Announcement

Announcement Module
Collapse
No announcement yet.

Is this Dr. crazy? Or doesn't it matter?

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

  • Is this Dr. crazy? Or doesn't it matter?

    So, SIL had 2B classic seminoma, single 2.7cm node. finished 3X BEP Nov. 11, 2016. CT scan in Dec.showed it had shrunk considerably. Last scan (3 months from end of chemo) was March 30-showed no enlarged node. My understanding of the current guideline is that he should have his next CT end of June-every 3 months for the first year. He saw the onc. yesterday, who said he was so pleased that he is putting him on a 6 month schedule!! I thought the first year was the most likely time for recurrence, so why would he do this? I am not happy. Did the guidelines change yet again, or does the onc. have that much latitude? He cannot go elsewhere, as he has no insurance, but is being treated at a V.A. hospital at no cost. Do we make a big deal out of this or not? Dr. Einhorn did call it a "very small cancer" so...

  • #2
    By schedule, is it bloods every 2 months or so and scans every 6 months?

    My schedule is 2 month bloods, 1 year CT as they don't want me to be exposed to any more CT scans if possible.

    Seminoma though I would expect a bit more CT coverage. How was his bloods before, any raised markers?
    24 year old diagnosed 6/11/16
    Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
    Pre/o CT Clear
    Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
    Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
    Post-op CT with one enlarged lymph node - 1.5x1cm
    Borderline stage 2B/3B
    BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
    CT and markers clear - in remission - 28/2/16

    Comment


    • #3
      No, never had raised markers.

      Comment


      • #4
        Hmm, yh for seminoma I would perhaps look at scans maybe 4 months. But, i'm not too knowledgable with aftercare so i'll leave it to someone else to comment.
        24 year old diagnosed 6/11/16
        Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
        Pre/o CT Clear
        Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
        Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
        Post-op CT with one enlarged lymph node - 1.5x1cm
        Borderline stage 2B/3B
        BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
        CT and markers clear - in remission - 28/2/16

        Comment


        • #5
          You could have a scan at 6 months and then at 12 months and annually for a few years. However, I would personally not be that overly concerned if the doctor wanted to switch to wait for 6 months after the first 3 month scan. The follow up schedules vary greatly and there is no perfect schedule. If however, you want to speak to the physican then the NCCN guidelines could be used to argue your case.

          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

          Comment


          • #6
            The guidelines are just guidelines, not rules that have to be followed by everyone.Each doc decides how closely they follow them on a case by case basis adding their own experience to the mix.There seems to be a tendency to try & reduce radiation exposure since their is little difference in survival or treatment between detecting a recurrence at 3 months vs 6 months. I would not be concerned since the chances of recurrence after a good response to chemo are so very low.

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

            Comment


            • #7
              Your onc is not crazy.
              The normal schedule in my hospital is 4 yearly checks for the first 2 years.
              But there is a catch: Once you are finished treatment you will likely get a CT to make sure everything is clear.
              You should then get chest x-rays and bloods done every 3 months. After 12 months you will get another CT.
              The truth is, the likely hood to catch a recurrence in your lungs is 1/600.
              It will most likely be caught in bloods with tumor markers, but again unlikely with Seminoma stage 2B like mine.

              You can convince your doctor to give you bi-yearly MRIs or pay for those yourself. Otherwise, the only real way of catching a recurrence will be when your go for your yearly CT scan.
              19/1/16 – Lump on right testicle, confirmed on CT scan with normal tumor markers, Right RP lymph node 9.1mm(still normal range but suspicious)
              27/1/16 – Right Inguinal orchiectomy
              03/2/16 – Histology, 100 % Seminoma, with Rete Testis Invasion, Pt1
              04/2/16 - PET scan, Blood work, Right Retroperitoneal lymph node 11.1mm (lit up on PET scan suggesting tumor activity), Normal Tumor Markers. Stage 2A
              09/2/16 - Selection of treatment - Robotic-RPLND, 2 cycles Carboplatin
              22/2/16 - Robotic RPLND with DaVinci robot at Royal Marsden in London
              01/3/16 - Histology 100% Seminoma, 3 nodes largest 30mm, 3mm, 1mm
              07/3/16 - 1st round Carboplatin
              01/4/16 - 2nd round Carboplatin
              15/5/16 - Got engaged to my greatest cheerleader
              25/7/16 - CT Scan, 1st All clear
              07/11/16 - Chest X-Ray, 2nd all clear

              Comment


              • #8
                Originally posted by Davepet View Post
                The guidelines are just guidelines, not rules that have to be followed by everyone.Each doc decides how closely they follow them on a case by case basis adding their own experience to the mix.There seems to be a tendency to try & reduce radiation exposure since their is little difference in survival or treatment between detecting a recurrence at 3 months vs 6 months. I would not be concerned since the chances of recurrence after a good response to chemo are so very low.

                Dave
                Thanks ,Dave! Your responses are always so reassuring.

                Comment

                Working...
                X