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Potential Round Two

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  • Potential Round Two

    Hello, I'm new to posting on this forum, although I found it very helpful eight years ago when I had TC for the first time (left, 100% embryonal, 3xBEP + RPLND). Right now, I'm in a bit of an odd situation. Two months ago I had an ultrasound because I found a small cyst-like mass on the epididymis. It turned out to be just that, a cyst, and nothing else was reported. Now, I'm traveling through South America for a month, and I've discovered a larger, harder lump on the back of my testes, separate from the cyst. I got an ultrasound at a clinic in Lima, Peru, and the technician reported to me that there were three nodes in the testes, one 12 mm and the other two about 2 mm. He suspected they were cancerous and suggested I go home for a CT scan. He didn't say anything about blood flow and I forgot to ask. I called my urologist, and his assistant said that the ultrasound two months ago didn't report anything like that, just the cyst, and they wouldn't be able to help without an ultrasound from my regular imaging place. I am shocked and confused how this is happening two months after my last ultrasound. I've booked a flight home and scheduled an appointment for tomorrow. I'm not seeking any particular advice. I'm just posting to see if others have similar experiences, and likely to also vent my frustration.

    Pete

  • #2
    Hey Pete, hold on, it's possible your man in Peru got it wrong, not sure if it's possible for these nodes to grow so fast in a month? Hopefully, this is a mistake or a misunderstanding!
    July 2016 - Left I/O
    December 2016 - BEPx3
    All clear for 1 year!

    My Testicular Cancer Support Kit
    First Oncologist Visit Checklist
    Simplify Cancer Podcast

    Comment


    • #3
      It sounds like you have already made arrangements to head home but if not, is there any way to just send the ultrasound images up for a second opinion? How
      Much longer were you going to be away? A few weeks most likely would have no impact on your outcomes, etc. any way to even get a second opinion in Lima?

      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


      • #4
        Thanks for the replies, Joe and Mike. I'm certainly hoping it's a mistake/misunderstanding. Unfortunately, it didn't seem there was any way to get around going home. I still have another three weeks on the trip, and most of it is remote. I doubt I'd be able to properly enjoy myself. The Lima clinic couldn't fax or email the results to anyone. They could only give me a hard copy. And I wouldn't really have time for a second opinion here in Lima before moving on/I'm not sure that would even put me at ease. I'm just going to turn this into a staycation instead, whether all is well or not.

        Comment


        • #5
          Well, if you weren't going to enjoy it then heading home was certainly the best move. Keep us posted on what you find out going forward.

          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


          • #6
            My appointment and US today were up and down. My urologist said after a physical examination that he thinks, most likely, it's a cyst, then a little less likely a torsion of some useless testicle appendage thing, and then much less likely a tumor. It doesn't feel like a tumor, and if there was a 12 mm tumor like the Peruvian technician said then we'd almost definitely be able to feel it. But then after my US later today, the technician relayed to me that the radiologist was going to recommend an MRI later. That was all I got, and I'll have to wait till Monday or Tuesday for the full report. I don't know what that means except I'm guessing either they think there's cancer but want to confirm, or they just can't tell what it is.
            Last edited by PeteyD; 08-10-18, 08:27 PM.

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            • #7
              Hey all, my US results were mixed, and I'm a bit unsure what to do now. The radiologist found two nodes, one 12 mm and the other 7 mm, with slight vascularity, and said it was undifferentiated between an infection and a rapid-growth tumor. I assume the rapid-growth part has to do with the fact that these nodes did not turn up on a US two months ago. There were also signs of epididymitis. Also, my tumor markers were thankfully normal. I'm getting an MRI today for another data point, but I wanted to pose the question to this forum whether there might be anything else worth doing, like antibiotics to rule out infection? Or if I should just go through with an orchiectomy as soon as possible at the risk of it being unnecessary? Any words or advice from this community are much appreciated.

              Comment


              • #8
                Not sure what to make of that, the U/S is usually pretty definitive & only rarely vague like this. I'd consider another U/S by a different technician & machine. I would nlot be surprised if the results were more definitive.

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

                Comment


                • #9
                  Another (welcome) twist in this story. The MRI radiologist came back saying that it did not look like a tumor, rather some sort of vascular issue. I don't have the actual report yet, but my oncologist shared this message after speaking with the radiologist. So the MRI points towards the non-cancerous camp, but they're still confused about the US, and what exactly is going on in the MRI not to mention the US. I have an appointment tomorrow at Memorial Sloan for a second opinion. Fingers crossed this positive news trend continues.

                  Comment


                  • #10
                    Hmm this is indeed interesting, have they done any blood markers to help rule prove non-cancerous? Sloan's radiologist dept. will have more eyes and experience if its an odd looking U/S. Please do let us know what they find. If I was a gambling man with no other evidence than what you shared, I'd say not cancer.
                    Diagnosed 4/17/08
                    Right orchiectomy 4/18/08
                    Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
                    4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
                    HCG down to 7.2 10/28/08
                    HCG back up to 198 12/29/08
                    1 X PVB 1/2/09-1/6/09
                    2 X HDC w/ stem cell rescue 2/4/09-3/14/09
                    Follow-up with Dr. Einhorn 4/22/09
                    HCG 1.2
                    3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09

                    http://www.caringbridge.org/visit/johncovell

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                    • #11
                      Well Sheinfeld was quite confident it was cancer, so I'm scheduled for the orchiectomy on Monday. Hello, my new 2x warrior family!

                      Comment


                      • #12
                        Wow! So sorry. Several are on here, praying pathology shows otherwise though.
                        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


                        • #13
                          This is difficult. I know Sheinfeld is one of our expert docs, but I'd reach out to Doc E before the surgery. The radiologists seem convinced this is not TC. I'd want to at least run it past Doc E before losing my last nut.

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

                          Comment


                          • #14
                            I went through with the orchiectomy today. My tumor markers were up (AFP was 3 points above my normal) and there were actually four masses in the latest US that Memorial Sloan did. The surgery went smoothly. They gave me a testosterone shot to last me four weeks. I'll be meeting with Sheinfeld next Thursday for my follow-up. I'll get my pathology then also, and have a CT scan before. It's a bit longer wait than I'd like because I'm eager to get my prognosis, but it doesn't seem the wait makes any difference in terms of treatment. I've been having small, random pains this past week on my right side, lower back, and lower abdomen, which I of course interpret as the pains of metasteses. Has anyone else had these kinds of pains?

                            Comment


                            • #15
                              I would describe my lymphnode met pain, caused by mets pressing on my spine, the tumors themselves are painless, as a sore lower back that doesn't get any relief from a low back rub. And it is normal to assume everything abnormal is cancer related, take note of it and log where and how often you notice the pains in a note book or phone app. Bring it up to the docs at your next visit. can never bring too much info to your doc.
                              Diagnosed 4/17/08
                              Right orchiectomy 4/18/08
                              Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
                              4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
                              HCG down to 7.2 10/28/08
                              HCG back up to 198 12/29/08
                              1 X PVB 1/2/09-1/6/09
                              2 X HDC w/ stem cell rescue 2/4/09-3/14/09
                              Follow-up with Dr. Einhorn 4/22/09
                              HCG 1.2
                              3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09

                              http://www.caringbridge.org/visit/johncovell

                              Comment

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