New diagnosis

[apple]

Hi all,

I'm 36, husband, father (2 yr old girl and another due next month). I'm also a doctor - I'm a paediatrician.

I have a testicular tumour, seen on ultrasound a few days ago. The offending article is due to be removed on Wed this week and the CT scan will follow shortly after. I had the blood taken for tumour markers today - results pending.

Am nervous. Intermittently scared. But I keep reassuring myself by the staggeringly high cure rates for this disease. I am, of course, aware of the significance of histology and staging.

Anyway, I'll keep updating this thread over the next few weeks.

Sorry to see so many new entries on here, but glad to be in such good company.

Best wishes,
Apple

[Smartie]

Hi Apple, and sorry to have to welcome you.

Good luck for the orchiectomy, and subsequent tests. I'll be looking out for you updates.

We'll offer any advice and support we can.

[Scott1974]

Apple,
Sorry to welcome you to the forum but you've found a place of a lot of support and knowledge. We all understand the nervousness and being scared. Just hang in there, the I/O will go quickly and is really more mental than physical. (that's a lot easier to say after the I/O than before) Good luck with the I/O and congrats on the new family addition. Please post your pathology when you get it. Like Smartie said any help or info we can offer let us know.
Scott

[TCdoc]

Hi Apple,

Sorry you had to find this site but there are a few of us doctors here who have TC at various stages of follow up/treatment. As you rightly say it is important to remember that TC has an exceptional cure rate regardless of stage. Post your histology and CT scan results. Your spelling of paediatrician suggests that you are in the UK?

[mpbro]

It's tough waiting for the data points to come in. I made the mistake (or was it a blessing?) of voraciously learning everything I could after the diagnosis. It was a daunting time to ponder chemo, RPLND, death. But when I finally faced the doctor again, I was educated and couldn't be floored by a worse-than-expected diagnosis. I think my wife was in denial.

Another thing that helped immensely in the first few days was having my brother-in-law around. If it was my parents, I'd end up supporting them. If it would have been a friend, I'd have had trouble showing my true emotions. He just hung out, helped with errands/chores after I was down from the surgery. And it was a wonderful feeling to see him get off the plane the day after the diagnosis.

Morgan

[TGlover]

Hi Apple,

I don't think I can add any technical advice, you're much more the expert than I

Statistics and information though don't cover the fact that you are faced with the big "C" word which is an emotional roller coaster. It is going to be rough. All I can say is personally I found the anticipation/fear/emotional aspect of the I/O was much worse than the actual surgery (home the next day with very little pain).

The waiting for results though, that's scary because its unknown. I hope you get a good prognosis and hope you keep us up to date!

[apple]

Thanks guys.

The uncertainty is very difficult. I keep running through the various scenarios in my mind, and I just want to know what stage I am etc etc.

My surgery is due tomorrow, but the CT scan hasn't occurred yet. I think it will be next week at the regional oncology centre.

When the radiologist found the tumour in my testicle he offered to scan my abdomen and pelvis with ultrasound - not as a replacement of CT, but to provide a bit of information on the spot. I am a good Ultrasound subject (skinny).

He had a good look, and couldn't see any lymphadenopathy in the para-aortic region or pelvic region. Liver and spleen also normal. I find this vaguely reassuring.

Anyway, I'll be back soon....

Apple

[Paul54]

Yes, the uncertainty is difficult. It is sooooooooooo easy for your mind to mess with you. From diagnosis to prognosis, my wait was almost two weeks. Expecting the worst, and worrying about my family, I carefully organized all my financial and benefits records, and updated my Will. It turned out, obviously, that none of that was needed. Although it is generally good to keep all that stuff updated just on general principles.

I also tried to keep myself busy. It helped. But there will always be some anxiety. You wouldn't be normal if this did not drive you a little bit nut.

[Smartie]

Like you, and almost everyone I guess, I found the waiting almost unbearable. In the absence of information, the mind attempts to fill the gaps by running through the various scenarios, and inevitably settles on the worst case.

After finding my testicular tumour, my radiologist also scanned my abdomen and found nothing of concern. The CT, a week or so after the ultrasound, also showed nothing of concern - except for one borderline lymph node, which we decided to monitor as part of my surveillance.

Have you had bloods done yet? It'd be a good idea to have your AFP, bHCG and LDH checked before the orchidectomy, so that the rate at which it normalises after the op can be monitored.

Good wishes for tomorrow.

[apple]

Sitting in my hospital bed waiting for the chop.

not long to go...

Got the blood results:

bhcg 28
AFP normal
ldh normal

Fairly optimistic about those results.

Apple

[Aegletes]

I'm sorry to have to bid you welcome to this forum, Apple, but hope for an uneventful surgery this morning and quick recovery.

[Les' Mom]

Apple....

I hope all is well following the IO. I am glad that they are doing the surgery. With a normal LDH and AFP and elevated beta, the sooner the staging is done the better.

Love,
Pam

[apple]

Back from surgery. Bit ouchy but not too bad. Eating and drinking already - hopefully home tonight.

Pam ( or someone else ) could you explain why staging would be better sooner rather than later? Is there something about the tumour markers that I need to know?

Thanks
Adrian

[RyanSeattle]

Apple your markers are extremely low and will most likely normalize. This would make you stage 1. If you do not have vascular invasion then you will be stage1a and if you do then you will be stage 1b. If your markers do not normalize and their is evidence of spread from your ct scan then you will be staged 2 or 3. Probably not the case but you don't know until you've had your ct scan. You have 6 weeks to make a decision about your treatment if your stage 1. Don't worry too much the cure rate is extremely high.

[apple]

Thanks Ryan. That was my take on it too.

Has anyone here ever come across a pure seminoma with raised hcg? I think it does happen, but rare. I'm guessing it will be a mixed cell type, but hoping for a pure seminoma. Will find out in due course but just wondered what the forum's experince is.

Cheers.

[Les' Mom]

Dear Apple,,

I am no doctor, but I worry when I see Beta Hcg levels raised. I didnt mean to worry you, but getting staging done and treatmens started is very important if a guy has the more aggressive form of TC..

Love,
Pam

[Davie]

From this very site.

"Elevation of the BHCG is found in approximately 10% of patients with pure seminoma"

http://www.tc-cancer.com/about/pure-seminoma.html

Raised bHCG does not preclude you from non-seminoma. However raised AFP precludes you from pure seminoma.

Hope this helps

Davie

[mpbro]

Apple,

Take a look at table 2 of this article. It breaks down (in statistical fashion) the marker response of the various cancer types. Obviously it's debatable to be self-diagnosing (especially for a lay person like myself), but being able to view my levels in this context was oddly comforting. I stopped hoping that I had a pure seminoma and got myself ready for non-seminoma. When I walked into the doctor, I was expecting it and had enough poise to ask questions.

Hope this helps,
Morgan

[Davie]

I knew I had non-seminoma before I had the orchiectomy and before I had a blood test.

During my second ultrasound scan the Consultant Radiologist was called. He opened the door, and from 10 feet away he looked at the screen and the first thing he said it was teratoma (British for non-seminoma).

Sure enough he was right. I guess he'd seen seen quite a few in his time and knew what to look out for.

Davie

[RyanSeattle]

Seminoma or nonseminoma the cure rates are within a few percentage points.

[TGlover]

I was diagnosed with seminoma and had hCG raised, but a few weeks later they diagnosed a smaller teratoma tumor near it (mixed, treated as nonsemimona). Not sure how accurate but I have seen comments that 10% of seminoma can secrete hCG.

I think waiting for the original prognosis was the most stressful part of this process.

[Aegean]

Hi Adrian,

The guys above are pretty much spot on. Only approx 10% of seminomas release markers, and that would most likely be bHCG. As the others have suggested, wither way your markers are low (even if slightly elevated HCG) and you should return to normal soon after the I/O.

All that being said, the truth is that the likelihood of 100% seminoma is probably on the low side, though still very possible.

No worries, doc. You're coming out on the sunny side of this thing. I suspect (if you have not before, I am not being presumptuous) you will be putting much more emphasis on self-checks for the boys in your practice.

[apple]

Thanks for that info. Morgan, that article was very useful. I'll add it to my burgeoning library on TC articles!

I'm pretty sure all of my male friends have been
examining themselves like mad over the last few days! Can't be a bad thing.

One of the weirdest things about this is the amount of times I have said the word "testicle" in the last week.

Adrian

[nashville mike]

my name is nashville mike, im a stage3 survivor stay positive and never give up , i went through lots of chemo and even almost died from pneumonia, was in the hospital a lot of times however my doctor jeffery patton and my nurse kim vanetta and my wife suzanne made sure i made it . be positive and you will make it , think of your kids and wife and it seems easier im pulling for you ,