Recently diagnosed and scared.

[rupert]

TSX

Thanks for helping sort out the bats flying around my mind. Your information was exactly the sort I wanted to hear.

Could you tell me how long you had had this lump before treatment and what the doctors have said to you vis being cured.

I hope all goes well with the treatment.

[Mom]

My husband's testicle literally swelled overnight and it kept on swelling. By the time he had to removed it was almost as big as an orange. But it wasn't the tumor that was growing. What happened is that he injured the tumor on the testicle, the tumor filled with blood (sort of like getting hit on the forehead, a small bump turns into an egg!). Well, he had three tumors, all very small. He was very likely because if he didn't injure the tumor we don't know how far it would have spread. He did have blood in his urine prior to the swelling. He was misdiagnosed. They said he had "runners kidney" a condition where the viens in the kidney varicose and sometimes bleed. They never checked his testicle. My son's tumor was taking over the testicle. The testicle was hard, no lump. He had extreme pain when the tumor blocked the blood flow. It was on a Sunday, the doctor called in pain prescription and told him to come in the next day. The rest is history. My husband started with blood in his urine in November (1979), he was operated on the following August. There was no spread to the lymph nodes. The doctor thought my son had the tumors for six months, he ended up with 3xBEP. So you just never know until the path report comes in. Good luck to you both, Rupert and Martin. Dianne

[TSX]

Could you tell me how long you had had this lump before treatment and what the doctors have said to you vis being cured.

My story is quite unique. I first noticed the hard testicle (not a lump per se, remember) on a Saturday morning around 10am. I consulted my family medical book, then the various Internet resources, at which point I was convinced it was TC. I rang my doctor's weekend call line around 4 pm, went to my local hospital around 4:30pm, had an ultrasound, chest X-ray and blood test around 6-7pm, met with my urologist to discuss the results around 8 pm, was told there was a 95% chance of it being cancer and that it should come out ASAP for a full and accurate diagnosis, prepped for surgery around 9pm and was released from the hospital around 1am Sunday morning, after a two-hour wait for the general anesthesia to wear off enough so that I could walk.

That, my friend, is what I call prompt medical service! Less than 12 hours between the time I noticed something was wrong and the time the offending testicle was removed. There is much more to the story about why things happened so fast, a lot to do with hospital politics and who was responsible for me that night, as well as fortuitous timing with respect to operating room availability & staffing, but I'll not bore anyone here with those details. I should note that I asked one of my oncologists how long she thought I had TC prior to noticing this, and she guessed that it was close to two years!

As far as cure rates quoted, I am "stage II non-bulky seminoma" and being treated with chemo (3 x BEP), which is in itself unorthodox. It was strongly recommended in my case since the relatively staggered positions of my enlarged lymph nodes would have meant a radiation window that included the base of my lungs had I gone with the standard radiotherapy treatment, and my oncologist team was not comfortable doing that as a first-line treatment. That being said, I was told that the cure rate is "greater than 90%".

-TSX

[rupert]

Dea Diane and TSX

thanks for the information. I'm still pretty nervous but it was helpful to read your stories. I just wish the doctors would ring me. I am going to try and go to the hosptial again today (Sunday) and see if they can do anything before Monday. The waiting is the worst part for me for now

Rupert

[TSX]

If you think waiting right now is the toughest part, you're in for a shock while you wait for the pathology report to come back. That was the worst part of this whole ordeal for me. After things happened extremely quickly up to the orchiectomy, I had to wait 10 days for the pathology report and CT scan results.

You'll be OK. Like I mentioned, I was probably walking around with this for two years prior to noticing anything wrong, so in retrospect a few days or a few weeks really wouldn't have affected my prognosis one way or the other. After finding out I had seminoma, my doctors even gave me the option to wait a few months for better timing with respect to my work schedule, in order to begin treatment.

-TSX

[rupert]

Dear thx

Thanks.

The part I hate is the idea that I have had this and not noticed it until now. Do you you know anthing about how quickly do these things grow?

Rupert

[TSX]

Rupert,

My only knowledge is what most here know: seminoma progresses relatively slowly compared to nonseminoma. Beyond that, I think much depends on the lifestyle (diet, exercise, stress level, etc.) of the individual.

For example, for years I have been taking many supplements that have been shown, thorugh peer-reviewed medical studies, to either prevent specific forms of cancer, slow down metastasis if cancer is present, or kill cancer cells directly. So in my case, two years with the disease may still be a relatively short period. On the other hand, a "couch potato" who lives on junk food may not have fared so well over the same two-year period with TC.

In the case of nonseminoma, much depends on the pathology of the primary tumor, where some forms can be very quick to spread and may skip the lymph nodes and jump directly to the lungs, brain, liver, bones, etc. This is what happened to Lance Armstrong - nonseminoma that didn't affect his abdominal area but had metastasized to his lungs and brain. Even in his advanced state, he was able to pull through with a cure. By the way, from Lance's writings it appears he waited three years between noticing a lump on one of his testicles and seeking help. He only sought help at the point where it became too painful to ride seated on his bike. I suspect that if Lance had not been phenomenally committed to diet & exercise during this three-year period, most of us would not know his name today.

As someone who has recently gone through everything you are going through now, I would urge you to not get overly worked up about this. That is, until you have something to get worked up about. There is a blueprint for what guys in our situation should do. Let the initial diagnostic process run its course: orchiectomy, pathology report, tumor markers, CT scan and chest X-ray. When you get these results back, along with the interpretation by your oncologist, you'll be able to get much better input from this forum if you choose to share those results.

-TSX

[rupert]

thanks. Will do.

[rupert]

Just finished speaking to the hospital and my surgery will be on Friday. I know it's a bit longer than I wanted but I can't do anything about that. Also, the doctor said the results would take between 2 probably 3 weeks to come through. Is this normal?

In the meantime thanks to everyone for your support. Once I get out of hospital.I'll let you know how I got on.

Rupert

[Davie]

Hi Rupert,

Here's what happened to me on the UK National Health Service. I assume each country will differ.

Diagnosed on 7th March
Second opinion ultrasound and chest X-ray 9th March
Operation on 13th March
Histopathology results on 17th March
CT scan 22nd March
Full results and treatment schedule 24th March

Therefore it took about 2.5 weeks to get my full results from diagnosis. However, my full results should have been available after 10 days if it wasn't for the delay in getting a CT scan arranged.

I was offered a chest X-ray with my second opinion ultrasound, which helped with my peace of mind. Although I didn't get my full results until two weeks after this, I knew very early from my chest X-ray that my lungs were likely to be clean.

This is probably particular to me but as soon as the consultant radiologist looked at the ultrasound screen, he immediately told me it was non-seminoma.

Davie

[TSX]

2 to 3 weeks sounds a bit long to wait for results - does that include tumor marker tests, CT scans & chest X-rays?

I waited 10 days for mine, but that had more to do with my urologist's availability, since he likely received all test results in about half that time in my case. In the hospital where I was treated initially, there is generally a 2 to 3 day wait for pathology results and a 24-hour wait for CT scan results. X-rays results come within an hour, and blood test (tumor marker) results are a few hours.

The orchiectomy is a simple operation, nothing like the RPLND surgeries that are described in this forum, so this is not something you should worry about.

I would encourage you to try to get your pathology report done by a pathologist experienced with testicular cancer. In the US, one can get a second opinion on the pathology report; however, some things that are done during the first opinion are not duplicated during the second. Why? The first pathologist will get the whole testicle with any attached tissues and will study all this and make a handful of slides by slicing the "specimen" at various locations. The second opinion pathologist will be observing only the slides created by the first pathologist. It's important to get the pathology report correct, since a tiny amount of nonseminoma (~1%) present in an otherwise pure seminoma tumor would change the recommended course of treatment.

It may not be possible for you to find a pathologist with TC experience where you are, but it would be a worthwhile thing to find out and push for it if you can.

-TSX

[UK Mart]

The time delay seems pretty normal to me!

I'm two weeks today post op and still waiting to get my results!
Have a good week and all the best for Friday, I hope everything goes well.

Martin

[mikeygti]

Rupert;

Best of luck with your surgery on Friday.

I must say that through my entire "ordeal" ,which includes an I/O, one year of surviellance,followed by chemo for a re-occurance,waitng for test results has been one of the TOUGHEST parts to deal with. It's the "not knowing" that plays on one's mind. Once you do get your path report along with blood and CT scan,you will know exactly what you are dealing with,and be able to focus on what needs to be done to kick the #$@@** out of your cancer.
In fact,most T/C cases are cured by the I/O alone !

Best wishes

[rupert]

Thanks for the information and support.

Rupert