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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 18.7cm x 15.7cm)
      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 - (7.3cm x 4.6cm) max SUV 4.6 - Mostly clear!
      1/14/19 - PET Scan - (5.9cm x 2.9cm) max SUV 3.0 - All clear!

      Comment


      • #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

          Comment


          • #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 18.7cm x 15.7cm)
            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 - (7.3cm x 4.6cm) max SUV 4.6 - Mostly clear!
            1/14/19 - PET Scan - (5.9cm x 2.9cm) max SUV 3.0 - All clear!

            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
              Dec 2017 - felt lump and never checked it out.
              07.17.18 - Diagnosed with TC
              07.20.18 - Left I/O
              08.04.18 - Pathology - Seminoma
              08.24.18 - CT Scan shows 3 enlarged lymph nodes (3.3x3.1cm & 3.3x3.2cm & 5.1x3.9cm) no other organs met
              09.04.18 - OFFICIAL STAGE 3A Seminoma
              09.06.18 - Started 4xEP @ MD Anderson
              11.12.18 - Finished 4xEP
              12.20.18 - Lymph nodes under 3cm - Starting surveillance
              06.16-19 - Next CT Scan/Blood work/X-Ray

              Comment


              • #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 18.7cm x 15.7cm)
                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 - (7.3cm x 4.6cm) max SUV 4.6 - Mostly clear!
                1/14/19 - PET Scan - (5.9cm x 2.9cm) max SUV 3.0 - All clear!

                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
                  Dec 2017 - felt lump and never checked it out.
                  07.17.18 - Diagnosed with TC
                  07.20.18 - Left I/O
                  08.04.18 - Pathology - Seminoma
                  08.24.18 - CT Scan shows 3 enlarged lymph nodes (3.3x3.1cm & 3.3x3.2cm & 5.1x3.9cm) no other organs met
                  09.04.18 - OFFICIAL STAGE 3A Seminoma
                  09.06.18 - Started 4xEP @ MD Anderson
                  11.12.18 - Finished 4xEP
                  12.20.18 - Lymph nodes under 3cm - Starting surveillance
                  06.16-19 - Next CT Scan/Blood work/X-Ray

                  Comment


                  • #24
                    Just did my second PET after chemo (first one was 1-month after chemo, second was 4-months after chemo). My original mass was 25cm x 18.7cm x 15.7cm.. In the first PET, there was still minor activity (max SUV 4.6) with a mass of 7.3cm x 4.6cm (not counting the craniocaudal dimension, which was 25cm in my pre-chemo CT scan). It shrank quite a bit (over 60?) but still showed a little activity, possibly inflation from post-chemo effects).

                    In the follow-up scan today (4-months after chemo), the mass has shrunk even more! Now we're down to 5.9cm x 2.9cm and max SUV of 3.0. So it shrank nearly 2cm more between month 1 and month 4! My doc expects it will continue to shrink.

                    It's amazing that with pure seminoma, platinum-based chemo can do such an amazing job. There's no sign of any active cancer so I'm officially on CT scans and blood work.
                    Last edited by dustumor99; 01-15-19, 01:10 AM.
                    March/April 2018 - Started feeling tightness in right abdomen
                    6/4/18 - US+CT confirm massive tumor in right retroperitoneum (25cm x 18.7cm x 15.7cm)
                    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 - (7.3cm x 4.6cm) max SUV 4.6 - Mostly clear!
                    1/14/19 - PET Scan - (5.9cm x 2.9cm) max SUV 3.0 - All clear!

                    Comment


                    • #25
                      That was a big tumor! Glad to hear it continues to shrink!
                      6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                      6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                      7/7/15: bHCG 56, AFP 42, LDH 322
                      7/13/15: begin 4xEP, end 9/18/15
                      10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                      10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                      4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                      4/20/16: RPLND @ IU - teratoma only!
                      9/27/18: all clears up to this date!

                      Comment


                      • #26
                        My first post chemo scan still showed a tumor, but all the scans after showed none. It will be interesting if yours shrinks further, please keep us posted.
                        Dave
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

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