Question about lymph node size reduction

[SamanthaS]

I have been posting a lot of questions to this forum, and I am very grateful for the responses I have gotten so far. Thank you. To repeat, my son has stage IIB non-seminoma (80% embryonal carcinoma, 19% egg sac, 1% choriocarcinoma) and went through 3XBEP which was finished on 9/26. He just got his CT result from 9/30, which shows a reduction of the one problematic lymph node from 25x33mm on 7/31 to 12x15mm (9/30). I wonder what this means? It seems that since it is still larger than 10mm (or 1cm), it is still problematic? Would the node continue to reduce in size after chemotherapy has ended?

[Mike]

I would anticipate that if there is a residual mass of 10 mm or greater that a post-chemo RPLND will be recommended.

I am not aware of how long nodes may continue to shrink after BEP for nonseminoma. For seminoma, I have seen nodes continue to decrease over an extended time, up to 2 years in one person if I remember correctly, but nonseminoma is a bit different. Typically, after the CT the RPLND is done so there aren't many people I have seen with repeat CTs after BEP or they are less than 10 mm and no one really mentions further reduction in size.

Mike

[SamanthaS]

His oncologist claims that the CT was done too early, and that a repeat is necessary soon. Dr. Einhorn wrote back and said to do the next CT scan in two months to see a persistent pattern. So hoping ardently that the next CT scan will show it has shrunk further. I have just read this academic article entitled "Laparoscopic retroperitoneal lymph node dissection versus open retroperitoneal lymph node dissection for testicular cancer" published in the Asian Journal of Urology, and the study involved 16 cases of lymph nodes that reduced from an average of 2.5cm to 1.2cm after chemo, and L-RPLND showed that only 2 of them were cancerous, and the other 13 are necrosis. In other words, those 13 surgeries were not necessary. The question is how does one tell whether the node is cancerous or not? I think you said biopsy doesn't help because it does now represent the whole node. PET scan supposedly works to reveal cell activity, but some people think it is useless. And I don't understand the difference between the regular PET scan and a PET-CT scan. Seems we should do the latter, as it will be both a CT scan and a PET scan, right?

[Mike]

Unfortunately, I am not sure any conclusion can be drawn from that publication. The size decrease was the mean size, so not individual responses. Even then 90% received BEPx3 and 10% BEPx4 and there was no relationship to pathology to chemo response.

Basically, the 1 cm cut off is used as historically removing residual masses of 1 cm or larger would select the 50-60% of patient that still harbored viable cancer or teratoma (which should be removed) while indeed there are the 40-50% of patients that would have fibrosis and not have needed the surgery.

Unfortunately, there is no perfect prediction model and there are surgeries that are done and not needed. Hopefully, the research with microRNA-371 will help better select patients.

According to the NCCN guidelines, "PET has no role in assessing treatment response and residual masses following chemotherapy in patients with nonseminoma."
NCCN Testicular Cancer guidelines are available for free, after registration. https://www.nccn.org/guidelines/guid...gory=1&id=1468

Mike

[SamanthaS]

Again, this is extremely helpful. I am truly amazed by your depth of knowledge. Where can I find out more about the microRNA-371 research? Dr. Einhorn also said that PET has no use, but two oncologists we talked to say that it can show whether the cells are dead or active. I will download the guidelines now. Thanks!

[Mike]

Honestly, at this point microRNA-371 isn't available commercially or for clinical use, so I wouldn't worry about it. Hopefully, one day, this will change, but it just isn't ready yet.

You can certainly order a PET but it isn't needed over CT and can end up causing more troubles. I equate it to driving a Ferrari in a school zone, the old Ford will do just fine.

Mike

[SamanthaS]

I did find out that UCLA has both of these trials going on. It is too late to join the mRNA-371 trial, but there is a trial on a new PET called FAPI PET/CT, which looks promising. Does this look like something worth trying to participate?

https://www.uclahealth.org/clinical-trials/prospective-exploratory-study-fapi-petct-with-histopathology

[Mike]

To me it appears to be a phase I trial investigating a newer imaging technique and I fail to see how it really applies or would be useful but no harm in contacting them if you are looking to help a clinical trial. Otherwise, tried and true imaging modalities are already established for testis cancer. The trial appears to be exploratory and they are not sure if and how the tracer distributes into normal vs cancer cells.

Mike

[Davepet]

I can only say I had an oversized node after chemo (non seminoma) that ,after a couple months disappeared from future scans. No guarantees

[SamanthaS]

Thanks, Davepet, for posting your experience: this is very helpful! I do hope this is the case for my son. Wow, disappearing from future scans! What a dream to hope for. Do you remember how oversized the node was? His primary tumor was also non-seminoma and reduced from 2.5cm to 1.2cm at the conclusion of chemo.

Thanks, Mike, for looking at the website. I think you are right that currently the trial does not yet have any clinical applicability. I will ask my son whether he is interested in joining to help out with the science of it.

[SamanthaS]

I can only say I had an oversized node after chemo (non seminoma) that ,after a couple months disappeared from future scans. No guarantees

Dear Davepet: Thank you so much for posting your example: that is exactly what happened with my son's lymph node 7 months after chemo. It shrank to the normal size and no RPLND is necessary! His third urologist (haha), Dr. Litwin of UCLA, advised him to wait and he did, and viola! For so many months, it did not shrink but then it did! Your example gave me hope that this is a possibility and then when Dr. Litwin suggested it, out of the compassionate goodness of his heart, we knew this is the path to take. We were all scared about the surgery and about waiting too, but in the end it all paid off. Dr. Litwin declared him in remission and "NED" (no evidence of disease)!

I want to thank the forum members who have posted, read, and responded to the posts over the years, from which I have learned so much. And a big thank you to Mike for hosting this life-changing forum!

[Davepet]

Glad it cleared up for him. We love hearing good news like that!

[Mike]

Dear Davepet: Thank you so much for posting your example: that is exactly what happened with my son's lymph node 7 months after chemo. It shrank to the normal size and no RPLND is necessary! His third urologist (haha), Dr. Litwin of UCLA, advised him to wait and he did, and viola! For so many months, it did not shrink but then it did! Your example gave me hope that this is a possibility and then when Dr. Litwin suggested it, out of the compassionate goodness of his heart, we knew this is the path to take. We were all scared about the surgery and about waiting too, but in the end it all paid off. Dr. Litwin declared him in remission and "NED" (no evidence of disease)!

I want to thank the forum members who have posted, read, and responded to the posts over the years, from which I have learned so much. And a big thank you to Mike for hosting this life-changing forum!

A perfect example of taking the time to make the right decision vs. rushing to perhaps make the wrong one. Congrats to you and your son.

Mike

[SamanthaS]

A perfect example of taking the time to make the right decision vs. rushing to perhaps make the wrong one. Congrats to you and your son.

Mike

Thank you, Mike, couldn't have gotten here without your feedback and the support of everyone!