The diagnosis is not OC

Got my diagnosis today, its pseudomyxoma peritonei and not OC. The surgeon told me that its low grade disease (phew!) but it doesn't respond to ordinary chemo or radiotherapy. Its a rare form of cancer that originated in my appendix and has spread all around my abdomen, including my liver. I have been referred on to a bowel surgeon for a colonoscopy and suitablity for the Sugarbaker procedure. The surgeon felt that due to my age and fitness level I am a good candidate as it is very major surgery. If I cannot have this op then it will be treatment of symtoms as they arise. I really appreciate all the support and kindness shown by all the ladies on this site and I know I dont have OC but I would like to continue visiting to chat.

Jane x

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  • I am so pleased that you haven't got OC.... I don't quite understand what you do have though.. and don't know whether it's good news or bad??

    good to have you sharing on here though.... and wish you all the very best.

    Love x Gwyneth x

  • Its good news, if the Sugarbaker procedure works I have a chance of a cure and if not a long period of remission. It has its risks but I am young(ish) and fit and otherwise healthy so hopefully I will be ok. It is a strange type of cancer that was only apparent when it hit my ovaries and they blew up to colossal proportions very quickly. The mucus in my left ovary spilt out and covered my spleen, diaphragm and liver with these low grade cancerous cells. The cells then start to produce mucus on the organ they are attached to and the mucus causes the symptoms and spreads the disease to other organs. I think thats how it works, I know it doesnt spread through the blood or lymphatic system so its easier to contain with surgery but not ordinary chemo.

    Jane x

  • Glad to hear it is not OC but you will still need support. Whether OC or not you do have something with similar symptoms and I for one will be glad to hear about your progress. The name is unimportant, it is only a matter of where it originated! Do keep in touch and let us know how you get on.

    Good luck

    Margaret

  • Thanks Margaret, I will keep in touch and keep u updated.

    Jane x

  • HI jane

    I'm sure you are feeling relieved now you have got a diagnosis and a plan for further treatment. Try to take things very easy while you recover , as a second operation is hard.

    Do please please keep in touch.

    Take care

    Love

    Charlie xxx

  • Thanks Charlie I will.

    Jane x

  • Hi Jane,

    I'm sure we'll all look forward to hearing how you are getting on, I will anyway! Hope whatever you have is very slow, to develop ....so slow that it might take about the next millennium may be good to aim for ;-)

    I'm also glad you have a plan of action now and that it doesn't seem as if things are too badly urgent.

    Take care and be kind to yourself

    Love Wendy xx

  • Thanks wendy, i can't explain the relief I felt when the surgeon said 'low grade' I can start to think about planning for the future and hopefully getting back to work as soon as Im able (I really miss it). I have a few hurdles to get over yet but I am determined to beat this and I think I have a good chance. :-)

    Jane x

  • Looking at your earlier reply (up the page a bit) I got it all wrong, didn't I? I see now that you have got a lot of treatment ahead of you, but it seems to have a good success rate when the stories on here are counted up. I think that taking arnica helps before a big op. It helps the body to take the shock of an operation and helps the healing process, so they say ... I took it and got over my op really well. I don't know if it was luck, care or arnica, but these homeopathic tablets cannot do any harm. Your attitude to it all is so good, too. I'm sure that helps a lot. Just wanted to say, all the very best of luck. I'll be looking for further news of how things are going with you

    Love Wendy xx

  • Thanks Wendy x

  • Hi Jane, I was really interested to see your post because I'm having the Sugarbaker technique with HIPEC done on me in Basingstoke hopefully in August. I don't have PMP (pseudomyxoma peritonei) but have mucinous OVCA which also seems pretty resistance to chemo and is spreading in the same way as PMP with the jelly like glop stuff! I had my appendix removed aged 16 so they are pretty sure mine originates in the ovary. There are only two specialist centres in the UK that do that surgery, they are Basingstoke and Christie's in Manchester so you would have it at one of those. I was told it's 10-12 hours op with a few days in intensive care and approx 3 weeks in hospital. I also have disease on the outside of my liver and spleen but they strip off the liver capsule and remove spleen and gallbladder (and anything else possible with disease) and strip perionteum then apply chemo direct to abdominal cavity.

    If you use facebook there is a very nice and supportive group of people with PMP that will tell you all about the treatment. They have welcomed me even though I don't officiaily have PMP. Just put PMP into the search box and you will find it.

    This macmillian page is helpful to understand what it is and mentions the surgery.

    macmillan.org.uk/Cancerinfo...

    Good luck and I would love to know how you get on.

    Claire

  • Dear Claire

    I've just noticed your post and your information about PMP. I've posted later on mentioning a friend who's just gone through the surgery with huge success. My friend was extremely nervous before her surgery but it turned out to be 100% success and she made a phenomenal recovery. See below. I'll mention the Facebook page to her.

    Good luck with your treatments. xxx

  • Thanks Claire, the gynae surgeon who told me the diagnosis couldnt really tell me much about the disease as it is not his area of specialty. He did tell me not to google it as each case is so individual that I would just scare myself. Needless to say I got straight onto the pc as soon as I got home! :-) The thought of the Sugarbaker procedure is daunting but as my disease is low grade the chance of it working is good, I would rather have one big op now than a series of smaller ones over time. I have to wait for the results of my colonoscopy and an assessment by the bowel surgeon before I am referred for the surgery. Its complicated by the fact that I live in Northern Ireland (I will cost the NHS a fortune!) my mum will come with me (she expects business class and five star hotel accomodation). I need to recover well from my initial operation and start getting fit so that I am a suitable candidate for the Sugarbaker. I hope your procedure goes well and most importantly it is successful. I will have my fingers crossed for u.

    Jane x

  • AFingers, toes and all other appendages crossed for you! My family is from N Ireland though I was born and live in England, so I have "fellow feeling". I hope your mum gets what she wants, mine would have been the same! Leeds, where I have my treatment has a hotel floor in the cancer care unit but I am not sure about the Christie in Manchester or the other specialist centre for youyr kind of treatment.

    Good Luck!

    Margaret

  • Bout ye! I hope she does too or I will have to listen to her gurning! Im going to go onto the hospital web sites for the 2 specialist centers to see whether they have on site accomodation. Im hoping my op will be during the summer months so that my daughter can come too, my mum can spend the time taking her to any local attractions so it will be like a holiday (she has a low boredom threshold!).

    Jane x

  • LOL! PLanning amusements for a pair with low boredom thresholds should keep your mind off your prospective op! If Manchester I am told that the Granada studios and the Coronation Street Experience are worth a visit! There is, of course the ultimate "shopping Experience" and the Salford Keys to explore with the Lowry well worth a visit if they are into culture! There is also a science centre I believe!

    Good Luck!

    Margaret

  • Thanks Margaret, my mum will have a full timetable of activities organised the minute I get confirmation that Im having the op! She may even include a few visits to my bedside within her busy schedule :-). Only kidding she has been fantastic and I don't know what I would have done without her support.

    Jane x

  • LOL! If my mum were still alive I would be getting up to comfort her! She found dealing with our illnesses very difficult! She is the reason I am bad at recognising pain! She didn't believe in it! Still I do miss her! She died in 1991 and I still find myself picking up the phone to tell her things!

  • She would be 98 if she were still alive and still maintaining she was 4 years younger!

  • Hi Jane

    Glad you now have a plan.Wishing you the very best with the Sugarbaker op.I hope you will stay in our group.

    Juliex

  • Thanks julie, I will x

  • Dear Jbobdot

    I was astonished to hear you have this rare form of cancer. A friend/neighbour was diagnosed with it last year. We began our journey together and are still close friends. Apparently it's something like 1:1,000,000 chance of getting this. There are two centres of excellence in the UK. She had her operation in Basingstoke. It was the most complex op of the day in the UK. Her recovery was astonishing. Just over a week in intensive care, and within 10 days she was home again.

    The oncologist in our local hospital didn't diagnose the cancer correctly and treated my friend with chemotherapy for both abdominam and gynaecological cancer - and as you know neither of these will have any effect. Yours has done well to spot it and refer you straight away. My friend found out about the expertise in Basingstoke and referred herself. The oncology nurse on this site knows the other centre of excellence in the UK and posted up a comment a few months back.

    If you feel it would be helpful to hear more about this at any time I could ask my friend for her consultant's name and any suggestions she might have. Perhaps you might even start a group?

    Wishing you every bit of luck with your treatment and recovery.

    love Annie xx

  • Thanks Annie, my surgeon was brilliant and knew straight away what it was but didnt want to tell me until the lab results came back on my appendix because it looked normal when he operated! Apparently the Sugarbaker procedure is now being used for treatment of other abdominal cancers that are not responsive to ordinary chemotherapy, including ovarian. Although its a major op with some risks its the only chance I think I have to increase my life span and see my daughter grow up. Hopefully I will be considered a suitable candidate!

    PMP is so rare that it would be a very small and intimate group but if I could help others who would benefit from this treatment (no matter how few) it would be worth it.

    Jane x

  • Hi Annie, great to hear your neighbour had a successful op. They do nickname the surgery MOAS (Mother of all surgeries!). I'm thinking about starting to help myself get really well for the surgery now my chemo has stopped. Lots of healthy food and long walk with the doggie are in order I think!

    Jbobdot- Basingstoke offer free accomodation to a relative or friend to stay on site. I think it's like a shared flat. It's such a massive op that they like someone to stay with you. It is only for one person but they can swap with someone else. I don't know about Manchester but there's lots of people who have stayed there in the Facebook group you can ask. My health authority had to fund the surgery at Basingstoke I was told they asked for £40,000. If your cancer started in the appendix your health authority does not need to fund it apparently.

  • Thanks Claire, thats good to know about the accomodation in Basingstoke I wonder would there be room for a small second person? You can let me know all about it when you have had your op and are back home all better.

    Jane x

  • Even though it's not OC, your illness still runs along the same lines as it has moved to your peritoneum whiich is what OC does for many women. I have PPC which is cancer of the peritoneum which arises in the peritoneum but since the peritoneum has identical cells to the lining of the ovaries, it's treated the same as OC. Like you, my disease is low grade but advanced and difficult to treat with chemotherapy. I wasn't a suitable candidate for the sugarbaker method as I'd already had so many ops and there was too much scarring in the abdomen. However, I had my first chemo last year and I did have a good response to the treatment. Since I'd been told that I probably wouldn't, I was quite desperate to be honest, but I did and since then online, I've known of lots of women who are in my position even though I thought I was the only one in the world with this quite rare cancer. It's given me lots of hope... more hope than I could ever have. One of the woman I know from another site has your illness with low grade disease..She too has pseudomyxoma peritonei although hers is not low grade. She posts with the women who have OC and has remained well for quite a number of years. Really good thoughts are sent your way. :)

  • Thanks Tina, thats reassuring to know. The life expectancy of people with PMP seems to be good following the Sugarbaker procedure and although the cancer can return its years down the line rather than months. Im am glad you got good results with the chemotherapy, long may it last! What would we do without the internet? This site is such a fantastic source of information and support I would be floundering about in the darkness without it!

    Jane x

  • The two centres dealing with PMP are Christies and Basingstoke so do make sure you get referred to one of these centres. I am glad that you have found someone else on this site in a similar situation and that you have found the facebook group. If there is anyother way we can can help do feel free to ring Ovacome.

    Best Wishes

    Ruth

  • Thanks Ruth,

    Im just awaiting an appointment for a colonoscopy to investigate whether the cancer has spread into my colon. Hopefully the consultant will refer me on to Basingstoke or The Christie for further treatment.

    Jane x

  • why ever you should stop.Im waiting for scans and had a blood test and got to have another one.They didnt find high levels of cancer cells but i still got to have the blood test again as i had green tea that morning and i have classic tell tale sighns!Stupid me didnt realise it would affect test but it show impaired glucose so i could have Polystistic ovaries but as there are other symptons which could lead to other illnesses but i have a big bloated stomach i look 9months pregnant so i just have to wait!This blog helps as this week has been my worst nightmare just having to wait for the results.I couldnt do without it thanks for the blogg keep letting us it's really helpful to show symptons and compare notes as one lady had ov and said she looked pregnant too and they found a tumour weighing 7lbs so we will see!!!

  • Absolutely everything we say on here helps us all in someway through this minefield and empowers us to ask for the help "WE DESERVE" Thank you your input its very helpful.

    Best Wishes

    Nicola

  • Hi Nicola, I hope your blood tests come back ok. As I have found out the blood tests told the real story from the start that my cancer didnt start in my ovaries (high CEA levels and normal CA 125 levels). I too looked 9 months pregnant and this happened over a couple of months and that was what prompted me to go to the doctor. I am lucky that my doctor took my concerns seriously and referred me straight away. Hopefully your doctor will get to the bottom of what is wrong with you and I will have my fingers crossed that its not cancer. Good luck and thank you for your comments.

    Jane x

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