I was told I was too young to have cancer

Published on 19 January 2023

Holly Salmons Story

Holly, a 27-year-old mum of two, had been experiencing unbearable pain and was unable to eat, sleep, or do her everyday activities. As pain took over her entire life, she begged to be listened to by a GP, knowing something was very wrong. Almost a year later, she was finally sent for an ultrasound. 

Due to her age, her worries and symptoms were brushed aside and she was told it couldn’t be cancer; she was too young. But they were wrong. At just 26, she was diagnosed with bladder cancer. Luckily, Holly persevered and is now receiving the best care and support, but the outcome could have been very different if she hadn’t listened to her body. 

She is now determined to raise awareness and break the stereotype that only older people get bladder cancer.

Bladder cancer is a disease which can affect anyone of any age. If something in your body doesn’t feel right, it is essential that visit your GP and advocate for yourself.

How did you find out you had bladder cancer?

Going back to September 2021, I had a tough time with my eldest child starting school; I wasn’t used to being away from her for so long, so her starting school was highly stressful.

Around then, my IBS flared; it was the worst it’s ever been during the 11 years of my having it.

This continued for months, during which I tried different remedies and prescription medication from my GP. I asked for more investigations, but they kept putting it down to IBS. Looking back now, I wonder if it flared up because of the stress my body was under.

In June, the pain became unbearable.

I once again begged my GP for more tests- as I had been doing for the past year, but again I was told there were no face-to-face appointments. I wasn’t being heard and my concerns were being belittled.

The pain was taking over my whole life, and I couldn’t think of anything else- I knew something was wrong.

It all came to blows in mid-June when a GP receptionist told me that my symptoms ‘’weren’t urgent’’ and that I should wait for over a month for an appointment to discuss my issues. I begged and pleaded; I couldn’t look after myself or my kids; I hadn’t eaten or slept in weeks. I was so emotional, but still, no one listened.

Eventually, I spoke to a GP via phone call; I asked him to send me for an ultrasound scan of my bowel; I was sure something was wrong with it… Little did I know.

I arrived for my ultrasound the following weekend: the sonographer told me they don’t do ultrasounds of the bowels. But she agreed to scan my bladder, kidneys, womb, ovaries, etc. There, she found a ‘nodule’ inside my bladder, and my right kidney was enlarged.  She said she would send the findings to my GP, and they would tell me the results.

I left in tears; I knew something was wrong.

A few days later, I called the GP for my results, who told me, “It won’t be cancer” “you are too young,” but that he would be sending me to see a urologist.

Fast forward two weeks, I drove an hour to the hospital to see the urologist for what I assumed was a routine appointment; little did I know this appointment was for a cystoscopy.

I was utterly alone; after all, the GP had said it wouldn’t be cancer. I sat in the waiting room, tears in my eyes, terrified and unsure of what a cystoscopy would be.

I entered the room with the consultant and had a cystoscopy, where they found a tumour inside my bladder. I could see it on the screen in the corner of my eye; I felt sick; I couldn’t bring myself to look. I asked the consultant what it was or what it could be.

“Should I be worried?” I asked.

“It shouldn’t be there; we just need to remove it,” he said.

He wouldn’t give me a straight answer, my eyes filled with tears, and my head filled with questions; I felt like a scared child.

The nurse asked me if I would like to talk to someone else, and I said yes – I needed to know what it was.

Shortly after, a lovely nurse walked in, wearing the distinctive grey uniform and a lanyard with ‘MACMILLAN NURSE’ on it. I was shaking, terrified, yet still so confused; I was taken off to her office whilst she was telling me about treatments, types of tumours etc.; she even mentioned Chemo…

I asked her ‘’do I have cancer?”

Sitting alone in her office an hour’s drive from home, I was told I likely had bladder cancer; the tumour looked typical of bladder cancer.

I got her to call my husband to break the news and to explain everything, as I couldn’t absorb anything.  An hour later, I had just arrived home to my children, when the nurse called to say I had a date for my TURBT in a week. I had been due to fly on our first family holiday only a week later, a holiday we had in the pipeline for years- cancelled due to covid and my dad’s death in 2020. I couldn’t bear to cancel something my kids had dreamed of and were so excited about.

After my appointment, the GP who believed me, the one who finally listened to my worries, called me. He thanked me for pushing, for knowing my own body and for advocating for myself; if I hadn’t, he feared where I would be in a year or two…

I had the TURBT without any complications, I was due to come home the same day, but I was in a fair amount of pain from the catheter and was retaining urine. I went home to my family the next day, I was next due at the hospital in 4 weeks for the histology results, and I flew the following week to Majorca for our holiday; I was terrified. But we managed to have the best time possible in the circumstances.

After almost a year of fighting with my GP, suddenly I was being taken very good care of. I had been seen and operated on within two weeks!

Four weeks later, I returned for my histology, I was told it WAS cancer, and they removed the tumour. I was given a chemo wash after the surgery.  It was a stage Non-muscle invasive bladder cancer; it hadn’t gone into my muscle or spread. Luckily, it was caught in time. Although I was told, there was 60% chance of recurrence.

I was then booked in for a cystoscopy, which I had, and there were no changes or recurrence. Still, they were concerned because of my age and the high likelihood of it returning and potentially spreading, so it was agreed I would have a 4-week course of bladder chemotherapy.

I had one treatment a week; I had to hold it in my bladder for an hour before I could drive home. It was exhausting. Most weeks, it would take me two hours to go to the hospital and an hour to get home; most of my day was consumed by treatments and school runs.

After my chemotherapy, I have been given an 8-week break. After the eight weeks, I will have a cystoscopy to check for any changes, and I will restart chemo, I’ve been having Epirubicin,  in February monthly for a year.

I’ve been getting lots of side effects, extreme exhaustion, joint pain, hair thinning, headaches, flare up of reynauds issues with circulation and the interstitial cystitis from it, but it’s worth it.

What was the initial cancer diagnosis?

Non-muscle invasive bladder cancer

What happened after your diagnosis?

I had so much worry and was terrified without the necessary answers (how serious it was or what my future looked like).

I feared for my children; I watched them grieve the loss of my dad only two years ago; it was the worst experience of my life – would I have to see my kids grieve for me?

How have you found being diagnosed so young? 

I’ve found being diagnosed at 26 hard.

No one assumes a 26-year-old would have cancer, let alone cancer which is expected in the older generation, especially men and people who have smoked.

I was ignored by my GP, even after them finding the nodule in my bladder. I was still told, “it won’t be cancer,” which made me go to my appointment alone. I faced some of the worst news in my life ALONE.

The treatment I have had since, from the Urology team and the Macmillan nurses, has been invaluable.  I hope that by sharing my story, more people will advocate for themselves, get diagnosed in time and get the care they deserve!

How has life been since your diagnosis and treatment?

I’ve been struggling a lot physically since the operation. I’ve suffered from Interstitial cystitis, and with every chemo, the pain gets unbearable, but I must motivate myself to carry on; my kids need me.

For them, nothing has changed, just mummy has a poorly tummy, and her wees hurt; I must be brave and face every day for them, if not myself.

Since losing my dad, I’ve had terrible health anxiety; this has made that so much worse. I’ve been referred to Macmillan for counselling, which I am hopeful about.

What life changes have you made now that you are affected by bladder cancer?

I am trying to look after myself; it’s unknown why a young woman would get bladder cancer; I have baffled all the professionals; I do not drink or smoke or fall into any of the other ‘at-risk’ categories.

I was around smokers as a child, so maybe passive smoking was a factor.

The regular patients receiving treatment in the hospital are older men and a few older women. So, it seems I am a rare case. I am also trying to be positive; I suffer from anxiety and depression, but I try not to worry too much about little things.

After hearing I have cancer while sitting alone, there is not much I can’t face, but I’ve had to be brave!

 

Is there any advice you would give patients coping with a similar situation?

Be strong and trust the specialists. There are many others in your position; the best way to cope is to be positive and discuss any worries with loved ones.

 

What advice would you give someone who has just been diagnosed?

DON’T PANIC. Get all the facts, sit with the consultants, talk it through, and get all the information before you worry yourself sick.  Worrying won’t help or change anything. It may seem scary, but there are so many treatments and types of cancer; every individual is different.

How has Fight Bladder Cancer helped you?

Fight Bladder Cancer reminds me that I am NOT alone.

Although there may not be many people in the same boat and the same age as me, I am part of a fantastic group; none of us wants to be part of it, but we are all warriors fighting this awful disease.

We may be the fighters, or you may be fighting with someone; there are so many people on the support group supporting their loved ones, asking for help & advice, asking for the right thing to say, sharing worries and concerns, and sharing their happy results and milestones.

None of us wanted to be here, yet we find ourselves part of this amazing family, all fighting for one thing, MORE AWARENESS & SUPPORT.