Announcement

Collapse
No announcement yet.

Forced surveillance?!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Forced surveillance?!

    Note: This post is rather lengthy.

    Hey all,

    I'm now almost 4 weeks removed from my I/O, and I finally had my appointment with the oncology team (med onc and rad onc) at Dana-Farber.

    First I met with the Med Onc. It was clear from the onset that he wasn't prepared for the appointment (he didn't know what I was there for). He pulled out the path report and read it for the first time; and, off the bat, he said that there's no need for adjuvant radiation and that I should go on surveillance (this came way out of left field considering I had pretty much decided RT). He then pulled out the CT data and read the radiologist report without look at the actual films. He insisted on surveillance, almost to the point that I wasn't even offered the option of RT. The guy then took off.

    The Rad Onc showed up about 20 minutes after the med onc had left. The first point she made was that she was surprised there were 4 masses seen in the ultrasound, the path report only mentions 3, two of the masses were necrotic, and only one had viable tumor. She said this is a very unusual pattern seen in seminoma, and it is something I don't really know anything about (I'll look up some articles on PubMed tomorrow on the topic). Despite this, she said that since my viable tumor was small, she would not irradiate me and said I would go on surveillance. I then asked her about the details of their surveillance protocol, and she assumed the Med Onc had already gone over that with me. He never did; in fact, he had already left for the day. I then told her I was quite surprised about them not recommending RT, and she responded by saying that seminoma patients tend to consider themselves confident about being able to beat cancer, but deep down inside they are afraid of uncertainties over which they don't have control (whoa). I didn't get a protocol, and she told me to call her next week.

    My take on this? I need a new treatment team. At the very least I'm cutting the med onc. The rad onc apologized multiple times for the "absent-mindedness" of the med onc (i.e. no surveillance protocol, not looking at the films, not being prepared for the appt). Be that as it may, this is my life, we're talking about, and I refuse to have someone be absent-minded while managing my care. My collaborator and future boss at DFCI is digging scoop on a substitute (this might take a while since he's in Ped Onc, and the Adult Onc operations are completely separate from Ped Onc).

    In the meantime, I'm going for a second opinion at Sloan. I spoke to my fraternity pledge brother (urology chief resident at New York Presbyterian), and within a couple of hours, he brought up all of the issues with Joel Sheinfeld (they're writing a paper together). Tomorrow I'm sending him all of my films on CD by express mail, and I'm having the pathology slides sent over there for a second review. If something unusual comes up, I'll be taking the trip to NYC for a face-to-face.

    Mentally I feel worn out. Perhaps I'm blowing this out of proportion considering that there is the very real chance (75-80%) that I might already be cured. I'm not angry because the docs disagreed with my original decision to undergo RT (just as I'm sure there are people that opt for surveillance and encounter a doc that will strongly push radiation). I am upset because I wasn't offered a choice, which is a luxury you have if things are caught early. I also firmly believe that MDs have to come prepared to meetings, especially when it's their first time meeting a patient.

    OK, got this out. If anyone's still reading, thanks for your patience. I gotta try to get some sleep.
    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
    11.22.06 -Dx the day before Thanksgiving
    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.


  • #2
    Fed
    Glad you can let it out. I would be frustrated too. Some docs can be plain idiots. Sending the stuff to Dr. Sheinfield is obviously the best possible thing you can do and he won't blow you off. I'm sure you are fine and now you are also in great hands.

    Good Luck!
    Lori and Jon
    Diagnosed 5/22/2006
    I/O 5/26/2006, Stage 3, Good
    Teratoma (Majority), Seminoma (10%), Yolk Sac
    3xEP then determined not working
    HDC w/stem cell transplant 8/16/06 to 9/25/06
    Chest and Neck surgery 10/9/06 - immature teratoma
    RPLND 11/16/06 - immature Teratoma
    2/29/2008 - markers continue to be normal!
    9/16/2008 - released from Dr. Einhorn's care

    Comment


    • #3
      I understand your frustration, and it's perfectly reasonable to get a second opinion. You should certainly have been presented with all the options and facts. I wonder what else was on the medical oncologist's mind.

      I'm betting you're already cured.
      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


      Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

      Comment


      • #4
        Totally understand your frustration, and your smart in getting that second opinion. And as you stated, this is your life, and nothing but the best is exceptable. So do what you have to do, and you will be fine. Good luck to you, and take a deep breath!!!!!!!!!!!!!!!!!!!
        Krista
        Brother Diag. 10/05 Non-Sem.
        Right I/O 11/05
        Surv
        4XBEP 8/06
        RPLND 12/06
        2X VIP 1/22/07
        Only completed 1 Rd.

        Comment


        • #5
          Fed,
          You are doing the best thing in going to Sheinfeld.
          I am also his patient- he did my RPLND, and also caught my lung tumor months later in a follow up ct scan. (I'm having my chemo at PENN with Dr. Vaughn, they share me!)-
          You will be in the best of hands at Sloan, Everybody I deal with there is execellent- nurses, residents, adminstration- they're all great, I'm glad you are making the trip.
          Good luck, and keep posting.
          Joe
          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


          • #6
            I am sorry you are frustrated Fed...I would be too. My husband also saw Dr. Sheinfeld at Sloan and he performed his RPLND and I must say the entire organization was first rate. We traveled from NC to see him after weighing the options with many other doctors. He is a very aggressive doctor and that worked great for us because when we were told about the cancer my husband said he would take the most aggressive treatment possible.

            After the RPLND we were told that none of the tumors showed cancer, but the piece of mind it gave us was worth the effort. And now he has a better chance for the future.

            Please let us know how you are doing and if we can do anything to help. I have lots of names and numbers
            Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
            Current DVT
            Current testosterone replacement therapy, Testim.

            "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

            Comment


            • #7
              I had RPLND witH Sheinfeld

              He is a WONDERFUL Dr. He is extremely aggressive in treatment and will almost always suggest the most aggressive treatment available. Post-surgery he is extremely conservative. However, follow his direction and the results are first-rate.
              Stage III Non-Seminoma- 7/11/06
              Right I/O 7/12/06
              Completed 4x BEP 11/06
              Bi-Lateral RPLND (Dr. Shenifeld)- 11/27/06
              Surveillance since then

              When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
              Lance Armstrong.

              Comment


              • #8
                Fed,

                You are 100% right in everything you're doing.

                I can understand Rover's point about certain docs not being completely familiar with Testicular Cancer and treatment protocols but there is NO excuse for not being prepared for an appointment with any patient - nevermind a 1st time Cancer patient.

                In my case, my med. Onc. doctor has not seen a lot of TC cases but he told me that and said, "Don't worry. The NCCN guidelines are very clear and we will follow them to the letter" and he also consulted with Dr. Einhorn when it became necessary. In some ways, I knew more about TC than my Onc. and even requested 4xEP for chemo instead of his recommendation for 3xBEP. He acknowledged that I had done plenty of research to make the decision for myself and agreed with me completely when I told him why I wanted to avoid the bleo.

                There was even one point during that conversation where he said "You know, if I call Einhorn at IU, he's going to suggest 3xBEP". Then I said, "yeah, but if you call Sloan, they're going to say 4xEP". From that moment on, we have been a team when it comes to my treatment.
                TC diagnosed 4/3/06, [email protected]; Left I/O 4/10/06; Stage IIa Non-Seminoma, 100% Yolk Sac; Started 4xEP 5/22/06 with [email protected]; Finshed 4xEP 8/11, AFP normal, CT scans clear! Now on surveillance

                Comment


                • #9
                  Originally posted by Fed
                  and she responded by saying that seminoma patients tend to consider themselves confident about being able to beat cancer, but deep down inside they are afraid of uncertainties over which they don't have control (whoa).
                  Was this a "Matrix moment" ?

                  Fed,

                  Your case sounds eerily similar to mine. I had a horrible experience with the med onc. I had prepared the night before, writing down all my questions, thinking that I would have a deep academic talk with her about my options, the pros and cons, etc. My uro had already recommended surveillance based on the path, and I agreed, based on my particular situation and my own research. What happened with the med onc I thought was unique to me... First, she's a DO, and not to diss DOs but as Karen mentioned in another post, maybe they're fine for a UTI, but she would avoid one for cancer . But seriously, I did not have the same bias against DOs, but the interaction went like this: I was first seen by her fellow, who said that they believe that the tumor was caught early, despite the minor lymphadenopathy (at this point I had not seen my CT scans, but had been told they were clean). After his physical exam, she kept me waiting another, oh, 45 minutes or so, came into the room with an air of superiority, and then said for surveillance, she likes to see a CT scan completely free of lymphadenopathy. So she's recommending radiation... and then she set up an appointment. I sent her fellow to get me all of my reports and read them while she wrote me a script for a CT scan for my chest, which is NOT RECOMMENDED...by NCCN guidelines, but she insisted on it! When I read my P/A CT scan, I notice the following line There is no evidence of pelvic or retroperitoneal lymphadenopathy. I immediately questioned her on it.. and she got flustered and then blamed her fellow...I then realized that she must have been briefed by the fellow minutes before she met with me, and parroted his misreading of my CT report. Inexcusable! I fired her and I'm now med oncologistless. My experience with the rad onc was much better, so I have a level of confidence there, and my uro will henceforth be reading my surveillance scans until I find a med onc I can be comfortable with. He is colleagues with her (he is the director of her department) and he was suprised she had recommended radiation because they had previously met and had agreed on surveillance in my case.

                  Anyway, this experience sent me to Sloan as well. Really, I went there to get a second opinion on the scans and the path. I can tell you what to expect: There will be a lot of young men your age there. It will be crowded, and they will call people by name. You'll have an initial exam, and maybe your blood drawn by a nurse. You will then be called into an exam room where you will be seen and further examined by a fellow. Sheinfeld will come in shortly thereafter. He'll know your case to the "t". He will have looked at the scans himself to confirm the opinion of the radiologist. He will recommend radiation in your case, as he does in ALL stage I seminoma cases. They do "dogleg" that is pelvic as well as paraaortic. If pushed, he'll push back, but he finally did admit that surveillance would be "ok" and shouldn't compromise survival. Then he was gone... don't expect too much small talk despite your strong academic background, he's got another 20 patients to see.

                  Fed, my situation is slightly different than yours. I have no kids, but I want to soon. I'm just engaged recently (tomorrow officially) and I hope to not compromise my ability to get someone pregnant naturally. If I had kids, I'm fairly certain that I would do the radiation. You're doing a great thing by going to Sloan. Still, I would try to get it out of Dr. Sheinfeld why they are so insistent on radiation... I guess that there attitude is that "if it ain't broke" but really, how long do they follow all of their patients to know how many may have had long term complications? He did tell me about radiation induced sarcoma that he has seen... and they can be "particularly nasty" was his exact quote...but he quickly added that he has seen only one of these in his career.

                  Best of luck, Fed!

                  djm

                  PS if you are in NY on a weekend and would like to meet up...drop me a PM!
                  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


                  • #10
                    Greetings all,

                    I think I accomplished what I needed to get done today.

                    The med onc found out from the rad onc that I was not pleased with my visit, so he dropped me a line early in the morning asking whether I would like to resolve this with him or go see someone else in the DFCI group. He actually suggested Robert Ross, who I know has treated others who have posted here previously and speak highly of him. Luckily, my ped onc boss had overnight paved a way for me to see Ross early next week. That was my way out of the med onc situation, so I can lay that issue to rest until my follow-up with Ross. Interestingly, it seems protocol at DFCI for cases like mine is surveillance; so Ross will likely suggest surveillance. If the second opinion confirms the first, then I will probably switch to surveillance.

                    My frat brother from Sloan should be getting my films tomorrow morning, and I have faxed the radiology reports to him. The Brigham was able to expedite the release of my slides, so I rushed out to get them sent to Sloan by Monday morning. Once the second path report is out, my buddy will present to Sheinfeld and then we'll see if a visit is warranted. That is all I can do on that front.

                    With all that done, I'm stoked I can now relax this weekend. Tomorrow is my wife's birthday, so we're skipping town to enjoy an oddly warm January day in New England.

                    Thanks for the replies. I'll know more next week.

                    Added later: Yes, djm, I totally remember seeing your posts re: Sloan. I'll definitely let you know if the trip is needed, and congratulations on the engagement! Enjoy the good weather today!
                    Last edited by Fed; 01-06-07, 02:00 PM.
                    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                    11.22.06 -Dx the day before Thanksgiving
                    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                    Comment


                    • #11
                      It's good to hear that today was a better day. Have a great weekend celebration!
                      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


                      Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                      Comment


                      • #12
                        Originally posted by djmac
                        I'm just engaged recently (tomorrow officially)...
                        Congratulations!!
                        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


                        Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                        Comment


                        • #13
                          i did not know this



                          I did not know you could not do Radiation 2wice or Chemo 2wice.

                          Is this true ?
                          10/09/06 -- pT1-pNx-Mx-S0

                          Comment


                          • #14
                            Fed, I am so happy that you sound so much better, I know that it must have been frustrating to say the least.

                            Enjoy the weekend with your bride.

                            Margaret
                            Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                            Current DVT
                            Current testosterone replacement therapy, Testim.

                            "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                            Comment


                            • #15
                              Originally posted by Scott
                              Congratulations!!
                              Thank you all! Life does go on after TC
                              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

                              Working...
                              X