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Recurrance??? Next course after BEP?

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  • Recurrance??? Next course after BEP?

    Hi all, thinking I was in the clear, it's been awhile since I was last active on here. However, it seems like it is back, but i have no treatment plan, and feel like I'm in limbo...i would welcome your thoughts

    to go back in time a bit, i was diagnosed about this time last year, pure seminoma. My hcg did not normalize, and began to rise after the I/O. My second post I/O CT indicated spread to the lymph nodes, and the doctor recommended 3xBEP. I wondered about doing RPLND, but the thought of surgery scared me more than the chemo, and he felt the BEP would do the trick, so I followed the recommendation. I finished the BEP at the beginning of this year. Post BEP CT was good, tumor markers were normal, and the doctor told me it was successful.

    The first quarterly surveillance was done at the end of April and I had a slightly elevated HCG (14). The doctor ordered a CT, which showed no changes. A second blood test about 2 weeks later showed a slight increase in the HCG (to 18) and a third, about 3 weeks after that was at 16. A forth, yesterday, went up to 20. We had figured the HCG would've increased significantly over this time period (about 1.5 months) so when I saw my oncologist today he seemed a bit perplexed. He wasn't ready to order a new CT or a PET yet and he said he wants to discuss my case with others (tumor board st MD Anderson), and said he may need to call Dr. Einhorn as well.

    as many of you have probably experienced, the unknowns and waiting are harder on me than the treatment has been. I feel like I'm in limbo, and don't know what to expect. I've been trying to prepare myself mentally for the RPLND, but not sure how I'll go about that if it is indeed the course of action. I will have to travel to get it done (I'm in New Mexico) and because my doctor is affiliated with MD Anderson, he would send me to Houston. Does anyone have experience with the surgeons at MD Anderson? The Mayo clinic in Phoenix, or University of Colorado (a TC center of excellence) might be easier for me do to because of proximity, and where I have friends, any experience here with them?

    thanks

  • #2
    With a clear CT, I'd be surprised if a rplnd was recommended. If they have not done so, I would want an U/S on the remaining testicle to rule that out as the source.

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

    Comment


    • #3
      I’m not going to have a huge amount to add. I know the waiting is torture.
      If you have a clear CT RPLND doesn’t seem to make sense, to me at least. It’s an invasive procedure but with knowledge of the procedure the worst part for mine was the first day or two after. And that was mostly because I didn’t know beforehand morphine and I do not get along.

      As far as MD Anderson goes, I can’t speak to surgeons but the facility itself is wonderful. I’m, most likely, going to be spending 4-5 months there for stem cell transplant/ high dose chemo. Everyone there was extremely helpful, they take the time to make sure your comfortable with everything. For what I’ll need they have been fantastic so far.

      Comment


      • #4
        Thanks for the responses.
        I did ask about doing an ultrasound, but after the exam he wasn't ready to order it, possibly after the 'tumor board' meets to discuss my case.
        My doctor had previously suggested that the RPLND could be in my future with an explanation alone the lines of 'the surgeons would argue that that is where the disease was last observed, so is the most likely place for anything to remain'. That makes sense to me, but isn't a real convincing argument either.

        Comment


        • #5
          Hi all, I'm still hanging out in limbo, thinking the cancer is growing and spreading, and it seems like I'm just waiting for something to show up on a scan before starting at treatment. I see my doctor again on Monday, my last hcg test went up a little bit again (to 28 now). My doctor contacted Dr Einhorn, and here is the response:
          Doubt this is recurrence as expected cure rate 99-100%. Would first repeat hCG to R/O lab error. Would ask about marijuana or CBD oil, which can falsely elevate hCG. If not an issue, would give 300 mg depotestosterone and repeat hCG 1 week later. If it suppresses, prior hCG elevation due to cross reactivity with LH. If despite the above hCG still rising let em know.


          I wish I could be optimistic that it is not recurrence. Maybe I'll be lucky and it will be the LH (I'm comfortable ruling out the lab, and I'm not using marijuana, cbd).

          Comment


          • #6
            After following Doc E's instructions, I would insist on an U/S of the remaining guy. They are relatively inexpensive, safe, & easy. Might as well rule that out, since, in my mind at least, with clear scans I would want to know for sure.
            Dave
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #7
              I agree with Dave- take a look at other testicle via u/s. I would continue following HCG, Your lungs were checked correct during followup?
              Son Grant
              dx 12/21/16 at age 17

              BEP x3
              Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
              2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
              Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

              Comment


              • #8
                Thanks for the advice, I will do that. Yes, CT of chest was clear. Would the CT be as effective as the U/S? Not that this based on much, but I feel like my doc wants to do another CT, but trying to give it some more time and not does me up too much.

                on a side note, I think my beard has been thinning. I'm not real sure, but it seems like it has been growing slower and patchy over the last month or so...corresponding with this elevated hcg. Is that something that the hcg could be causing, or could it be an indication of other hormonal imbalances (eg, low testosterone)

                Comment


                • #9
                  U/S only for testicle. The other imaging used for TC is CT scan of and sometimes Pet Scan for Seminoma. x-Ray can be used for chest. The beard could be low testosterone, stress, or even normal post chemo hair follicle cycle since you are not too far out.
                  I think you answered already but you are not using anything that could raise HCG?
                  Son Grant
                  dx 12/21/16 at age 17

                  BEP x3
                  Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                  2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                  Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                  Comment


                  • #10
                    Without a clinically significant and continuous rise in beta-hCG, I wouldn't expect them to rush into treatments, without other proof, such as something being seen on CT imaging. Likewise, assuring that there isn't a lab cross reactivity, which could be due to elevated LH due to low testosterone as mentioned is important. If indeed tumor markers are rising, I would not expect that RPLND would be a preferred option. Usually, they like tumor markers to have normalized but a decision would have to be made then. An RPLND for seminoma is rare as well, without post-chemotherapy residual masses.

                    I have met/spoken too the RPLND Surgeons at Mayo Phoenix and Banner MD Anderson in Phoenix. I am very familiar with the team at the University of Colorado as well. You can always email me if having to go there is necessary. Unfortunately, I think at this point you are still stuck in the unknown waiting period, which as you know, is the worse.

                    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


                    • #11
                      Hi Guys
                      I have been waiting to post an update until i felt that there was more to say. Since my last post, we followed Dr. E's suggestion and dosed me up with testosterone (on July 10). The b-hCG was at 28 on June 29, and 27 on July 17, a week after the testosterone dose. My understanding is that this eliminates the potential for an issue with LH. In an email follow up, Dr. E said that he still felt that recurrence was unlikely, and suggested serial b-hCG monitoring. So, we followed that with the next b-hCG test on Aug 6, with the result up to 69. That increase seemed pretty significant so we did a CT yesterday (Aug 20), and another b-hCG--result was 240. I just got the results of the CT:

                      Stable CT scan of the chest, abdomen, and pelvis without evidence to suggest recurrence or metastatic disease.

                      Prior to the I/O, the b-hCG was at 400, and that was a fairly large mass. Prior to BEP the b-hCG was at 99 and the CT noted:

                      significant prominent soft tissue densities are seen in the retroperitoneum. The largest focus measures 3 x 2.9 x 4.4 cm.

                      So, it seems pretty good that nothing is visible, but has me really freaked out that the b-hCG is higher now than when i had a golf-ball size tumor. Could it still just be at a size that isn't really visible, or is it just growing someplace we didn't look yet (e.g., the other teste).

                      I see the doctor tomorrow, and should be heading for the U/S next. (During our last discussion, he suggested we wait for the results of the CT--previous physical exam of the testicle didn't indicate anything abnormal, so he didn't feel like a U/S was warranted at that time).

                      Any thoughts from ya'll are much welcome. I had thought that after the hCG jumped up that the CT would surely show something, and that my appointment tomorrow would have us scheduling treatment, but now i don't know what to expect (except likely more waiting and higher anxiety). What is going on with me, and what is next??

                      Comment


                      • #12
                        As I suggested before,I would insist on an U/S of your remaining guy. There has to be *something* raising hcg that high.
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #13
                          Hopefully an u/s will clarify things. Have you gotten back to Dr. E regarding significantly higher HCG?
                          Son Grant
                          dx 12/21/16 at age 17

                          BEP x3
                          Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                          2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                          Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                          Comment


                          • #14
                            I agree with the other regarding getting an US done on the remaining guy.

                            I would also ask Dr. E. if his team could look over that latest CT scan. Sometimes it's good to have a second set of eyes looking at a scan. Especially docs. who are specializing in this specific cancer.

                            - Matt
                            March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                            March 13th: Left IO 100% Classic Seminoma
                            6.3 x 5.1 x 3.8 cm, no invasion of anything
                            LDH never fully normalized
                            Stage: IS
                            Watchful Waiting
                            May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                            May 12th: started 3xBEP
                            Neupogen during Cycle 2 and 3
                            July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                            August 4th: Post Chemo CT/PET scan
                            September 4th: Port removed
                            July 10th 2018: 4 YEARS ALL CLEAR !

                            Comment


                            • #15
                              I just had the U/S, and nothing was detected. I don't even know how to feel about the result. It is a relief thinking I won't have to do another I/O and TRT forever, but I was also hoping this would identify the problem and end this period of living in limbo and move on with some treatment.

                              When I saw him on Wed., my doctor said he would be in contact with Dr. E on the latest results, and suggested that a trip to Indiana might be in my future. He also said we may need to do a PET scan next--would there be some sort of minimum wait after the CT before I could do that? He is in agreement with Dave and is convinced that something is raising the hCG so high. He also didn't think it is likely to have spread to my head, but it seems like the only place we haven't looked yet, so I am wondering if we should be looking there.

                              I agree with having others look over the CT (and the U/S), I'll suggest that next.

                              Thanks for all the thoughts, I'll keep you posted.

                              Comment

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