Karen
Karen's Story
My husband David’s story began with a tick on his neck. He thought he had another one, but I found a tiny mole instead. I suggested he get it looked at. I thought it looked suspicious. After a couple of months, when he was at the GP for a couple of other things, he asked them about the mole. As I thought it looked different, the GP decided to biopsy it, even though she didn’t think it looked ‘bad’.
The next morning, we got a phone call – it was melanoma.
What were the steps once the melanoma was discovered?
David had the melanoma removed two weeks later by a plastic surgeon who suggested a PET scan. The PET scan spotted nodes on his lung so they wanted them followed up in six months. The plastic surgeon continued to just see him every six weeks and to feel his neck nodes. But that’s all! No one suggested a skin check.
I ended up asking for a skin check and my husband was finally able to visit a dermatologist who specialises in melanoma.
After about seven months we had a repeat CT scan of David’s lung which showed a new 8mm node. We were advised they would probably just continue to observe the node, or he could have a procedure to try to biopsy it. I said yes to that! The other nodes hadn’t changed in size.
I work as an ICU nurse for a living, so I asked a couple of doctors at work about David. I was given some scary news! One said that if it’s melanoma then that’s it for him. The other asked me who our oncologist was. I got such a shock as no one had ever mentioned seeing an oncologist!
I had done lots of research so knew quite a bit about melanoma by this stage and was quite nervous.
I contacted the GP and asked to be referred to an oncologist. In the meantime, David had the bronchoscope but unfortunately due to the position of the node they couldn’t get a biopsy. We saw the oncologist. I suggested a repeat PET scan, which he agreed to. By this stage it was now 10 months since having his stage I melanoma removed!
When we got the results, the news was bad. David had metastases in his lung and liver. I was devastated. As I said I’d done my research, and this was just before immunotherapy had become available. It was decided he would have a liver resection. He had this in October. That was so tough. I decided to take time off work as working as an ICU nurse and dealing with this was not easy. I knew that chances of survival past 12 months were not good.
What treatment did David receive?
The plan was a king resection in January. In January another PET scan revealed that unfortunately the melanoma had spread further around his lungs, so lung resection was no longer an option. The oncologist decided to ask for compassionate use of the immunotherapy drug Yervoy. It had just come into use in Australia, luckily for us.
David had four treatments, three weeks apart. He had gone back to work as we have our own cabinetmaking business with our son as his offsider. David would have his treatment and then go to work the next day. The only side effects were a rash and a slight cough. He had a fabulous result. This lasted four years and then in January 2019 it was back.
This time they decided to treat him with Yervoy and Opdivo. It worked well, but his body responded strongly. He has had quite a few side effects. It has destroyed his thyroid gland and pituitary. He also had colitis which caused him to have diarrhoea and then dehydration and acute kidney failure.
He ended up in hospital a few times from the treatment. He is now on thyroid replacement and also hydrocortisone for life. But we believe this is a small price to pay!
David is still going well and is now just having six-monthly CT scans for check-ups. We can’t thank our oncologist enough.
What advice would you give others?
All I can say is follow your gut. Don’t take no for an answer. Just because it’s only stage I and they say they removed it all, it may still come back. Follow up is very important.
