Testicular cancer

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Post operative fatigue

jadem0nkey
Posted by

hi all

i had my right testicle removed in January and have healed well. I had a single dose of chemo in March and have been declared cancer free with regular checkups. I am back at work and generally feel healthy.

Has anyone else experienced a prolonged bout of extreme fatigue following surgery? I can go for days with no problems and then feel physically and mentally exhausted; not being able to stay awake for more than a couple of hours and in a mental fog.

My oncologist doesn’t seem concerned and told me I ‘shouldn’t’ be feeling like this and my GP had bloods taken with nothing showing up.

OutoftheBlue
Posted by

same here mate - 3 gp appts. 3 sets of bloods - all "within normal", oncologist shrugged his shoulders and said "maybe its because your older" i'm 3 years since my op. but my fitness has progressively got worse - i used to cycle and run quite a lot and now i struggle for motivation and although its not a tiredness like "i want to sleep" its a feeling of life is like struggling through treacle!!!!

i'm not sure where to turn myself and have been thinking of seeing a private clinic in order to try at least testogel or something similar to see if that will have some effect on my symptoms, to either rule it out or to cure it

Apr 2016 - betaHCG raised --> Orchidectomy- Left Testicle removed - Stage 1 100% Seminoma Surveillance only.

Surveillance : Year 2017 - CLEAR ./ Year 2018  - CLEAR / Year 2019 so far - CLEAR 

jadem0nkey
Posted by

Thanks for the reply Out of the blue, I’m off to the docs again tomorrow, it’s difficult not to think I’m just making it all up :-( 

OutoftheBlue
Posted by

co-incidentally i just had another appt yesterday - as i move around a lot i end up seeing new GP's every 6 to 8 months - this was the same as every appt since my OP.- the usual answers to any question i have regarding my Fatigue

"you say your fatigued....in what way"

"all your bloods are within normal range"

"what would you like us to do for you about your fatigue"

"perhaps its just age creeping up on you"

"you should get more rest"

in the previous 12 months it also usually contained

"your other testicle is taking up the slack and can be slow, give it 6 months"

its so so so so frustrating - i used to run and cycle like a mad man everywhere....................

sorry for the rant!

Apr 2016 - betaHCG raised --> Orchidectomy- Left Testicle removed - Stage 1 100% Seminoma Surveillance only.

Surveillance : Year 2017 - CLEAR ./ Year 2018  - CLEAR / Year 2019 so far - CLEAR 

Odbball
Posted by

Hi OOTB,

Last appointment the doctor commented that it’s a common occurrence that TC patients put on weight following treatment.  I know I have.  Do I have less energy than before....I was lazy before, could be lazier now.  But I think my leftie hadn’t been contributing to my T levels for quite awhile anyway.  

Have your testosterone levels been tested? Is that what was referred to as in normal range?

take care dan.

OutoftheBlue
Posted by

3 times - all within normal, this next time they said they will get the lab to break down the test into free/available and uptake testosterone (or something like that) which might give a hint / different result 

i read on here or some other forum, that it doesnt matter if your within normal, it is all about what your body is used to when it had 2 testies - as i never had a reading before, for all i know i could have been used to having upper or high levels, and now im down in the lower levels but still "normal"

personally for every case where removal has to be done, they should always do a proper testosterone test to baseline you for after.

Apr 2016 - betaHCG raised --> Orchidectomy- Left Testicle removed - Stage 1 100% Seminoma Surveillance only.

Surveillance : Year 2017 - CLEAR ./ Year 2018  - CLEAR / Year 2019 so far - CLEAR 

Si-Hampshire
Posted by

I have to agree with this, the doctors measure in ranges, I was at the bottom of 'normal' so 'low' testosterone never came up in general  conversation, however I went back over a 12 moth period and kept discussing my fatigue and the doc's been really good, i've been on testogel for a year now and the difference for me is pretty big , i was at the very low end of normal - now i just use a small amount of testogel each morning to put me back in the middle of the normal range (checked for the first couple of months)- and now I walk 20k's a day, commute into London, cycle, and i'm on the go from 5:30 till 11.30. I was struggling before, sleeping in the afternoons or the minute i got home from work and feeling exhausted and foggy. (we did do the free / available tests too, to help work it all out) My suggestion is to keep discussing with your doc and if you're at the low end of normal see if it's worth a try, having said that it was a bit of a journey to get there for me too. All the best with it at any rate

OutoftheBlue
Posted by

So - after *finally* getting the "free testosterone"  blood test (i've had 3 previous testosterone tests that didnt do this and showed a simple normal result!) .... it showed an abnormal result, and went to see the GP today, i had high hopes this would be my turning point, but as he was saying that he cannot prescribe testosterone suppliments it had to go through a referal to a consultant, an Endocrinoligist and he would send through the results - but as he looked at the result he noted it was done at 3.30pm and therefore invalid!!!!!!!!!!!!!!!!!

(i wonder why the GP last time made the bloods appointment for then if it would make it invalid)

So the GP said "lets start from the beginning" at which point i almost broke down in tears at having to explain again for the 6th time to a GP as well as my Oncologist what the hell is going on for that 2.5 years and why wont anyone just listen to me instead of running tests over and over again and telling me its normal.

He actually started to listen a bit more but said there was nothing he could do apart from "rule things out" and it maight just be labelled as "chronic fatigue" but he would re-run the test again in the early morning, and if it was a problem again then he would refer me.

So once again i'll get bloods done and wait....

Apr 2016 - betaHCG raised --> Orchidectomy- Left Testicle removed - Stage 1 100% Seminoma Surveillance only.

Surveillance : Year 2017 - CLEAR ./ Year 2018  - CLEAR / Year 2019 so far - CLEAR 

TC2000
Posted by

Just in case it helps I thought I'd post my experiences here.

I had been signed off from my oncologist years ago but the only reference he ever made to testosterone was that I was on the low side of normal but still normal so all is fine, so I never really gave it much thought. I think oncology just want to treat your immediate illness and don't necessarily look beyond that.

It had never occurred to me until a couple of years ago that I might have low testosterone when I read an article about it and realised that I was suffering many of the associated symptoms.
I wasn't really that comfortable talking to my GP about it initially as I assumed he would just say I was getting older (although I knew I had been feeling like this for years), so did an internet search for online medical checks and paid for my own blood test just to see if I had a problem. This came back at a level of 10 which is low or borderline low so I felt more comfortable talking to my GP about it and just asking for an NHS test to confirm. This came back at 12 which again is borderline low but a borderline level with symptoms should be considered for referral from what I have read.
GP's don't generally know too much about this and mine admitted as such but said he would refer me to an endocrinologist which I was very happy about. I wasn't so happy when I found out that on the NHS the waiting list for initial appt to see this particular consultant was over a year. I have private medical insurance through work so was able to use this and see the same consultant in his private practice within a few weeks. If I hadn't had private medical I'd probably have paid the £200 odd for the initial consultation myself just to get to see him sooner. At initial consultation he just looked at my previous blood results and got me to fill in a questionnaire about symptoms.
Based on the questionnaire he said I was within the range and said he would put me on a trial of testosterone therapy and gave me a prescription request letter to give to my GP surgery. I have tried 2 gels (Testogel and Testavan) which haven't really lifted my levels as much as hoped but I do feel that it definitely makes a difference. Hopefully at my next review I will get to up my dose but either way I plan to be on it for a long time.
It is true that blood tests should be done in the morning as testosterone levels are highest then. There are some things that will raise your testosterone levels naturally such as weight training and exercise so if it was me I'd avoid prior to an initial blood test. Not getting enough sleep I'm told can also lower testosterone so again I'd try not to sleep too well just in case I was the wrong side of a borderline test and stopped me getting the initial referral. Whether it makes any difference is hard to say but I didn't want to take any chances ;)