My original symptom was an ‘irritated‘ bladder — it is difficult to describe but the closest I can come up with it that it felt like it was vibrating all the time. In March 2010, after several months of bladder discomfort and many trips to my GP, I was referred to the genito-urinary clinic at my local University hospital with suspected bladder prolapse.
That day changed our family’s life.
Angela
The doctor did a preliminary external examination and immediately sent me for an ultrasound. I sat in the waiting area with the expectant mums not really knowing what was going on (have you noticed how hospitals just move you from one waiting area to another in a vain attempt to hide just how many other people are waiting as well?). My GP had told me I would probably need a small operation to repair my bladder, that was all.
The sonographer called me in and carried out the ultrasound — external and internal — and looked very grave. I just assumed it was her inscrutable face; you know the one, where the technicians carrying out these assessments just have this face that doesn’t tell you anything at all, be it good or bad. She asked me to take a seat back in the waiting area.
Then I saw the doctor rushing past — I knew straight away from the look on her face that it wasn’t going to be good news. I don’t know how I knew, I mean she didn’t even look my way and she could have been dealing with another patient but I knew. She came back to speak to me and said that there was a large mass on my ovary — I can’t remember now whether she said ovary or ovaries. She was referring me to another consultant and luckily his clinic was on now and she had got me an appointment in it. I thought to myself how lucky that was as it would save me another trip to the hospital. I never once thought it was because she wanted me seen urgently, despite what I had thought earlier when I saw her pass me in the waiting area.
I waited and I waited in the next waiting room until it became empty of all but me, the very hassled looking receptionists and an elderly lady waiting for her transport home. A nurse called me through to the consultant and she stayed in the room. That’s when I started to become worried — especially as her name badge had ‘Macmillan Nurse’ under her name. Macmillan Nurses give advice and support to people with cancer … what was she doing here? Oh wait, the consultant is a gynae-oncology surgeon.
That was probably the point that my hearing started to go. I mean, I could hear the words but they were closing in on me and just sort of buzzing, if you know what I mean, like a wall of sound … ovaries … very large mass … cancer … surgery … waiting list … hopefully a cancellation … definitely within 4 weeks in keeping with the current guidelines … go for a blood test now so it’s all done …
It was a lot to take in, as with all bad news, I’ve blocked a lot of it out now. I remember that the rather overweight consultant with a jovial bearing looked grave. Why does everybody look grave? Were they all imagining me in mine? That is my overwhelming memory of that day —- I thought everyone was looking at me like I was a ghost, like I was already dead…
-Angela
Angela
I was diagnosed with ovarian cancer that day went on to have a full hysterectomy. The pathology from that changed my diagnosis to PMP and I was referred to the Basingstoke and North Hampshire hospital where I had cytoreductive surgery and heated intraperitoneal chemotherapy (CRS/HIPEC) in June 2011. I am a trustee of Pseudomyxoma Survivor.
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Just when your life is going well, things are sent to mix it all up
Ruth was ignored by her GP until she asked to be referred to a gynaecologist.
I was shocked by my pseudomyxoma peritonei diagnosis
Being diagnosed with pseudomyxoma peritonei (or PMP) came as a huge shock. It was discovered accidentally as my usual yearly bloods showed abnormalities.
Why you should see a PMP specialist
I can’t say it enough… are you dealing with a PMP specialist? If not, I would say you must.
They are the ones that have seen this stuff and the weird things it does. They can give better ideas as to what to do.
In my case, waiting seemed the best option at the time but with the specialist’s input, I chose to go ahead and now, even with the debt, the new body norms and everything, I am sooooo glad I followed his advice! He would have told me to watch and wait if in his experience there was a low risk. And I would have done it.
such a courageous lady angela, and so good of you to help others by sharing your experience of when you very first got diagnosed i bet there are a lot of people going through that, who can identify with those feelings, and others about to have the grave face expression. keep up all your hard work helping others
Thanks for sharing this Angela. As one of your friends, I remember feeling so overwhelmed by all your news but of course couldn’t begin to imagine what you yourself were going through! And of course in those days there wasn’t such a wonderful website to help us understand all the medical stuff! Whenever I hear the word “survivor” I think of you, an inspiration to so many! Xx
On cancerconnection.ca I found someone whose pmp tumour was described as gelatinous which was the closest description I have seen to what I have. That story led me here where I find your story which other than the diagnosis is extremely similar to mine.
In my case the diagnosis is FATWO Female Adenaxal Tumour of Wolfian Origin. There were many tumours the largest of which could not be removed because it is entwined with my bowels. They drained it on Jan 29 when they removed the others and it has already refilled.
Only 80 cases or so of FATWO have been reported world wide.
I would love to connect with someone who is also experiencing this type of tumour for support with symptom management and just generally to feel less alone.
Dear Angela,
I loved that you have created this support website for people living with a diagnosis. As a the spouse losing my partner I appreciate how important information is to help with accepting what each individual experience at the time. I personally support women when illness or other triggers create life changes as a form of spiritual crises. Here http:// http://www.adele-green.com/ how-to-live-after-a-cancer-diagnosis-andri-vermaak/. I share on my chat show the story in the words of my client.
Kind regards
Thank you, Adele, the website and the rest of the charity is a team effort by the trustees and our other volunteers. It is very encouraging for us to receive such a positive comment about what we are doing. We also like to share stories to raise awareness too.
Best wishes
Angela
So glad to find this site. I had appendectomy 5 weeks ago with diagnosis of low grade appendiceal mucocele neoplasm. I have to be watched 5 years because if it returns it would return to entire abdominal cavity. im so anxious with no one to talk to that understands this. I’m just now learning a little. I’m having same pain in appendix area as I was before surgery. My Dr is dismissing it and I’m not sure if it’s normal or not? I need someone to talk to so badly. thank you
Sherrie, I hope that we have now arranged someone you can talk with. It’s only natural that you should feel this way.
I had a 28 cm tumour remove from my appendix 4 weeks ago. I am having a having a colonoscopy on Wednesday. I am still very confused. Your site is amazing. Thank you
I’m very sorry to read of your news, Una. I hope you’ve been referred to an appendix cancer specialist. Very glad you’ve found the website usedul.