I thought it was menopause but my symptoms were actually a rare cancer

I thought it was menopause but my symptoms were actually a rare cancer

My husband, Phill, noticed that my belly had a funny shape (Photo: Jan McCluskey)

I noticeD the weight crawling around my belly when i was in my early 40s.

Normally a size 14, my clothes started to get tighter around my middle. I wasn’t eating differently, but my stomach was getting bigger.

“I must be in menopause,” I thought to myself.

I spoke to a doctor who also told me that was what it was and so I attributed my other symptoms – hot sweats, dry skin, brain fog and anxiety – to the change.

Then, about a year before I turned 60, I also began to struggle with a leaky bladder. It was usually at night and when I was coughing or sneezing. Again, I thought it was another symptom of menopause.

But then, when I turned 60, in June 2020, my husband, Phill, noticed that my belly had a funny shape – heavier at the bottom, sort of pear-shaped. And even though my arms and legs were very thin, my belly was still growing.

Although I was worried, I didn’t think it was worth seeing a doctor. Which, in hindsight, was silly.

In July 2020, I had a routine blood test at my doctor’s office and the results came back telling me that my hemoglobin was low so needed to be investigated.

I received a phone call from my GP who said he wanted to see me, and the same day I had my blood tests redone.

I wasn’t too worried – until my doctor told me I had to go to Lincoln Hospital for an ultrasound in a few days. I was worried but overall relieved that they could get to the bottom of the symptoms I had been experiencing for almost 20 years.

The day after my ultrasound my GP called me at 8am to tell me there was something in my ovary and he needed to investigate the possibility of ovarian cancer. Relief turned to fear, which was compounded by the fact that I had to go to every appointment on my own due to Covid restrictions.

The wait for the results was horrible. Every day I braced myself for news that never came. I was going to oscillate between thinking, “If it was really bad, I would have heard about it by now” and “Maybe it’s so bad they need to get another opinion”.

After four weeks the results came back showing that the scan found what they thought was a mass on my ovary. Further investigations followed and I had fluid drained from the lump.

Jan was hospitalized for two weeks

I had to have a nine-hour operation to remove my spleen, gallbladder, navel and other ovaries (Picture: Jan McCluskey)

The doctor warned me it could be PMP, or Pseudomyxoma Peritonei – a rare cancer that starts to grow on the appendix – but they had only had one case in Lincoln before . It is quickly confirmed.

A lump formed in my throat when a consultant confirmed that it had already spread to my stomach.

Thankfully, he said my prognosis seemed as good as it gets, but we won’t know for sure until I have surgery to remove the cancer cells. I needed two major operations and then I would be closely watched for the next 10 years.

It took a while for the news to drop, but back home with Phill and our daughter Sarah, 29, I burst into tears. They were shocked but supported me by being positive and refusing to let me wallow – instead repeating what my doctor had said: that he thought it was treatable.

I underwent deflation surgery, which involved draining fluid out of my abdominal cavity. They told me afterwards that they had drained five liters and that I had lost two stones in the process. No wonder my stomach is so bloated.

They also removed my appendix, where the cancer had started, and my right ovary, as a large cyst was growing there.

After the operation, the doctor explained to me that I had probably had a burst appendix at some point in the past, which could have caused the cancer to spread.

I spent five days at Christie’s Hospital in Manchester before returning home to rest.

But six months later, in April, I returned to the hospital for major surgery – this time I had to have a nine-hour operation to remove my spleen, gallbladder, navel and other ovaries.

They also scraped my liver to remove unwanted cells and filled my abdominal cavity with warm chemo fluid to get rid of any remaining cancer cells. I was very scared of how the chemo would affect me because I had never heard of it before.

Jan with a coffee

I now have scans and blood tests every six months to make sure the cancer hasn’t returned (Picture: Jan McCluskey)

As I opened my eyes, groggy, after the operation, I immediately spotted the huge scar from my sternum to my public bone. I could barely bear to look at it, and when I touched it, I felt incredibly sad. With my navel removed, my belly felt like the top of a pumpkin.

I stayed in the hospital for two weeks to recover and during that time I couldn’t eat much.

Luckily, all of my procedures were successful in clearing the cancer, but I’m still on medication that I’ll probably be on for the rest of my life.

I now have scans and blood tests every six months to make sure the cancer has not returned. I am suffering from extreme fatigue but I feel stronger for what I have been through and grateful to have the support of Phill and Sarah.

I now know that I went through menopause, as my periods stopped, but I still don’t know which of the symptoms I experienced were actually caused by it and which were due to cancer.

I still can’t believe that for all these years I thought I was just having symptoms of menopause when in reality I was being attacked by an extremely rare cancer.

So now I am telling my story to raise awareness for PMP and the support I have received from Pseudomyxoma Survivor Charity. Thanks to them, I was introduced to a whole network of survivors like me.

Other symptoms of PMP include abnormality of the abdomen and peritoneum, abdominal swelling, and abdominal pain. If you have symptoms like mine, don’t ignore them and blame them on The Change!

Often women try to carry on as normal when they feel sick or feel differences in their body, especially if they are at a time in their life where they think it is menopause.

However, I am proof that no matter what you think, it is always best to get a second opinion from a medical professional.

As said to Rachel Tompkins

Do you have a story you would like to share? Contact us by emailing jess.austin@metro.co.uk.

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