Announcement

Announcement Module
Collapse
No announcement yet.

Next Treatment Option

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Next Treatment Option

    Hello all, I have been surfing this forum for a few weeks now and finally decided to join due to the amount of knowledge and support here. I am looking into the next line of treatment for myself and figured you guys may have some valuable input. Some background info, I found out I have Testicular Cancer about 5 weeks ago now. I had a right I/O on February 5th, so 3 weeks exactly today. Everything has been healing great as far as I know. The pathology came back as 95% Embryonal, 4% Yolk Sac, and 1% Seminoma. My blood markers were also low before the I/O with nothing out of range, and my tumor was also pretty small (about 1cm x 1cm x 1cm). So it is believed that I caught this fairly early. I have a CT scan coming up in a few days and it sounds like my options will most likely be RPLND surgery or surveillance. Do any of you guys have experience as to the route I should go? This will also be my first CT scan which I find somewhat strange...? I feel like I probably should have had one done a few weeks ago. Also, I am 22 and in decent shape if that matters at all. If any of you would like to voice your opinion I would greatly appreciate it!

  • #2
    As long as the CT scan comes back clear your options would be RPLND, adjuvant chemo, and surveillance. They are all good options. The survival rate for each is basically the same even if you relapse on surveillance since it would be caught in early stage 2. EC has Iíve read has a higher rate of relapse of stage 1 than say seminoma. Iíve seen on here depending on LVI that it may be as high as 50% if there is some vascular invasion. All are good options though. Whatever you are comfortable with the cure rate is basically 100%. I personally would have done 1xBEP adjuvant chemo just to be sure to be rid of it, but again do what you feel comfortable with.
    3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

    Comment


    • #3
      Well, that does seem a bit long to wait for a CT scan, but I see a possible advantage, if it comes back clear you can be a bit more confident about the surveillance option, although knowing if there was Lymph/Vascular Invasion (LVI) is important, because if present , as mentioned, about 50% do indeed relapse & need 3xBEP to be cured (They are almost always cured though, which is why there are no bad choices). Opinions vary on the RPLND for embyonal. Personally, I would not because it seems like they could miss some mets.


      My advise is to wait for the CT results & let us know if there was LVI noted in the I/O path report, and we can better help at that point.

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

      Comment


      • #4
        Best wait for CT results and then think on your options!
        July 2016 - Left I/O
        December 2016 - BEPx3
        All clear for 1 year!

        My Testicular Cancer Support Kit
        First Oncologist Visit Checklist
        3 Things I Wish I Knew Before I Started Chemo
        3 Reasons Why People Disappear From Your Life During Cancer
        Simplify Cancer Podcast

        Comment


        • #5

          This is some of my pathology report that may be of some use. Thank you for the responses so far! I know once I get my CT scan my options will be better laid out but it seems that it keeps getting delayed between the doctors and insurance.... very frustrating! D. LYMPHOVASCULAR INVASION IS NOT IDENTIFIED. E. TUMOR FOCALLY INVADES, BUT DOES NOT EXTEND PAST, THE TUNICA ALBUGINEA. F. RETE TESTIS WITH PAGETOID SPREAD OF GERM CELL NEOPLASIA IN SITU BUT IS FREE OF INVASIVE TUMOR. G. SPERMATIC CORD MARGIN FREE OF TUMOR.

          Comment


          • #6
            Iíd be weary of RPLND with EC personally. It has a tendency to wander, but it is extremely sensitive to chemo. There have been some on here who went with RPLND and relapsed again with EC. If you choose adjuvant chemo they may say 2xBEP, but I believe current literature says 1xBEP is equally effective. Someone please correct me if I am mistaken!
            3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

            Comment


            • #7
              So I got my CT scan results today. My doctor believes there is no real reason to believe it has spread anywhere, great news. He also said that due to my pathology he believes I have about a 30-50% chance of it recurring. He recommends surveillance or the RPLND surgery, no chemo. I am going to get one or two more opinions from doctors in my city's cancer center to see what they recommend. Im thinking surveillance for a while but would like to hear any of your opinions. Good news overall though.

              Comment


              • #8
                Hey dude, I was in a somewhat similar situation 4 months ago. Pure EC, but with LVI invasion unlike you. If memory serves me, you would have a 30-40% chance of relapse as is (someone correct me if I'm wrong). 50% is for LVI +. So that means you have a good chance that you are already cured! That being said, each option is valid and chemo is also certainly a valid option also. Personally, if you can manage the psychological aspect of surveillance, I'd opt for that. Chances are you can feel exceedingly confident as time goes on if your CTs are clear because EC comes back quickly, vast majority with in the first year. RPLND would probably be my second favorite option but only by a skilled urologist at a high volume center. We can help you find one if you go that route. BEPx1 would be my last choice but in my opinion is equally valid as any, and carries very minimal side effects. It's all about risk tolerance. These are my choices and any works just fine. The most important thing by far at this point is to decide on one within 6 weeks, the sooner the better. If it's RPLNd, scheduling to potentially go out of state needs to be on your mind. You'll be just fine.

                Comment


                • #9
                  Originally posted by Anonymous69 View Post
                  So I got my CT scan results today. My doctor believes there is no real reason to believe it has spread anywhere,
                  That is a rather odd way of putting it. Do you have a copy of the CT report?, Id be curious to see the exact wording. Also, are you seeing a urologist of an oncologist? You doc doesn't seem to be giving you all the options...

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

                  Comment


                  • #10
                    Well those weren't his exact words. The only spot of some concern he saw was a sub-centimeter lymph node on my left side that he thinks is most likely benign. Based off of other cases he wouldn't expect it to jump sides since I had a right I/O, very low blood markers, plus small initial tumor. Im still weary of it but trying to see the positive. He is also a urologist who specializes in urologic oncology and urological surgery (UPMC Mercy - Pittsburgh).

                    Comment


                    • #11
                      Wishing you the best as you decide
                      Son Grant
                      dx 12/21/16 at age 17

                      BEP x3
                      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                      Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                      Comment

                      Working...
                      X