Trying to figure it out

[koit]

Hi All

I'm in Australia 46 ....last week right Testicle started really hurting..aching and pain coming from testicle into abdomen.... I've had the same abdomen pain before but had not attributed it coming from the testicle,

I went o the Doc ASAP with the testicular pain.
Also after much self exam I could feel a hardish lump inside near where the testicle is attached to the body. I knew I had found the spot as the lump is painful to disturb.

Doc had me go for an u/s and some blood tests.

I was called back by her....the blood test AFP was high 8.4Ku/L top of normal being 7Ku/L

The results of the u/s was not discussed....though the u/s operator at the time kept saying it looked normal......however I now wonder if the u/s operator was qualified to make that statement and also perhaps she was saying it to keep me calm ?!

After the AFP result The Doc wanted me to have a CT Scan ASAP. However I've had many many rays in the last couple of years and she instead changed it to more u/s of abdomen and pelvis...so next week that's the plan. Also will repeat the AFP blood test.

Guys hoping if possible if you could please help steer me in the right directions...do you think the u/s is good enough as a diagnostic tool...or perhaps is an MRI better.?

Are there any other blood tests we should be looking at doing ?

I went to another Doc for a second opinion his advice was don't worry about it the pain will likely go away in a couple of days...I was confused with that advice !? And I've still got the pain.

I most appreciate anyone's thoughts on any part of this post.
Thanks in advance

[Scott]

Ultrasound is the right diagnostic to check for solid masses in the testicles. That AFP result isn't high enough to be certain that you have testicular cancer, especially if your ultrasound was normal. Did you also have blood tested for beta-hCG?

[koit]

Hey Scott

Thanks for your reply. Just checked.... Beta-HCG was <1 So that's a negative I guess.

I'm running confused...what do you think would be the best course of action

Cheers

[koit]

Update:

Today just back from another U/S this time with a very experienced operator... it was an pelvic U/S but he was nice enough to take a second look at the testicles again...

nothing seen again....

Tomorrow I have an Abdominal U/S ...will be looking at the Liver...gees I hope not!

He also advised if nothing is seen tomorrow to get the GP to repeat the AFP blood test....if still high then he advises having a full PET scan... (very sensitive machine for early detection)

[koit]

Full body PET/CT scan results... No lump/tumour seen.....


However The report states:

"There is focal uptake in the epididymis of both testicles, more pronounced on the right side. No abnormal activity is seen elsewhere in either testicle.

The focal uptake in the right epididymis is non-specific. It is probably physiological as similar activity is evident on the left side. Early inflammation or mitotic disease cannot be entirely excluded and if there is progressive symptoms a follow up ultrasound is suggested."

So the report could not rule out the possibility of cancer forming.

I would appreciate thoughts about this report result.has anyone had a similar result before..?
Should I get a second opinion on the imaging ?

what should I do now ....antibiotics perhaps?

Thanks in advance

[koit]

I guess I must be a pretty unique as I ve had no replies.

Please guys help me if you can...Im nearly done with my antibiotics...but the right testicle is still aching (like as if after I had been kicked there)

Current Status:
no mass with the U/S
no mass with PET/CT scan seen.....but significant uptake seen in right testicle more than left (but in both!)
Local Doc gave me antibiotics but ache is no better
Last AFP 8.4 Normal range is up to 7.0

What should I do from here?
The PET/CT Scan (Nuclear Medicine) Imaging Doctor suggested trying U/S again or Biopsy...and see a urologist. (Im seeing a urologist on the 19th September)

Is a biopsy a good idea if its Cancer ? would they see anything with a biopsy if there is no mass yet ?...what kind of biopsy is it should we have? ...Doctor mentioned Fine Needle Aspiration...is this correct?
Shoul I watch n wait till a mass is seen on U/S ?

Thanks again for any responders

[Aegean]

A second opinion is never a bad idea, but you do not need PET/CT... only another ultraound and bloods. I would give it a couple of weeks before repeating though. It does not seem like you have cancer and imaging is most likely not going to pick-up cancer-in-situ aka pre-cancerous cells, but get a second opinion to be safe... and DEFINITELY get it from a qualified urologist.

A biopsy is not a great idea. It is not typically done if TC is suspected as it could cause spread. The ultrasound should tell you all that is needed to make decisions about next steps if any.

[FocalPoint]

Where is the hardened lump you found? Top of the testicle where the tubing begins? Sounds like inflamed epididymitis. Also a sciatic nerve could be the issue as well. Radiating pain from the upper and lower back, and pinched nerves can filter into the scrotum, testicles, legs, knees, etc. I'm glad your ultrasounds came back negative twice, and everything else is normal. At this point, I believe cancer is probably not on your plate. You might just have a small infection, or a pinched nerve ending/pulled groin muscle.

[Kiwi]

Mate

My AFP has been around the 11 - 14 range forever and has never really varied, that is acknowledged as my normal, Just like there is a normal hight range but there are people that are shorther or taller that that. I can cleatly remember the oncologist with number 1 tc basically saying that it there was something going on it would be a lot higher than that.


In your case it maye well be a sign of somthing but you are still in "normal". You should have some follow up and if you can still feal somthing on the Testicle seek another opinion or ask for a referral to a Urologist.


Cheers

Kiwi

[koit]

Just wanting to Thankyou guys for your replies

Thanks Aegean, FocalPoint, Kiwi.

I've nearly finished my antibiotics..and there is still some discomfort...it def feels like its from testicle. And it hurts to check it for lumps compared to left.

The imaging doctor asked me to send my previous PET scan for comparison.....after viewing both scans ...imaging doc said there is definite change seen from 3years ago (last scan).

On the back of that my local doctor rang me today to have another blood test tomorrow and to see her next tuesday. In any case I've booked in to see a urologist next Wednesday.

I have a feeling my local doc will suggest a FNA biopsy be done..... Now I know that's a no no..... I will simply say lets see what the urologist says...no biop!

Will update the thread as we go.

The only other thing that can raise AFP is liver issues, chronic hepatitis and liver cancer...but with cancer it's usually very high.

Last blood was 8.3 let's see this time....and what the docs will say.

My best

[Davepet]

Your AFP is not that high, from http://tcrc.acor.org/dictionary.html#afp:

Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.

Dave

[koit]

Thanks Davepet

That is a bit more reassuring....it's the first reference I've seen about a level that is marginally over the norm.

If it weren't for that radiological uptake seen in the PET scan and slight discomfort I would be happy.
Urologist has postponed my appointment till the 26th sept (second time he has done this) if he does it again I will find another.
in any case what can he do...i guess monitoring....Im guessing he will want to do an U/S..do the urologists do the U/S themselves or not...just wondered ?

Also wondering if there is any benefit with using MRI scanning ?

Thanks guys

[koit]

Hope you experienced guys can read this and comment

I'm back from the Urologist

He checked me over ..we discussed the AFP marker level 7.6

He thinks the level is a concern and thinks it might be an extra gonadal tumour...!

He also said the full body PET scan I just had...was a waste of time for these tumours...so wants me to have CT scan.

Any views thoughts or comments on this are appreciated greatly.


Thanks guys

[Davepet]

You should either contact Dr Einhorn or have your doctor contact him. Also have your doctor look at the link I posted above. Your marker is barely elevated. While it is a good idea to keep an eye on it, I'd be surprised if Dr Einhorn would be at all concerned.

Dave

[FocalPoint]

Not to mention your AFP levels dropped from the last time you had them checked...

Not sure why he would consider that a concern either.

[koit]

Thanks guys

I persuaded him (urologist) and my self to wait another month...will then check AFP level again

The reason I think he is keen to dig deep is that my father died of prostate cancer at 52 and i have another condition that in <30% cancer occurs alongside the condition.

Im more comfortable though as the figure has gone down twice so far....! perhaps im one of those people that naturally have a higher level of AFP than the majority of the population.

The trouble is and I know this is the same for all of us....Doctors do not proactively check these kind of levels....so like many Ive only had this checked later in life...we have no baseline to see if it has jumped or gone down over time.

I will post the results as they come.

Cheers

[Kiwi]

Mate,

If you are not happy or are uncomfortable with your Urolgist or GP find another one, I have fortunate to mostly strick good docs that follow up and are prepared to take the time with you with one idiot that I gave the flick to fairly quickly. My family has had a couple of bomps with docs but we have pursued alternatives and found good docs on each occation.

Cheers

[koit]

Thanks Kiwi
I Will give it one more consult and see how we go

Cheers

Mate,

If you are not happy or are uncomfortable with your Urolgist or GP find another one, I have fortunate to mostly strick good docs that follow up and are prepared to take the time with you with one idiot that I gave the flick to fairly quickly. My family has had a couple of bomps with docs but we have pursued alternatives and found good docs on each occation.

Cheers

[koit]

You should either contact Dr Einhorn or have your doctor contact him. Also have your doctor look at the link I posted above. Your marker is barely elevated. While it is a good idea to keep an eye on it, I'd be surprised if Dr Einhorn would be at all concerned.

Dave

Thanks Davepet
Ive written to Dr Einhorn about this.
My last AFP is 7.7
So the last few months

8.6ng/ml 7.6ng/ml and now 7.7ng/ml

So its not going down any further..and not much change.

My Doc's are insisting I have a CT scan...hence I thought Id try contact Dr Einhorn for his thoughts.
Will update the thread when I know more.

[koit]

Hi All

I got a response back from the good Doctor

He told me I shouldnt worry with these numbers.

So good news...now to convince my local Dr's of the same thing.

Thanks again for everyones help