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  • Educational Support Meeting

    On July 10th Memorial Sloan Kettering Cancer Center will be conducting a one and a half hour Educational Support Meeting for people affected by Testicular Cancer. Here's the info

    Living Beyond Cancer Calendar

    Testicular Cancer
    Tuesday July 10, 2007
    3:00 PM to 4:30 PM

    Type:
    Educational Support Meeting

    Presentation:
    Meeting for Testicular Cancer Survivors

    Summary:
    This is a diagnosis-specific meeting that is co-led by social workers and nurses, and is tailored to give people an opportunity to work on adjustment to life after treatment. This may include changes in physical functioning, appearance, and lifestyle, altered self-image, fatigue, isolation, and concerns about the future. Participants are encouraged to share concerns while gathering medical and rehabilitation information from healthcare staff.

    Sponsor:
    Post-Treatment Resource Program

    Speaker(s):
    Richard Glassman, LCSW
    MaryAnn Carousso, NP

    Audience:
    This program is for men who have had testicular cancer. No observers, please, without prior approval.

    Location:
    Rockefeller Research Laboratories - Room 118
    430 East 67th Street
    (between York & First Avenues)
    New York, New York 10021

    Contact:
    You must register to attend, please call 212-717-3527.
    For further information, please call Richard Glassman, 646-422-4658.

    Phone:
    212-717-3527

    E-mail:
    [email protected]
    Last edited by dadmo; 06-14-07, 12:58 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.

  • #2
    Dadmo,
    I went to this meeting last year.
    It was really terrific meeting with Richard and MaryAnn, It is a great place to get some post treatment TC specific questions answered. I voiced my concerns about developing late term second malignacies due to my 4xEP- MaryAnn really made me feel better. She said that is something that is out of our control, and doesn't happen very often anymore because medicine has perfected chemo dosing. What we can control is chemo related heart disease risk- and I already see my training has helped with my Blood Pressure.
    As far as the meeting at Sloan, my wife and I were the only people that attended, so it was kind of a dissapointment nmot to meet any other tc survivors- however the one on one QA was great.
    Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
    Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

    Please see a physician for medical advice!

    My 2013 LiveSTRONG Site
    The 2013 Already Balders

    Comment


    • #3
      I plan on attending all of these in the future.
      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


      • #4
        If any of you get word of one of these meetings in the FL, AL, MS or LA gulf coast area, please let me know. I'd love a Q&A session with a few doctors that doesn't cost me $130 bucks a visit! haha

        Bobby.
        4/26/07 - mass confirmed w/ no elevated markers
        4/27/07 - left I/O
        5/2/07 - Dx: 100% seminoma stage 1A
        Surveillance: CT/blood (6 month cycle)
        4/27/13 - 6 years cancer free!

        Comment


        • #5
          Is this meeting only open to people finished with treatment including RPLND? My husband will finish 4xBEP on June 28th, but the RPLND won't come for several weeks after. I think it would be helpful for him to go.

          Stacy
          NY
          Rob and Stacy
          DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9

          Comment


          • #6
            Yes Stacy, just call Richard Glassman and you will likely have to leave a message- he will get back to you pretty quickly.
            Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
            Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

            Please see a physician for medical advice!

            My 2013 LiveSTRONG Site
            The 2013 Already Balders

            Comment


            • #7
              Danny and I plan to be there, as long as he is healthy enough to go. It is possible for the meeting to coincide with his recovery from the lung surgery, but we'll see. Maryanne, who is Dr. Bosl's nurse is a wonderful person and a wealth of information. She is also very kind and encouraging. She has given us hope in very tough times.

              Hope to be there and see the NYC area forum members!!

              -M

              Comment


              • #8
                Change of address

                Hi everyone -

                A social worker came to visit us yesterday while Rob was getting chemo and gave us the meeting flyer (which we already had), but the address was changed. She said we can't go through the front entrance because there is construction or some such thing -

                So all info is the same but now the entrance is 431 E. 66th Street instead of 430 E. 67th.

                We're back-dooring it.

                Stace
                Rob and Stacy
                DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9

                Comment


                • #9
                  hey fuse, (bobby)

                  if you have any questions that you'd like answered at the Q&A message me and I'll be sure to ask them and take notes so as to give you a detailed response. Danny and I will almost certainly be there and I'd be happy to do that for you and ANYONE else who has a specific question. Feel free to let me know...

                  -M

                  Comment


                  • #10
                    Originally posted by dannysbrother
                    hey fuse, (bobby)

                    if you have any questions that you'd like answered at the Q&A message me and I'll be sure to ask them and take notes so as to give you a detailed response. Danny and I will almost certainly be there and I'd be happy to do that for you and ANYONE else who has a specific question. Feel free to let me know...

                    -M
                    Hey man,

                    Thanks a ton for offering! A topic i've been wondering about is the long term prognosis of people diagnosed with TC who also present microlithiasis of the testicle(s) at the time of diagnosis. I've read that there may be connections between microlithiasis and TC, and also that microlithiasis is bilateral is 80% of cases. My questions is if microlithiasis significantly increases the chance of getting TC in the remaining testicle, and if so, what are the statistics. E-A-G-L-E-S EAGLES!

                    Bobby
                    4/26/07 - mass confirmed w/ no elevated markers
                    4/27/07 - left I/O
                    5/2/07 - Dx: 100% seminoma stage 1A
                    Surveillance: CT/blood (6 month cycle)
                    4/27/13 - 6 years cancer free!

                    Comment


                    • #11
                      Should I go to this? Or is it a guys' only thing?
                      I would definitely not want to interfere with any questions anyone wants to ask that might be of a...... delicate nature, lol.

                      But I also think that Rob won't go if I don't go with him.
                      Rob and Stacy
                      DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9

                      Comment


                      • #12
                        You have to register to attend so I would suggest that you ask at that time the numbers is 212-717-3527.

                        For additional information you can call Richard Glassman, 646-422-4658
                        Last edited by dadmo; 07-06-07, 01:00 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


                        • #13
                          hey Stacy...

                          Stacy,

                          I would think that you'd be welcome to go. I think it would be very beneficial for caregivers, male OR female. Lets put it this way, if I'm going, I don't see why you shouldn't be able to.

                          Hope to see you both there!

                          Michael

                          E-A-G-L-E-S EAGLES!!!

                          Comment


                          • #14
                            First I want to say how thrilled I was to meet Mikey and Danny. These guy are really wonderful. We took them over to our favorite Mexican Place and had a very nice dinner. For all you mom's out there Danny did a great job on his meal, you would all be proud.
                            The meeting itself was interesting. We had one fellow (Roy) who has lost both testicles to tc and he is struggling with hormonal issues. He recongizes that his moods swing like crazy and he needs help. I of couse told him about us and that we have a few members who have lost both and perhaps they may have some suggestions. If nothing else he won't feel so alone.
                            There were to other men who came in together one was the patient (mike)and the other the caregiver (great guys). This case bothered me and I spoke up about it. It seems he has seminoma and had his I/O 7 weeks ago. He has some enlarged nodes and has been classified as stage IIB. He was told that he had the option of either chemo or radiation and the choice was his because of the staging either would work. The current recommendation since the nodes have enlarged over the past few weeks was to watch and see what developed. I asked where he was being treated and he said Sloan. I may have spoken out of turn but I told him that that is not an acceptable approach and he should get in touch with Einhorn because something didn't seem right.
                            I did expect at this point for the moderator to perhaps intervene but he didn't because my point was that you need to be your own health advocate and you need to be comfortable with you treatment protocol. Again I recommended this site for information.

                            With regards to the seminoma patient, what am I missing? If it's pure seminoma it's radiation, if it non-seminoma or mixed it's chemo and if it's stage II you don't simply watch do you?
                            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


                            • #15
                              Originally posted by dadmo
                              With regards to the seminoma patient, what am I missing? If it's pure seminoma it's radiation, if it non-seminoma or mixed it's chemo and if it's stage II you don't simply watch do you?
                              For stage II disease, surveillance is never an option. Radiation therapy or chemotherapy is definitely required. I hope there was some misunderstanding. I can't imagine why one would "wait to see what develops" in this situation. I think we know the answer, and it isn't pretty.
                              Scott, [email protected]
                              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


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