I'm cured, but what a strange story.

[Lottoball]

Hi,

I'm curious if anyone of you heard a story like mine.

Almost a year ago I went to the urologist with a swollen testicle (I've spinal cord injury, which has influence on your bladder and fertility-system).

After US he was 100% sure I had an inflammation. In a year time I had three ultrasounds, normal bloodwork and six visits to my urologist. All the time he spoke about inflammation. The swelling didn't grow and the pattern on the US's remained the same. This was also confirmed by others docs.

Fortunately I visted another urologist last week. "Take this thing out immediately", he adviced. "I'm not sure, but it could be TC."

My urologist, who's head of the clinic and has a very good reputation, finally agreed the testicle had to come out. "But if it's TC", he said "i'll give up my job immediately!"

I had my orchiectomy yesterday. Thirty minutes afterwards my urologist stood at my hospital-bed an told me they had found wrong cells in the testicle. So, unbelievably it was TC indeed!!!!!

He was totally confused, didn't no what to say. The way my testicle looked and felt (very smooth, it didn't grow in a couple of months time) was totally different from all the patients with TC he had before, he said.

This morning I had my scans and thank god my lungs and abdomen were clear. The cells didn't spread, so it seems I'm cured!
My urologist still doesn't know if the TC was a result of the former inflammation. He has no idea how the TC could develop in a testicle, that showed a clear picture of inflammation (orchitis). During the last year this was also confirmed by other urologists, who watched my US.

The final pathology-report hopefully will make clear what exactly happened, but my urologist couldn't find a case like this in literature.

Does anyone knows a story like this? Is it possible that TC develops after inflammation? Does the spinal cord injury probably has any influence!
Any comments are welcome!!!!!!

[Scott]

Well, it's a good thing you went through with the orchiectomy! I hope you're resting and recovering. Let us know what your pathology report says when you have it.

[Lottoball]

Hi,

Just want to add this: my urologist gives me the impression that I'm cured, because my scans were clear.
Of course he will monitor my situation closely in the next couple of months/years.

But after reading some posts on this forum, I'm worried again, because some people talking about observation, eventually get some chemo-treatment or other measures.

I'm wondering if there's a chance the TC will come back again.

So, do I have a reason to be very happy now and close this story (no matter what the pathology-report says) or do I have to worry because the 'job' isn't done yet!

[Russell's Mom]

odd situation

It seems like there are double bladed swords everywhere. My son has TC. Often my thoughts have tangled like yours. It is sad to think that TC can come back to visit, but then, it is not selective (to our knowldege so far) who's door it will knock on. I take comfort in the fact that we are watching. As statistics show that one in three people will know the disease, I believe that those who are not watching, simply have their eyes closed. Everyone should be aware and watching. I am glad for the information that we have learned and how to be strong instead of wandering. Finding balance can be difficult, I try to save my worries for one day a week...then sometimes they I forget! Good luck to you, Russell's Mom, Sharon

[djmac]

or do I have to worry because the 'job' isn't done yet!

I'm truly afraid that your 'job' is just beginning, but we are jumping ahead. There are a few things that can mimic TC but really aren't, such as benign adenomatoid tumor. Your surgeon might think it was TC but until you get your pathology report, you just don't know.

When you get your path, it may be carcinoma in situ (CIS) essentially the precursor to TC, and at that point your follow-up may be minimal. If you have TC, though, you are in no way, shape or form finished. Again, it depends on the pathology of your tumor, but in general terms you have a minimum of a 5 year sentence. If it is non-seminoma, you may have ffrequent ollow-ups for up to 5 years, then less frequently, if seminoma you'll need minimum 7-10, with a life sentence of yearly checkups. I don't mean to scare you because you caught this beast early, in its baby stages, but that doesn't mean that you shouldn't be diligent with your follow-ups. You see, recurrence is not a cancer coming back, it's a cancer always being there, but too small and feeble to detect.

Congratulations on your early detection and your diligence in getting yourself checked, but do not call yourself 'cured' unless it is CIS or benign, or you wait at least 5 years for non-seminoma or 10 for seminoma. Keep up the great work, though and you will be rewarded!

Best,

djm

[djmac]

So, do I have a reason to be very happy now and close this story (no matter what the pathology-report says) or do I have to worry because the 'job' isn't done yet!

Just to add:

You do have every reason to be very very happy... you caught it early, and that alone gives you a cure rate of nearly 100%, no matter what the path report says.

Best,

djm

[Lottoball]

Again, it depends on the pathology of your tumor, but in general terms you have a minimum of a 5 year sentence. If it is non-seminoma, you may have ffrequent ollow-ups for up to 5 years, then less frequently, if seminoma you'll need minimum 7-10, with a life sentence of yearly checkups. djm

If you talk about follow-ups, do you mean regular radio-therapy or chemo, even if the cancer didn't spread.

My doc just talked about only one radio-therapy-session, depending on my path-report. He didn't mention any long term-sessions, although I read on this forum that some people with Stage I indeed do have those radiotherapy or chemo-sessions regularly.

This confuses me.

(By the way: I'm from Europe, so excuse me for my not always correctly written English....)

[Scott]

If you talk about follow-ups, do you mean regular radio-therapy or chemo, even if the cancer didn't spread.

Follow-up means periodic physical examination, blood tests, chest x-rays, and sometimes CT scans.

[dadmo]

You certainly have plenty to be happy about, it sounds as if it was caught early and you may be cured with nothing else needed. When you get the final pathology back if your doctor is still unsure about your case you may want to have him contact either Sloan-Kettering or Indiana University. These centers may be able to help define what you have. The really important part is to share the information especially if the case is unusual. The real experts learn alot from new cases.

[Lottoball]

Hi,

This monday I´ll visit my urologist to get my final pathology-report.

What are the ´must-ask-question´, concentrating on the surveillance or general medical follow-up?

Of course I know this depends on the result of the report and the type of TC, but can anyone provide some questions I HAVE to ask, because my wife and I are quite new to this and we want a good preparation.

Any hints are welcome!

[Scott]

First, be sure to talk through all your test results. Then review all relevant treatment options. If surveillance is the right choice, then discuss what will be done and on what schedule. Check out this TCRC page and the NCCN guidelines for typical plans. You may also want to talk a little about what to expect if you should have a recurrence.

[Karen]

Welcome lottoball! The path report, bloodwork for markers (you made no mention of that, they are ESSENTIAL) will guide you to the next steps. Cancer needs to be managed by an oncologist. Ask for a copy of the final path report but in the meantime start looking for an oncologist in case you need one, one with the most experience with TC you can find in your region. What part of Europe are you in? We have members from all over and perhaps some can guide you to oncologists.

If you ded not have bloodwork done ask for it immediately. You need AFP, betaHCG and LDH. I'm glad you found us..there is a wealth of information and support here...you will be OK!

[Fed]

The path report, bloodwork for markers (you made no mention of that, they are ESSENTIAL) will guide you to the next steps.

We can't emphasize enough how important markers are in your case. The fact your CT scans came out clean is a good sign, but the markers will help complete the puzzle that will lead to your treatment options. Of course, the path report will be crucial as well. Your prognosis sounds good thus far, though. Best of luck on Monday,

[Lottoball]

Hi,

Thanks again for your comments.

My bloodwork showed, so the doctor told me, no evidence of TC. This was about 3 days before the surgery.

By the way, I'm from The Netherlands and my urologist has contacts with one of the TC-specialists in our country. This man, working at the university of the city of Maastricht, even wrote the (Dutch) guidelines for diagnosing and treatment of TC.

I'll ask if it's possible to see this doctor personally.