confused

[drew]

New to the site, but it has been very,very, helpful so far.
I am 35 and have been diagnosed with TC on the right last week and scheduled for surgery next week.
This it where a little of my history and the value of second and 3rd opinions comes in:
1)noticed pain and slight swellling in right testicle about around October. Went away on it own in a few days, i thought i strained myself too much with lifting
2)Came back in Dec. really bad, dignosed by sonogram as epididimitis infection, went on antibiotics. pain went away real quick.
3)By January, I had seen 3 urologists, and had 3 hospital sonograms done. all sonograms came up 'clean' no 'mass' with still the diagnosis as a bad infection and consistent swelling (but unfortunately nobody did bloodwork!!).
4)Getting frustrated i went to Sloan where the first and second bloodwork came up not so good: AFP 4000, Hcg 800 (I dont know much about these readings, any input would be appreciated)
Scheduled for Ct soon, (Chest X and ekg came up normal) Once again sonogram 4 did not show a definate mass (maybe something really, really, slight,if that, they said).
No back pain, diziness, etc..etc..

Scheduled for Testicular surgery next week.
If anyone could please advise me: How is it that all those sonograms never picked anything up (and i have no lumps, just painless swelling, and i feel great),
Was it a real long delay messing around with 2 months of useless antbiotics? and what do those marker numbers really mean? (thay dont seem to be very consistent with the research I did so far, one high and the other low??)

thanks and much appreciated, drew

[Jens]

Hi Drew.

Sorry to hear about your situation, it's s frustrating that many still get treated with antibiotics instead of a thorough examination (ultrasound and blood work).
You have done very well for yourself, first by continuing to go to various doctors and secondly for going to Sloan. TC needs expert treatment and Sloan is tops.
In defence of the docs: If Sloan can't see it on ultrasound, it's no shame that others couldn't either.

Here is what I think:
Your tumor markers are both high.

That there is swelling but no palpable or US-detectable tumor may indicate 2 things.
The testicle may have had a tumor, but it has "burned out". Not likely to be undectable on ultrasound though....
That there is something somewhere else, known as an extragonadal germ cell tumor, meaning a testicular cancer located outside the gonads. Rare, but real.
The upcomming CT scan should reveal this.

In any case, you elevated markers indicate that you are likely to require treatment after orchiectomy.

I know that this is scarry stuff, but be reasured that there is a cure and it's very effective.

There are - as I'm sure you have found out already - different types of TC and the treatment is based upon this, the markers and if there is spreading or not. It will take a little time (days, not weeks) to find out what it is you have, but don't worry, that period has no influence on the success of the treatment.
It's still curable!

Keep asking questions - here and elsewhere. Knowing what you MAY be told by doctors will help you a lot. You will avoid the worst shock effects and you will understand the messages better. Both work to your benefit.

http://www.tcrc.acor.org/ will help you find some answers, as will all of us here.

It's also very wise to let go of some of the emotions, they do build up.... We are here for that too.

Best wishes
Jens

[twotimer2]

similar case

Hi Drew:

What you are going through sounds a lot like what I went through when I was 32 and I think happens all to often, a mis-diagnosis until multiple trips to doctors and multiple tests finally confirm tc. I wasted 2 months on my first tc with anti-biotics, and it wasnt confirmed by ultrasound either, finally the doc ordered blood tests and found my AFP at 3000 and told me there was no question. I too had just painless swelling, no specific hard lumps, just swelling to about twice normal size, so I, for one, can confirm a lot of your experience unfortunately.

Both your AFP and HCG are high, I believe that AFP normal is considered 0-6 ng/ml and HCG is 0-9 mIU/ml, at least that what my blood test results always show. In my experience having elevated markers is a good thing as it allows you to monitor them after the surgery to see if they return to normal. If they dont return to normal values in the expected time that could mean that the cancer has spread elsewhere. If they do return to normal then you have some confidence that it was only in the testicle that was removed. Either way you want to know.

I wouldn't dwell two much on the two months time on anti-biotics myself, just remember that tc is very curable and nearly all men are cured even with late stage disease. Many men live with a lump for a very long time until finally going in to get checked. You could very well be stage 1 (cancer in testicle only) just like I was in a very similar situation, but even if you are not, always remember how curable it is.

One final bit of advice having been through this twice; I would not try to go through it alone, tell your family, tell your close friends, you will be amazed at the support you get from the people around you.

hope this helps...good luck
Mark

[Scott]

Yes, both blood markers are high, and your AFP level indicates non-seminoma. That means after the orchiectomy, with normal scans, if your blood markers return to normal, your options will be retroperitonal lymph node dissection (RPLND) or surveillance (watchful waiting); otherwise, chemotherapy is likely. All roads lead to cure.

Welcome, and keep us posted!

[huckchef]

best of luck and my thoughts and prayers will be with you daily. please dont hesitate to ask and always be positive!! lets us know results!!
Brian

[drew]

confused

Thanks to all for the input and support.
I heard that the AFP level also has a correlation to your liver function. Wonder if years of pretty good drinking could also have raised my AFP levels??
My blood work did show raised liver enzymes (if that is the correct terminology)

that RPLND surgery does not sound like anything one would ever want to go thru!
Am I mistaken to think that radiation and/or chemo are a much better choice?

Thnks again to all!

Drew

[Scott]

that RPLND surgery does not sound like anything one would ever want to go thru!
Am I mistaken to think that radiation and/or chemo are a much better choice?

Every treatment has its pros and cons. RPLND surgery is a big deal, but it has fewer long-term effects than either radiation or chemotherapy.

[rightone]

I disagree. rplnd can have many unpleasant side effects and generally causes trouble later down the road. guaranteed. Your chances of having complications from chemo are less likely. I have researched this extensively and I am willing to take it to the pepsi challenge. I was one of the rare cases that was affected by chemo. I have spent hundreds of hours researching the instances of side effects of chemo and rplnd and which ttreatment is better, as I got leukemia from the vp-16. the rarest side effect out there. I was floored. i digress. If you can get away with it chemo alone is the way to go.

[dadmo]

rightone:
I know of no long range guarenteed complication from an RPLND. Yes it is a major invasion of the body but it is the same one done for kidney replacement and/or repair and it is the same operation if you should have a major blockage of the intestine. Chemo on the other hand is poison. Make no mistake about it, if it were to be administered incorrectly it would kill you and for some unfortunate patients it does. I have witnessed patients convulsing within minutes of begining a first round of treatment. Sloan Kettering is rated as the #1 cancer treatment facility in the United States and they would perform an RPLND if it is curative rather then give Chemo. You can check it out in any major onocological publication. Look for any research done by Bosl, Motzer, or Sheinfeld. In particular see if you can get a copy of Long-Term Medical Care of Testicular Cancer Survivors it was published in 2002 American College of Physicians-American Society of Internal Medicine. Listed inside are some of the Late Effects of Cisplatin-Based Chemotherapy, they include, Raynaud Phenomenon, Hyperlipemida, Hypertension, Impared glomerular filtration rate, Hypomagnesmia, Increased plasma renin and aldosterone levels, tinnitus and hearing loss, peripheral neuropathy, and as you are aware leukemia (which is not caused by an RPLND as you seem to imply). Chemo is to be avoided if at all possible.

[Scott]

Granted, these lists aren't exhaustive; they don't mention, for example, the possibility of chylous ascites or retrograde ejaculation. However, check out this article for a good sense of the difference between the long-term and late side effects of surgery, radiation therapy, and chemotherapy.

[drew]

confused

Thanks again for all the replies and support. Will update when results of Ct and pathology come in.
What are the side effects of the type of chemo usually used for TC? Is laproscopic RPLND a viable option?

Thanks, Drew

[Scott]

Is laproscopic RPLND a viable option?

I sure hope so, since I had one!

That's actually a controversial question. Those who have a good amount of experience performing them say, "Absolutely!" The TCRC recommends against them, as few surgeons can perform them, and it used to be typical to use them only for staging rather than as a cure; that is, chemotherapy was always administered afterward when active cancer was found. That practice is changing, though, with open and laparoscopic surgery being treated simply as different access methods serving the same purpose.

[carpla]

Drew- my husband had both chemo (4 rounds of in-patient VIP therapy) and then the RPLND. He didn't have the option of one or the other because his abdominal tumor was so large that chemo was necessary to shrink it before surgery, but I'll tell you, if he could have chosen to do without the chemo, he would have. One of the gentlemen from the same oncology practice we were part of was on the same chemo schedule as my husband, so they were in the hospital pretty much at the same times. This gentlemen, who 30 years old and a long distance runner in GREAT shape, had a massive heart attack not even halfway through his very first round of chemo. I don't mean to scare you by saying that, but I can't imagine anyone saying that the side- and after-effects of the RPLND are worse than those from chemo. My husband had to be hospitalized between the 1st and 2nd rounds due to blood clots that formed in hi legs and chest and is still on Coumadin now and he finished chemo just over a year ago. He also has lasting neuropathy in both his feet, although he was lucky enough not to get it in his hands. He had seizures (luckily while in the hospital and not afterwards at home, although he did have a few fainting spells at home right after ending a couple of the rounds) brought on by the chemo, and all the standards such as severe nausea and vomiting, rapid weight loss and gain, and loss of almost all his body hair, even his nose and ear hair. Luckily, he didn't experience any ringing in his ears, although a lot of the men here did, and those whose chemo included Bleomycin have to have their pulmonary function constantly monitored because it can cause severely diminished lung capacity. We had to endure the chemo, as many of the gentlemen here had to, but if it's not necessary and you can get away with not having it, don't do it. I still cry when I think of how horrible those months were for my husband and I wouldn't wish chemo on my worst enemy. Of course, the effects of chemo are different for everyone, and you may sail right through it, but please thoroughly discuss all your options with your doctors. And please forgive me if I scared you with nothing but bad news, but here is the best news--my husband has been clean for one year the day after tomorrow! Best of luck to you!

[drew]

confused

Hi everyone,

So I got the IO done yesterday and got the results of the CT scan. Surgery went well, I am quite sore today. The Ct scans were less than great, they showed a small spot on my lung (no concern said my doc), and a few enlarged nodes in my abdomen. The doc recommends chemo soon, and rplnd down the road. Does this sound reasonable?? I would like to avoid rplnd, Is that a viable option? If rplnd will improve my odds dramatically, I would like the laproscopic type , I think.
Any comments on where this surgery is commonly done (I am at SLOAN), but my doc did not seem extremely for the Laproscopic type! (although I have yet to consult with him, this was after surgery that we spoke for 5 min.)
Does the type of chemo used for TC generally cause the 'commonly' seen hair and weight loss seen in most individuals with other cancers?

Thanks everyone for your support,
Drew

[drew]

confused

Hi,
So i finally got the pathology reports. Shows 60% Embryonal carcinoma, some yolk sac, mature teratoma.
My oncologist (dr. Bosl at Sloan) strongly reccomends 4xBEP now, and definitely rplnd later for the presence of teratoma.
I do have a coulpe nodes at 2.1 cm. my markers were (begore surgery) at 4000 afp, and 800 hgl. No other organ involvement other than the nodes is noted.

My only question is with the rplnd question. Is it mandatory in my case based on the above information? Do i need a second opinion? He also said laproscopic rplnd ' is outof the question' for my case

Thanks, Drew