I would like to contact any other early generation ( approximately year 2000 ) Testicular Cancer Surveillance patients.

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

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Anne,

Thank you for the warm welcome to the forum. Nothing would give me more pleasure than to share my experiences  as one of the first generation of testicular cancer patients to be treated by surveillance, but I'm told I shouldn't as it undermines the public’s confidence in the British medical profession , so I wont.

But what I will do is give a few facts that are freely out there in the public domain. We had 30 chest x-rays and 6 CT scans, at the time we became ill, about 10 years into the program the number of X-rays and CT were radically reduced for the next recently diagnosed TC patients. But of course that is just coincidence i'm sure. I think the current number is a maximum of 10 chest X-rays and 3 CT scans, and most having even fewer than this, we had that in the first year alone. But again, I'm not suggesting anything.

And then in 2023 we had the TRISST trial that recommends TC surveillance patients are not exposed to a barrage of x-rays ( their words, not mine ) and MRI scanners should be used instead. All this information is freely out there. I'm not suggesting anything at all.

All I want is to contact other early TC surveillance patients that had similar treatments and I'm sure Macmillan are happy to help people like myself and many of us who's lives have been affected by cancer.

Mr Lab Rat

Morning

Not sure if it helps but I was diagnosed in 2012 with stage 1 seminoma in the right testicle. I was on a 5 year surveillance with CT scans every 6, 12 and 18 months with a chest xray thrown in every 3 months for the first year and every 4 months for the second and third year and then every 6 months for the 4th and 5th year. I was meant to have a chest xray on my last visit when they were going to sign me off but my cancer nurse said that the rules had changed and I did not need to have it if I didn't want to so I chose not to as I felt I had had more than I needed. 

The chest xrays did not bother me as much as the CT scans as pilots are exposed to more radiation every day than those having chest xrays at certain points through the year. My first CT scan was full body and the rest were just a minute long for the pelvis and stomach area. 

I think there is risks with everything we do to our body's even covid jabs flu jabs etc but the peace of mind of know it had not come back I think out weighed the worry of over exposing myself to radiation. Everything in life is always trialled to find what's best and the more they do things they discover what's best to do so back 20 years ago I am sure they were doing the right thing and as things evolve and medicines evolve they change things to reduce other risks. 

I mean asbestos was the magic mineral hundreds of years ago then discovered it killed millions and continues to kill thousands every year but they banned and stopped it once they realised just like they reduced CT scans and xrays when they were confident they did not need so many. 

All the best. 

Hi Woody1875,

Thanks for taking the time to reply to my post, it's much appreciated. Just to be clear, when you say you had CT scans every 6, 12 and 18 months you mean you had a total of 3 CT scans at these points from your start date ? And also about 14 chest xrays. If so your generation is about 10 years after me and you had about half of what we had.

I have to be careful what I write on this forum, it has to be 100% fact, not opinion or unproven theory.

You make an interesting point about pilots or passengers in high flying aircraft being exposed to the same as a chest xray. I've spent a long time reading about those medical xrays and real world comparison claims. I agree, on the face of it they make a good argument, …they had me buying it for quite some time........then you start to dig a little deeper. Airliners are made of metal, 2 mm of aluminium is enough to shield most, if not all xrays from the people inside the aircraft so I really don't understand why they try to use this as an example of xray exposure safety. I don't remember sitting in a protective metal box when I had all those medical xrays.

I too was very comforted during my surveillance program by the knowledge that if something showed up on those scans it would be detected small and dealt with. I believe in your case with a seminoma this might not have showed up with tumor blood markers. In my case it turns out the type I had does clearly show up with tumor markers so I didn't need most of those scans or xrays.

I agree with you about the trials , and constant improvement in medical knowledge, all good stuff, and for the 'greater good'. ….but what about the people that were the subjects of those trials......I guess we have served our purpose, lessons learned , mistakes made....and all that.......I know my place,  Mr Lab Rat

Yes I had 3 in-between scans and one full body one. 

Your points are valid and it's good to ask the questions. Even today people who under go radiotherapy are at risk of other cancers down the line as much as those exposed to CT scans etc. I think it really does come down the individual and they feel is better for them as no one can make someone do something except a court of law of course. 

We live in a very funny world right now and who knows what the future holds. 

Hi Woody1875,

I'd like to put your mind at ease, the first generation of TC surveillance patients did not have problems with secondary tumors from the xray exposures, we just became ill about 10 years after the program started. I've managed to contact a few others treated the same as me and we all describe the same problems, constant fatigue, nausea , no sexual function and a constant pulse / palpitations in our heads and chest. And no, it's not low Testosterone, I've been tested at least 8 times. Life is pretty miserable, but we are still alive, which is something. Please don't be concerned for yourself Woody1875, you would be ill by now if you were affected the same way, and anyway, you only had half the xrays we did. I'm pleased you are well, and the generations of patients that followed, at least some good came out of it.

I can clearly remember on the first oncology outpatient appointment after the op, being told I would be in one of the first groups of patients to be looked after on a surveillance program. I was told we would be the 'lucky ones ' , the first TC patients that would not routinely have to have chemotherapy. One of the 'lucky ones' ….famous last words, and all that.

I fully agree with you, people should be involved with decisions about their medical treatment, what's best for them. But in order to do that patients have to be given honest, truthful information, I don't believe I was.

This is a message for any early generation TC surveillance patient in the same position as myself. Hang on a bit longer, I've been looking for a solution for over 15 years, spent a small fortune in money and time, I might have found something that helps.

Mr Lab Rat

Hello Mate

I was not concerned, I have always expected side effects from the treatment I recieved. My main one is tiredness as I seem to get tired quickly. My testosterone level when last checked about 6 years ago was 16 but I would like it to be around 20 but the law states anything above 8 is OK I totally disagree. 

I also noticed that when some patients were offered a choice of chemotherapy or just surveillance it seemed those who had surveillance had reoccurrence of the cancer and the numbers were alot higher than those who had one or two doses of chemo. I may be wrong but that's what the numbers were saying to me. 

I am glad you may have found something that could help you but like you said we are alive and breathing so that's a precious thing in itself.