Chemo or Radiation?

[DougC]

I have had my left testicle removed and have been told that I have Stage I Seminoma. I am due to visit the oncoligist tomorrow and need some advice.

I have been reading some reports which say that adjuvant chemo may now be a better choice that radiation. I have read specifically one course of carboplatin or 2 courses of Paraplatin have equal or less chance of recurrance. Also the chemo is over much quicker and eliminates the side effects of 3 weeks of radiation. Furthermore it seems that use of chemo will eliminate the risk of other cancers being caused by that treatment.

I would appreciate any opinions, or better still facts on this and experiences of anyone out there. If anyone could answer today that would be great as I would like to know before my visit to the oncologist tomorrow. Sorry about the short notice. Even if you see this after tomorrow please give me your inputs.

Regards
DougC

[Scott]

Although single-agent carboplatin made the latest revision of the NCCN guidelines, note the "category 3" disclaimer, meaning, "There is major NCCN disagreement that the recommendation is appropriate."

[Fed]

When I was discussing treatment options with my med onc a couple of months ago, he said that he would only consider recommending carboplatin for seminoma if there was L/V invasion (pT2 w/ L/V at least). I don't think there is a standard considering the marked division between pro-carbo and anti-carbo docs. Based on the literature, there is compelling evidence on both ends of the spectrum (I believe the papers are referenced in the Resources section of the Forum).

What are the details on your path report? My decision to pick surveillance (after seriously considering adjuvant radiation) ended up being based entirely on the pathology and the advice of multiple docs.

Hope this helps a bit. All the best ,

[sin]

perhaps this is useful also:

http://annonc.oxfordjournals.org/cgi/content/full/15/9/1377

[TimsWife]

Carboplatin

Hey Doug-
My husband made this choice- Carboplatin. Everyon ahs really strong opinions sbout it & I feel that you ahve to go with Doctor's recommendations and what you feel is the best fit. The reason we choose Carboplatin is my husband refused Radiation because he was scared to death of a secondary cancer- he did not want to swap out a highly treatable cancer for a potentially no so treatable cancer down the road- that left us with Survelliance or Carboplatin- I could nto live with a choice of suvelliance- hence we choose Carboplatin! Best choice for us.

[Sans rt1]

I'll add my two cents worth. When I did my research, I found articles and study papers that compared the benefits and risks of the one or two shot chemo vs. radiation. They showed roughly equivalent odds of recurrence, and the ones I read showed both actually had risk of side-effects and secondary cancers that did not seem too far apart - yes, RT was higher in that respect, but there was more follow-up data with RT to assess the long-term success than there was for the chemo option (but then again, the long-term data on RT probably also included the dog-leg with the paraortic only RT pattern, so that may be somewhat flawed too).

I know it is a tough decision, but either treatment option is reasonable - as is surveillence if you were pT1 and are the type of person that can handle the uncertainty of a higher risk of recurrence, etc. The benefit is that you don't get treated if you don't need treatment. Treatment or no treatment, what kind of treatment - it is all playing the odds - that is what makes it so frustrating to choose - no one can guarantee that any choice will be the right one for you.

My tumor was large with invasion, defintely pT2, so I was not comfortable with surveillence. At the time I chose RT based on my doctors recommendations which were in line with what I had read on my own. A reasonable decision. Looking back on my decision 10 months later, I know it was a reasonable decision. But, I have had an extremely rare side effect of scar tissue forming in my back that has been problematic - but I am working to make it better with exercise, so perhaps in the long run this negative will turn into an overall positive for me. Still, if I had it to do over I might have made a different decision - or at least I might have considered and researched the single-dose chemo a little harder before making my decision.

I am definitely no expert, but looking at the NCCN follow-up protocol, the single dose follow-up has a far more extensive follow-up procedure with very frequent abdominal+pelvic CT (every 3 months for first 3-4 years) compared to those that have had paraortic RT (pelvic CT only once a year for first 3 years). Perhaps this just reflects lack of experience and confidence in that treatment course in the U.S. compared to, say, Europe, but it looks like over time you will get significant radiation exposure even with that course of treatment.

You can drive yourself crazy trying to make the right choice between the three main options of RT, surveilence, and single-dose. Sounds like you are are close to making a decision - if you have considered all the risks and side effects, and understand the future followup requirments and will abide by them, then your decision is reasonable.

Good luck to you.

[Already Bald]

Doug,
Welcome to these forums, you've come to a great place for guys like us. I don't know what to tell you about rad vs chemo, just listen to your doc's advice and suggest you get a second opinion.
Try not to stress out, take this thing one day at a time.
Tell your doctor what you are thinking, and ask about all of your options. Also, a second opinion will never hurt.
You will learn a lot on these forums, just as I just learned that adjuvant chemo may be a better choice for Stage 1 Seminoma.
Best of luck, keep us posted.
Joe

[TSX]

Furthermore it seems that use of chemo will eliminate the risk of other cancers being caused by that treatment.

Doug,

Any chemo is still considered a risk for secondary cancers, the question is to what degree. As far as I know, there is no long-term data quantifying this risk for Carboplatin used as adjuvant therapy for stage I seminoma. If there were, and the data showed lower risk and equal or better efficacy than radiation, I think there wouldn't be such divided opinions on which treatment is appropriate.

Did your doctor propose surveillance as an acceptable alternative? Personally, that's what I would choose in your situation. Seminoma progresses slowly. As long as you follow a strict surveillance protocol, you would catch a relapse in plenty of time to treat it at that time.

-TSX

[DougC]

Thanks to all for your advice and encouragement.

I visited the oncologist last Friday. He was an RT specialist only, which I only found out when I met him. I assumed all oncolgists dealt with both RT and chemo but I guess that's not how it works.

Firstly, he does not recommend survellience. I got the impression he never recommends survellience. (or is there any specific reason why he might not have recommended survellience for me?) He recommends para-aortic RT with a dose of 25Gy over 17 days. For those of you who have Seminoma, Stage I what RT regime have you had?

I have read of short course para-aortic radiation with a dose of 20Gy in 8 fractions over 10 days. (Not sure why 10 days if there are only 8 fractions. Can anyone explain what that means?) The study I read supported this as an optimal safe and effective protocol. Is the above short course approach common? Seems like a lot less than what's been recommended for me? Any opinions?

I have made no desisions yet and now have an appointment on Monday with another oncologist who specialises in chemo. I want to get his views on the one and two dose carboplatin regime. His office is right next door to the guy I saw on Friday, so that is convenient. The only problem is I will need to pay another consultation fee. Going rate here is €150 per consultation. How does this compare with other places? My insurance only partially covers consultation fees but will fully cover all subsequent treatment. Anyway I guess what ever it costs I need to check both options.

Any opinions on any of the above are welcome.

[TSX]

Firstly, he does not recommend survellience. I got the impression he never recommends survellience. (or is there any specific reason why he might not have recommended survellience for me?) He recommends para-aortic RT with a dose of 25Gy over 17 days. For those of you who have Seminoma, Stage I what RT regime have you had?

I have read of short course para-aortic radiation with a dose of 20Gy in 8 fractions over 10 days. (Not sure why 10 days if there are only 8 fractions. Can anyone explain what that means?) The study I read supported this as an optimal safe and effective protocol. Is the above short course approach common? Seems like a lot less than what's been recommended for me? Any opinions?

I have read that in Europe it is common to do higher dosages but fewer treatments, compared with treatment in the US. What I've seen here is usually 25Gy over 15 treatments for stage I seminoma, or 35Gy over 20 treatments for stage II seminoma.

You'd think there would be an oncologist who would deal with both chemo and radiation, but I haven't seen it. You'll get one or the other. From what I've seen, groups that treat TC are generally made up of three kinds of doctors: medical oncologists (the chemo specialists), radiation oncologists, and urologists. The urologists are also surgeons and handle the orchiectomies and RPLNDs. Kind of one-stop shopping for all your TC treatment needs.

My experience, and I saw a lot of doctors before making a decision, was that medical oncologists almost universally recommend chemo and radiation oncologists do the same for radiotherapy. That is, when there is the option of using either, as there is in your case. There's an old saying that applies here: "To someone with a hammer, everything looks like a nail."

It bites that you have to foot the consultation fee. With my insurance it was just the standard "specialist" copay, $30 per appointment in my case. I highly recommend you speak with an oncologist with a lot of experience treating TC, someone considered to be an expert. If it is a second opinion, it would also be good if the doctor were outside the group of the doctor who provided the first opinion. In my case, I did as you are doing and met with a radiation oncologist and medical oncologist from the same group. I considered this a single opinion really - these doctors were friends and comparing notes on my case outside of my appointments. It's not a bad thing in my opinion, but to get a good second opinion I felt it would be better to go to a completely different group. I did this at a place that sees a lot of TC cases, and handled it the same way - by meeting with both a medical oncologist and a radiation oncologist. Taking such a strategy seems like it would be an expensive proposition in your case, but try to see at least one TC expert before making a decision.

Your radiation oncologist opposing surveillance doesn't seem to be up to date on trends in treatment. All the more reason for seeking out an expert.

From TCRC's TC experts page:

Dr John Thornhill
Department of Urology
Meath Hospital
Dublin, Ireland

Dr John Crown
Oncologist
St Vincent's Hospital
Dublin, Ireland

Dr. Crown would be more appropriate in your case, since you won't be dealing with any more surgery. Make a road trip if necessary.

-TSX

[Fed]

DougC,
It sounds like the Tx that is being recommended is the standard of care. That said, I should point out that the established standards of care need not represent what might be more beneficial to someone in particular. Going "strictly by the books", I had read that with what I had based on pathology (IA seminoma), one could do with surveillance (as long as you remain vigilant and follow all appointments) or get RT. Every single doc I spoke to (my urologist, two med oncs, a rad onc -all oncs from DFCI) were saying that RT may very well be overkill. I also got a second opinion from my fraternity brother who's a urologist that trained at Sloan, and both concurred with the assessment from the Farber. It took the expert opinion of multiple physicians to point me in the right direction. You're asking all the right questions, and that is great.
It does blow that you have to shell out another hunk of cash for a second opinion. Nonetheless, my take is that this is your life, so no expense should be spared as long as it helps point you in the right direction.

[Krokar]

I have been reading some reports which say that adjuvant chemo may now be a better choice that radiation. I have read specifically one course of carboplatin or 2 courses of Paraplatin have equal or less chance of recurrance. Also the chemo is over much quicker and eliminates the side effects of 3 weeks of radiation. Furthermore it seems that use of chemo will eliminate the risk of other cancers being caused by that treatment.

Regards
DougC

Dear Doug,

I had Paraplatin chemo in 2004 for I stage Seminoma, but like I'm living in Europe it looks that changes in treatement here are accepted faster then in USA. At that time I was almost only one on forum but now you can find that even dr. Einhorn takes Paraplatin like one option for treatement.

If you decide for Paraplatin you can ask me whatever, I will share my experiance with you.

Good luck

[Sans rt1]

I certainly found figuring out what doctor does what very confusing when I was going through it all too. I wish I understood it better when I was where you were so I would have asked better questions.

The RT you were recommended is standard - 25Gy over 17 days - that is over 15 days with two weekends off. That is what I had. My Rad Onc told me that it was the total dosage, not how much each time that mattered. he told me that if I had severe nausea, he would lessen the daily dosage and add more days to make it better, but we never had to.

You are getting lots of advice, which hopefully will help you with your questions. Did the pathology report contain any staging information, such as pT1 or pT2 (basically meaning size and development of your tumor - whether it had vascular and lymphatic invasion - which gives an indication of the likelihood of it having spread microscopically)? That information would really help decide if any treatment is needed, or whether surviellence is reasonable (depending on you). From what I read, even the Chemo had side effects including increased risk for secondary cancers, so that should not be taken too lightly either.

My oncologist faxed my information to Dr. Einhorn and got his opinion my oncologist's recommendation - which based on my pT2 with clear invasion and large size - felt treatment was reasonable, and said either RT of single dose would suffice. Anyway, remember that your oncologist probably only sees one case a year of TC, so depending on how many he has actually seen, he may be referencing the same information that you are to make his recommendation. It is not unreasonable for you to ask that he get the opinion of a true expert.

Anyway, I just hate to see people get treatment if they really don't need it - it affects your body, adds to your overall risk, and depending on what treatment you get, can lessen your options for treatment of other cancers in the future. But, if you are pT2, or not the kind of person that can deal with knowing that you have a higher chance of it coming back, or you don't think you will be flawless about your follow-up visits , then treatment is reasonable.

[DougC]

I visited the chemo oncologist today. He was not in favour of Carboplatin and and still recommended para-aortic RT. His views on carboplatin were the same as most of those in the anti carboplatin articles I have read. He worked under George J. Bosl when working in the U.S. GJB is anti carboplatin so that probably help explains my doctors view on this treatment.

As a a chemo oncologist he is not an RT expert but did agree that 17 days of 25Cy could perhaps be reduced. He seemed more knowledgable than the RT guy I visted last week and also more interested. He wants to look at my CT slides himself and requested these from the hospital where they were done.

I am aware that I had no vascular invasion, not sure about size of tumor as that is not on my path report - not sure why. He is also going to request my ultrasound scan results to see if that reports size of the tumor. Maybe survellience is agood option for me but I am not sure that I could live with it.

He has also recommended that before making a final decision on my treatment he would like to do another CT scan and bloods to confirm the first set of tests. I am going to have that done in 2 weeks time which will be six weeks since my I/O. After that he will see me again and in consultaion with the RT Oncologist we will decide the best approach. He is willing to do carboplatin if I want it but is just not recommending it - same story as most anti carboplatin articles - RT is a known and understood - Carboplatin is less known.

He did make some interesting points about RT which was that data on secondaries caused by RT often includes patients from way back when RT was poorly managed and controlled. Today the procedure is much more controlled and probably ensures less risk than before.

[Fed]

I am aware that I had no vascular invasion, not sure about size of tumor as that is not on my path report - not sure why. He is also going to request my ultrasound scan results to see if that reports size of the tumor. Maybe survellience is agood option for me but I am not sure that I could live with it.

Hey Doug,
You seem to be a really good candidate for surveillance, especially because there is no L/V invasion. The benefit is that you don't receive treatment that may be overkill, namely because there's an 80% chance you are already cured; and, as long as you follow the surveillance schedule to the dot, you can catch and treat a relapse if it were to occur. The drawback is definitely increased anxiety coupled to the "mental effects" of having had cancer.
I'm a little over three months post-op, and I recently had my first set of surveillance tests, and I was clearly more on edge than usual. One thing that has definitely helped relieve the stress is that I have a good treatment team. My oncologist gives constant updates to my urologist and my GP, and everyone is well-coordinated. I guess that gives me confidence that if anything odd were to appear, I know I'm in good hands. I originally thought that surveillance was not for me, but it's actually not as dreadful as I thought it would be.