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Tumor size after 4xEP

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  • #16
    I need to edit above- if the standardized uptake value is greater than 4 then he recommended seeing him for possible RPLND. My sons SUV was less than 4 so he is on surveillance.

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    • #17
      Thanks Mike, Mick. Makes me feel better about stressing over the size.

      I have my follow up PET on Oct 10, which is 4.5 weeks after my last chemo (9/7). Is that too early? Should I be calling my oncologist and asking to push back another 2 weeks? It doesn't instill confidence if the general consensus is to wait 6 weeks. Keep in mind I haven't had an orchiectomy yet because the tumor size was too big and I needed immediate relief from that before doing a surgery. Would that justify moving up the PET date?
      March/April 2018 - Started feeling tightness in right abdomen
      6/4/18 - US+CT confirm massive tumor in right retroperitoneum (25cm x 17cm x 17cm)
      6/20/18 - Biopsy performed (suspecting sarcoma)
      6/25/18 - Diagnosed stage IIIC seminoma
      6/28/18 - Started 4xEP
      9/7/18- Finished 4xEP
      10/10/18 - PET Scan (awaiting results)

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      • #18
        Originally posted by dustumor99 View Post
        Thanks Mike, Mick. Makes me feel better about stressing over the size.

        I have my follow up PET on Oct 10, which is 4.5 weeks after my last chemo (9/7). Is that too early? Should I be calling my oncologist and asking to push back another 2 weeks? It doesn't instill confidence if the general consensus is to wait 6 weeks. Keep in mind I haven't had an orchiectomy yet because the tumor size was too big and I needed immediate relief from that before doing a surgery. Would that justify moving up the PET date?

        I'm not sure where you are being treated or their expertise but it may be worth asking the risk of having a false positive PET scan within 6 weeks of chemotherapy. In your situation, in needing the orchiectomy, I don't have a lot of information. Perhaps they can reach out to one of the TC experts, like the team at Indiana University and call them to see what they recommend. A list of experts is maintained by our friends at the TCRC and the IU team I know is n=more than happy to lend advice to your physicians. http://thetcrc.org/experts.html

        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.

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        • #19
          I'm no doc, but my best guess is 1.5 weeks more isn't going to make a big difference. Your tumor will either have reduced to close to what they like to see or it will still be large enough to take further action, also the pet scan will show if there is active cancer or not, I can't imagine another week & a half willmakemuch difference with that, either.

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

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          • #20
            Thanks again all. I'm getting treatment at MD Anderson, so I'm less inclined to question things as I know there one of the top notch institutions on cancer research and treatment.

            That said, I've tried to adopt the approach "trust but verify." I guess I'll ask them about the timeline and see what they say, I'd just hate to get a false positive or create any unnecessary concern because things were rushed.
            March/April 2018 - Started feeling tightness in right abdomen
            6/4/18 - US+CT confirm massive tumor in right retroperitoneum (25cm x 17cm x 17cm)
            6/20/18 - Biopsy performed (suspecting sarcoma)
            6/25/18 - Diagnosed stage IIIC seminoma
            6/28/18 - Started 4xEP
            9/7/18- Finished 4xEP
            10/10/18 - PET Scan (awaiting results)

            Comment


            • #21
              Originally posted by dustumor99 View Post
              Thanks again all. I'm getting treatment at MD Anderson, so I'm less inclined to question things as I know there one of the top notch institutions on cancer research and treatment.

              That said, I've tried to adopt the approach "trust but verify." I guess I'll ask them about the timeline and see what they say, I'd just hate to get a false positive or create any unnecessary concern because things were rushed.
              Hello,

              Who's your doctor at MD? I'm there with doctor Shi Ming Tu and I'm having a good feeling with him. I finished my third day of second cycle out of 4xEP. I did my blood work before and my LDH was 290 out of 540 before first cycle. I asked my doctor if he recommends a CT scan in the middle of the treatment and he didn't like it because in blood work he sees positive results. I asked him when will I have my CT scan after chemo and he told that he recommends it 4-6 weeks after the first day of last cycle. Did your doctor had It 4.5 weeks after first day of cycle too? As much information as I have they give it at least 4 weeks so the lymph nodes can shrink as much as they can and with your situation without Orchiectomy and such a big mass the 1.5 weeks doesn't seems to be quite of difference.

              Best of luck,

              Albano

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              • #22
                I am also a patient of Dr. Tu. He scheduled my follow up PET scan at 4.5 weeks after last chemo.

                I really like Dr. Tu and his staff, I think we’re both in good hands.

                How is your treatment going so far? Cycle 1 was the worst by far for me, with cycles 2 and 3 being way better. Cycle 4 was a little tough just because it was the last cycle and I felt beaten down, but still manageable. Are you doing inpatient? I did inpatient for the first 2 cycles.

                Good luck with your treatment!
                March/April 2018 - Started feeling tightness in right abdomen
                6/4/18 - US+CT confirm massive tumor in right retroperitoneum (25cm x 17cm x 17cm)
                6/20/18 - Biopsy performed (suspecting sarcoma)
                6/25/18 - Diagnosed stage IIIC seminoma
                6/28/18 - Started 4xEP
                9/7/18- Finished 4xEP
                10/10/18 - PET Scan (awaiting results)

                Comment


                • #23
                  Originally posted by dustumor99 View Post
                  I am also a patient of Dr. Tu. He scheduled my follow up PET scan at 4.5 weeks after last chemo.

                  I really like Dr. Tu and his staff, I think we’re both in good hands.

                  How is your treatment going so far? Cycle 1 was the worst by far for me, with cycles 2 and 3 being way better. Cycle 4 was a little tough just because it was the last cycle and I felt beaten down, but still manageable. Are you doing inpatient? I did inpatient for the first 2 cycles.

                  Good luck with your treatment!
                  I've only heard good words about him, even within some staff members who had experience with their family members. I guess I'm gonna wait 4.5 weeks too It's my last day of second cycle and I think I'm doing good. I'm continuing to work, such as on contruction job with a 8 foot ladder :P ... Until now the only effect are my hair, a bit tired and some reflux... Hope I can pass all cycles likes this... I live in Houston like 20 mins away so I'm outpatient... Cant stay here more than 8 hours, I go crazy hahahaa... Best of luck, maybe we gonna meet someday at doctor's Tu office

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