A little advice please...

[Wireless00]

After receiving my path report and finding out that I had T1 pure seminoma, that was contained to the testical, with no lymphovascular invasion and negative for malignancy (not sure what this means, was the tumor benign?). The mass was measured at 2.5cm. I am trying to decide whether I should go through with radiation or decide to just do observation. I believe that I read somewhere that, in a case like mine, if the mass was over 5cm that the radiation should be the choice. I understand that Fed's situation was similar to mine and he has elected observation (don't remember how large his mass was).

Is what I read correct about making a decision based on the size of the tumor? I will be set up with an appt with the oncologist soon and am trying to find out as much as I can before the appt. I don't want to put myself through the side effects of RT if it isn't really necessary. I also understand that if there is a recurrance that the treatments would need to be more aggressive.

Just not sure which route to take.

[Fish]

Hi Wireless:

If I remember correctly the 3 factors associated with lower risk of recurrence for seminoma are:

Tumor less than 4cm
No lymphatic or vascular invasion
Age greater than 35

I met all 3 criteria for my second TC and have been on surveillence for almost 4 years with no problems so far.

I had the same feeling as you, not wanting radiation unless it was necessary. Surveillence is a reasonable option and with close followup, any recurrence can be sucessfully treated - sometimes with radiation, sometimes with chemo.

It's not an easy decision, and surveillence can be stressful, but even with radiation, you still have to do followup.

Best wishes,

Fish

[thedster]

Your choice

Hi Wireless
I think from reading your message you are in a similer position to myself. I was diagnosed with Stage 1 TC pure seminoma non invasive to surrounding tissue as far as they could tell. I've had the obvious surgury to remove the offending testicle but reality is that without removing lymp nodes they cannot be sure.

I was given the choice after the surgury of radiation, chemo or watchful waiting. The docters here is Japan do not like radiation so it came down to two choices. Chemo or wait.

As my family have a bad history with cancer I opted for that choice. Not very great fun. But I took on the fight battleing with everything I had.

My lump was 5cm so over the safe zone or rather in the region of not good. Given the fact that it came on so fast (10 days from diagnosis to surgury) and the family factors it made sense to me.

However you are now in the 'Testicular Cancer Hell Zone'. Do you take aggressive treatment or watch and wait.

The decision of which will have to be yours and its a very personal choice. Each and every person on this forum will support you with that.

I've probably not helped much with your choice, but hopefully given you some more information on it.

all the best, and remember, you will win! You have the best care available and will win this.

l
d

[Already Bald]

Hi Wireless
I think from reading your message you are in a similer position to myself. I was diagnosed with Stage 1 TC pure seminoma non invasive to surrounding tissue as far as they could tell. I've had the obvious surgury to remove the offending testicle but reality is that without removing lymp nodes they cannot be sure.

I was given the choice after the surgury of radiation, chemo or watchful waiting. The docters here is Japan do not like radiation so it came down to two choices. Chemo or wait.

As my family have a bad history with cancer I opted for that choice. Not very great fun. But I took on the fight battleing with everything I had.

My lump was 5cm so over the safe zone or rather in the region of not good. Given the fact that it came on so fast (10 days from diagnosis to surgury) and the family factors it made sense to me.

However you are now in the 'Testicular Cancer Hell Zone'. Do you take aggressive treatment or watch and wait.

The decision of which will have to be yours and its a very personal choice. Each and every person on this forum will support you with that.

I've probably not helped much with your choice, but hopefully given you some more information on it.

all the best, and remember, you will win! You have the best care available and will win this.

l
d

Am I reading that you chose chemo?

[Already Bald]

After receiving my path report and finding out that I had T1 pure seminoma, that was contained to the testical, with no lymphovascular invasion and negative for malignancy (not sure what this means, was the tumor benign?). The mass was measured at 2.5cm. I am trying to decide whether I should go through with radiation or decide to just do observation. I believe that I read somewhere that, in a case like mine, if the mass was over 5cm that the radiation should be the choice. I understand that Fed's situation was similar to mine and he has elected observation (don't remember how large his mass was).

Is what I read correct about making a decision based on the size of the tumor? I will be set up with an appt with the oncologist soon and am trying to find out as much as I can before the appt. I don't want to put myself through the side effects of RT if it isn't really necessary. I also understand that if there is a recurrance that the treatments would need to be more aggressive.

Just not sure which route to take.

Everyone has a different thought process on these decisions- and sometimes there is not any one right answer. (If there was then we wouldn't have a decision to make, the doctors would just treat us).

I happen to be of the school of thought that anything you can do- ANYTHING to avoid the possibility of future chemo is the right choice.
Again, that is my opinion, and by no means is it the "right" answer.

Remember, if there was a "right" answer- you would not have a decision to make.
All the best,

[Sans rt1]

Wireless - -

Congratulations, looks like you caught yours early. Mine was a bit more advanced (seminoma, 4.3 cm, invaded, pT2), but my doctors still disagreed and it was very confusing for me. I chose RT - conservative treatment, could have choosen either of the other alternatives, but it was a reasonable decision.

Read up on the alternatives and consider their benefits and risks. RT certainly affects your body and has long term risks, but so does the chemo options. When I went through all of this, my doctors presented the single dose as an option, but said it did not have a long track record to clearly state its success and risks. I did my reading and asked about two doses rather than single dose and they told me it was not done - which I have learned since then is not true. But, even the chemo has physical and long term risks. Watchful waiting is a good alternative for pT1 because you don't get treated if you don't need to be treated. Some people have difficulty dealing with the uncertainty that a 20% chance of recurrence presents to them. Also, you need more frequent followups - and you need to be able to keep current with those - and over time the radiation from the frequent CT's and Xrays add up too.

The ultimate decision is up to you as to treat or not, and if so what type. Knowledge is your friend in this, so read up and ask questions - this site is an excellent source for information (I wish I had found it when I had to make my decision). Don't let your doctors tell you what to do, and don't let them avoid questions or give you general answers. Some oncologists and urologists only see a case or two of TC a year, and actually are referring to the same protocols you have access to on the internet (I caught my oncologist using an outdated version). Here is a good reference to be familiar with:

http://www.nccn.org/professionals/physician_gls/PDF/testicular.pdf

Good luck to you.

[Fed]

I don't know how I missed this thread earlier today.

My viable tumor was 1.3 cm. I did have three other masses ranging in size from 0.8 cm to 1.8 cm, but they were completely necrotic (in other words, dead). Being the geek that I am, I calculated the volume of tumor within righty, which came up to about 40%; I though that would be cause for concern. My best friend, who is a urologist that trained for some time under Joel Sheinfeld at MSKCC said size wasn't as important is invasion, since that is the real evidence of spread (and that makes sense to me now, since that point was driven across at a tumor histopathology workshop I attended last month).

I was dead-set on getting XRT, but Dana-Farber refuses to give XRT to pT1 seminoma patients. They will only administer it if you have rete testis or L/V invasion, which I believe makes you automatically at least pT2. If I had insisted, I probably would have gotten my way, but I had the recommendation of two medical oncologists, a radiation oncologist, my urologist, and my second opinion from Sloan. That's 5 docs, incuding an external one, so I really couldn't argue against that. Adjuvant chemo (2 x carboplatin) wasn't even an option on the table, as they would have only considered it had I been at least pT2.

Although I was initially apprehensive about following a strict course of surveillance, it really hasn't been all that bad. Yes, there is some anxiety before every lab, but the knowledge that I have an 80-85% chance of having been cured by the I/O alone actually helps allay my concerns. Of course, I follow my schedule to the T, and if, for some reason, I were to relapse, I am confident I will catch it early enough to bring in whatever artillery I need since I still have all weapons at my disposal (XRT at higher doses for lymph node mets or chemo for a more advanced case).
The decision is tough because you have no bad choices, but it should be all yours. You are doing well by keeping yourself well-informed. Keep firing away with questions. Many of us have gone through this struggle.