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Terrified - Next monday results

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  • Terrified - Next monday results

    Hello

    I don't really know where to start. I've been reading the forum since my right orchiectomy on June 15th.

    It has been almost 1 month since the surgery. I've been very scared, quite lonely...I've been reading the Internet for so many hours (which has confused me even more).

    I am looking for survivor's input, thought, words... anything...

    Here's my story:


    Somewhere in May - Notice swollen right testicle
    May 27- Ultrasound
    First week of June - Ultrasound report - suggests neoplasia - recommends an urgent appointment with specialist
    June 7 - 1st appointment with urologist - says it's 90% sure it's cancer
    June 15 - Right orchiectomy - Urologist mentioned 1 marker was up and 1 node (I was under anesthesia, couldn't understand... but it freaked me out)
    Tried to get the info from the hospital, they said they couldn't give me anything


    June 23 - CT scan/Blood markers results given by my GP - He told me the urologist would review with me what it meant...

    AFP 2.6
    BHCG at 2 ui/L
    LDH 2.6

    CT scan: Found 2 nodes (7mm and 9mm) on the interaortocaval region - Radiologist wrote 2 infracentrimentric, non-specific nodes (doesn't say much). Also found 5mm node on external right iliac and another 7mm on the left external iliac.

    July 7 - Post-surgery blood tests - haven't got the results yet..

    I know pathology results will determine everything (review scheduled next Monday - July 19th with Urologist).

    I keep thinking about cancer...Based on what I know (blood markers and CT scan), I'm pretty sure I will have to do chemo (staging myself at least Stage 2A....). I know I shouldn't do that, but it's so hard right now being positive and strong... I wish it could be otherwise.

    Thank you in advance for your answers
    Last edited by SunMoon91; 07-12-21, 05:54 PM.

  • #2
    TC normally spreads to the retroperitoneal area, but enlarged nodes generally not a positive thing, especially coupled with a finding of TC in a testicle. Obviously the path report is needed, but I would expect chemo in your future, It is not fun, but ya get through it, & it is highly effective at curing this. Keep us posted as you learn more.

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

    Comment


    • #3
      Thank you for your reply.

      Based on what you've seen from previous posts or stories, were my blood markers pre surgery high? Should I ask for another CT Scan post surgery? Is there any possibility that these nodes are not malignant? What is their threshold usually? Or, are they going straight to Chemo without other tests?

      What important questions should I ask to the urologist on Monday? Or what key points should I focus on when he is going to give me the pathology results?


      Usually, how long does it takes to start chemo after they stage you? Should I get second opinions on the possible treatments? I'm from Quebec, Canada.

      Thank you again for replying (wasn't quite what I hoped for but was expected...)
      Last edited by SunMoon91; 07-12-21, 11:40 PM.

      Comment


      • #4
        CT scan seemed to be more identified by doctors rather than blood result. However, wish best lucks to you!
        03.01. 2021 ultrasonic examination detected mass
        03.11. 2021 "Highly suspected seminoma" by MRI report
        03.16. 2021 Left I/O
        03.26. 2021 Seminoma confirmed by pathology report.
        Surveillance...

        Comment


        • #5
          Your markers do not look high to me, but the LDH does not look correct, normally runs quite a bit higher. The size of the enlarged nodes and the type of cancer in the path report are going to be key points going forward. I believe 1 cm is the most common cut off , might be 2cm for pure seminoma. These are things to discuss w/ your doc, though, especially considering the location.

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

          Comment


          • #6
            Thank you Dave

            Comment


            • #7
              For what it's worth, just talked with the urologist's nurse, 2nd blood tests show bhcg < 0.6, don't know if it's a good sign... should it be at 0?

              Comment


              • #8
                From the Testicular Cancer Resource Center dictionary:
                Please note that the normal HCG level is usually less than 5 miu/ml. Also note that the HCG level can become elevated (falsely positive) due to abnormally low levels of testosterone or because of marijuana use.
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP

                Comment


                • #9
                  Hi,

                  Just got out of urologist's office for pathology results review.

                  I don't understand... He hasn't staged me.

                  He told me that I would have to wait 5 weeks to do another CT Scan to monitor my 2 interaortocaval nodes 7 & 9mm and that a multidisciplinary team will review my case to see if treatments are needed.I don't know what to think...

                  Here's what the pathology report says:
                  100% seminona
                  Teste testis and vascular invasion
                  Necrotic zones (???)
                  Size: 6x4x4.5 cm
                  No invasion of epididymis, hilar, tunica vaginalis
                  Spermatic cord ok
                  pT2

                  Blood makers post surgery normal
                  Last edited by SunMoon91; 07-19-21, 12:00 PM.

                  Comment


                  • #10
                    Is that normal that I'm feeling even more anxious? What should I do? Wait 1 month to see if I will get treatments?

                    Please let me know what you guys think.

                    Thank you

                    Comment


                    • #11
                      It sounds like to me that they are taking a conservative approach to evaluate the nodes vs. running straight to further treatments. This is common when the nodes are of borderline significance. The interaortacaval area is a common area for right sided testis metastasis but the cutoff is usually 1 cm. To make sure the nodes are significant, re-imaging is reasonable, especially if the CT was post-orchiectomy as the surgery can cause small changes. If they are determined to be of significance the short wait would not be expected to affect your outcomes in any manner. I would be surprised if they are concerned at all with the external iliac nodes, especially on the left side. While the waiting for answers stinks, I would take it as a positive and would estimate up to a 40% chance that the nodes may be insignificant.

                      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


                      • #12
                        Thank you Mike How and why do you estimate 40%?

                        Comment


                        • #13
                          I was basing the 40% off of this abstract from 2018 that actually avoided treatment in 60% of patents. https://ascopubs.org/doi/10.1200/JCO...36.6_suppl.560

                          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


                          • #14
                            Thank you Mike again for answering.

                            I've been reading about seminoma pT2 and given the size of the tumor, even though I'm staged 1B or 2A after the second scan... I believe surveillance should not be the preferred choice right?

                            Since the tumor was > 4cm with RT and LVI, chemo or radiotherapy should be considered?

                            I know I should be positive but it feels like I'm waiting 1 month to do chemo...

                            Comment


                            • #15
                              It's always best not to rush to treatment that might not be needed, especially since there is very low risk with TC these days. If you need chemo, waiting a bit is not likely to affect the outcome.But if youn don't that's better.
                              Jan, 1975: Right I/O, followed by RPLND
                              Dec, 2009: Left I/O, followed by 3xBEP

                              Comment

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