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  • Surveillance, 2x Carbo, or other?

    Continued from here: TC after a vasectomy? Yep

    post I/O and going over pathology report.

    Good news/bad news: Tumor was 100% seminoma but was 8cm. Pathology report said it was fully encapsulated and didn't make it into the spermatic cord, etc. However, the CT scan showed one lymph node that was 9.3mm (not cm). My LDH numbers have been going down but are still elevated:

    6/25 (I/O date)= 1056
    6/28= 378
    7/8= 217

    I met with oncologist yesterday and he (and urologist) are leaning more toward chemo than surveillance; probably because of the tumor size, LDH still above normal, and CT finding. Oncologist is going to take the results to the tumor board at the health center next week and will meet with me afterwards. Right now, he's thinking 2x Carbo regimen but that could change. He's willing to talk to Dr. Einhorn as well.

    My questions are:

    1.) Do my LDH levels show lymph node invasion or is it usually take that long to come down? (I'm getting them run again on Friday and next Wednesday)

    2.) Is the 2x Carbo treatment a good idea or should I go more of the 3xEP or 3xBEP? (I saw Dr. Nichols state** that he wasn't totally convinced about the whole 2x Carbo treatment)

    Any input would be appreciated.

    freudhawk



    ** http://tcrc.acor.org/chemo.html In recent years, particularly in Europe, one or two cycles of adjuvant Carboplatin are being recommended to treat Stage I seminoma. Studies do exist implying that this treatment is just as effective as radiation in reducing short term recurrences, but there is less evidence that it is as effective in reducing long term recurrences. Nevertheless, most men with Stage I Seminoma are cured by the orchiectomy alone, and while this Carboplatin treatment is very quick and relatively painless, it still is chemotherapy and can lead to other side effects. Surveillance should always be considered as a viable option for men with Stage I disease.

    Some countries in Europe (particularly the UK and Germany) plus a few sites in the US are now recommending 2 cycles of adjuvant chemo for patients with high risk stage I nonseminoma. Their thought is that if they can't see the spread of cancer on CT scan, but the pathology report indicates that it is likely to have spread, then they can save the patient from surgery or excessive chemo by giving them just two cycles of BEP chemo right away. Unfortunately, neither I nor most of the experts I have talked with agree with this thinking.

    - First of all, the success rate of the standard chemotherapy and surgical procedures is so high (~98%) that it would take a very large sample of people to ever prove that the 2 cycle regimen is equivalent to the existing protocol. It would take many years to get enough people to run the study, and even then, you would have to watch for many years to ensure that no one is suffering from recurrences years later.

    - Secondly, the argument for using two cycles of chemo is based on the fact that only microscopic clumps of cancer have spread so far. This is a very poor assumption. Unfortunately, the CT scan that we often rely on is only accurate 80% of the time. In other words, 20% of the time it may be falsely negative - 20% of the time it says there are no enlarged nodes when, in fact, there are enlarged nodes. I know of one person who was told that he was stage I, and was thinking about the two cycle approach. He decided to choose surgery instead. When they opened him up, they found LOTS of cancer. If he had been treated with just two cycles of chemo, it would not have been enough to cure him, but it probably would have been enough to make the cancer resistant to cisplatin based chemo.

    - Finally, a substantial number of men with high risk stage I nonseminoma were actually cured of their disease during the orchiectomy. The two cycle approach is not a lot of chemo, but it is two cycles more than many guys need.
    10/10/12- Vasectomy performed (swollen afterwards on right testicle; for quite a long time assumed it was hematocele)
    6/21/12- Vasectomy doc referred for ultrasound and it revealed large mass; referred to urologist
    6/24/12- Urologist orders right I/O but also thinks it is probably hematocele instead of TC
    6/25/12- I/O reveals 8cm tumor
    6/28/12- TC is 100% Seminoma . CT reveals lymphatic invasion possible on one node.
    7/10/10- Awaiting decision on treatment

  • #2
    Hi,

    Regarding LDH, do you know your ULN (Upper limit of lab normal)? There can be quite a variation - the two hospitals that do mine are around 200 and 600 respecitively. I am guessing, but I'd say the rapid decrease is a good sign but not specific enough to base a treatment decision on. So many things raise LDH - a good work-out at the gym, smoking, etc etc.

    The 2 x carbo is almost impossible to call. If you assume the lymph nodes are non-cancerous then its an option to reduce the chance of future spread - takes the average 15% chance of recurrence down to about 4%. If those lymph nodes are cancerous however then the chance of 2 rounds of carbo at best will be 70% effective (4/15 - the Stage 1 adjuvant effectiveness). A german trial using 4 rounds of AUC7 single agent carbo for Stage 2A was 80% effective (albeit that all relapses were successfully salvaged with 3xBEP).

    Its really quite a difficult decision. The best option is a CT rescan to see if they are bigger/smaller, but you can't delay that longer than six weeks because thats the adjuvant window for Stage 1/Carbo x 2. If you have the carbo now it may not be enough if those lymph nodes are affected. If it were me personally I would go on surveillance and wait and see. I'd definitely get another scan just before the adjuvant window closes, but if its still uncertain you will know about those lymph nodes one way or the other in less than six months. I personally wouldn't subject myself to 3xBEP until I was sure I needed it but I would want to have an aggressive scanning schedule so BEP could be started ASAP if needed.

    That said, whatever you do it is important to realise that the eventual outcome is likely to be the same in that you have an almost 100% chance of cure. In a way, the decision is only difficult because its down to personal choice. If one of the options here was a bad one, it wouldn't be on offer and/or the decision would be easier/clearer!

    Regards,

    Steve
    Last edited by steveb_uk; 07-11-13, 04:46 PM.
    Jan 2012 suspicious lump detected, AFP 4, HCG 3, LDH 207 (UL 192)
    Feb 2012 Seminoma, 5cm x 4cm, no LVI/RTI, pT1, Stage 1A, Surveillance, joined TRISST
    Mar 2013 (1 year) relapse, Stage 2B, 2x Nodes 2.1 and 2.3cm (iliac and para-aortic)
    Apr 2013 Carboplatin AUC10 x 3 cycles (Phase 2 trial), complete
    Jun 2013, nodes down to 5mm, back on surveillance
    ​Jun 2014, 1 yr post chemo CT Scan, all clear
    Jun 2015, 2 yr post chemo CT Scan, all clear
    Jun 2019 6 years all clear

    Comment


    • #3
      Originally posted by steveb_uk View Post
      Hi,

      Regarding LDH, do you know your ULN (Upper limit of lab normal)? There can be quite a variation - the two hospitals that do mine are around 200 and 600 respecitively. I am guessing, but I'd say the rapid decrease is a good sign but not specific enough to base a treatment decision on. So many things raise LDH - a good work-out at the gym, smoking, etc etc.

      The 2 x carbo is almost impossible to call. If you assume the lymph nodes are non-cancerous then its an option to reduce the chance of future spread - takes the average 15% chance of recurrence down to about 4%. If those lymph nodes are cancerous however then the chance of 2 rounds of carbo I think will be less than 70% effective (4/15). A german trial using 4 rounds of AUC7 single agent carbo for Stage 2A had a 20% recurrence rate (albeit that all relapses were salvaged with 3xBEP).

      Its really quite a difficult decision. The best option is a CT rescan to see if they are bigger/smaller, but you can't delay that longer than six weeks because thats the adjuvant window for Stage 1/Carbo x 2. If you have the carbo now it may not be enough if those lymph nodes are affected. If it were me personally I would go on surveillance and wait and see. I'd definitely get another scan just before the adjuvant window closes, but if its still uncertain you will know about those lymph nodes one way or the other in less than six months.

      That said, whatever you do it is important to realise that the eventual outcome is likely to be the same in that you have an almost 100% chance of cure. In a way, the decision is only difficult because its down to personal choice. If one of the options here was a bad one, it wouldn't be on offer and/or the decision would be easier/clearer!

      Regards,

      Steve

      Thanks so much for the reply and encouragement, Steve. I don't have a clue what my ULN is? How would I find that out? Is that on the blood work report?

      I'm very much hoping to just go on surveillance, so we'll see how things shape up soon. How did your chemo treatment go?
      10/10/12- Vasectomy performed (swollen afterwards on right testicle; for quite a long time assumed it was hematocele)
      6/21/12- Vasectomy doc referred for ultrasound and it revealed large mass; referred to urologist
      6/24/12- Urologist orders right I/O but also thinks it is probably hematocele instead of TC
      6/25/12- I/O reveals 8cm tumor
      6/28/12- TC is 100% Seminoma . CT reveals lymphatic invasion possible on one node.
      7/10/10- Awaiting decision on treatment

      Comment


      • #4
        Originally posted by freudhawk View Post
        Thanks so much for the reply and encouragement, Steve. I don't have a clue what my ULN is? How would I find that out? Is that on the blood work report?
        I'm very much hoping to just go on surveillance, so we'll see how things shape up soon.
        The urologist/oncologist should know the lab normal - in both of my cases I just asked them. If hes saying its elevated then its above the upper limit of labl normal but how much might give an indication. As you can see from my sig mine was just above but my onc put it down to "dirty living!!" (at the time I was a smoker). All my bloodwork reports have been verbal but this is the UK and it may be different in the US.

        Originally posted by freudhawk View Post
        How did your chemo treatment go?
        I think the grand summary is that it was doable but I'm nervous. 3 rounds of carbo at the dose I had was bordering on maximum toxicity on blood levels (myleosuppression) for me and the UK are keen to give it without blood transfusion support, so I had delays and dose reductions. This has an unknown effect on the treatment efficacy - its somewhere between 80% and 100%. The plus side is that I appear to have no lasting side effects apart from pulsatile tinnatus which is probably unrelated anyway and I think is getting better. However, all in all, given my time again, I would have gone for 3xBEP for certainty. When I signed up for it I was under the false impression I would be given blood support to keep me at full dose and on schedule.....but fingers crossed and this is all I'll ever need!

        Steve
        Jan 2012 suspicious lump detected, AFP 4, HCG 3, LDH 207 (UL 192)
        Feb 2012 Seminoma, 5cm x 4cm, no LVI/RTI, pT1, Stage 1A, Surveillance, joined TRISST
        Mar 2013 (1 year) relapse, Stage 2B, 2x Nodes 2.1 and 2.3cm (iliac and para-aortic)
        Apr 2013 Carboplatin AUC10 x 3 cycles (Phase 2 trial), complete
        Jun 2013, nodes down to 5mm, back on surveillance
        ​Jun 2014, 1 yr post chemo CT Scan, all clear
        Jun 2015, 2 yr post chemo CT Scan, all clear
        Jun 2019 6 years all clear

        Comment


        • #5
          Originally posted by steveb_uk View Post
          The urologist/oncologist should know the lab normal - in both of my cases I just asked them. If hes saying its elevated then its above the upper limit of labl normal but how much might give an indication. As you can see from my sig mine was just above but my onc put it down to "dirty living!!" (at the time I was a smoker). All my bloodwork reports have been verbal but this is the UK and it may be different in the US.



          I think the grand summary is that it was doable but I'm nervous. 3 rounds of carbo at the dose I had was bordering on maximum toxicity on blood levels (myleosuppression) for me and the UK are keen to give it without blood transfusion support, so I had delays and dose reductions. This has an unknown effect on the treatment efficacy - its somewhere between 80% and 100%. The plus side is that I appear to have no lasting side effects apart from pulsatile tinnatus which is probably unrelated anyway and I think is getting better. However, all in all, given my time again, I would have gone for 3xBEP for certainty. When I signed up for it I was under the false impression I would be given blood support to keep me at full dose and on schedule.....but fingers crossed and this is all I'll ever need!

          Steve
          Amen, to that. Here's hoping that's all the chemo you'll ever need. It is interesting though the difference in medical approaches between countries at times even with all the shared information and research.
          10/10/12- Vasectomy performed (swollen afterwards on right testicle; for quite a long time assumed it was hematocele)
          6/21/12- Vasectomy doc referred for ultrasound and it revealed large mass; referred to urologist
          6/24/12- Urologist orders right I/O but also thinks it is probably hematocele instead of TC
          6/25/12- I/O reveals 8cm tumor
          6/28/12- TC is 100% Seminoma . CT reveals lymphatic invasion possible on one node.
          7/10/10- Awaiting decision on treatment

          Comment

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