Hi all,
Hope you are all well with your situations. I have been scrolling through and reading a lot recently, and I've found a lot of the posts to be a few years old etc, so i hope by posting about my situation that it does shed some light for someone else in the future who may not be signed up and are just purely reading from google searches.
I'm 37 years old, married, two young kids (3 &1)
Almost a year ago, October 2021, I went to the doctors with a suspected kidney stone, They send me to the hospital that day for a CT scan, then i was met with two consultants later on in the day to tell me that I didn't have kidney stones, but there was something there which shouldn't be there, suspected cancer and couldn't determine which type so early on without further tests, so I was told it was a pretty large tumour and it could be lung, heart, lymphoma, pancreas and possibly testicular. I was kept in overnight after being allowed home to break the news to my family and work. I received another scan the following day with the ink through my body to give a better image, the results of that were not any clearer for the team to diagnose me. I was told i have a large tumour coming off my Aorta, so I was booked in the following week for a biopsy to go through my back whilst being inside the CT scanner.
Nearly a week post the biopsy i was called by the consultant who then explained they had diagnosed me with testicular cancer, the tumour was 13x, 8x, 7cm in size, located on my aorta (main tube leading from the heart) and it was putting pressure onto my kidney. They had referred me to the Beatson centre in Glasgow to meet with the team. The meeting then discussed more what I should expect to come in the following months, side effects, issues, treatment plan. I was planned to have an intensive chemo plan (BEP), which would involve three cycles, 12 hours of chemo for 5 days per week, then two weekly injections, with a small break and then back into the ward for the chemotherapy cycle, so each cycle lasted around a month. I was told I would need surgery, but due to the size of the tumour and the fear of further spread that surgery would be delayed to the end of the treatment. I have a family so i didn't opt to preserve sperm and delay the process which i though was very very fast considering it was in the midst of Corona and the pandemic.
They kept me in following the first meeting to start me on steroids to assist my kidney and monitor my fluids ahead of chemo starting. Received baseline tests on my lungs and ultrasound on my testes. I started my Chemo after four days of steroids. I was plugged in just after dinner time and it would consist of 9/10 bags per night being pumped through me, the sleep was very broken, waking up either with the machine needing changed, or needing to pass urine due to the liquid going through me, so i was up every hour/ hour and a half throughout the nights. then unplugged at around 7am the following day just in time for the breakfast round coming around. The first cycle wasn't as back as the following two, I still had some energy although tired and could sleep easily in the ward during the day. I still had appetite due to the steroids i was on and was being as positive as I could be with the thoughts of there are other people in a much worse situation. The chemo although was planned for 12 hours would sometimes span 14/15 hours due to overlap and delays changing bags throughout the night, so i was then being plugged in later each night and then unplugged later each morning. Visiting was very restricted in the wards, so only my wife could get in once per day and for one hour. After the 5 day chemo cycle i was discharged with medication to take at home, and then i would attend clinic on Fridays for my bloods to be taken and then receive my bleomycin injections. The fatigue and tiredness begin to him me after my first round of chemo and my first injection. I could feel myself not being as strong and beginning to struggle around the house or climbing stairs, beginning to sleep a lot more and for longer. After about two weeks i could feel my hair thinning and became reluctant to give it a good wash in the shower, my beard could be scratched off with my finger nails, there was just no resistance and it wouldn't grow back once it was gone. My hair eventually started to fall out in the bed or in my hands and then I had to bite the bullet and get rid of it all, this happened around week three. I then went back in to hospital and my next two round of chemo completed which took me up to around end January time. Every round of chemo I had a different set of side effects, I nearly had every side which was on the NHS information booklet, the worst probably being the ulcers in my mouth, stopping the ability to even eat and drink! Post Chemo completion, I was then sent for a scan to review the tumour and was told it had shrunk significantly to 17mm x 12mm (size of a small salt packet) so I was very happy. I was told i would get a PET scan as where it is surgery would not be advised, and i would also then be sent for surgery once i got back on my feet with strength and ability. So a few weeks later i received my PET scan, two weeks later i then got and the results from the PET scan, which showed there was still a turnover of cells in the tumour - and that they expect this to further shrink and die off. I then received my surgery (orchiectomy) and recovered from that in around 2 weeks. I was then told that i was 'all clear' and would be sent for a scan for reassurance. A number of weeks passed, I received my CT scan and then reported back to the Beatson for the results, which i suspected would have been a 'congratulations, your done'. Unfortunately i was then told that the tumour had looked to have increased in size and they suspected it was non-seminoma/ teratoma which would be non-responsive to chemo treatment and my only option was now to receive the surgery which wasn't possible before. I met with a consultant the same day who explained that I would need to have a Retroperitoneal lymph node dissection (RPLND) surgery.
I am currently awaiting a date for surgery which has led me to this site and forums for which there is some information available. I've been back to work for around 6 weeks on a phased return to get back to normal, and now its looking like I'm going to now be off till January 2023. My head is pounding everyday with the thoughts and anxiety, I'm trying my best to be as positive as I possibly can, and keep myself as distracted as possible to keep my mind from it. Hopefully I'll be able to keep providing further updates in the future and inform others how surgery and recovery goes.
If there's anyone in a similar situation, or about to enter treatment and has questions then I don't mind getting in touch and answering any concerns. I found that in my first chemo cycle, talking to others in a similar situation really helped with the mental battle which is needed to try get you through!
