Testicular cancer

Hi Chappell and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Hi there. I am sorry sorry that your son and your family has this situation.  We are 4 weeks ahead of you, so I hope I can offer some comfort. Mid April our son went to the urologist regarding a lump. We didn't realise that back end of last year, he had had the odd symtom that could easily be put down to anything but cancer as he had no lump. By the time the lump arrived early April, it was 2.5 by 5 cms. He then had surgery 2 weeks later. He was supposed to have a CT scan of his chest, abdomen and pelvis pre-surgery but this was not communicated to him. The surgery was straight forward and he had very little pain, only one codeine and then paracetamol a few times a day for the first few days. He said it was more discomfort than pain. I also got him laxatives and prunes as had read constipation could be unpleasant.  So no problems there either. A few days later he had a CT scan but only of his pelvis. Appointments came via text or reception staff phoning, so we didn't have an opportunity to ask questions. I believe the biopsies can take 11 to 12 days to be dealt with. Our son started phoning oncology for results as he wasn't due his what we thought to be his informative appointment until mid June, we simply couldn't wait that long for results. He had blood tests prior to surgery and a week after, these were and are in normal range. He now has a urologist appointment the first week of June, which probably will give him the results( which we have in brief). He has been very lucky that it had not spread to his Lymph glands or metastased and he had seminoma. He will have one round of carbo chemo and clearly be monitored for 5 years. The lack of the full CT scan prior to surgery, gave us a lot of stress, particularly as it was a more limited after. They clearly, professionally felt this was sufficient.  We are now 3 weeks post surgery and he is returning to work on Tuesday, he was signed off for another week. Speaking to our son, he said that nothing really feels or looks any different and he had 2 lots of sperm frozen as a precaution. It was a horrendous shock for us all and an innocence has gone from our lives but we pulled together and thankfully our NHS have got us this far and we are blessed for this outcome. I wish you much love. Your a mum and your strenghth will really help your son. Pippa P.

Hi Chappell I am so sorry to hear about your son. My name is Sean, I’m 35 and last year was diagnosed with testicular cancer. I am thankfully in remission as of October, and wrote a blog externally (I am brand new to this McMillan platform) about my experience with the hope that it might help others going through something similar.

https://sdporta.wixsite.com/limeade

If it’s helpful, I am happy to connect with you or your son via whatever medium makes sense. 

It is an incredibly daunting diagnosis to receive, but I hope the doctors have also explained how treatable it is as well. You and your son have got this! And if you need anyone to talk to, please reach out as mentioned. 

- Sean  

Hi Sean,  I found the blog really helpful. Our son in a couple of weeks is due 1 round of carboplaitin.  I know we are really  lucky, but will be relieved when he has got through the kidney tests( don't expect issues), chemo, then the low immune system time has passed. As you know, all the dates are a period of waiting and limbo. I guess everyone must have thoughts about imminent tests during surveillance and waiting the results but hopefully with time it becomes more of a distant shadow. Have found this website a lifeline. PippaP

Hey Pippa,

Sorry to hear about your son and the worry that must be bringing you. My name is Huw and I had my testicular cancer diagnosis around 5 years ago now - I’ve been meaning to get back on these forums for a while as I didn’t know where to turn during those early days and found the community here so caring and supportive so I really wanted to make sure I could give back in any way I can. I read an awful lot on here and it really helped me feel less isolated and less scared about the whole thing so I’d definitely recommend your son finding his way here just to read about other people’s experiences and I’m sure for yourself too.

Some of the things I worried about, (aside from the scariness of the word cancer) were what would it all feel like after the operation and would things all still work down there and how would I feel in my relationship etc. The operation was incredibly efficient and while it did take a while to get comfortable moving properly again I was back to work in a couple of weeks and on the road to healing up. The wound felt huge to me at the time and I was scared it would leave a massive scar but happy to report I can barely see it these days. Also I was nervous about things all working as they used to, but again happy to report that beside some areas of numbness around the scar, that’s all good too. Even though I have reduced testosterone levels, I’m still enjoying an active sex life which was definitely a relief. I was also curious how I would feel having only 1 testicle remaining and would I be really self conscious or anything but again this is something I’ve totally gotten used to now and don’t really think anything of any more. 

I guess another thing that springs to mind is to remember everyone deals with things in their own way. My approach was slightly switched off emotion and just looking at it like a broken piece of equipment that needed fixing and the experts were called in to fix it, that really worked for me as it took away a lot of the scary parts. My Dad was definitely feeling the more emotional aspects of it all but we both respected each others ways of dealing with the situation and tried to support each other in the way each of us needed it. Not always easy I know but again just wanted to mention as I know I was thinking I wasn’t really sure how to feel about any of this or how to communicate my feelings to people

Not sure if any of this is any help to anyone at all but I know this is the stuff I wanted to read when I was feeling down or worried about myself so wanted to make sure I replied here

sending love and support and here if your son needs anyone to talk to directly

Huw

I think it is really helpful you sending in your post. I think the more people communicate , the better. Before I joined this, I knew everything my son had been told and all the googled NHS stuff but these posts are personal and to a degree can offer families a hint of what to expect. For us everything was an unknown and seemed timeless. Looking back, things moved swiftly, a lot of which were two week wait times. From start (first doctors visit to 1 only chemo was about 6 weeks) and chemo passed very easily physically for our son. Of course it will all vary but when you have never known anyone in this situation,  your own mind can run wild. Now is the emotional aftermath, our son is strong and has good support, as do we. Well done your are doing well. Pippa