Starting to disagree with my doctor. What do you all think.

[dcalandrelli]

Most of you know from my previous posts my post chemo follow up showed all Lymph shrunk below 1 cm and 2 of my 3 blood markers normal. AFP was in the high teens but not 25. My doctor called yesterday and they are seriously considering RPLND based on the previous results. Their reasoning is "you are already in a good place so the tumor board thinks we should treat aggressively" since the tumor marker went up.
Einhorn has already chimed in saying based on those results he believes there is zero chance of persistent cancer. I sent him the email exchange between Einhorn and myself shortly after. I mentioned on the phone our exchange and he said well Einhorn is the world renowned expert. To me the surgery seems a bit too aggressive based on current results. They didn't seem to really care whether or not the blood results reach 25, but to do the surgery to make sure it doesn't. Really hoping my blood goes down significantly because my doctors at this point really want to send me to surgery and I'm not sure it's the best course of action.

[Tarc79]

I'd do weekly AFP tests before deciding on surgery. If there is even slightly an increase, then, go with it. Yes, this is a big surgery, but, not as crazy as it sounds. Nerve sparing is important, hence, you need to be in experienced hands. If Einhorn is 0, and your doctors are 10 in an aggressiveness scale, I'd personally be a 7. I've had a great experience with Dr. Foster in Indiana.

[dcalandrelli]

Yeah I felt I would be in favor of blood tests show increases, but if it starts trending down I'd be more apprehensive to have it. My doctor gave me the impression that we should do it regardless, I at least think if it stays the same or goes down we should monitor it rather than jump into major surgery.

[dcalandrelli]

I guess my question is if it drops by a small amount say from 18-19 to 15-16 and they still want to do the surgery what would you all do? I know if it continues to rise I'd be silly not to want the surgery, but if it drops a little would you all wait and continue to watch or what?

[Davepet]

From the Testicular Cancer Resource Center dictionary (bold type by me):

Alpha-fetoprotein - AFP is a protein found in the bloodstream of some men with nonseminomatous testicular cancer (It is NEVER present in seminoma patients). The level rises when the cancer is growing and falls when the cancer is shrinking or has been surgically removed, so a blood test can possibly measure the progress of the disease and success of treatment. Because of this behavior, it is referred to as a tumor marker. Elevated levels of AFP occur in 75 per cent of patients with teratocarcinoma, embryonal cell carcinoma, and yolk sac carcinoma. (However, increased levels of AFP are also found in patients with liver diseases, such as cirrhosis, acute and chronic hepatitis and hepatic necrosis. ) The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.

If your numbers are not trending up, I would not agree to the surgery. I certainly would not if they go down even a little.

Dave

[TC Mom]

I personally would trust Dr. Einhorn and if he says you don't need surgery, then I wouldn't do it.

[dcalandrelli]

Thank you. I guess at the end of the day the decision will be made for me. If blood goes up I'll probably need it and if it goes down I won't. If it stays the same then I'll have to see what my options are. If Einhorn feels comfortable saying the cancer is gone I'll take comfort in that for the next two weeks until the blood tests show me more.

[jaygatz4213]

To give you some insight with another perspective. I'm guessing you were stage 2A before chemo. The Drs. at MSKCC always recommend PC-RPLND for that stage after chemo when markers normalize and you are in complete radiographic remission (all nodes less than 1cm) . I was 2A and after chemo my markers normalized and they recommended the surgery. I talked to Einhorn via email and he said surveillance. In this case, this is one of the biggest controversies in TC management , MSKCC operates and IU doesnt. So it isnt wrong or right to have the surgery.

Also, it depends on if you normalize markers. There are studies that show the RPLND without markers normal is a huge failure. So if your AFP goes up, I do not think surgery as a good option for you

Check out the NCCN guidelines here, you can make a free account

https://www.nccn.org/professionals/physician_gls/pdf/testicular.pdf

The decision to operate was one of the toughest I've made in my life, but I am glad I did. Luckily I haven't had any major complications, and I can still ejaculate. You do need to have an experienced surgeon though.

[Trekga]

Wanted to chime in, IU does operate, but they recommend post chemo RPNLD usually if the nodes are still above 1cm post chemo. I agree with waiting to see what your AFP does, I know I have read about others here with AFP staying in the teens after chemo.
That said, post chemo RPNLD is not so bad according to my teenager, or at least not as bad as BEPx3.

[Joe.shupe22]

Absolutely not to the rplnd at this point. If all nodes are less than 1cm and afp remains stable or decreases you have nothing to worry about. Surgery at this point would be over treatment IMO. I agree with others that checking afp weekly would be a good idea. If its found to be stable I say surveillance all the way!

[Joe.shupe22]

The reason I would be questioning your oncologist is if your afp is found to be increasing it would suggest active cancer and rplnd would not be a treatment choice anyways. I'm sure its not active cancer though. When are you supposed to check your markers again?

[dcalandrelli]

August 16th is my appointment. Einhorn agrees that there's no chance of active cancer. I hope he's right, he is the expert! He said let him know if I hit 25, but he says it's not going to happen. I wish I had the confidence Einhorn has for me though. I just need to take it day by day. I'll be on vacation next week and see go to my sisters wedding. Enjoy that and hold onto Einhorns assurance until we get to August 16th!

[Joe.shupe22]

Yup! No reason to jump the gun. You've had an extremely effective treatment against a very sensitive type. You're probably golden . Enjoy that vacation and if I was going to take any one oncologist's advise, it would be Dr Einhorn no questions!

[dcalandrelli]

Thanks Joe! You at probably right. Einhorn said that I'm good and would be extremely surprised to see it hit 25. The man has seen a lot and I should probably trust him.

[GratefulGuy]

If you end up having a choice I would say no to the PC-RPLND. I was 100% embryonal Stage 2 with a couple of nodes that didn't shrink below the magic 1cm measure after 4 EP. Even though the decision was still mine to make the statistics told me it was the wiser choice to make. My fairly experienced surgeon expected it to go smoothly but instead it took 8 hours due to the PC aspect. Because of the length of surgery and my age (63) I ended up with a pulmonary embolism. I also developed chylous ascites and after 30 days in the hospital peritonitis and pneumonia. And I thought I was pretty healthy going into it! But I also know my experience was not typical at all. But I do sleep well knowing that what they took out was necrotic tissue and not live cells or teratoma. What we go through to win this war is not easy, but I thank my lucky stars that it's even possible.