Son aged 19 Diagnosed

HI there,

I appreciate this is a worrying time for you and your family.  The most important thing is to try and stay calm and not get overly worried about it.  To be honest, it was a little over a month from when I found the lump to surgery and it's only after removal of the testicle they will classify and grade the tumour.  

Honestly, I went through a lot of the same feelings and emotions but realised you can only deal with the issues once all the information from the bloods, scans and histology are put together.  If you are really concerned about anything in particular then speak with the attached specialist nurse should there be one, I have found them to be very good and reassuring.

If there's anything else you want to know I will try my best to answer your questions.

Fuzzy wuzzy

pT1b

6cm tumour

orchidectomy on left testicle

HCG 7

Hi, my situation is very different (50 years, 2 kids) but I would make these comments-

Trust the consultant- if he was positive, then that’s a good sign.

The ultrasound itself reveals a lot (for example, my ultrasound showed I probably had a seminoma, which indeed was verified after my surgery and pathology report). The consultant would have had a good gauge of the size of the tumour (which can indicate spread and severity) and (as in my case) may even have established the type of tumour.

There are 2 types of TC- seminoma and non-seminoma; generally, with seminoma, it is slower and less aggressive, and can be treated in early stages with Carboplatin chemotherapy which is less harsh than BEP. However, even with non-seminoma, it is very treatable.

There is no clear indication as to why some people have only seminoma and others have non-seminoma.

Similarly, the blood test results would have helped to provide other evidence (although it is not always conclusive- for instance, my blood results were fine).

The scheduled CT scan will provide a lot more evidence. You should know more after this scan.

Given your son’s age, I would follow the consultant’s advice. There are some posts in this forum of people who have had children after treatment. However, the general recommendation for younger men would be to use a sperm bank prior to the operation.

The operation itself is straightforward, and chemotherapy is manageable.

In any event, while I completely understand your worry and concern, please know that TC is very treatable.

best, Kevin

Hello, 

I'm so sorry to hear about your son. My partner age 22 was diagnosed in October, he was in the exact same position. He was diagnosed early October and had to wait for the sperm bank to get the operation. His sperms banking was every 2 weeks and there was strict rules for it so unsure if this is why its spaced so far out. My partner after the operation got the CT scan which showed it had spread to 3 lympnodes in the stomach, devastated we all were however he has just had his last scan, finished chemo which went well and has his results in a few weeks.

Regarding the ultra sound/blood tests they didn't play a part in journey when was first diagnosed, the blood test only showed markers which he had none but other than that nothing was said. 

Message me if you have any further questions, I wish the best for your son! There is hope!

Thank you so much for your reply. I really hope your partner gets good news regarding his scans - I find the waiting so hard xx
My son has been “pencilled” in for the op on 4th March but as yet not receive any appointments from the sperm bank (he did have the blood tests associated with this earlier this week). Am worried after reading your message that the surgery is now going to be delayed. Can I ask you how many appointments did your partner have with the sperm bank? 

Hi, 
I had TC in my mid 20s (about 10 years ago) and from what you’ve described it’s still early stages so I agree with Kevin’s comment in that you should trust your sons consultant. They’ll know what they’re doing and will have most definitely treated lots of similar cases to your sons previously.

Regarding the sperm bank, I strongly suggest your son uses it if he is able before he starts treatment. My own case was caught late and so I didn’t have time to go before my chemotherapy was started. It means I’ll never have children of my own and that still hurts to this day. I wouldn’t want anyone else to feel that if it can be avoided.

All the best to your son and your selves,

Graeme.

Graeme, many thanks for you reply. My son ended up having his operation on 11 March and was able to go to the sperm bank twice beforehand. When he left hospital he was given a Discharge Advice Letter which stated that a 3.8 cm para aortic lymph node had shown up on his CT scan. We have had no further feedback from the hospital - all we know is that the MDT are due to meet this Tuesday to discuss his case. We are obviously really concerned as he had the CT scan back on 9 February - how much could the node have grown since then??

Considering he initially went to the doctors the day after finding the lump on 14 January we are still in limbo awaiting further treatment. I know that there are bound to be delays because of Covid but the timescale is deeply concerning. We know from our own research that he is now facing 3 x BEP but I’m worried it could be weeks before this treatment starts.

Hi,

 I understand your very scared right now for your son and of course Covid only makes things worse. As I’m not a medical professional I can’t give you any certainties. I can however share my experiences which might help you understand more of what your son could face but keep in mind he may not face he same as I did.

The lump I found was very big when I went to the doctor (I thought it was caused by a football related injury), I was scanned the same day and I was diagnosed pretty much straight away. At the time I’d also suffered from a very bad cough for months and hadn’t felt very well for quite a while.

After my scan I was sent home for about a week when I woke up coughing up blood. My dad drove me straight to the hospital where my chest was scanned and found I had multiple tumours in my lungs. This confirmed my cancer had spread. I was admitted straight away and also found out later it had spread to my brain.

I’m not trying to scare you with this, I’m just trying to be honest.

My advice would be to monitor your son’s health and if he has a lingering cough then report it to his GP or your hospital contact straight away. Again if he seems to be sluggish a lot and have trouble staying awake then again report it asap.

On a positive note, your son has youth on his side and I was told that TC is one of the most treatable cancers. The blood tests done on your son will show his tumour marker level so that should give the specialists a good idea on how his disease is progressing. 

One thing to keep in mind is that my case was on the worse end of the spectrum and yet I’m still here 10 years later and your son is younger than I was. So there is a lot going for your son.

I hope this helps you a bit and wish you all he best.

Graeme

• I hope your sons operation went well. We were also told the same as Graeme that TC is one of the most curable cancers. My partner also has a rare muscle and heart condition which makes him have full paralysis attacks from the head down, he was very ill last year with it and now it's clear it was the cancer, but my point is my partners health isn't the best and now he's feeling healthier than ever and cancer free. My partner went through the BEP chemo which is intense but his was 12 days in hospital 4 days each and that was him! So if he does end up getting treatment there is hope! Fingers crossed after 6 months he will be back to normal like my partner. 

If you have any questions or queries please ask, I'm always happy to help x