Treatment

[tlh]

Like so many before me, I have lurked around this site before actually joining. Until June 29th, 2006, I thought I was invincible. However, a trip to the Doctors office on that Monday changed my mind. An ultrasound on Tuesday, a consult on Wednesday and surgery on Thursday proved I was human. I had the orchietomy on my right testicle. Here's the excerpt from the path report: "Tumor is 1.0 cm x 1.4 cm x 1.0 cm in size. Tumor is limited to the testis. The epididymis and the tunica albuginea are free of neoplasm. No angiolymphatic invasion identified. The spermatic cord margin is free of neoplasm. Typical Seminoma, pT1, Nx, Mx (AJCC Stage 1).

After researching this site it would appear this is the best possible news I could have hoped for or received. The doctors all tell me that this seems to have been caught very early and that I am lucky. (funny -- I don't feel lucky to have cancer).

Here's my question -- The CT scans came back clear and so did the chest x-rays. I met with the Radiation Doc yesterday and he is suggesting three weeks of low dose radiation for a total of 2700 Rads. Does this sound like a typical dose and treatment course. I have gone back and forth about the surveillance vs. radiation but I am leaning toward radiation to increase my odds of destroying anything they didn't see. Also, when I questioned the Doc about using the protective case during radiation for my remaining testicle he told me they didn't use it anymore since any scatter radiation was likely to scatter and travel inside the body as opposed to outside the body and the ball case would be ineffective anyway. Anyone else ever hear of this? I am scheduled to start the prep work and "dry run" radiation late next week. If anyone has any thoughts on this treatment plan I would be happy to hear them.

Thanks again for a great site. It really helped reading the posts here. Especially those nights when you can't sleep because you've just been told you have cancer.

[huckchef]

sounds pretty much like the course of treatment is correct. i didn't have the shield either during treatments. from what i was told, they can control the area of spread much better than they use too.
it will be a over before you know it! best of luck and my thoughts and prayers will be with you!
brian

[UK Mart]

Same as me really - you'll be back to normal in no time - it's just a case of get your head down and get through it - it's bareable.

My treatment was a medium/low dosage over 8 consecutive working days - it's all a bit of a blur now to be honest although i managed a game of tennis on the saturday before i finished!

As for the scatter pad - i'd have thought they'd just concentrate on your abdomen as you didn't have any chord invasion so the 'nut cover' won't be necessary as they probably won't be blasting that area.

I think radiation is great for peace of mind - i had my first follow-up check up today and i'm more comfortable now knowing i've taken the precautionary route and cut my odds of a recurrance from 20% to 2%

[tlh]

UK Mart ---

What kind of side effects did you suffer from the low dosage? I'm a little concerned about this.

[UK Mart]

UK Mart ---

What kind of side effects did you suffer from the low dosage? I'm a little concerned about this.

Side effects at the time weren't actually that bad - I drove an hour there and an hour back on my own and through rush hour traffic most days so that tells a story in itself!

Probably half an hour after i got back, if my therapy was in the afternoon, I would be absolutely starving - my apetite wasn't too badly affected i don#t think. I drank a lot of smoothies at the time as I thought they'd be good for me - well, they didn't do me any harm! - now though, i can't really face drinking a smoothie for some reason... every day though, I would take an anti-sickness tab as i was going in to the hospital and pretty much pop a tablet as and when my stomach felt a bit dodgy. They are essential (and apparently very good for hangovers too !)

Half an hour after i'd eaten, the first week of the radiation, i'd basically fall fast asleep for a couple of hours - regular as clockwork! Then i'd wake up, watch a bit of TV and then go back to slepp for the night - i slept loads!

I was fortunate enough to not have to work during treatment and went back about a week later.

I'd previously been told the affects were cumulative but for me, the worst day was the first and then it progressivly got 'better' as i got used to it.

Put it this way, I was expecting a lot worse!

[tlh]

Thanks for the update. I actually read your post about the tingling as well. Hope all is well. I have the option of working or not while going for radiation. Judging by everything I've read, I may opt to take the time off to sleep!!

[Sans rt1]

I will add a few thoughts. RT is a reasonable treatment option, but surviellance would also a reasonable option for you - if you are the kind of person that can deal with 20% vs. 3% odds. Benefit would be that you don't have to get treated (less future risk) if you don't need to. Mine was pT2 and >4cm so my odds were a bit worse so I did not really consider surviellence too seriously. But either way the decision is reasonable.

You will have effects from the treatment, hopefully they will be mild and you can function. Taking the time off from work is great if you can, but for me it was better to work part-time (office job not physically demanding) - I went in late, took my RT during lunch (15 minutes away), went back and worked a few hours then went home and took a nap. My manager and co-workers were great about covering for me. I did take a few days off sick, Fridays after 4 straight days of RT I was beat. I was too tired to really do anything, yet not tired enough to do nothing, so those were not good days for me (I am not a good sick person). You will have to be the judge of what works best for you.

It has now been almost 7 weeks since I finished RT, and looking back I can say that I actually enjoyed the days during my RT - yes, I was a bit tired and a little nauseated , but everyone treated me special and no one expected much of me .

Hopefully your RT will not affect you much. You are indeed lucky - you caught yours early - you will be cured.

[tlh]

Sans rt1,

Thanks for the info. When first presented with the option or RT vs surveillance, I was set on the RT to improve my odds. However, I am scheduled to start the middle of next week and the nearer it is to starting treatments the more I am apprehensive about my decision.

I do want to thank you for the optimism of being cured. Even though I hear the same reassurance from many of my friends and family, it seems to be a little more comforting coming from someone who has been there and done that. It's sometimes difficult to put on that tough exterior or brave face for your co-workers (I'm in the military by the way) because everyone assumes that if Lance Armstrong was cured in such late stages then I'm just as good as cured now and let's move on to new business. What they don't understand is that it's me, not them, that has cancer. They can't know the horror of the first time the doctor told me I had cancer. Or the tension you face when waiting for the pathology report. At age 39 I never imagined I would have to see a doctor that had "Oncologist" after his name. If it wasn't for this site and you and people like you this experience would have been 100x worse. Thanks again for the support.

[Sans rt1]

Yeah, it helps to talk with folks that understand. There's a time for being tough and a time like now when you are entitiled to a little understanding.

Cancer is a big deal, even if it is as curable as seminoma. There is uncertainty - slim, but just enough to eat away at you if you let it. A good friend of my wife's, who recently underwent surgery and chemo for breast cancer asked me this weekend if I had cried yet. I said no, that there was no need because it is so treatable and surgery / treatment was relatively minor (compared to her's). She insisted that no, I needed to deal with my grief, that I had lost way more than my right one in this ordeal. I may not need to cry, but I understand what she was getting at. It may be why I find this forum so theraputic (and a good place to look for information and answers).

I chuckle to myself sometimes when I think that a little over a year ago, my niece told me she was going to work for an Oncology Corporation. I had to ask her what Oncology was . Now, I have two of them!

[nowawies]

I'm having to got through all this in a foreign language I speak badly!! I mean I can even understand court rulings in Polish but unexplained onco-jargon in Polish ...
I tend to be sort of straight to the point with people in Polish, which they find culturally offputting. Like just after i/o - "What does cewnik mean?" ... which was quickly followed by me saying "there's no way you're putting a catheter into me mate!!"
I am very lucky with my colleagues at work - and they have been totally shocked by my openness as CANCER is strictly taboo in Poland. It's viewed as an automatic death sentence and only talked about post-mortem.
I don't mention the "testicular" part though - except to a couple of friends. That way some other people know, but know not to bring it up with me. I don't talk to the neighbours about it though.
As for being "human", well I too was in perfect health. 40 years old, kids about to hit teenage years, loving wife, no financial worries at all.

[Fish]

Hi Tlh:

Your odds of recurrence on surveillance might be lower than 20%. I was diagnosed with seminoma at age 42, my tumor was less than 1cm in size and there was no rete or angiolymphatic invasion. My oncologist estimated my odds of recurrence at 6%. I ultimately chose surveillance, not necessarily because of the odds, but because I could not convince myself to get radiated when there was no evidence of active cancer based on CT scans. The surveillance can be stressful, but knowing myself, I would have also have stressed about the long term effects of the radiation, so either way I have something to worry about.

But you can't really make a wrong decision on this.

Best wishes.

[tlh]

It's funny how many different percentages you find when doing a little research. One of my Docs told me that without radiation there was a 20-25% chance of recurrence. Another one told me an hour later that it was more like 5% based on the pathology report. I asked the radiation Doc about the chances of secondary tumors from radiation and he said it was less than a 1% chance. I haven't found anything in the research that I've done that puts it that low. Stats are hard to rely on. I know. The percentages were in my favor for not having cancer being outside the 15-35 year old age group!!

It is all confusing but everyone in this forum has made it much easier. By the way, when I mentioned the single dose Carboplatin (sp) as an alternative to RT I was amazed at the number of Doctors who didn't have a whole lot of knowledge of what I was talking about and the ones that did dismissed it out of hand saying there wasn't enough evidence to back it up even though it's been done overseas for the last several years. Anyway, thanks for the support and help.

[Sans rt1]

I think we need to remember that our oncologists may only see one or two cases of this a year, so they are relying on their information sources. My oncologist faxed my information to Dr. Einhorn at IU for input on recommended treatment. Dr. Einhorn recommended surveillance over treatment eventhough I was Stage 1b with a large tumor, but cautioned my oncologist would need to evaluate whether I was the type that could deal with that kind of uncertainty and would follow through with follow-ups. Otherwise, he recommended either RT or single dose Carboplatin.

My oncologist kind of pushed the single dose Carboplatin over RT, but when I questioned whether single dose was adequate for my stage or if 2 doses would be better (I had done some reading up and seen both quoted but no real information on when one is recommended over the other), he seemed to lose confidence in that recommendation a bit and acknowledged that there was not a lot of long-term data yet on the single dose, but did not think the double dose was warranted. It was at that time that he told me that all three alternatives were acceptable, that I just needed to chose one. He sent me away with some websites to explore, which really did not help much.

One useful tidbit he did give me was that none of the statistics and odds we see quoted are really not all that great because many are based on small sampling, others are based on larger numbers of cases - but some are dated - meaning the RT field and dosages were larger than they are today - larger risk, but probably less chance of reoccurence - but the current smaller field data may not have enough time to really evaluate the odds and risks either. But he said that all in all there is great agreement in the relative odds plus or minus a small bit.

So, I chose to go with the standard RT. Right choice? Who knows, but it was a reasonable choice and I hold onto that fact and go on from there.

[tlh]

Sans rt1,

Thanks for the info. I figured a lot of the stats were outdated when I surfed a few sitles and not one of them had the same figures. I think RT is probabably going to be my option for the simple fact of peace of mind for myself and my wife -- who has been a rock through this by the way!! Like everything else involved with this, I just want to get it done and get past it. Talking here sure helps.

[UK Mart]

From my point of view, when i had my check up last week, the thought of a recurrence didn't enter my mind given the fact that my odds are now below 2%. Whereas if i'd just gone with surveillance i'd have been concentrating/been a bit concerned about the 20% chance of recurrance.

I have great peace of mind knowing that i have minimal odds of anything coming back - personally i just viewed the 20% as a bit of a risk.