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Category: Diagnosis

  1. John's Story (part 1)

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    Our latest guest blogger is John. Today, he shares with us the story of his diagnosis.

    John shares his story with Pseudomyxoma Survivor

    I had no direct pain or no visible signs of any problems. The first real sign came after a scan.  In June 2012, I went to work as normal but by mid-morning I had a pain in my back on the right hand side.  This intensified throughout the morning to such an extent I could not sit down; the only relief came through walking.  No sooner had the pain started but it went away. Just before lunch it started again. This time it became even more intense. I drove home and I called out a doctor (it was a bank holiday here in France).  He came within 30 minutes and suspected I had kidney stones.  He gave me morphine and prescribed some other medication.  However by 5pm, the pain was so bad I contacted the health help line again who told me to go to the nearest hospital. By 6.15pm I was in Accident and Emergency, immediately treated and was hospitalised for three nights. During that time I had two scans, one ultrasound and several X-rays.

    John shares his story with Pseudomyxoma SurvivorEventually, after electric pulse treatment two stones, broke down and I passed them in my urine.  I was given an appointment for July 2012 for review.  In July, I went for a scan and the doctor in charge said I had something seriously wrong since she could see a “fog” or liquid around my liver and my spleen.  She advised me to go back to the hospital immediately.

    That afternoon I say the doctor who had treated me while in hospital and he confirmed that this liquid had been there on the first scan taken in June. He said it was probably due to inflation caused by the kidney stones and told me to wait for another 3 months and have an Ultrasound (a scan was considered too expensive).

    At the beginning of November 2012, I went for an ultrasound and again the doctor said there was something abnormal and told me to have a scan.  I had the scan the following month and I saw the consultant Doctor Crampon in January 2013.  The doctor in charge of the scan and my consultant still did not know what this liquid was. They did not think it was a cancer but they really had no idea.

    An endoscopy was organised and two procedures were done – both “up and down”.  The consult confirmed that there was no sign of cancer in the stomach or in the intestines. A lesion was found and removed as part of the procedure.

    At that point, the consultant decided to refer me to the oncology department at the CHU Estaing hospital in Clermont-Ferrand, France (Pole Digestif Hépatobiliaire). There I met a Professor Pezet and on inspection of the scan he suggested I had a condition called pseudomyxoma peritonei (PMP).  He explained that it was a type of cancer but to be sure he would do a biopsy.

    The biopsy was organised and it was to be carried out laparoscopically.  I was in hospital for 4 hours and 4 insertions were made. The operation lasted 40 minutes.  I was discharged the same day with a prescription for pain killers which came in useful since I was off work for 4 days because of the pain after the operation.  A further appointment was organised  to discuss the results and it was confirmed I had PMP. That was for April 15th, 2013.

    Mucin had been found around the spleen, the liver and as far down at the Douglas cavity.  A series of nodules had been found attached to the intestines and it was explained to me that part of these would have to be removed.  The Professor explained that he could not confirm the severity of the problem until I was opened up but did tell me that the worst scenario would be two operations:

    • The removal of the mucin, body parts and perhaps part of the colon/intestines.
      This could leave me with a colostomy for 2 months at which stage the procedure could be reversed. In addition, I would be given chemotherapy called heated intra-peritoneal chemotherapy (HIPEC) at the same time as the operation in order to “burn” any remaining cancerous cells. It was explained that this was done for approximately 90 minutes.
    • The reversal procedure to reconnect the intestines

    I was told it would take me four months to recuperate.  All in all it took eight months to diagnose but once I sJohn shares his story with Pseudomyxoma Survivoraw a cancer specialist in February 2013 the diagnosis had been immediate, baring confirmation.  The official date of confirmation was the 26/03/2013 when the report was written and I was told the 15/04/2013. I was 59 years old at time of confirmation.

    - John

    To read more survivor stories like John's, please visit our Survivors' Stories page.

  2. Jenesa's Journey

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    Our blog today comes from Jenesa.  She shares the start of her journey with us.

    Jenesa shares her journey with Pseudomyxoma SurvivorThe most common question I get asked is “How did you know something was wrong?”. So, here’s the story.

    When I was pregnant with my son, I began having excruciating pain in my lower right abdomen.  It was May of 2010 and I was about 21 weeks along.  The first time it happened it was in the middle of the night and it lasted about 30-45 minutes.  The pain continued to occur intermittently throughout my pregnancy.  It would always only last about 30 minutes and was assumed to be pregnancy related pain. On a scale of 1-10 it was a 9.9999999.

    Jenesa shares her journey with Pseudomyxoma Survivor

    After I gave birth, the pain continued to come intermittently.  It was always in the same spot and it was very, very painful.

    I had an exam and a pelvic ultrasound in April of 2011.  Everything, including blood work, was normal.  I also scheduled a physical around the same time and was told I was healthy and it was probably muscle cramps.  I was put on vitamin B-12 injections and continued to put up with these monthly, painful episodes.  At my next annual GYN visit, I mentioned that something wasn’t right because the pain was still going on and always in the same spot.

    She checked me out again and again nothing seemed wrong.  She referred me to a Gastroenterologist.  Upon meeting with him in May 2012, I was told that it was either gas, IBS or maybe even a UTI.

    I point blank asked if it could be my appendix and was told it was not. As the summer went on, the pain seemed to be occurring more frequently.  I went back to the GI Doctor and my GYN in September 2012. I was scheduled for a hysterosalpingogram (HSG)¹ and a colonoscopy².  The HSG revealed that my right fallopian tube was completely closed.  This was alarming because I have had two children and I know it was open in July of 2009 because I had an HSG after an ectopic pregnancy.  The very next day I had the colonoscopy and it was completely normal.

    After talking more with my GYN, we decided it was time to do an exploratory laparoscopy.  On November 13, 2012 I had the surgery and also had an unscheduled appendectomy.  I had NO idea that something was wrong until I was told on November 19, 2012.

    Moral of the story….

    Jenesa shares her journey with Pseudomyxoma SurvivorIf you are experiencing pain, in the exact same spot…. IT IS NOT NORMAL.

    If you feel like something is wrong…… GET IT CHECKED OUT.

    And finally, make sure you trust your doctors.

    - Jenesa

    To read more stories like Jenesa's, please visit our Survivors' Stories page.  If you would like to read more of Jenesa's journey, go to her blog³.





  3. Just two small grapes

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    Karen shares her story of diagnosis with Pseudomyxoma SurvivorKaren from our Support Group shares her diagnosis story:

    Karen shares her story of diagnosis with Pseudomyxoma SurvivorMy regular walking route takes me on a trail where a grapevine has run wild, entangling itself in a tree. All summer long, I watch and wait for the grapes to ripen and turn purple. One summer, I sampled a couple of grapes, decided they were ripe, plucked a bunch and shoved it in my pocket to eat later. I never got to enjoy them, though, since I ended up having an emergency appendectomy that day. I remember it because nearly every medical person I saw asked the same question:

    "Have you had anything to eat today?"

    And my answer was always the same: "Just two small grapes".

    It was, of course, the surgery that led to my appendix cancer diagnosis. Well, the grapes were ripe last summer, as you can see from this picture. Karen shares her story of diagnosis with Pseudomyxoma SurvivorIt was my third harvest since the cancer diagnosis and I am looking forward to my fourth. I've just been to check on them today.  I swear those grapes get sweeter every year.

  4. Iain shares his story

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    Today, Iain, from our Support Group, shares his story:

    Pseudomyxoma Survivor Iain shares his storyFor well over a year I noticed my belly steadily getting bigger though I didn't seem to be eating any more than normal. I of course tried dieting a few times but when I didn't lose weight I gave up pretty quickly.

    At work I used to eat at my desk and started noticing when I brushed down the crumbs (mucky pup!), I felt a pain right down the surface of my chest but again didn't think it was more than just getting fat.  But around October 2012, this pain in my chest began bothering me all the time and found it very difficult to tie my shoe laces so only then did I go to the Doctors.

    My Doctor thought I might have a hernia and sent me to Ninewells Hospital in Dundee for an Ultrascan.  I got this appointment within a week and was seen first by a student who could not explain what she saw so called the nurse who also had a look.  She also couldn't explain what she was seeing so then called a doctor who explained that there was something there obscuring the view but again he had never seen this before and recommended my own GP send me for a CT scan which he did.

    I had the CT scan early December and waited 2 weeks for the results. I was surprised when Mr Polignano at Ninewells Hospital wanted to see me the following week to discus the results but still not fearing anything serious was wrong I went on my own to be told I had this rare cancer PMP which needed the huge operation you all know about.

    My operation lasted 12 hours followed by the Chemo Pack for another 2 hours and eventually got to Intensive Care after midnigh.  I only spent one day in Intensive care and was taken to the High Dependency Unit for a further 5 days. During this time I have to admit I had short periods of depression and wanted to die as I felt so bad but luckily these feelings didn't last long as the staff were marvellous and made me as comfortable as I could possibly get.

    I was then transferred to a private room on a ward where i stayed for a further 2 weeks.  I was given a pass to go home for a long weekend but was let back home as they could see I was eating much better at home and getting much more exercise that I was on the ward.
    So I was in hospital for just over 3 weeks.

    When I was initially told I don't think I really took it in; I had a wee cry in the car and went back to work. It was difficult telling others as my mother, partner, friends and family, seemed to take it quite bad.  Apart from one day, 2 days after I was told, I've never really got upset whilst everyone around me acted like they were going to lose me.  I did get upset when my original operation was cancelled as I lay on the bed sedated waiting for the operation to begin, and then to receive a letter saying I had to wait a month until the new date. I did get chest pains which my Doctor said was acid reflux which I am prone too but I think it was also anxiety.  I do get very emotional about anything and should really stop watching programmes like 'NHS In A Day' as I always end up in tears. This emotion is not in anyway sympathy for my own condition as I have always accepted I have no control over it and want to get on with a normal life.

    I feel quite good at the moment but want to push on the recovery so I can get back to work. I'm an impatient patient!!  My stoma is soon to be reversed and I can't wait for that.  I worry about catching any colds or worse off people in supermarkets etc. but will not become a hermit.

    My advice to tohers is to stay positive whilst recovering as it does help. As one doctor doing his daily rounds told me,

    " We can help you overcome any physical problems but It's up to you to keep your mind positive." and he was right.

    To read more stories like Iain's, please visit our Survivors' Stories page.