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New to this community - after orchiectomy and awaiting next steps

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  • New to this community - after orchiectomy and awaiting next steps

    Hi. I am new to this community. I appreciate the possibility of sharing this experience and giving/receiving support.

    In January of 2020, I was diagnosed with testicular cancer. I had noticed discomfort since the prior Thanksgiving (~1month) and went in to the hospital for what I thought was a groin injury. After tests and meeting with my urologist, he diagnosed me with cancer in my right testicle. Two days later, I had orchidectomy surgery to remove the right testicle. After surgery, it was officially diagnosed as nonseminoa testicular cancer (pT2 3.2 cm pure embryonal carcinoma T2Nx).

    Then, I had a CT scan done, which noticed a dilated lymph node and liver lesion. An MRI scan showed the liver lesion was benign. Since then, I have been referred to Indiana University-Indianapolis by my oncologist to investigate a dilated lymph node in my abdomen.

  • #2
    I am assuming that by "dilated lymph node" you are saying it is "enlarged" ?

    If I am correct in that than you likely will need chemotherapy, as that is the preferred treatment in cases like this. Where are you located? A trip to Indiana seems unneeded at this point, unless it is very convenient to do.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #3
      So, I did mean "expanded" when I used the term "dilated." I actually just got back home from my appointment at IU-Indianapolis. My plan is to follow doctor's recommendation of RPLND surgery at IU-Indianapolis to remove the dilated lymph node and any others nearby next Tuesday. I am happy that they were able to get me in so quickly and am hopeful for the prospects.

      Comment


      • #4
        If IU is local for you that is great. They are top notch. I had my RPLND there after a recurrence. We broke the 10 hour drive home up by staying a night at the wisconsin dells. That's roughly halfway back to minneapolis. Needless to say I didn't do any swimming. But my wife was able to relax there a bit!
        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!
        10/22/19: all clears up to this date!

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        • #5
          That is great that you were able to make it to IU. I feel fortunate that I have been to get into the right doctors in what so far seems like a quick amount of time.

          Comment


          • #6
            Has anyone felt soreness in lower back or stomach from a dilated lymph node? I am awaiting RPLND surgery for a lymph node. I keep worrying that soreness I am feeling is due to the cancer. IU doctors say I should not be able to feel it, but I am not sure what else it would be.

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            • #7
              Originally posted by GD1345 View Post
              Has anyone felt soreness in lower back or stomach from a dilated lymph node? I am awaiting RPLND surgery for a lymph node. I keep worrying that soreness I am feeling is due to the cancer. IU doctors say I should not be able to feel it, but I am not sure what else it would be.

              The physicians at IU see 100s of patients a year, know where the lymph nodes are located, their size, etc. so I would defer to them really if they think it could cause pain. With that said, it isn't impossible that the node could cause some pain but it may also just being the mind playing tricks on you as well as the mind is a pretty powerful thing.

              With surgery coming up, I wouldn't be that overly concerned with it since it will be quickly removed anyhow.

              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


              • #8
                Thanks. That makes sense. I am looking forward to the recovery phase. (fingers crossed and prayers)

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                • #9
                  As of tonight, I am one week post-RPLND surgery. I had the surgery done at IUPU-Indianapolis. My surgery was last Tuesday and then. I stayed in hospital for three days before returning home on Friday. At this point, pain is minimal at a 2-3 out of 10. It really only gets difficult when transitioning from sitting to standing position.

                  I am currently awaiting a call from the doctor with pathology test results on the lymph nodes that were removed. I feel a bit in limbo here: Do I feel excited that the possible cancerous lymph nodes are out of me OR do I still wonder/worry about what could be left? IU did not have me do a follow-up CT scan after the surgery to see if there is any cancer cells left. Should this have been done or is there anything to be done at this point?

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                  • #10
                    Originally posted by GD1345 View Post
                    As of tonight, I am one week post-RPLND surgery. I had the surgery done at IUPU-Indianapolis. My surgery was last Tuesday and then. I stayed in hospital for three days before returning home on Friday. At this point, pain is minimal at a 2-3 out of 10. It really only gets difficult when transitioning from sitting to standing position.

                    I am currently awaiting a call from the doctor with pathology test results on the lymph nodes that were removed. I feel a bit in limbo here: Do I feel excited that the possible cancerous lymph nodes are out of me OR do I still wonder/worry about what could be left? IU did not have me do a follow-up CT scan after the surgery to see if there is any cancer cells left. Should this have been done or is there anything to be done at this point?

                    I would assume if they thought you needed a post-op CT that they would have ordered one. I would try to sit tight and see what the pathology has to say. They were in there feeling and looking around and remove nodes according to templates too so it all should have been cleared out.

                    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

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