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Big doubt > Post-chemo RPLND versus Surveillance

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  • Big doubt > Post-chemo RPLND versus Surveillance

    Hello,

    My husband (41 years old) was diagnosed with TC end of September 2019. We live in a small European country.


    Left Orchiectomy and Chemotherapy (3xBEP)
    • Left orchiectomy took place in Turkey on first week of October (25% seminoma, 75% embryonal carcinoma, AFP = 57.6, BHCG= 4.69 (on a scale from 0 till 2)).
    • From the pelvis&abdomen MRI before the surgery, we knew that he has few retroperitoneal lymph nodes enlarged, biggest having 17.5 mm and 3-4 more below 1 cm.
    • He had 3XBEP, which he completed beginning of December > Tumor markers (AFP, BHCG, LDH) went to normal after first cycle of chemo and continued to be in normal range till the day of the post-chemo evaluation.
    Post-chemo evaluation
    • Mid of December he had post-chemo evaluation in Turkey (PET CT and tumor markers).
    • PET CT didn’t reveal any pathological FDG uptake in the retroperitoneal lymph nodes, nor in other body regions and the 17.5 mm lymph node reduced in size to 10 mm, while the smaller ones were not noticed anymore.
    • AFP = 2.74
    • BHCG = 5.25 (on a scale from 0 till 2)
    • Based on the elevated Beta HCG marker, the oncologist and uro-oncologist doctors considered that there is a high chance of having residual cancer cells in the retroperitoneal lymph nodes and suggested to do Brain MRI and scrotum ultrasound
    • Brain MRI was clean
    • The scrotum ultrasound didn’t reveal any finding in favor of pathological LAP in the left inguinal region, however, it described 3 reactive lymph nodes in this region, measuring 13x4 mm, 10x6 mm and 8x5 mm
    • Based on all the above results, the doctors suggested to have surgery to remove the retroperitoneal and inguinal lymph nodes, in 4-6 weeks after the chemotherapy ended
    • Since then, he repeated the tumor markers every week and the tumor markers were in normal range each time (the blood tests were repeated in our country, so in different laboratory than the evaluation's day).
    Post-chemo Week No AFP BHCG
    Week 2 – The day with the PET CT 2.74 5.25 (on a scale from 0 to 2)
    Week 3 2.5 5 (on a scale from 0 to 5)
    Week 4 2.2 4 (on a scale from 0 to 5)
    Week 5 We didn't check 4 (on a scale from 0 to 5)
    Week 6 We didn't check 3 (on a scale from 0 to 5)
    • My husband decided to have surgery and surgery was planned this week, but he cancelled it at the last moment, due to all the doubts that I mentioned below.
    • As a preparation for the surgery, he had last week pelvis&abdomen CT (so 4 weeks after the PET CT), which didn't reveal any significant change in the size of the 10 mm retroperitoneal lymph node.
    • He is completing 6 weeks after chemo at the end of this week.
    • During this time, we consulted more doctors for a second medical opinion, and we got 2 different opinions:
      • Some doctors recommended us to wait and monitor (tumor markers every 2 weeks and scan after 3 months)
      • Some other doctors strongly recommended post-chemo RPLND. The doctors who advised the surgery said that this is preferable option for young patients, to be aggressive and don't risk having remaining cancer cells in the body.
    • Among the doctors who recommended surgery, they had different opinions about what lymph nodes to remove during the surgery, which made us having even more doubts about what is the right choice for my husband
      • Whole (bi-lateral) RPLND, without removing the inguinal lymph nodes
      • Whole (bi-lateral) RPLND and removing also the inguinal lymph nodes
      • Partial RPLND (removing only the suspicious lymph nodes) and removing also the inguinal lymph nodes
    Our questions
    • Did anyone here face a similar dilemma?
    • What are the major long-term side effects/risks of the RPLND? We are aware of the retrograde ejaculation risk. We heard also about lymphedema. Did anyone here who went through RPLND face lymphedema (swollen legs)? Any other major side effects (long term) that we should be aware of?
    • When it comes to surgery, what is the protocol that should be followed? Bi-lateral RPNLD? What about the inguinal lymph nodes, did anyone have those removed as well?
    • Is it worth waiting and taking the risk of cancer spreading during this time, rather than doing the surgery now?
    • Did anyone here had the RPLND in Europe and can recommend us an experienced surgeon?
    We need to take a decision about the surgery quickly. We appreciate any answer.

    Thank you!

  • #2
    Hello..seeing you here üzgünüm..Biz we live in Istanbul..We have 3 bep rplnd..

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    • #3
      Our oncologist said that if all nodules are below 1 cm, then we should go to surveillance, expecting them all to shrink, but if even one nodule was above 1 cm, then we the open bilateral RPLND would be recommended.

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      • #4
        How may doctors did he see? How many said surgery & how many said surveillance?
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

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        • #5
          2 oncologists said to wait
          3 oncologists/urooncologists said surgery
          1 oncologist said both options are ok

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          • #6
            You should think this through, I am not a doctor and I don't want to steer the ship in any direction but at the end of my 3rd cycle of BEP, my bhcg went to 3.1 on a 0-2 normal scale. I had 4 bep total so I was not that concerned at that moment and it never spiked again since. Be aware that bhcg can slightly increase due to low testosterone too... I too have a 12mm node remaining in my chest down from 21mm that we are watching because it's in a bad spot and the surgery is very risky... Doctors have mixed opinions for my case too. Fingers crossed for now and you should write a detailed email to Einhorn, he usually answer in less than 24h and is the most recognized tc oncologist in the world.Also if your pathology is right and the nodes were quite small to begin with it would be unusual not to be already cured. 10-13% chances of finding active cancer with the surgery

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            • #7
              Prof doktor Levent Türkeri yi mutlaka görün..o bu işte uzman..

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              • #8
                Originally posted by Webzfactory View Post
                You should think this through, I am not a doctor and I don't want to steer the ship in any direction but at the end of my 3rd cycle of BEP, my bhcg went to 3.1 on a 0-2 normal scale. I had 4 bep total so I was not that concerned at that moment and it never spiked again since. Be aware that bhcg can slightly increase due to low testosterone too... I too have a 12mm node remaining in my chest down from 21mm that we are watching because it's in a bad spot and the surgery is very risky... Doctors have mixed opinions for my case too. Fingers crossed for now and you should write a detailed email to Einhorn, he usually answer in less than 24h and is the most recognized tc oncologist in the world.Also if your pathology is right and the nodes were quite small to begin with it would be unusual not to be already cured. 10-13% chances of finding active cancer with the surgery

                Do you know the email of Prof. Einhorn? I found on the internet this one: leinhorn@iupui.edu

                Comment


                • #9
                  leinhorn@iu.edu is the one I used

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                  • #10
                    This is a tough call. The uros are surgeons, so they are naturally more likely to recommend surgery ( we all tend to want to use the tools we are most familiar with, after all). The decline in markers at this point, even though a bit slow, would make me want to wait a bit longer before getting surgery. A short wait is unlikely to affect the outcome long term, only the treatments needed if it comes back.An email to doc E is certainly a good idea.

                    Dave
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

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                    • #11
                      I think it's related to testosterone..

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                      • #12
                        You can take a shot of testosterone and look at betahcg in a week.

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                        • #13
                          Originally posted by omerkulum View Post
                          You can take a shot of testosterone and look at betahcg in a week.
                          Without a blood test showing low testosterone, I would not advise that.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            Good luck making your decision. I am glad that your husband has you advocating so strongly for him, and that you have done such careful research.

                            The fact that different doctors have made different recommendations likely reflects that there is uncertainty about what the "best" course of action is, and that both options are viable for you.
                            Having said that, the best decision is usually a decision that is made, rather than one that is up in the air and causing great worry to you both for an extended period. So, I would encourage you to go one way or the other and not look back.

                            Although the normal ranges for the bHCG's differ (0-2 vs. 0-5), that is about the lab reporting conventions or the specific form of the test, not really about the results themselves. The bHCG values you're reporting were somewhat elevated, but not HUGE, and the trend is in the right direction. Sometimes it takes a bit for them to come down.

                            Please let us know how things go for you and your husband, we are eager to hear any and all updates!
                            Painless lump 5/18/2017
                            Orchidectomy June 2017 (4.5cm, rete testis involvement)
                            Chemo Summer 2017 (2x7AUC carboplatin)
                            No evidence of relapse since, but plenty of anxiety about it.

                            I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

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                            • #15
                              Thanks everyone for your answers and support!
                              We are still processing this and didn't make our mind yet about which option to go with.
                              I will definitely let you know once we decide and i will keep you informed about the progress.

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