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Peritoneal Psammomacarcinoma

by Sarah - 09/23/2007

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I am now 34 years old.

Back in February 2006, following a laparoscopy, I was diagnosed with a peritoneal psammomacarcinoma. This was in fact a huge relief!

In December 2005, I had a routine hospital follow up (Whipple's operation in 2001 to remove a borderline cyst from the head of my pancreas) and shortly after the procedure was visited, in my hospital bed and out of the blue, by the McMillan Nurse who had come to discuss palliative chemotherapy with me. Later the same day, a consultant came to tell me that I had secondary pancreatic cancer. Words cannot describe how I felt at this point ... I didn't feel unwell, had no symptoms and life was very good. I felt I had to ask about the inevitable and was told that I had between months and years to live (privately the consultant told my parents that they should view Christmas 2005 as my last).

This was actually just the start of an incredibly difficult few weeks. I don't remember some days and the feelings I had during this time, and have to believe that my body has tried to protect me somewhat.

A week went by and the day before I was due to start my Gemcitabine chemotherapy, whilst I was Christmas shopping in a bit of a daze, the consultant rang to tell me that the hospital now believed that I had ovarian cancer instead. It was quite a surreal moment really ... standing in an underwear shop, trying to comprehend what was being said and trying to decide if this type of cancer was better news or not! Following an appointment with a new consultant, my chemotherapy appointment was finally delayed until the New Year. I tried to have as normal a Christmas as possible with my family and boyfriend, all the time feeling fine health-wise, rather a mess emotionally, but more and more convinced that the hospital had still made a mistake in my diagnosis. But also thinking that these sort of mistakes didn't happen ... not twice anyway.

I went back to work for a few days in the New Year (I was and still am the Manager of a GP surgery). On the day of my first chemotherapy appointment, I went to have my haircut but actually cried off my plan of having my shoulder length hair cropped short. Just as I was meeting my Mum at the station, I had a phone call to ask whether or not I was coming to my appointment or not! The appointment time I had received by letter proved to be wrong by some 2 hours. Already very anxious about the whole thing, I now feared I had missed the opportunity to start my treatment and did not know what impact this could have on my prognosis.

The whole thing then just went from bad to worse. On arrival at the hospital, my consultant was not there, and the locum doctor could not find my notes to know what treatment I was to receive, but telling me that the department would close before my treatment was completed anyway. My mum left to ring my Dad (also a doctor) and I remember sitting on the bed waiting, not knowing what to do.

In the end, we walked out. I don't quite know how we did this as every intelligent part of my being was saying that I shouldn't go against what the consultants were telling me ... they're the experts and this is the job they do everyday.

In the end I went to get a second opinion at The Royal Marsden Hospital. Following numerous more appointments and investigations I was finally diagnosed with a Primary Peritoneal Psammomacarcinoma. A relief as my prognosis is now infinitely better, but it comes with other problems. At present my consultants do not want to treat me. This is quite a hard concept to come to terms with, as it seems as though we've always been told that speed of treatment is crucial with cancer.

My cancer is so rare that there appear to be less than 20 recorded diagnoses in the world, ever. Of these, the majority are ovarian psammomacarcinoma, with a peritoneal origin being even rarer. The case studies I have read are all of women in their 50s-60s, whose cancer was discovered following presentation of symptoms and whose treatment involved maximum debulking and chemotherapy.

I now don't know how to feel. A lot of the time lucky and at other times angry/frustrated/upset because no-one can tell me what to expect both in terms of treatment / prognosis and the impact this could have on my life. My partner and I would love to have children ... but no-one can tell me if this is dangerous. Can I expect to see my 36th birthday, 40th birthday, 50th birthday, to see grandchildren? How do I deal with the uncertainty?

I decided that the only thing I could do was live my life as normally as possible. To make plans (my partner and I have bought a house), to continue working (started a new job 10 months ago) and to try to forget about it (manageable most of the time as long as I'm busy ... more difficult in the run-up to my 3 monthly hospital check-ups).

Now that 18 months has gone by, it does feel as though a lot of people seem to have forgotten what I am living with on a daily basis. The uncertainty is always present and at times feels crushing. At times, it feels as if my life is just about "waiting for chemo". I have not met anyone yet who can truly understand what I'm thinking/feeling/dealing with. People's stories are often worse than mine .... which is difficult to absorb. I get upset at times, but feel that people must see this as "going over old ground".

Any words of wisdom from all of you in the know would be gratefully received. And ... if there is someone out there with the same diagnosis who is willing to talk .....