Announcement

Announcement Module
Collapse
No announcement yet.

Treatment for Relapse after Surveillance for Seminoma

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Treatment for Relapse after Surveillance for Seminoma

    Hello all,

    I've come back to the forum yet again for some advice and support. About 7 months ago I had my last remaining testicle removed and the pathology confirmed pure Seminoma. My Bhcg was elevated, but then normalized after the surgery. All of the doctors I saw, including Doctor E, recommended surveillance given a smaller primary tumor size.

    Fast forward to today and I am now dealing with a recurrence with a 1.4 cm para-aortic lymph node that was previously .5cm. My bHCG is once again elevated, this time to 71.

    I feel incredibly unlucky through all of this as I have been told on many occasions the odds of some these things happening to me are below 5%.

    What I hope you all fine member of the community can help me with is stories of how your recurrence was treated. My oncologist is recommending standard radiation and I met with the doctors there yesterday. He seemed very confident in achieving success, but when we talked about long-term side effects he was quoting risks of 1-2%, which are way lower than many published studies out there on second malignancies after radiation.

    I've also inquired about surgical removal via RPLND. I don't qualify for the SEMS trial because this is my second go around with cancer which is an exclusion. When I met with the chief Urologist he talked about doing the procedure roboticaly which is how they do them at UM now I guess (link: https://medicine.umich.edu/sites/def...20Update_0.pdf)

    I haven't talked with any doctor about chemo yet, however after talking with both my oncologist and Dr. E they both advised against any further Bleomycin given the potential fatal side effects.

    I've already reached out to Dr. E, but is going to be in Kenya for the next week and a half.

    Any thoughts or similar stories?

    Thanks,
    ​Patrick

  • #2
    My husband had pure seminoma stage 1 last year and chose surveillance. Everything was good so far but a few days ago his ct scan showed a 2.4 cm lymph node, so his oncologist recommended BEPx3. I emailed doctor Einhorn and asked for advise, so he recommended also the BEPx3 since the relapse is on the same side where testicle was removed. He’s getting pulmonary function test first to see which chemo he will get., either BEPx3 or EPx4. But im curious about the RPLND as well, is that effective?

    Comment


    • #3
      I'm assuming that the second removal was the left side with the para-aortic node being involved? If so, then both radiation and chemotherapy are reasonable approaches as they treat the second primary as a "new" cancer.

      What did you have done the first time? Did you have chemotherapy previously? I am assuming so given the bleomycin comment. Staying away from additional bleomycin if so, is probably best advised.

      The group at Princess Margaret in Toronto just presented their experience with bilateral TC over the past 40 years but only 4 out of 70 patients that relapsed with seminoma had stage 2 disease. Out of those 4 they used radiation in 3 and chemotherapy in 1. Not very high numbers to help with the decision making. Also, they did not show what the treatments were for the first go.

      I suppose you age would make a difference as secondary malignancies tend to occur later (20-30 years down the road). But, the other consideration, if you received chemo the first go, is that there appears to be a higher risk for secondary malignancies/cardiovascular disease if once receives multimodality treatments (i.e. has chemo and radiation vs just chemo or just radiation). That would be something to discuss with the radiation oncologist.

      Outside of a clinical trial I'm not sure if I would go with RPLND and even then would question not using an open approach. The RPLND study being done in seminoma in Germany, again low numbers, but is showing a 29% relapse rate, but that also could be how they are conducting the study compared to how the SEMS trial is doing things.

      Mike
      Oct. 2005 felt lump but waited over 7 months.
      06.15.06 "You have Cancer"
      06.26.06 Left I/O
      06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
      06.30.06 It's Official - Stage I Seminoma
      Surveillance...
      Founded the Testicular Cancer Society
      6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

      For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

      Comment


      • #4
        Mike - about 10 years ago I had stage 1S NSGCT which was treated with three rounds of BEP. Could you share a link with the info from Princess Margaret regarding bilateral? There is very little information out there given the low rates.

        I've read the studies, many times, showing the long term effects of chemo + RT and it's scary to say the least. A big factor of why I chose surveillance was avoiding additional treatment and just taking the extra 7 CT's.

        Comment


        • #5
          It's been awhile, but wanted to post an update on how things are going. After several weeks of weighing out options and talking with lots of doctors, including several experts I decided to do the RPLND at IU with Dr. Cary. I think I have seen only one other person on the forum who went with the SEMS option (I'm off trial because this is a second primary).

          The last month has been difficult as I recovered from the surgery. It seems like fewer and fewer people on the forums are having them in favor of chemo now.

          After talking with Dr. Cary and emailing with Dr. Daneshamnd at USC they are both very optimistic that this trial is the first step to new, less toxic, treatment for low volume seminoma. The trial is near the end and it seems the early results are favorable.

          The next big hurdle will be deciding on follow up treatment, I only had two positive nodes, but one was 2cm and the pathologist noted extra nodal extension (ENE). Dr. Cary was quick to point out that ENE was not an established risk factor, but for some reason in staging this is seen as a relapse predictor.

          I do have a question for anyone who had an RPLND for stage1/2 non-seminoma: What were your post treatment options and what medical advise did you receive based on the pathology after surgery? There doesn't seem to be much research out there, the only article I could find seemed to say unless you were pathologic 2a then 2 cycles of chemo was recommended. I know Seminoma and Non-Seminoma are not the same, just interested to hear some stories of others.

          Comment


          • #6
            Thanks for updating! Good to hear that the chances of success are good with the first line RPLND for seminoma. Best of luck!

            As for surveillance, if you find and download the NCCN guidelines and study it closely, you can probably read between the lines and come up with something reasonable.
            6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
            6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
            7/7/15: bHCG 56, AFP 42, LDH 322
            7/13/15: begin 4xEP, end 9/18/15
            10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
            10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
            4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
            4/20/16: RPLND @ IU - teratoma only!
            4/15/19: all clears up to this date!

            Comment

            Working...
            X