand and how the chemo is working.
*MOAS – Mother of all Surgeries, a term used by patients and caregivers to describe cytoreductive surgery and HIPEC.
Jude, I am with you, I was diagnosed with colon cancer in December2019, and was told that it hasn’t spread to any limphnodes or anywhere outside of my colon so it would be a in and out surgery and good to go. Well when the surgeon got in there 2 weeks later he discovered that my appendix was the culprit and had spread muccin all over my abdomen, I looked for a specialist in this type of cancer and found one in Milwaukee WI. We went to see him he did scans and testing and I met the requirements for MOAS, I had to undergo chemo which did nothing at all to the cancer. I underwent hipec on April 10, 2020 surgeon worked in me for 16 hours. I still have terrible diahrea and bouts of nausea and shortness of breath since surgery but nothing I can’t deal with. The one thing that bothers me terribly yet today is what my surgeon said to me a couple days afterwards, and that is even with hipec the best I can give you is two years to live. Next week I go for my 4th scan which will be 1 year. I am scared to death about his statement of 2 years. If he is right that means I have 1 year to live. I am a Christian and believe in God and the power of prayer. But how do I shake the feeling of possibly only having a year left?? I am not a quitter and will not give up but I did have to retire at 58 because it was impossible for me to do my job any longer and and having other health issues showing up now which is a result of the cancer and treatments. How do I cope with this???
Hello,
Please I wanted to find out how you were told that your cancer and come back? I didn’t my yearly scan and was sent a letter to say that an appointment has been booked for me to see the doctor. So I am really scared. The first time I did the yearly scan a letter was sent to me that all is clear, so this appointment letter is scaring me.
Sorry I just noticed so many mistake in my message, at out of worry. Please for those who said they were told their cancer returned was it by letter or face to face? My first result I was sent a to say it was all good. So this time I was just sent a letter that the doctor wants to see me, so I am scared that maybe the cancer has come back. Is so worrying
I am in the same situation, have had 5 yearly scans where the results (all clear) have been sent by letter. This year I have received an outpatients appointment via letter and am very anxious!
Hi Everyone. Having read all of the comments in here I guess I’m very lucky as I’m 9 years in from pmp. My only symptoms were a tummy going up and down like a balloon over the space of half an hour and, one night, VERY smelly poo! That took me to my GP who sent me to hospital immediately with a suspected blocked bowel. X-Ray and scans showed a shadowy mass but over my whole abdomen. Surgery showed my appendix huge an full of jelly but it was intact and weighed 2.4 kilos! It was stuck to my bowel and so part of that had to go. It was only the pathology that found the cancer less than 1 mm from breaking out. Had 3 months of Folfox5 chemo ( a randomised 3 month vs 6 months trial) . Now, nine years on, I’ve still got what seems to be IBS and the bloating and variable poo situations of that but otherwise I’m fine ( at least no one has told me I’m not after 7 years of follow ups!). There is life after pmp!
I had my surgery on January 3rd 2020 by Mr Cecil at Basingstoke. Recovery was slow still have some after effects.
Reading your stories have helped as I felt so alone felt nobody really knew how bad it was.
So far my CT Scans and bloods have been clear however, always scared about the next scan which is in February
I have a great consultant in Crosshouse hospital Mr Rae who always makes contact after each scan. Also my McMillan nurse Hazel tells me I can phone her anytime if I have any concerns.
If anybody wants to talk over anything about the surgery don’t hesitate
I’ve just had the results of my first scan some 6 months after CRS/HIPEC surgery. Don’t know what I expected but I have some mucin in the pelvis area. This scan will be my base scan and the next scan in 6 months will show whether it’s increased, reduced or stayed the same. Like Nancy in her post I also feel quite isolated and also ignorant of what to expect post op. Trying not to over think all this and know there’s no guarantee of anything but wonder what’s usual.
One year after my huge surgery at Basingstoke scan shows there is more fluid and can be the start of pseudomyxoma recurrence. Bloods are very normal. No indication to do anything until further scans January 2023 and compare. Can recurrence at slow rate be a positive.