Announcement

Announcement Module
Collapse
No announcement yet.

“Unwanted” Surveillance

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

  • “Unwanted” Surveillance

    Hello,

    I don’t know why I’m doing this post exactly. I don’t want to come of as whiny, just venting.

    I was Dxd Stage 1a, Nonseminoma (100% Embryonal), Negative LVI, no rete invasion. Markers normalized quickly after surgery on feb 4th.
    I was going to get adjuvant chemo on March 16th, but COVID hit and I panicked and went surveillance for a month.
    Now it’s April.

    Today I had a second opinion at a recognized cancer center with a TC Subspecialist.
    She basically advised that I’m out of the adjuvant window and that she can give it to me for my peace of mind but that she can’t back any numbers because there is no data with adjuvant starting after 6-8 weeks. And that if solid tumors behave the same, there is evidence that there is no significant benefit of starting after 8 weeks on other tumors.

    She told me she estimates my Cure rate 80% at best 70% at worse and that I should undergo surveillance.

    It wasn’t my intention but this happened and I guess I’ll have to live with my decision.

    I’m being hard on myself, because in hindsight, we didn’t get hit hard by COVID where I am and I didn’t get it. While at that time I had no data to say.

    Rant done.

    Thank you for reading.

    Be safe my friends.

  • #2
    Hi Bud,

    Sorry to hear of your troubles. But I know you are not alone in the way you responded to the corona situation. In the UK cancer referrals are down a whopping 60 per cent since it kicked off because people are so afraid to come to the hospital.

    I have been admitted after a round of chemo sent me for a bad turn and the wards here which are for cancer patients only are like ghost towns.

    I know the oncologists here are taking the risk of corona very seriously and have been assessing the risk v rewards of each patient carefully. They told me originally they would only proceed with chemo at the moment in patients for whom it was absolutely essential the action was taken. In my case I have a 99% embryonal which is a fast spreading aggressive type at stage 2B so they decided it had to be done despite the risks. But during my first consultation before the biopsy results they said they would likely delay stage 1 chemo where possible.

    I do know that they are delaying treatments wherever possible and safe to do so because of the added risk corona brings.

    And the city I am in has not been badly effected either so I wouldn’t beat yourself up because the doctors here in the UK are taking the corona situation as seriously as you did.

    And on my consent forms I had to accept the risk of been higher risk of Covid 19 and it was explained to me if I contract the virus during chemotherapy my chances would be very poor. However in my case not having the chemo would have been more dangerous.

    So again I don’t think you did anything wrong this Corona situation is exactly as scary and serious as you thought.

    Hopefully someone will give you more advice regarding what she stating numbers wise but it doesn’t sound to me like her advice was very productive for you so I would certainly ask for another opinion but I have not heard of TC docs quoting numbers as low as 70 for anything less than stage 3. And what’s in a number anyway?

    Wish you all the best and don’t beat yourself up no decisions are easy when facing this monster especially with stinking Corona around.

    much love

    ​deekz

    Comment


    • #3
      Originally posted by deekz View Post
      Hi Bud,

      Sorry to hear of your troubles. But I know you are not alone in the way you responded to the corona situation. In the UK cancer referrals are down a whopping 60 per cent since it kicked off because people are so afraid to come to the hospital.

      I have been admitted after a round of chemo sent me for a bad turn and the wards here which are for cancer patients only are like ghost towns.

      I know the oncologists here are taking the risk of corona very seriously and have been assessing the risk v rewards of each patient carefully. They told me originally they would only proceed with chemo at the moment in patients for whom it was absolutely essential the action was taken. In my case I have a 99% embryonal which is a fast spreading aggressive type at stage 2B so they decided it had to be done despite the risks. But during my first consultation before the biopsy results they said they would likely delay stage 1 chemo where possible.

      I do know that they are delaying treatments wherever possible and safe to do so because of the added risk corona brings.

      And the city I am in has not been badly effected either so I wouldn’t beat yourself up because the doctors here in the UK are taking the corona situation as seriously as you did.

      And on my consent forms I had to accept the risk of been higher risk of Covid 19 and it was explained to me if I contract the virus during chemotherapy my chances would be very poor. However in my case not having the chemo would have been more dangerous.

      So again I don’t think you did anything wrong this Corona situation is exactly as scary and serious as you thought.

      Hopefully someone will give you more advice regarding what she stating numbers wise but it doesn’t sound to me like her advice was very productive for you so I would certainly ask for another opinion but I have not heard of TC docs quoting numbers as low as 70 for anything less than stage 3. And what’s in a number anyway?

      Wish you all the best and don’t beat yourself up no decisions are easy when facing this monster especially with stinking Corona around.

      much love

      ​deekz


      Hey Deek,

      thanks for the reply and best of wishes throughout your treatment course.

      She meant 70-80% with surgery alone, meaning 20-30% relapse rate.

      This was a second opnion with a subspecialist on Genitourinary Cancer, specifically in Testicular Cancer. If someone will know it it's ger.
      The advise is definately not what I wanted to hear, but I appreciate her honesty in telling me she can't really promise me the success rate that is quoted with Adjuvant being started within 6-8 weeks.

      Comment


      • #4
        Ahh I get ya.

        Well I’ll keep all I have crossed for you that the b*****d is gone for good

        Rubbish advice to stay I know but try stay positive, stress and anxiety are no good for the body at any times.

        much love

        deekz

        Comment


        • #5
          The benefit of receiving adjuvant BEP are not all that great, throw in the delayed administration (which mentioned has no data), the issues with COVID-19 and the need to be re-evaluated with tumor markers and CT before the BEPx1 should even be started, to me makes adjuvant chemotherapy have little desire. I do realize it is so much an individual choice though.

          Some international experts just weighed in on BEPx1 too, which you might find useful: https://ascopubs.org/doi/full/10.1200/JCO.20.00204

          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


          • #6
            Originally posted by Mike View Post
            The benefit of receiving adjuvant BEP are not all that great, throw in the delayed administration (which mentioned has no data), the issues with COVID-19 and the need to be re-evaluated with tumor markers and CT before the BEPx1 should even be started, to me makes adjuvant chemotherapy have little desire. I do realize it is so much an individual choice though.

            Some international experts just weighed in on BEPx1 too, which you might find useful: https://ascopubs.org/doi/full/10.1200/JCO.20.00204

            Mike
            Thanks Mike

            Tomorrow Will be my first CT scan 3 months out of Sx. Obviously nervous as hell.

            Comment


            • #7
              Thanks for sharing the article Mike, makes me feel better about my own decision to go with surveillance (with the same diagnosis as Elgontc)!

              Comment


              • #8
                I had a beautiful pristine CT scan today. <3

                Also as RepDrop said. That article makes me feel less bad that I underwent unwanted surveillance.

                Comment


                • #9
                  WOOOOOOOT WOOOOOOOT!!!! Good to hear all clear happy for you dood.

                  Comment


                  • #10
                    Congrats on the clear scan and glad that the article was of use.

                    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

                    Working...
                    X