At 38 years old you don’t really expect to hear “You have bowel cancer” let alone hear it twice and lose your Sister-in-law to the same disease.
I was first diagnosed with rectal cancer in November 2012, about 16 months after my sister-in-law had been diagnosed with Stage 4 bowel cancer. Her diagnosis is what ultimately led me to speak to my doctor. I had continuous episodes of bleeding and thankfully my doctor referred me for a colonoscopy. They found a 1.8cm polyp which was removed and later tested positive for cancer.
Unfortunately, the cancer was present down to the end where it was snared and there was uncertainty as to whether all the cancer had been removed.
I was only 29 at the time and my husband and I had been trying for a baby. We found out I was pregnant 3 days after I received my diagnosis. Additional biopsies were taken around where the polyp was removed, and they all came back clear from cancer. Due to the pregnancy, we decided not to pursue any additional treatment, and this was also the general opinion of my surgeon.
Sadly, my sister-in-law passed away 2 days before Christmas 2012 due to her cancer – she was 32 years old.
A few weeks later after a routine ultrasound, we found out our baby had no heartbeat. It was a really difficult time.
After this, we discussed my cancer again and decided we wanted to look more into other treatment options.
This led me to get a second opinion from another surgeon. He was also unsure what the best course of action would be as a full resection seemed too invasive but doing nothing was also risky. He suggested Transanal Endoscopic Microsurgery (TEMS) This would give us a good sample of tissue to test but would not be as invasive as a full resection.
In May 2013 I had the procedure. A 4cm section on my rectum was removed and there were no signs of malignancy found!
We got pregnant again and in February 2014, we welcomed our little boy into the world.
For the next few years I had annual scopes and scans - After 5 years I was declared cancer free!
Fast-forward to 2019 and I was having a few symptoms of bloating and pain. I had a scope in August 2019 which came back clear. My GP then referred me for an ultrasound of my uterus and I was diagnosed with adenomyosis, explaining the pain and bloating I was having.
In December 2020 I started getting some back pain around my right flank. And then I had 2 episodes of blood in my stool. I called my surgeons office and he immediately booked me in for a colonoscopy. The blood continued and I had a horrible feeling of what it was.
On the 15th December, I woke from my colonoscopy and everything seemed normal. Then one of the surgical assistants came past and asked the recovery nurse to arrange some blood tests for me. I broke down straight away, I knew they had found something.
My surgeon came past not long after. They had indeed found a nasty looking lesion right next to my original resection site. There was nothing there 15 months ago. I was immediately sent for a CT scan to check for spread and then booked in for a staging MRI the next day.
I was given a stage 3 diagnosis. This meant chemo and radiation. My radiation-oncologist requested a PET scan. I was also booked in to meet my oncologist and catch up with my surgeon the following Monday.
Unfortunately, the PET scan showed that my cancer had spread to my right adrenal gland, re-staging me to Stage 4. Thankfully my medical team was very confident that I could still beat this and get into remission as my cancer had no mutations and had only spread to one place.
In January 2021, I had surgery to remove the adrenal gland and tumour. After I recovered, I started what would be 12 rounds of FOLFOX. Due to the cancer having already spread, my oncologist wanted to do some systemic chemo before the radiation.
I had 3 rounds of FOLFOX, followed straight away by 6 weeks of chemo/radiation, then another 3 rounds of FOLFOX. My immune system got so low that I ended up with shingles and had to go on preventative medication for the rest of my treatment.
I had an Ultra-Low Anterior Resection with a temporary loop ileostomy and my ovaries removed in June 2021. I recovered really well from the initial surgery however, I ended up back in hospital twice in the weeks that followed due to a leak from my new join. Various drains were used to try and relieve the pressure and pain.
This was probably the hardest part of my treatment. All of this was happening during COVID so I had no visitors most of the time.
The good news in all this was that my tumour had been almost totally destroyed by the chemo and radiation!
After I finally recovered from surgery, I started the last 6 rounds of my FOLFOX treatment. The last 3 were really tough as I kept getting dehydrated due to my ileostomy. I had the last 2 treatments as an inpatient so I could be hooked up to fluids.
In November, I had my PET Scan – my awesome oncologist texted me the results about 4 hours later – “You’re in complete and total remission kiddo!”
Since then, I have had my ileostomy reversed and am starting to get back into life. It’s been a tough 12 months, but I’m so grateful to my medical team for all their care and support. And of course, my family, friends and workmates.
I really hope that my story makes someone second think their symptoms and I hope that we can generate more discussion around bowel cancer not being an old man disease anymore. I know too many people now through my experiences that have been diagnosed at an early age and it makes me so frustrated every time someone tells me I’m too young to have bowel cancer.
Please, always be an advocate for your own health and seek a second opinion if you feel uneasy.