Second Opinion at Sloan-Kettering

[djmac]

Hi All,

Two recent developments... In mid-November I met with the Rad-Onc at UMDNJ-Robert Wood Johnson Medical School. He told me the risks and benefits of radiotherapy and told me that he does only paraaortic for seminoma, but he also appeared comfortable with surveillance for my particular case.

Last week, on November 30th, I finally made it to Sloan-Kettering for a second opinion on my scans and pathology. The experience was as many here have described. Until now, I was always in waiting rooms with men and women much older than I, and at SK nearly everyone was a relatively young guy. Most seemed in pretty good spirits, some seemed somber... Lots and lots of people in the waiting room. I eventually (briefly) saw Dr. Sheinfeld. He reviewed my scans and arranged for a pathologist to review the slides that I had brought. He was the first Doctor that actually said "I think you'll be fine", but he was also strongly in favor of radiotherapy. He too, told me of the risks, but felt they were minimal relative to the benefit. I've been struggling with this ever since, but I'm still leaning towards surveillance. He mentioned that the final outcome should be the same, either way, but he hates the odds of recurrence without radiotherapy. He also insisted that if I were to do radiotherapy with them, it would be "dog-leg" so that's including the pelvic region.

After leaving SK, I decided that I would make my final decision with the SK path report, feeling that if they saw LV invasion, I would probably go with the radiotherapy.

I got that report today... everything was identical to my original...NO LV invasion observed (yay). However, no mention of the intertubular GCN was made that was on the original (while inTRAtubular GCN was mentioned). Also, they estimated the tumor to be 2.1 cm in it's largest dimension, as opposed to the 1.5 cm that the original report claimed. When I had measured it on the slide, I saw that it was 1.5 cm as well, so I'm wondering if SK uses different criteria. Also, SK path report mentions the rete testis (no involvement) but says that the "tumor abuts the rete testis".

Oh well, I guess it leaves me still torn. Xmas is coming up, and my first CT scan is set for Feburary 20th, at this point I'm just as inclined to stay the current course of surveillance...

Regards,

djm

[dadmo]

djmac:
I sure wish I could help you, but this is one of those times where you have to do what makes you feel best. Just remember there is no really bad decision here. For what it's worth I would choose surveillance and save the radiation for when youre sure it's needed.

[mikeygti]

DJM

One way to look at it is you DO have choices ! You are not backed into a corner clearly needing more treatment. Whatever you do choose,you will be fine .

Best Wishes

[rhoon]

My name is Robin and I am in your exact shoes. My right orchiectomy on Thanksgiving eve, and diagnosis of seminoma 2cm on my birthday Nov 28. My urologist and oncologist leaning strongly towards radiation, and me changing my mind with everything I read and everyone I talk to. I think if I met with an astrologist I might think praying to the stars would be a good option!
It seems many moderators lean towards surviellance on the sites I have visited, and this strikes me. My wife thinks I might go crazy if I choose surviellance.
Is it true that most recurrences of Seminoma are treated successfully with radiation alone? Is the tx dose for recurrence comparable? Is it likely that seminoma could grow to greater than 5 cm in between every 6 month ct scans?
Would I then need chemo?

[djmac]

Is it true that most recurrences of Seminoma are treated successfully with radiation alone? Is the tx dose for recurrence comparable? Is it likely that seminoma could grow to greater than 5 cm in between every 6 month ct scans?
Would I then need chemo?

Hi, it is true that most recurrences of Seminoma are treated successfully with radiation alone (about 80% I think). If greater than 5 cm, or multiple lymph nodes or lung mets, then you would need chemo. Everyone's cancer is different, so it is possible that a seminoma can grow fast...however, you should be doing scans every 3-4 months the first 3 years, NOT every six months.

I talked to a friend of a friend recently who went through 5 years of surveillance with seminoma so far, and he says that the first year was tough, but it got much easier.

Good Luck in your decision, I know that if I see any sign of spread (smallest lymph node enlargement that can be detected) then I'll get nuked!

djm

[rhoon]

If it doesn't get easier soon I will have to abandon surviellance. My son is due in March and I can't be consumed by this in the midst of caring for two children and a post-partum wife.
If the numbers I read are correct, I may have an 83 % chance of being cured right now. If I take radiation it increases to 96%. Thats only a difference of 13% for getting nuked, which can't be ok for my body! I am so torn. And I'm tired of crying, and fighting with my family over it. I have to make a decision and be ok with it whatever it is.

[Scott]

I have to make a decision and be ok with it whatever it is.

That's really the key. Pick a path, be proud of the decision, and don't look back and ask "what if." Either road leads to cure.

[Already Bald]

DJ and Rhoon,
You guys both have some pretty tough decisions- I wsa in a similar situation with my case:
After my right IO, the path came back as non-seminoma, and now I was faces with a decision of surveillance or RPLND, knowing that I had chemo as a back up.
So, I went to Sheinfeld as well for a second opinion- and after that meeting and considerable soul searching, my wife and I decided on RPLND.
It was in a way thearaputic to make that decision for treatment, I'm the type of guy that likes action, and waiting and watching just seemed dismal to me. Getting the thing scheduled just seemed to life my spirits a bit.
Another thing to consider is in other parts of the world I might not have been offered the choice of RPLND- it may be considered not medically necessary in certain Socalized countries, at least in my case.
As it turns out the damn cancer bypassed the nodes anyway, and now I'm in chemo for my lung tumor. But even now I'm glad to have had all the treatments that I could possibly have- so going forward the treatments should not be as complicated. (Post chemo RPLND is a bigger deal).
Radiation is a big deal, and can change DNA, but that is mostly in centers that use older equipment, and everything at Sloan-Kettering is state of the art.
Good luck,
Either way you both will be fine.

[djmac]

Either way you both will be fine.

I know, I'm beginning to stop with the "what-ifs". I asked my rad-onc if one could theoretically get adjuvant radiation after the surveillance has started, and he said "of course", but then added that it never happens because people generally choose one path, or the other, and stick to that . Ah well, I'm moving on, hoping for the best, but not fearing the worst.

"A coward dies a thousand deaths, but a brave man only once"

djm

[rhoon]

djmac what is your surviellance schedule? My urologist does not recommend tumor markers since mine were not elevated pre-op, and he says only 10% of seminomas raise markers anyway. Does this make sense to you guys?


I may choose surviellance initially, and see if it gets easier. Maybe Prozac and surviellance would be a good choice!!

[Scott]

Nope, you should check for markers. From the TCRC surveillance page: "In particular, if your doctor says that you do not need to check tumor markers, tell them that that is not true. In almost every case it makes sense to watch tumor markers." You might ask him to consult with a testicular cancer expert.

[rhoon]

Scott- thanks. If I choose surviellance I will insist on tumor markers. I am now leaning strongly towards surviellance, but tomarrow I may feel differently. My wife is sure to be upset again that I cannot definitively decide right now. She would like to have a plan.

[djmac]

Scott- thanks. If I choose surviellance I will insist on tumor markers. I am now leaning strongly towards surviellance, but tomarrow I may feel differently. My wife is sure to be upset again that I cannot definitively decide right now. She would like to have a plan.

Rhon, surveillance is a plan. The positive is that you don't get irradiated unless you absolutely need to, the negatives or the psychological toll it takes on you and the fact that there is always the risk of chemo later down the line... but remember, if you get radiation now, later chemo becomes your ONLY choice further down the line should you recur.

Some argue that it is cancer, and should be treated aggressively. I would argue that a radical I/O is pretty aggressive...

Incidentally, my doc agreed that tumor markers are nearly worthless in our cases, but he added that no doc in their right mind would put you on a surveillance protocol without tumor markers. You should maybe consider other docs...

Regards,

djm

[leaffan-Dave]

confusing me!

Okay. You guys have confused the hell out me. I had my appointment with my urologist (after having my right one removed) on thursday and he said that as far as the path result goes they "got it all". Stage 1 Seminoma with no invasion. Do you guys think I will still have to do radiation treatments? I have not had my appointment with the cancer clinic yet and this may take 2-3 weeks to get so now I am worried that I will still have to do further treatments and I was thinking that all was good. What is your opinions?

[Scott]

With stage I seminoma, there's an 80% chance you're already cured by the orchiectomy. Your treatment choices are adjuvant radiation therapy or surveillance.