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  • Secondary Malignancies?

    Hello, I was diagnosed (luckily, despite family doctor incompetence) with stage 3 non-seminoma about ten years ago. They removed the left testicle and I had chemo (cisplatin,etoposide,bleomycin). all signs of cancer disappeared after chemo, no need for scar tissue removal. Even had 3 kids naturally! some minor side effects come and go, such as a tingle in the left hand, etc, etc, ANYHOW, I had a "rash" appear on my left hip 2 years ago. I thought it was ezema and went to a dermitoligist and they think it may be a form of T-cell Lymphoma. A biopsy was done every year and they come back as negative so far, BUT I am told that it could take up to 7 years to get a positive. Has anyone heard of such a thing? I know that there are some forms of secondary malagnancies such as Leukemia. Could it be from the T.C or is it just a fluke that I may have a second form of cancer?

  • #2
    Chemo induced leukemia is a very real concern. That was the long term effect from chemo that our oncologist was most concerned about. It is the reason that my wife and I fund raise for the leukemia and lymphoma society.
    Here's my wife page and mine. I'm not looking for a donation I just wanted to raise awareness, this is a real issue for everyone here and we are being proactive.
    Last edited by dadmo; 03-21-07, 10:28 AM.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

    Comment


    • #3
      Originally posted by dadmo
      Chemo induced leukemia is a very real concern. That was the long term effect from chemo that our oncologist was most concerned about. It is the reason that my wife and I fund raise for the leukemia and lymphoma society.
      Here's my wife page and mine. I'm not looking for a donation I just wanted to raise awareness, this is a real issue for everyone here and we are being proactive.
      Hi Dadmo,

      My sons oncologist told me that the risk of developing cancer another cancer later is less than 1%.

      Although the odds seem to be low, when I hear "rare" or small percentages I have to remind myself that TC is also rare, yet my son has it.

      Do you think that less than 1% is accurate?
      Last edited by dadmo; 03-21-07, 10:28 AM.

      Son Anthony DX 12/11/06
      L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
      4XEP 1/29-4/6/ 07
      AFP started increasing3 wks later
      Residual abdominal mass found on CT
      RPLND 6/8/07
      Cancer in pathology-
      80% mature teratoma, 20% Yolk Sac. --
      No adjuvent chemo and
      AFP normalised

      July 22, 2010 ---- 3 years all clear!

      Comment


      • #4
        This is my gut reaction no statistics behind it at all. From talking to our local oncologist and those at Sloan our son's have a smaller percentage of developing several forms of cancer. Statistically it seems small, not really anything we should beoverly concerned with. Here's my question to them (I never actually asked it) how many people are there that have survived chemo for 40+ years. I bet not many, how old would that make our son's? Jason would be 63. If that shortened life expectancy isn't from the chemo what got them? I really do hate this disease and I could cry right here at work but my gut tells me Jason won't have much of a retirement.
        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

        Comment


        • #5
          Wow....that is actually a very depressing thought.

          Though I do have to say, my grandfather, he had three cancers in his life, first prostate, then colon, then bladder. He was also in the military so any cause of his cancers is possible.

          Anyhow, he survived all three, lived 50 healthy years past them. In fact my grandmother who was 7 years younger then he, died 6 months earlier due to alzhimers and kidney failure. I always say he died of a broken heart. He and my grandmother had been married 72 years, he died a few days shy of his 73 wedding anniversery. He was also 4 months shy of being 90 years old.

          On the other hand, we had a lady in our church who died a couple years ago at 56 years old from a secondary lukemia. She had had throat cancer many years earlier. I don't know how it was treated. But they did suppose her lukemia was from the earlier treatment.

          So I guess if you think about it that way, chemo isn't always a cure, some times it is just increasing the persons life by 20-50 years.

          Still very depressing when you husband is only 29. Or when your son is only 23.

          Becki

          Husband Right I/O 09/06
          -70% Embryonal Carcinoma
          -20% Teratoma
          -10% Yolk Sac Tumor
          11/06- lymph nodes 1.8x1.4 and 1.9x1.4
          12/06-PET Scan confirms activity in lymph nodes, lymph nodes 2.2x2.2 and 2.4x2.3
          1/07-Start 3xBEP
          4/07-PET clear, lymph nodes down to 1.1x0.5 and 1.8x1.0
          6/07-lymph nodes 1.2x1.0 and 1.9x.9
          8/07-lymph nodes 1.1x1.0 and 2.0x1.2
          10/07-lymph nodes 2.0x1.5 and 2.7x1.8
          11/07- PostChemo LRPLND-found burnt out teratoma
          11/09-Enlarging lymph node 1.2 cm near renal veins

          Comment


          • #6
            Dadmo, Im scared for mine too

            Son Anthony DX 12/11/06
            L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
            4XEP 1/29-4/6/ 07
            AFP started increasing3 wks later
            Residual abdominal mass found on CT
            RPLND 6/8/07
            Cancer in pathology-
            80% mature teratoma, 20% Yolk Sac. --
            No adjuvent chemo and
            AFP normalised

            July 22, 2010 ---- 3 years all clear!

            Comment


            • #7
              Originally posted by Neil K
              Hello, I was diagnosed (luckily, despite family doctor incompetence) with stage 3 non-seminoma about ten years ago. They removed the left testicle and I had chemo (cisplatin,etoposide,bleomycin). all signs of cancer disappeared after chemo, no need for scar tissue removal. Even had 3 kids naturally! some minor side effects come and go, such as a tingle in the left hand, etc, etc, ANYHOW, I had a "rash" appear on my left hip 2 years ago. I thought it was ezema and went to a dermitoligist and they think it may be a form of T-cell Lymphoma. A biopsy was done every year and they come back as negative so far, BUT I am told that it could take up to 7 years to get a positive. Has anyone heard of such a thing? I know that there are some forms of secondary malagnancies such as Leukemia. Could it be from the T.C or is it just a fluke that I may have a second form of cancer?
              The rash has been there the entire two years?

              You say they "think" it may be. I pray that they are wrong ...

              Have they said if its possible that it is anything else?

              Son Anthony DX 12/11/06
              L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
              4XEP 1/29-4/6/ 07
              AFP started increasing3 wks later
              Residual abdominal mass found on CT
              RPLND 6/8/07
              Cancer in pathology-
              80% mature teratoma, 20% Yolk Sac. --
              No adjuvent chemo and
              AFP normalised

              July 22, 2010 ---- 3 years all clear!

              Comment


              • #8
                Nancy and I don't cry as often as we used to especially since we have turned our fear into action. It a great release and helps secure some future for my son and by extension everyone else.
                Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                Comment


                • #9
                  Originally posted by mstlyn
                  The rash has been there the entire two years?

                  You say they "think" it may be. I pray that they are wrong ...

                  Have they said if its possible that it is anything else?
                  The rash has been there the full 2 years, They think its Mycosis Fungiodes (not a fungus like name suggests) which is a type of T-cell lympoma. VERY hard to diagnos, Biopsies every year. takes up to seven years at times to get a positive. Looks much like ezema, and therefore often mistaken as such. treatments are chemo, radiation therapy, photodynamic therapy. It seems difficult to understand how I could have 2 unrelated cancers all before the age of 30. Just wondering if anyone has come across this before.

                  Comment


                  • #10
                    Originally posted by Robert2112
                    I walked into the old country drugstore, and the Pharmacist/owner came up to me and said he had Tc when he 21. He had chemo. Not sure which kind, but I will ask him next time I see him. He is a very healthy man at 70 right now.
                    If he had chemo 49 years ago, he essentially got what amounted to mustard gas. Chemo has gotten so much better now. Yeah, I think modern chemo can be brutal on someones body, but it's only administered today for 2-3 months. Back in the day, it was administered for 2 years, even in the adjuvant setting!!!

                    I seem to remember a story about some guy who had stage III testicular cancer and then got chemo, and then won some grueling event, or something, all after chemo and with only one nut. Maybe won even more than once... like seven.

                    djm
                    Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.

                    Comment


                    • #11
                      Wow, I get so depressed when I read the posts about Luekemia, and all the other cancers my son could get from chemo. But then, thanks Robert, for a more positive spin...our Dr. also told us less than 1%, so I have to live with that so that when I look at Chris I am thankful and not fearful. I believe I read the first man treated by Dr. Einhorn, who was dying and was given chemo, is still healthy and going strong 20 or 25 years later. I don't want to worry and 30 years down the road Chris is doing great. I just can't live in fear, I would rather I get something than my young son, who has so much to live for. I guess we must live for today...Mary Ellen

                      Comment


                      • #12
                        One more thought...if someone gets another cancer maybe 20 years down the line...hopefully we will have such advancements in treatment by then ...sorry, but I just have to live with that thought...how long has it been for Lance...since his cancer..Mary Ellen

                        Comment


                        • #13
                          That's why I fund raise for the Leukemia society. It helps my sons future prospecs, it helps your son and it makes me feel as if I'm doing something. I can't sit back and hope for someone else to do what needs to be done. I'm sure I'm not as smart as guys like Fed but I can help make sure he gets the funding required so that he can continue his work. We all have a role to play and all roles are important.
                          Last edited by dadmo; 03-23-07, 12:25 PM.
                          Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                          Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                          Comment


                          • #14
                            I agree Bill, we have to be proactive.....and what you are doing is that....you are a great role model....Mary Ellen

                            Comment


                            • #15
                              Every Doctor I've asked has stated a chance of between 1 and 2%...of course it's a concern but these are good odds. Keep the chin up!

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