Nearing finished of 1st chemotherapy cycle

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Hi everyone,

I’m Jonny and I was diagnosed with a non-seminomatous Germ Cell tumour back at the end of January. It’s always helpful to share my story in case it helps others. So here it goes:

In early November I found a lump on my right testicle. A few days later I telephoned my GP and I was on the 2 week referral for an ultrasound. Following my ultrasound, I was referred to Urology under the same 2 week rule. In this appointment with Urology, I was examined and shown my ultrasound which displayed a black shadow on my right testicle. At this point I was diagnosed with a tumour and sent for blood tests and a CT scan

My bloods showed elevated Tumour Markers (betaHCG and AFP) with a staging CT scan that was reported All Clear.

I was then booked in for a radical orchidectomy. I was expecting most of this news so I was nervous but not too worried. I knew caught it early.

I had my surgery and a month afterwards I was referred to Oncology to discuss pathology findings from my removed tumour. This was when I was diagnosed with testicular cancer. However, I whilst I was expecting to be told this was Stage 1, it turned out my tumour markers post-surgery were higher than before. Therefore I needed another urgent CT scan, which showed some lymphoid adenopathy, meaning my cancer had spread.

This was the most gutting news, because I so believed everything was removed following the surgery for a whole month. However, I have nearly finished my 1st cycle of BEP chemotherapy, and I nervously wait to hear what my tumour markers are now.

I am thankful for the chemotherapy as I know this is a more systemic form of treatment (the surgery only acts on one area, whilst chemotherapy drugs act throughout the body as they are intravenous). I just hope this is enough to cure me.

I have very few side effects from the chemotherapy so far, though this whole experience has made me very anxious and my pulse tends to be a little raised most of the time (around 90bpm).

If anybody has anything to help support me, in terms of wisdom or whatever, then that would be very appreciated.

Bless you all,

Jonny x

Topcat23 2 months ago

Hi Jonny

Well done for documenting your treatment journey, it is very likely someone will read it in the future and gain some comfort from it. I certainly did with other postings when I was diagnosed last year and found the forum myself.

I took “comfort” from the chemo, as you say it gets everywhere. It’s good to hear you are feeling ok so far with your treatment , fingers crossed you stay the same throughout. I had one cycle at the back end of last year and it knocked me about somewhat but I am pretty old for TC in my mid 50’s.

stay strong..

Jonny98 2 months ago in reply to Topcat23

Thanks for your kind words buddy

I’m pleased to hear you were able to get through your cycle. I hope things are positive for you now.
I finished my first cycle today, so I’m 1/3 of the way through my treatment plan

Cham00 1 month ago

Hi Johnny, I hope you’re doing well or as well as can be given the circumstances. If you down mind me asking, what did the link feel like? Size and where about? I’ve discovered a tiny half grain of rice on my right testicle near the epidermis and I’ve been told it’s likely nothing but they’ll send me for a scan but not urgently because they aren’t concerned. I’m pretty anxious in the mean time as I’m sure you was.

Jonny98 1 month ago in reply to Cham00

Hi buddy,

I’m doing OK thanks - I’m nearly 2/3 of the way through my treatment, and I’ve had the positive news that my blood tests have shown my tumour markers have fallen drastically from over 4000, down to 40 (a normal value is 2 or below). I cannot wait to finish this treatment and hopefully be told there is no sign of cancer after my follow up scan.

To answer your question about my original tumour, it felt like a palpable lump at the middle of the testicle. Days before finding the lump, my testicle had gone into the inguinal canal (like testicles often do when the scrotum shrivels or if it’s cold) and felt painful. As I went through my referrals, I could tell it had grown a little. By the time I had my pathology report back, it was 3cm.

Remember that testicles aren’t perfect circles, they are more oval. On the end there’s the epididymal head which is often confused as a lump.

Lumps can sometimes be other things like fluid build-up that resolve over time, and therefore aren’t malignant.

I hope this is in some way helpful to you. Good luck with your scan, it’s a completely painless procedure and it’s over within 5 minutes or so.

Cham00 1 month ago in reply to Jonny98

Delighted you’re doing so well.

yeah I felt like I’d twisted it the day before and they checked in the bath and discovered what feels like a sesame seed, right up by the epidermis. If I’m move my ball around, it’s can sometimes vanish in to the veins/cords. The when I adjust it, it feels like it’s on the side of the testicle. Its tiny bit of never felt it before. From pictures I’ve seen of the anatomy, it looks exactly how an Appendix Testis looks. Anyways, I’ll just have to wait for the scan but that could be months as they’re aren’t making it urgent. Thank you for the reply and I’m really glad you’re on the mend

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