4 weeks post RPLND - pains everywhere

[Iwillsurvive]

Hi everyone,

I was operated on 4 weeks ago full RPLND to remove tumor from my left para-aortic area. I have pains everywhere eversince ( lower back, thighs, hips) but a week ago I developed a pain in my right groin area and leg. Is such a pain related to the surgery? Just to be sure I did an ultrasound on my survivor and it was negative of any tumors.

inital diagnosis (non- seminoma mixed germ cell tumor stage 2B)

initial treatment was BEP*3 (2018) and all clear after.

relapsed after 4 years (2022 October)

went through 4 cycles of TIP BUT STILL have HIGH MARKERS (AFP 48, others negative) followed by RPLND end of FEB 2023.

markers are normal after surgery and scans all clear. However, the pathologist reported one node with embryonal carcinoma 80% and yolk sac 20%.

the oncologist said we won’t need further chemo since the markers and scans after surgery are all clear! We will do tests every 2 months. Is that even right? I thought any cancerous cells found should be followed by chemo.

Any thoughts on the pains ( especially the groin area) & treatment plan?

[Mike]

Hopefully you have addressed he pains with the surgeon as they would be the best to investigate the causes. At 4 months you would think things would be getting better though. As far as follow up, every 2 month tumor markers seem reasonable but the CT scans are usually done more like every 6 months so if they are doing every 2 month CT scans, then I would ask why. As far as adjuvant chemo after RPLND usually the decisions are made based on the amount of viable testis cancer in the RPLND specimens and if there is less than 10% viable cancer found, then adjuvant chemotherapy is usually not offered. Again, this is something to as the oncologist. I am not sure where you are being related or their expertise so that info may help interpret what they are doing as well.

Mike

[tammmy]

Hi Iwillsurvive, how are you doing? Did you fully recover from RPLND?

I wanted to ask you how big was your relapsing tumor and did your AFP drop at all from the chemo?

My husband relapsed 8 years post 3xBEP, his AFP is around 60 and there was a discussion whether RPLND first or chemo first and we ended up opting for surgery, which should happen in coming weeks. Was just wondering what did they tell you, which route was better and why.

Also, did you have unilateral or bilateral RPLND?

Thanks in advance and wish you best of luck!

[Mike]

My husband relapsed 8 years post 3xBEP, his AFP is around 60 and there was a discussion whether RPLND first or chemo first and we ended up opting for surgery, which should happen in coming weeks. Was just wondering what did they tell you, which route was better and why.

Tammmy did your husband relapse 8 years after BEP or did he have a second primary tumor in the remaining testicle?

Mike

[tammmy]

Hi Mike,

It is a late relapse of his original diagnosis, not a second primary (unfortunatelly). We waited for a while for something to show up on the scans and justify the rising AFP, and now that after two years there is a visible, growing node, we just hope it is some weird, AFP producing teratoma and that surgery will be sufficient.

Tamara

[Mike]

Hi Mike,

It is a late relapse of his original diagnosis, not a second primary (unfortunatelly). We waited for a while for something to show up on the scans and justify the rising AFP, and now that after two years there is a visible, growing node, we just hope it is some weird, AFP producing teratoma and that surgery will be sufficient.

Tamara

OK with it being a late relapse the surgery first approach seems very reasonable given the increased AFP. How high did it get?

Mike

[tammmy]

Yes, I agree. His AFP was 61 on the latest test, which his MD team says is a bit high to be pure teratoma. That is what triggered the chemo debate.

[Mike]

Yes, I agree. His AFP was 61 on the latest test, which his MD team says is a bit high to be pure teratoma. That is what triggered the chemo debate.

Late relapses after chemo can be a bit different biologically. It's my understanding that a surgical first approach, if possible, is usually the way to go. The AFP is mildly elevated, which is good to hear too.

Mike

[Iwillsurvive]

Hi Iwillsurvive, how are you doing? Did you fully recover from RPLND?

I wanted to ask you how big was your relapsing tumor and did your AFP drop at all from the chemo?

My husband relapsed 8 years post 3xBEP, his AFP is around 60 and there was a discussion whether RPLND first or chemo first and we ended up opting for surgery, which should happen in coming weeks. Was just wondering what did they tell you, which route was better and why.

Also, did you have unilateral or bilateral RPLND?

Thanks in advance and wish you best of luck!

Sorry for replying late. I hope your husbands journey be easy n quick.

It’s been 3 months since the surgey and I’m getting better. Still feel pains here and there in my back and thighs.


my relapsing tumor was 7 cm and AFP was 500ish. My doctor insisted on chemo first to normalize the AFP to make the surgery more feasible. Unfortunately it didn’t normalize (AFP was 46 before surgery) but went down to 2.4 afterwards. And yeah it was a full RPLND (at least thats what he told me)

all the best

[tammmy]

Hey, thanks so much for coming back to me! I get now why they started with chemo in your case. Wish you a quick full recovery and all the best as well.

Thanks to you Mike as well for your support! Am really thankful you are keeping this forum up and alive.

Best
Tamara

[Iwillsurvive]

Hi there, quick update I done post rplnd PET/CT last week and the result came back as “ The previous ct (right after surgery) detected small bowel dilatation located in the surgical site at the level of the aortic bifurcation showed hypermetabolic activity SUV max 5.1 for follow up“

AFP now is at 6.4 compared to 2.4 right after surgery. What does that mean? My oncologist scheduled me to see the surgeon who operated on me and leaned toward the option of repeating RPLND! Is it a new lymph node that wasn’t there before? Because it wasn’t the on the PET/CT on December 22. Could it be inflammation in the area of the Surgery ?

I'm out of words and shocked. And honestly feel under treated. I’m in Saudi Arabia and been seeing the top doctors I can get. Any thoughts? Different approaches I should try? Can a center of expertise evaluate my case online? Anything can help guys.

[Iwillsurvive]

I just saw the surgeon. He said the hypermetabolic activity in the surgey area is not to be concerned about at this moment. However, there is a right external iliac lymph node which is regressing in size and metabolic activity (now 1 cm compared to 1.4 after chemo) and the suggestion is to go through PLND. It’s crazy its been there all the time but no one mentioned that we need to remove it? Why it was not removed during Rplnd? He said it’s different procedure and given the slight increase in AFP it could be the cause. Although afp was just fine when it was bigger and more active?

[SamanthaS]

Hi, I am not able to offer any medical advice, just to offer my son's case as a comparison. He had an enlarged lymph node after chemo, and RPLND was recommended by two doctors. But we went to a third doctor who advised him to wait, and it actually shrunk back to normal size 8 months after chemo. His was non-seminoma, stage IIB. Should you get a second opinion? I don't know why a shrinking node requires RPLND. Has anyone recommended that you write to Dr. Einhorn for his input? His email is [email protected]. He has been extremely helpful for my son's case.

[Iwillsurvive]

Thats actually a relief to hear. I feel my surgeon is typa aggressive in dealing with such a thing. He won’t leave things to chances & I’m not sure if it’s the right approach at all. But better safe than sorry right? At this point I’m more concerned about the afp elevation and the hypermetabolic activity in the region of surgery and how possible if it’s related? Although there isn’t any nodes involved only SUV activity which also can be due to inflammation after surgery too. I think should redo the AFP in a few days just to see the trend.

and yeah I’m in touch with Dr Einhorn who believes the AFP is nothing to worry about if its less than 25 but havent updated him with the latest PET result. Will do so though. Cheers.

[tammmy]

Hey I also cannot offer any medical advice but what I think one of the problems with late relapse is that due to slow growth it is not PET reactive and doesn't shine up on the scan. So, in your case, as they see a slight rise in AFP they are looking back through your CT scans, looking for any changes which might have in any ways reacted to chemo. This is how they probably landed on that shrinking node as a possible suspect potentially carrying some residual cancer cells (if it reacted to chemo already).

But if I were you I would not rush into another surgery before taking some time to see what is happening and how AFP develops. Jump is very little. Maybe it will indeed normalize over time or at least you will know with more certainty that it is really that node to blame. Good luck!