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Results from Orchiectomy but no CT Scan yet. Is staging final? Is it good news?

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  • #16
    Sounds to me like you are getting superb care. Good luck with your tests tomorrow! I know it can be daunting to face all those tests, but you are getting a VERY thorough check-over.

    In response to your question about a chest x-ray vs. a CT scan of your chest - yes, the x-ray is the generally preferred test there. It may even be overkill to do either one in your case, given the extremely low risk profile you have (relatively small tumor, clean margins, negative serum marker tests before the orchiectomy, seminoma pathology from the testicle).

    In terms of how often to expect follow-up appointments, there is a pretty wide range of practices used, certainly between countries, but even here within the US. I think it's fair to say we don't really know exactly what the optimal follow-up plan is, especially in very low risk situations like yours (and mine). Most likely, they will want you to come back for more blood tests and imaging fairly often in the first year (maybe every three months (3,6,9,12), maybe (3,6,12), or even some other plan). Then a couple visits in the 2nd year, and then fewer and fewer after that, until the 5th year anniversary. In many countries, they stop after 5 years because the risk of a late relapse is so low, but in some places in the US, they keep going to 10 years.
    Your oncologist should be willing to negotiate to some degree, if you have strong preferences for a more or less aggressive surveillance schedule.

    I think sometimes in cases like yours (and mine), where the long-term prognosis is "statistically indistinguishable from 100%", the clinicians may seem disinterested or distant because they put us in a mental box of "no worries".


    So, here's a bit of my story... At the age of 49, I felt a painless lump (really my whole testicle) on May 18, 2017, called my primary care provider (who I'd only met once, years ago), and didn't get a response for a week, then they set up an appointment for 3 weeks later. So, I gave up on that and went to urgent care, and the doc there only took a matter of seconds before saying, we need to get you over to ultrasound immediately. I was in his office 4-5 minutes tops! But he was great. I really liked him. Got the ultrasound a few days later, and also met with a urologic surgeon (loved her too!), this was all in a matter of days. She wanted to remove the tumor immediately, but I held off for 2-3 days so that I could go to a 50th year reunion of a major event in my parents' life. My tumor was middling size - 4.5cm by the time they removed it, there was evidence that the tumor had already spread a little bit beyond the testicle itself, but not beyond where they cut it out, and one of my tumor markers was very slightly elevated (hCG 3.5) before the surgery. All the tests we negative after the surgery, and the abdominal/pelvic CT was negative. They didn't bother with a chest x-ray because they thought my risk was too low to warrant it.
    Then, things got more complicated. I really didn't want to do any more CT's, because I've already had a few when I was younger, and I wanted to be able to "spend" the radiation burden judiciously later in life if I need them (CT's have a low radiation burden, but it does add up, especially the longer you expect to live, and I expect to live into my 90's given family history). But my oncologist refused to consider using MRI's as a follow-up imaging technique, so I was really pressured into doing chemo "instead" of surveillance. In retrospect, it was absolutely the right call for other reasons, but at the time, I felt like I was being railroaded and misunderstood. I can't say enough for having good communication with your providers, and an oncologist you can "work with", because that's a much longer relationship than with the surgeon.
    For me, chemo was no party. I didn't get any of the usual side effects (not a shred of nausea or appetite problems), but I got walloped with fatigue and cognitive difficulty, which appears to be a very rare reaction to it. I spent the entire month of August in bed, and most of September (I really only left the house to teach, then collapsed back into bed as soon as the class was over). Again, this is a very unusual reaction to the chemo, most guys get some degree of nausea, maybe some other stuff.
    My oncologist refused to believe that the fatigue I was experiencing was in any way related to the cancer or the chemo, so she refused to help me fill out FMLA paperwork, and I was stuck showing up for work unable to do it after I blew through my sick and personal time. She may have been sympathetic in her heart, but boy did she have a hard time expressing it. She would just keep repeating the NCCN guidelines at me, rather than expressing any curiosity about helping me figure out what was going on - why did I have this unusual reaction? And what should I do to recover from it? No help at all.
    At any rate, I switched to a new oncologist who is awesome. He totally gets why I'm hesitant about doing CT's, even though he prefers CT's. We've come to an agreement that we can monitor me with MRI's as the usual method, but if my blood tests flag positive or I'm experiencing symptoms that might be relapse-related, I'll do the CT. Not only that, but every time I've called his office or written an email, he gets back to me the same day. It's night and day. He's also curious about the fatigue, even though he doesn't have any great ideas about what's driving it or what to do about it, at least he can acknowledge that, and express sympathy with what I'm going through.

    All right, I've blabbed on long enough.
    Good luck tomorrow! When things feel big and complicated, celebrate the little things. Keep your sense of wonder and curiosity finely honed. And know that there are a ton of people backing you up.

    Let us know how things turn out, and what you want to learn from our experiences!
    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.

    Comment


    • #17
      Oh, and yeah, a second opinion is always a good idea. Never be ashamed to ask for one.
      I used to live in SF (Haight&Divisadero), but moved back East 5 years ago. Back then I was in environmental health, so I really don't have connections to help you find someone out there. It shouldn't be hard, there are lots of great facilities within a short drive.
      I would wait a few days until your CT results are in, because the second opinion oncologist will want to work from that baseline information.
      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.

      Comment


      • #18
        Originally posted by billandtuna View Post
        Oh, and yeah, a second opinion is always a good idea. Never be ashamed to ask for one.
        I used to live in SF (Haight&Divisadero), but moved back East 5 years ago. Back then I was in environmental health, so I really don't have connections to help you find someone out there. It shouldn't be hard, there are lots of great facilities within a short drive.
        I would wait a few days until your CT results are in, because the second opinion oncologist will want to work from that baseline information.

        Thanks for both your posts. Really helpful. Headed for CT Scan X Ray in a few hours. Results tomorrow. (Did blood tests this morning - They took 3 samples this time, are they checking for more stuff? Only took 2 before the surgery)

        Comment


        • #19
          Good luck with the tests! Sounds like a busy day!
          I don't know why they drew 3 tubes instead of 2 - I think they did the same for me, but I don't really remember, to be honest.
          My guess is that they drew a third tube for some other routine tests like liver and kidney function.

          Let us know how things turn out!
          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.

          Comment


          • #20
            Results are in! (Took only 3 hours to get blood, CT Scan and X Ray results - needless to say I appreciated the expediency). Only missing item is the BetaHCG (it was <.6 before surgery_
            1. Blood tests: LDH = 207 (<340) and AFP=2 Within standard ranges
            2. Chest X-Ray: No acute cardiopulmonary disease or radiographic evidence of metastatic disease. The cardiomediastinal silhouette is normal. Minimal biapical pleural-parenchymal scarring. Lungs are otherwise clear. No significant bony abnormalities.
            3. CT Scan:
            1. 1. No evidence of pathologic lymphadenopathy or metastases in the abdomen or pelvis.
            2. 2. Postsurgical changes from recent left radical orchiectomy, with a small subcutaneous fluid collection.
            I think it's good, right? (These were all released by my doctor via the Stanford Health App - when it's bad he usually calls - still need to talk to him and have a follow up appointment)

            The #2 from the CT is what I was describing in my other post about late swelling (started 5 days after surgery). Will discuss with doctor later
            The
            Minimal biapical pleural-parenchymal scarring.. Interesting one. Usually a consequence of exposure to asbestos.. Gonna have to study this. No clue where..

            Based on this (and the Seminoma, pT1a pre staging done from the biopsy) what do you think the course of action will be?

            For the purists: the CT Scan details
            Lower thorax: Normal.
            Liver and biliary tree: Normal.
            Gallbladder: Normal.
            Spleen: Normal.
            Pancreas: Normal.
            Adrenal glands: Normal.
            Kidneys and ureters: Normal.
            Gastrointestinal tract: Normal.
            Peritoneal cavity: No free fluid.
            Bladder: Normal.
            Prostate and seminal vesicles: Normal.
            Vasculature: Patent.

            Lymph nodes: No evidence of pathologic lymphadenopathy in the abdomen or pelvis.
            Abdominal wall: Mild infiltration at the left anterior subcutaneous tissues at the level of the pelvis is likely related to recent left orchiectomy, with a small left subcutaneous fluid collection with partial rim enhancing without gas.
            Musculoskeletal: Note is made of a sclerotic focus in the left femoral head, likely representing a bone island.

            Comment


            • #21
              That is great that they made the results available to you so quickly. Assuming that the beta-hCG is normal I would guess that the doctor will tell you that you have stage Ia seminoma with the treatment options of active surveillance, adjuvant carboplatin or adjuvant radiation therapy. Regardless of which you choose your survival rate is essentially 100% and it is more a matter of assessing your risk aversions to determine which is the best fit for you. Many experts shy away from adjuvant radiation therapy, especially for stage Ia disease because of the risk of secondary malignancies. Lately, there has been data questioning the effectiveness of a single adjuvant carboplatin dose. Active surveillance is the most preferred route for most experts but it does run the highest chances of needing full-dose chemotherapy if you do relapse. Actually, another option if you did catch any relapse early would be an RPLND via the clinical trial that is both at Stanford and UCSF https://clinicaltrials.gov/ct2/show/NCT02537548 if you were adverse to full-dose chemotherapy.

              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


              • #22
                Originally posted by Mike View Post
                That is great that they made the results available to you so quickly. Assuming that the beta-hCG is normal I would guess that the doctor will tell you that you have stage Ia seminoma with the treatment options of active surveillance, adjuvant carboplatin or adjuvant radiation therapy. Regardless of which you choose your survival rate is essentially 100% and it is more a matter of assessing your risk aversions to determine which is the best fit for you. Many experts shy away from adjuvant radiation therapy, especially for stage Ia disease because of the risk of secondary malignancies. Lately, there has been data questioning the effectiveness of a single adjuvant carboplatin dose. Active surveillance is the most preferred route for most experts but it does run the highest chances of needing full-dose chemotherapy if you do relapse. Actually, another option if you did catch any relapse early would be an RPLND via the clinical trial that is both at Stanford and UCSF https://clinicaltrials.gov/ct2/show/NCT02537548 if you were adverse to full-dose chemotherapy.

                Mike
                Thanks Mike. Yes these will all be questions I need to ask. I need to study the side effects of carboplatin and by how much it decreases the chances of relapse. Basically easier chemo now or surveillance with the risk of harder one later. The other gentleman who goes to Stanford I think had an identical diagnosis and chose surveillance (he posted about MRI vs CT). I think it is a personal choice but I will need info and to discuss this with my doctors.

                Comment


                • #23
                  Originally posted by lautreamont View Post

                  I need to study the side effects of carboplatin and by how much it decreases the chances of relapse. Basically easier chemo now or surveillance with the risk of harder one later..
                  These was just a editorial of sorts on carboplatin published in the Journal of Clinical Oncology by some world recognized testicular cancer experts at: http://ascopubs.org/doi/full/10.1200/JCO.2017.76.5610 It has plenty of references but of interest may be the SWENOTECA data at: https://academic.oup.com/annonc/arti...7/1299/1741853 and the editorials on it at: https://academic.oup.com/annonc/arti...8/1648/1741270 and https://academic.oup.com/annonc/arti...9/1809/1741359 I would take a look and certainly make sure your MD is aware of the data for the discussion, however, the decisions are very much personal taking into account your risk aversions, lifestyles, ability to be compliant and handle any anxiety that may come with the decisions.

                  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


                  • #24
                    Originally posted by Mike View Post

                    These was just a editorial of sorts on carboplatin published in the Journal of Clinical Oncology by some world recognized testicular cancer experts at: http://ascopubs.org/doi/full/10.1200/JCO.2017.76.5610 .....

                    Mike
                    Mike
                    Thanks!!! That was a great read! Now it says that 2 criteria often used are size (mine was 2.3cm < 4cm) and RTI. I am not sure how I determine RTI. Below are the original results from the orchietectomy. Is that were it is calculated? Or is it just from the pt1a label?
                    The specimen is inked blue and bivalved to reveal a 2.2 x 2.1 x 2.1 CM tan-white lobulated firm, well-defined mass. The mass abuts the smooth, tan tunica albuginea, occupies ~50% of the testis and is 7.8 CM from the spermatic cord margin. The remaining parenchyma is tan, stringy with an orange tint. No additional masses are noted. The epididymis is tan, unremarkable. A photo is taken. Rep. sections are
                    submitted in cassettes A1-A8 as follows:
                    A1: spermatic cord margin
                    A2: mid spermatic cord
                    A3: base spermatic cord
                    A4-A5: full thickness mass
                    A6-A7: additional full thickness mass
                    A8: mass to epididymis Mirbegian (2/3/2018)

                    Comment


                    • #25
                      It should actually state rete testis involvement in the pathology report but it is not uncommon that some pathologist may not mention it. You could ask pathology or ask your doctor to ask pathology to re-read your slides and make an addendum to your report if that information is missing. Sometimes if it isn't present then they will not mention it but that in itself is making an assumption so I would just ask for clarification if you would like that information.

                      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


                      • #26
                        Originally posted by Mike View Post
                        It should actually state rete testis involvement in the pathology report but it is not uncommon that some pathologist may not mention it. You could ask pathology or ask your doctor to ask pathology to re-read your slides and make an addendum to your report if that information is missing. Sometimes if it isn't present then they will not mention it but that in itself is making an assumption so I would just ask for clarification if you would like that information.

                        Mike
                        Yeah I read again the entire pathology after surgery and did not find rete testis mentioned anywhere. Will need to ask. Regardless, and given the numbers in the study you shared, since at worst I have 1 of the 2 factors, 13.6% is a number I can live with, and given the frequency at which I would be checked, even if it comes back, will be at a treatable stage.. Obviously I am just conjecturing. Will need a good talk with an oncologist. In the meantime I will send a note to the urologist to ask about the RTI.

                        Comment


                        • #27
                          Hi Lautreamont,
                          That's great news! Find a friend (or five) to raise a glass with to wish the old boy a bon voyage! If I were still in SF I'd volunteer for the task, LOL!
                          I fully concur with Mike's read on your situation, it was pretty similar to mine, so I've read a few dozen primary source material studies on the topic. The editorial he sent you is an excellent summary of the current knowledge.

                          It is very likely that you have no "risk" factors for relapse (which doesn't mean it's impossible, just quite unlikely). Having said that, you should get some definitive answers from your oncologist to make sure that 1) your beta-hCG is still below the limit of detection (it almost never goes up right after orchidectomy, and even when it does, it's usually a false positive), and 2) that there was no rete testis invasion, just to be sure.
                          Even if you did have two or three or four "risk" factors, starting with surveillance alone is very much a viable option. So is a single round of carboplatin, or a double round. Radiation of your lymph nodes is possible, but I think most oncologists would be hesitant to recommend it facing a situation like yours where the likelihood of a complete cure from surgery alone is so high, and so much less intrusive options are available now for the double assurance of adjunctive therapies.

                          When it comes time to think over your options for surveillance (frequency, MRIs vs CTs, whatever), or adjuvant therapy (1x7AUC or 2x7AUC carboplatin, or even radiation), we're here to help you sound it out and figure out what's your best option.

                          I know it's annoying when docs release information to your portal before talking with you about it - but try to take it as a sign that they aren't worried on your behalf, and let any scary words slip into a box of "I'm going to have to ask about that" rather than dwelling on it night and day. I know I struggle to do that, but when I've been able to consciously set the scary words aside and just put a bookmark on them, it has been much better for my well-being.

                          I can hear a bit of nerves in your tone - please forgive me if I'm over-reading things - I think getting a second opinion will be helpful in putting your mind to rest that you are in absolutely terrific shape, and getting very thorough care.
                          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.

                          Comment


                          • #28
                            You read me well (I am on the anxious side). And what you wrote is most helpful. Thank you! You guys are giving me great inputs and allowing me to ask the right questions.
                            I also agree on the portal vs talk. The doctor has to approve the release so when they do without calling you, it usually is positive news (when they found the lump I got a call before any results)
                            You mention 3-4 factors. From the read size and rete testis seem to be the major 2. What are the others? Family history?
                            Is there a good post about going through a carboplatin treatment? (side effects etc).
                            My wife and I celebrated Valentine's Day with a BIG smile. The release of results just hours after the scan was truly a blessing. I slept much better.


                            Originally posted by billandtuna View Post
                            Hi Lautreamont,
                            That's great news! Find a friend (or five) to raise a glass with to wish the old boy a bon voyage! If I were still in SF I'd volunteer for the task, LOL!
                            I fully concur with Mike's read on your situation, it was pretty similar to mine, so I've read a few dozen primary source material studies on the topic. The editorial he sent you is an excellent summary of the current knowledge.

                            It is very likely that you have no "risk" factors for relapse (which doesn't mean it's impossible, just quite unlikely). Having said that, you should get some definitive answers from your oncologist to make sure that 1) your beta-hCG is still below the limit of detection (it almost never goes up right after orchidectomy, and even when it does, it's usually a false positive), and 2) that there was no rete testis invasion, just to be sure.
                            Even if you did have two or three or four "risk" factors, starting with surveillance alone is very much a viable option. So is a single round of carboplatin, or a double round. Radiation of your lymph nodes is possible, but I think most oncologists would be hesitant to recommend it facing a situation like yours where the likelihood of a complete cure from surgery alone is so high, and so much less intrusive options are available now for the double assurance of adjunctive therapies.

                            When it comes time to think over your options for surveillance (frequency, MRIs vs CTs, whatever), or adjuvant therapy (1x7AUC or 2x7AUC carboplatin, or even radiation), we're here to help you sound it out and figure out what's your best option.

                            I know it's annoying when docs release information to your portal before talking with you about it - but try to take it as a sign that they aren't worried on your behalf, and let any scary words slip into a box of "I'm going to have to ask about that" rather than dwelling on it night and day. I know I struggle to do that, but when I've been able to consciously set the scary words aside and just put a bookmark on them, it has been much better for my well-being.

                            I can hear a bit of nerves in your tone - please forgive me if I'm over-reading things - I think getting a second opinion will be helpful in putting your mind to rest that you are in absolutely terrific shape, and getting very thorough care.

                            Comment


                            • #29
                              Originally posted by billandtuna View Post
                              My oncologist refused to believe that the fatigue I was experiencing was in any way related to the cancer or the chemo, so she refused to help me fill out FMLA paperwork, and I was stuck showing up for work unable to do it after I blew through my sick and personal time.
                              Fatigue is actually quite common with chemo, according to my oncologist. It was my worst side effect There was no way could have even tried to force myself to go to work.

                              Dave

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

                              Comment


                              • #30
                                betahc<0.6 and no rete testis involment. Probably going to confirm 1A. Given the size of the tumor (2.3cm) that puts me clearly in the surveillance recommended category. Meeting with urologist on Wednesday to discuss. THanks all for the support!

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