Testicular Cancer Chemo Carboplatin "Do I, Don't I"

Oh, i forgot to mention I need to make a decission by 10/01/20???

Hi humm,

It’s fair to say the evidence doesn’t present a clear answer on this question.

There are plenty of threads on here that discuss this very topic - Gregm laid out the stats clearly in one thread, might take a bit of finding.

I suppose the key question is - does having carbo reduce the % chance of relapse.  And the answer is unknown.

It will probably come down to what gives you the most comfort.  If you don’t have carbo, and then relapse will you regret not having it?

Carbo is far less damaging than other treatments, that said it might also be unnecessary.

I view the one dose carbo as bit of a cop out by the medical profession - they tell you are stage 1, no spread, no treatment required......then, would you like a dose of chemo just to be sure?   If the dentist  told me my teeth were fine, nothing wrong with them , but would I like a filling anyway.....

It’s a personal choice.  I think I know what I would choose.  But would agonise over it until the deadline passed for the decision to be made.

I don’t think you can get this decision wrong.  

No help I’m sure!

take care

dan

Hi,

I had a similar up to you 14/11/18 and came back with same results as you. I was given the same choice as you but when consultant explained % chance of a relapse was much lower - I opted to have the one shot of chemo. I was 37 at the time. I was told that I should be fine with treatment as they give carboplatin to 80 year olds. I am someone what suffers from having general anaesthetic so thought may suffer. To be honest for the first few days I was in shock of having had chemo and had a strange heaviness sensation. Then from about day 4 for 48 hours I was really sick i.e non stop. at this point I wondered what I had done and felt bad. I was given stronger anti sickness meds and that helped. For the next few weeks I had a range of side affects but did not feel as bad as sickness. After that, it was just general fatigue that came and went over the next few months or so. However having read other experiences on this site, I think I suffered more than some people.

Having been for a few check ups since, I tend to worry about each appointment leading up to it for a few days and I think I by not having the chemo I would have had more trips to the hospital.

Hope this helps.

James

Hi Dan, 

Thanks for the reply, really appreciate it, even though I'm still in two minds, woke up this morning and thought I'll do it, the more the day went on, I was thinking of surveillance....

And I agree with you, cop out, Dr said "I'm cured, but... you can have shot of Carboplatin as a preventive measure to reduce the % chance of it coming back from 20% to 5%"

And, apparently I also hear that 30% of stage 1 diagnosed testicular cancer is actually stage 2 as the scans don't always pick up distribution to the lymph nodes..  Something on YouTube from an American University..?? 

Once again, thank you for your comments. 

Graeme

Hi James, 

Thanks for replying, it can be quite difficult finding out from the information available which best suites my case and situation.

It's good (sorry about that) to hear your case is very similar to mine and you have had the one hit Carboplatin with limited side effects, I know everyone's unique and will react differently, just good to hear.

After my testicle removal I had a CT scan which made me feel extremely sick while I was laying down being scanned, my mouth filled with saliva, I nearly had to stop the scan, when it finished I had to use the nearest sink to spot the saliva out, 1 minute after the scan I was OK.. Strange... I did mention this to the oncologist and he said could have been a reaction to the iodine.. What I'm trying to say, I didn't have any allergies before all this testicle issue, but if I'm reacting to CT scan, I wonder what I would be like on Carboplatin...

Once again appreciate your time to comment. 

Graeme

Hello

I don't agree that it's a cop out due to what my doctor told me. Despite the offending testicle being removed and they say you are cured my doctor explained that millions of tiny cancer cells still get released into the body and if they take up camp somewhere else then you relapse. The whole point in one dose carbo is to mop up and stray cells and hence why your percentage of relapse is reduced dramatically. I had one dose when I was 35 so 7 years ago now and I had no side effects at all, felt like i never even had it. Yes everyone reacts differently but after being on this website for 7 years i can tell you that most people who relapse are those who chose surveillance. It's never a guarantee that you will not relapse with or without the carbo but it's a belt and braces thing. For every year you get passed the chances of relapse reduce even more. 

Consider all your options and ask about the side effects as you had a small reaction to the dye when you had the scan but it soon went because the dye goes quickly and so does carbo hence why you are told to drink lots to flush it out. I think carbo stays in the body for around 2 weeks and in that time it reaches all the body parts that blood reaches so you get a good clean up. 

All the best. 

Hi Woody,  

When I saw the oncologist for the first time I think I was still in shock and brain was trying to process what was going on, he hit me with lots of information, maybe he did tell me the reason for 1 hit Carboplatin and maybe I just heard the word chemo and it scared the sh1t out of me..  One more question to ask the oncologist..

What worries me more is the 30% stage 1 cancers are actually stage 2, lymph node results aren't always 100% (apparently), another question I have to ask the oncologist, and the size of my diseased testicle is 45mm, according to information on the net anything >40, your % for relapse increases. 

Thank you for your time to comment, yours and everyones comments are exactly what I was after...

This may sound like a stupid question, when you had Carboplatin, apart from when it was administered, did you take time off work (that is, if you were working)?

Cheers, 

Graeme

Graeme

My tumor was 45mm and my results were exactly the same as you. The only thing they found on my CT was a 6cm cyst in my stomach which they did not care about. I think the stray cells are what make us near stage 2 and the size of the tumour but let's be honest no equipment in the world can be that good that it sees microscopic cells. When they removed the testicle they removed the tubes to prevent any growth up wards which also helps prevent recurrence. You will also notice as time goes on that all hospitals and doctors have different opinions and different ways they feel is the best to treat you. I was under the QE in birmingham and they were fantastic. You will have 6 monthly CT scans to monitor you with 3 month check ups for the first year to keep a close eye on you. They act fast if they need to. I was lucky with work as I was entitled to 6 months full sick pay so took what time I needed. 

Always ask as many questions as you can so you get the answers you need. 

Kind Regards

Hi Woody, 

Once again, thank you for your comment, I can't fault the NHS and ES Hospital urologist and all other hospital staff that have dealt with me, the Uroligist probably a lot younger than me had a quick feel and before I could get of the bed he was on the phone getting me a provisional appointment for surgery in 5 working days time, I've luckily never had to of been admitted to hospital before, but I think 5 days is very quick, whenever you hear about the NHS it never seems to be positive..

Oncologist actually said to me that he is sending my testicle off/or the results to discuss my case with a wider selection of specialists, so not just the SE section group he is part of, it will be the Southern section group just to confirm what the consultants at the SE section are doing is correct, which relates to your comment "hospitals and doctors have different opinions"...

One more question regarding your specific case, I know you mentioned the size was 45mm, did you also have "no rete testis"?

Cheers, 

Graeme

Hello

Yes that's correct I had no rete invasion and the surgeon who did the op knew just by looking at my tubes it had not spread. I think the bigger the tumour the more cells that escape the more chance of relapse. There is no right or wrong decision on having the chemo one dose but to reduce my odds from 30% to 2% was a no brainer for me.