Significant changes to NCCN Guidelines Follow-up Recommendations

[S P]

Hey everybody,

My latest article over at the Testicular Cancer Awareness Foundation blog covers what have been some pretty significant changes to the NCCN guidelines recommendations for follow-up intervals over the years. In particular, they've really pulled back on the number of CT scans in the past 1-2 years, to minimize the risk of secondary malignancies from radiation exposure from the scans. If you were diagnosed with TC within the past few years, you should definitely check out the latest NCCN guidelines (version 2-2017 as I type this).

Negotiating Surveillance and Long-Term Follow-up for Testicular Cancer

Too many potential scenarios to go through, but some of you might not need any more CT scans at all, and might just be able to go with chest x-rays, which literally take a minute, and no stupid oral contrast or IV lines and crap, and a drop in the bucket of radiation compared to a CT scan.

Bottom line, just check the latest guidelines, and compare to what you're doing now. You might be able to make some adjustments in your favor (fewer scans and appointments). I also cover some suggestions on developing your 5 year surveillance exit plan, as the guidelines only run out to 5 years. What to do after that? Covered on the blog.

[biwi]

Great article, thanks for posting! At my next checkup I will have to revisit the surveillance guidelines with my onco. I think after year 5 I probably will do something similar - annual physicals and tumor markers with my primary care provider, no oncology visits or scans. Being a no-baller now I won't need follow up ultrasounds, and already am on TRT and hormone monitoring.

[Trekga]

So informative. Thank you for posting over here! I will share with my son's Oncologist.

[worried_mom]

I'm glad this is getting recognition! After my son's diagnosis we opted for surveillance with his urologist, after the first year we switched to an TC oncologist (Dr Gerl - he has worked with Dr Einhorn und Dr Nichols in the past) and we are still doing surveillance. Anyway, his oncologist does x-rays and ultra sounds, the follow up appointments are every 2 months for the first 2 years including blood work. Dr Gerl explained to us, that TC has a route and he examines these organs vigilantly via ultra sound and x-ray. Also, with the follow-up appointments so close, it's easier to catch a recurrence.
Thank you for posting Steve!

[S P]

I'm glad this is getting recognition! After my son's diagnosis we opted for surveillance with his urologist, after the first year we switched to an TC oncologist (Dr Gerl - he has worked with Dr Einhorn und Dr Nichols in the past) and we are still doing surveillance. Anyway, his oncologist does x-rays and ultra sounds, the follow up appointments are every 2 months for the first 2 years including blood work. Dr Gerl explained to us, that TC has a route and he examines these organs vigilantly via ultra sound and x-ray. Also, with the follow-up appointments so close, it's easier to catch a recurrence.
Thank you for posting Steve!

For Stage IA pure seminoma, he should still be getting abdominal/pelvic CT scans every so often, although they're really trimmed down on those too. I see that he is from your signature. They used to call for them every 3-4 months, but now you can go annually if you want. I see that chest x-rays are "as clinically indicated" now, so even that's optional or maybe only done if the lungs don't sound clear or there's symptoms. In general, they're depending more on the physical examination skills of doctors and using their instincts to guide them, rather than carpet bombing patients with tons of CT scan radiation all the time.

I haven't compared this specific classification with the old guidelines (I have them archived on my computer at home), but I've seen across the board changes to follow-up schedules especially in the past couple of years. As I wrote in my blog, I about cried when I saw that my 27 chest x-rays over the years would only be 7-9 now, but water under the bridge now. LOL

[S P]

Great article, thanks for posting! At my next checkup I will have to revisit the surveillance guidelines with my onco. I think after year 5 I probably will do something similar - annual physicals and tumor markers with my primary care provider, no oncology visits or scans. Being a no-baller now I won't need follow up ultrasounds, and already am on TRT and hormone monitoring.

Yeah the testicular ultrasounds are one of the things where I was like, why aren't they recommending these for follow-up? Well, they are now.

Not mentioned in my blog, but I have a history of inguinal hernia issues, and had bi-lateral repair surgery done two years ago now. The pain from that, especially on the left side where I still have a testicle hanging, was incredibly unnerving because it felt 95% the same as then pain I felt in my right testicle when I was diagnosed with TC. It drove me into full freakout mode a couple of times, but it's always just been hernia pain and not a second TC. Still, just for peace of mind purposes and earliest possible detection of anything amiss, an annual scrotal ultrasound done at annual physicals makes a tons of sense for TC survivors.

[Davepet]

Yeah the testicular ultrasounds are one of the things where I was like, why aren't they recommending these for follow-up? Well, they are now.

Sorry to say this again, I have said many times in here that I expect we will likely see many more cases of 2x warriors as the years go by. Survival rate of 1X was 10% or less when I had my first in the mid 70's. It took me 35 years to get my second TC. I simply don't think the data is sufficient to even try to predict the chances of 2x after 1X, not enough guys have survived long enough to know. Periodic U/S sounds like a good idea to me, it's relatively inexpensive, absolutely safe, & only a bit embarrassing. I think they made the right decision.

Dave

[S P]

Dave, yeah the statistics I've seen for the rate of men getting TC twice have been all over the map. I don't like to quote any numbers, but personally, I think it's more common than some of the statistics have shown.

[unotesticulo]

Given the risk of getting a cancer in testiculo dos, I have to wonder if it makes sense to have a pre-emptive second orchiectomy. Of course, I imagine that kills fertility, but at some point, that won't be an issue. Also, I guess it would mess with your hormone levels. Maybe not worth it. I suppose it depends on those odds.

[JeskiM69]

Uno,

I had that same thought after I finished BEP....to get a pre-emptive Orchiectomy on my remaining guy.

I asked my Urologist about it at a checkup and she was dead set against it. You would need to go onto Testosterone treatments for the rest of your life, the surgery would be unnecessary, no insurance would cover it, it's likely to clash against medical ethics, any/all surgeries carry risks, time, money, fertility, etc.

It's best just to monitor the remaining guy....at least we are at the point that we are more aware and more apt to find something amiss anyways.

- Matt

[Davepet]

Given the risk of getting a cancer in testiculo dos, I have to wonder if it makes sense to have a pre-emptive second orchiectomy. Of course, I imagine that kills fertility, but at some point, that won't be an issue. Also, I guess it would mess with your hormone levels. Maybe not worth it. I suppose it depends on those odds.

Yes, you would need testosterone for the rest oif your life, & would be unable to naturally become a father. Considering that many may never get #2, and that those that do may have many years before it happens, plus having a reliable detection method & high degree of curability, I doubt anyone would seriously consider an early removal.

Dave

[biwi]

I would bet that most people with TC#2 generally catch it quite early, being very vigilant about self examination. Catching it in stage 1 or 2 has very high odds for cure.

[unotesticulo]

Very high odds of cure, sure. But if you've already done 3xBEP or 4xBEP, the prospect of doing another 3 or 4 BEP's doesn't sound so light. I don't know what 6-8 rounds of BEP does to you, but I shudder at the prospect. Hell, a lot of us (myself included) choose RPLND as primary treatment over adjuvant chemo because the unknown effects of 1xBEP scares us. Dave, I agree with you in the case of people who are still chemo-naive, that few would even consider it. But for those post-chemo, I don't think it's such an open-and-shut case.

[Davepet]

I'm not sure if BEP would be an option for 2x if you had it the first time.

[biwi]

Yeah, you guys make a good point. The BEP would take care of the cancer (its new in tc2, not chemo resistant), but the cumulative side effects of 3 more rounds is likely to severely increase side effects and chance of leukemia later.