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  • Late to the Party

    After reading a few posts I realized I'm fairly late in coming to this party. Last April I noticed a lump on the right testicle but after some quick Googling came to the conclusion that it was probably anything but cancer. I say that because I was 63 years of age and this was a young mans disease. But to be sure I went for an ultrasound and found out quickly that it almost certainly was cancer and that I needed to have an orchiectomy right away. Now I was concerned but concluded from further research that it's usually seminoma after the age 50 and that it's slower spreading and easier to treat than the other types. And after reading about the RPLND I was really glad I would probably be avoiding that scenario.

    So off I went to surgery and a couple of weeks later found out that much to my surgeons and oncologists surprise that it was 100% embryonal and that from the CT scan there was LVI with a couple of 2 cms or so tumours formed already. This was not what I had expected or hoped for. It was stage 2b and the possibility of the RPLND was bought up but the team decided that because the relevant markers hadn't gone down after the initial surgery that 4 rounds of Etoposide/Cisplatin instead of BEP was the best course of action due to my age and potential lung toxicity. I have to say that chemo wasn't as bad as I had imagined it would be. Anti nausea meds worked very well. The main marker dropped to almost normal after round one. But a follow up CT scan showed the tumours had shrunk but not under the magic 1cm mark so once again the panel recommended an RPLND to find out what was going on it there. I have to say that at this point I felt like I was watching some horror show that should have ended 20 minutes ago.

    And so in mid December I went in for my PC-RPLND. Eight hours of surgery later I was recovering in my hospital bed. Two days later I was walking the halls when I had a double pulmonary embolism. Probably due to my age and length of surgery. Getting ready to be discharged I noticed that I was swelling up considerably which turned out to be ascites which required a month of TPN and no solid foods. Topped up with peritonitis and a bout of pneumonia I spent 40 days in the hospital. Then five really crappy weeks on the couch at home with severe nausea and fatigue. Then a couple of weeks ago I turned the corner and the stomach issues cleared up. There is still fatigue but I'm getting better by the day.

    So the reason for Grateful Guy is that despite a few complications I'm really thankful that I didn't get this cancer as a young man because I very likely would have been amongst the 90% that would have died within two years of diagnosis. I'm also grateful that at my age I got the most curable cancer that men can get. I'm grateful for how much support I got from family and friends. I'm grateful that I'll most likely be around five years from now. And I'm very grateful that the worst of the treatment is behind me now. And I'm grateful that the chemo worked as the removed tissue came back negative. Maybe one day they'll come up with an alternative to that final exam!

    So I have found most answers to my questions from reading posts except for one. I did learn from here that the neuropathy gets worse anywhere from 3-6 months after chemo and I have read of people who have it years later but I would really like to hear from people who had it resolve itself within the year. My oncologist said about 30% have permanent damage so I'm assuming that means 70% don't.

    Thanks to all who had the patience to read to the end.

  • #2
    Sorry to be welcoming you to this forum.

    Glad to hear that it looks like you've got it beat now. They really need to stop saying this is a young man's cancer. Just because it is more common at younger ages does not rule out the possibility if getting it at any age. I think we actually had an 80 year old reported on here a few years ago, I think too many older guys may be ignoring symptoms because they think they are too old to get it.

    You are likely correct, had you gotten the same Dx 35-40 years ago, chances are you would have died soon after. I was lucky, my first was caught early & had not spread.Back then, RPLND was the standard of care after any positive pathology after an I/O, but was rarely curative if there were active retroperitonial nodes. Long term complications from the surgery were also more common. if you managed to eradicate the TC with the RPLND & lived long enough to get them.

    Treatment has improved a lot & I'm glad you were able to benefit

    Dave

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

    Comment


    • #3
      Hey,

      Such a story to hear, glad all is good for now !

      I'm about 8 months out for chemo (100 % EC with 2 lymph nodes) and I did have some neuropathy with my 3rd cycle, but it resolved about 2 - 3 months after chemo.

      It's curious that 100 % EC is supposed to represent only 2 - 4 % of TC ; seems that the incidence is growing, seeing a lot of new cases these times...

      All the best,

      Jean-Philippe
      December 15, 2015 : Right I/O. Markers normal.
      December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
      January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
      February 2016 : Markers normal.
      March 2016 : Markers normal.
      April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
      April 25, 2016 : Happy birthday ! Relapsed confirmed.
      May 2, 2016 : BEP x 3 begins.
      July 3, 2016 : BEP x 3 ends.
      July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
      December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.

      Comment


      • #4
        Originally posted by jpboucher View Post
        Hey,

        Such a story to hear, glad all is good for now !

        I'm about 8 months out for chemo (100 % EC with 2 lymph nodes) and I did have some neuropathy with my 3rd cycle, but it resolved about 2 - 3 months after chemo.

        It's curious that 100 % EC is supposed to represent only 2 - 4 % of TC ; seems that the incidence is growing, seeing a lot of new cases these times...

        All the best,

        Jean-Philippe

        Is it possible that the pathology methods have change or "round up"? I had a 2nd opinion on my pathology and the 2nd one was 90% EC, 10% seminoma. First was pure EC.
        Age 31 - Portland, OR
        01NOV16- Pain in right testicle, palpable mass
        13NOV16- R I/O. Markers normal
        06NOV16 - CT scan clear
        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
        03JAN17- Ended 1xBEP; start surveillance
        18MAR17-2nd pathology report shows 90% EC , 10% seminoma

        Comment


        • #5
          Originally posted by mcintoda View Post
          Is it possible that the pathology methods have change or "round up"? I had a 2nd opinion on my pathology and the 2nd one was 90% EC, 10% seminoma. First was pure EC.
          I believe pathology isn't as hard & fast,of a science as many other tests. It's pretty much up to the experience & skills of a person looking through a microscope, and how they estimate what % of cells are what. In other words there is a very large human interpretation factor. I would consider two reads of the same sample with as much as 20% differences as essentially the same.

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

          Comment


          • #6
            Originally posted by mcintoda View Post
            Is it possible that the pathology methods have change or "round up"? I had a 2nd opinion on my pathology and the 2nd one was 90% EC, 10% seminoma. First was pure EC.
            I believe pathology isn't as hard & fast,of a science as many other tests. It's pretty much up to the experience & skills of a person looking through a microscope, and how they estimate what % of cells are what. In other words there is a very large human interpretation factor. I would consider two reads of the same sample with as much as 20% differences as essentially the same.

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

            Comment


            • #7
              Many pathologists don't see testicular cancer cells specimens for years and they must identify accurately cells.

              I'm really not an expert in pathology, but it can be tough for those professionnals to came with a 100 % certitude of what is on the specimen.

              A look by an experimented pathologist isn't bad for this reason.

              Jean-Philippe
              December 15, 2015 : Right I/O. Markers normal.
              December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
              January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
              February 2016 : Markers normal.
              March 2016 : Markers normal.
              April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
              April 25, 2016 : Happy birthday ! Relapsed confirmed.
              May 2, 2016 : BEP x 3 begins.
              July 3, 2016 : BEP x 3 ends.
              July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
              December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.

              Comment


              • #8
                Many pathologists don't see testicular cancer cells specimens for years and they must identify accurately cells.

                I'm really not an expert in pathology, but it can be tough for those professionnals to came with a 100 % certitude of what is on the specimen.

                A look by an experimented pathologist isn't bad for this reason.

                Jean-Philippe
                December 15, 2015 : Right I/O. Markers normal.
                December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
                January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
                February 2016 : Markers normal.
                March 2016 : Markers normal.
                April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
                April 25, 2016 : Happy birthday ! Relapsed confirmed.
                May 2, 2016 : BEP x 3 begins.
                July 3, 2016 : BEP x 3 ends.
                July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
                December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.

                Comment

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