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Curious / over reading about recurrence

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  • Curious / over reading about recurrence

    Hi all!

    Currently in cycle 3 week 1 day 3.

    As I get closer to the end of the 3xbep I’ve been reading this group and have some questions.

    I was initially diagnosed with stage 1 pure seminoma and then put on surveillance- I was followed up with stage 2b seminoma after a fine needle aspiration confirmed seminoma in my retro.

    Anyways here are my questions:

    1. I was under the impression seminoma was a higher success rate than non seminoma for the chemo but looking at this site I’ve noticed a few ppl that have had their seminoma change after the bep or even still go to the brain. Does anyone have any Indo or link on this?

    2. Has anyone experienced headaches behind the eyes? My onc says no need for brain mri since it isn’t protocol but I’ve had it for a few days

    3. I really don’t know how to stop the overthinking about this. Some days I’m fine and take it day by day and others I find myself looking through cases here that started similarly but went way further then what was discussed. Out of curiosity so that I have a map if bep fails, can anyone provide I do on what typical next steps are?

    Thanks !

  • #2
    The cure rates for seminoma are higher as they grow slower, but not all non seminoma are the same. Pure chorio for example would have a much lower cure rate than pure embryonal or a mixed cell. Either way the cure rates are very similar for both.

    As fore the MRI, it’s easy to say don’t worry, but honestly seminoma isn’t aggressive enough to spread to the brain during chemo. I’ve never seen it happen here.

    Over thinking is so hard for us all. (Trust me I have a check up in two weeks and I have good days and bad days). I have see. Different things happen post BEP, from HDC, RPLND, or TIP. It is highly unlikely you’ll be in that boat. You were diagnosed stage one. That cure rate is 99%. That includes relapses because on surveillance they are caught early as yours was. It is very rare for BEP to not do the trick.
    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! 6/02/22 All clears up to here! 5 years all clear! Son due October 2022, conceived naturally!


    • #3
      Thanks ! I guess I’m just confused even when trying to stay educated about it all.

      Also sorry to correct and re-ask, but I believe my onc tho I they misdiagnosed initially and in fact was stage 2 A initially and they restaged 2C before the chemo, does that impact the cure rates?

      Thanks again for the kind words - I guess being in a chair in the unknown is impacting my mood especially being close to the end. I hope your check In will be smooth!

      Thanks agai. For the quick answer


      • #4
        Maybe slightly, the earlier the better, but the cure rate of all stage 2 disease is 96%. (97% for seminoma I believe) That includes 2a-2c so even if there is a difference it wouldn’t be much based on those statistics I’d imagine.
        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! 6/02/22 All clears up to here! 5 years all clear! Son due October 2022, conceived naturally!


        • #5
          When you complete BEPx3 I’ll share the same words my oncologist shared with me. “Your cured....count on it!” I still have that email and look at it often. Unfortunately even though he was right, I ended up with TC again in the survivor. A very rare occurrence from what I can see and read.

          It’s tough to not think about it often but I can assure you that I got 5 years out and honestly I would sometimes think about it but it never really bothered me. I had some of the best experiences of my life post TC #1. It will eventually start to leave your brain as your appointments become less and ct scans start to go away. Your just in the actual moment right now. I also find myself posting similar questions and reading all of the internet each night as I’m about to start EPx2 Monday.

          All I can say is I know it’s not good to stay on the web dwelling on small percentages. I wish I had more self control but I don’t. I wish I was stronger some nights but I’m not. The sooner you can finish chemo, get a clear scan and move on with your life the better. And I can promise you that with about 95% cure rate, it shouldn’t be in your head. Other people with other cancers have much less numbers than that and I have to remind myself that we got lucky on this one. It sucks and I’ll curse it to the day I die two times but I have friends with breast cancer, bladder cancer, rectal cancer, colon cancer and they would pray for a 95% or better and a very minimal change in life.

          My first one was stage 3a and I had a lump in my neck. I got the brain MRI even though they said it wasn’t necessary. I wanted to know for sure. If you do too ask for it. It’s your life but just like stated above, it’s highly unlikely.

          Find a way to make peace with it and yourself. Easier said than done. I thought I had that but now I have to do it all over again and add 2 more rounds to my overall chemo but I’m gonna make it through this and live my best life possible this summer for sure.


          • #6
            Hi there, I find myself in the same boat. I'm on week 5 of bepx3. Close to done. My hcg levels rose after the first week of treatment but by week 3, they dropped. While I understand that this tends to work for stage 2b seminoma, I do find myself having doubts of it not working. For some reason, I find myself thinking of recurrance... Even if I'm in the midst of treatment. I suppose it's human nature.

            Much strength and love to those undergoing treatment. It's definitely not easy but worth fighting for.
            12/14/2018- initial diagnosis cancer left testis
            12/18/2018-informed that it spread to my lower back
            12/27/2018- i/o left testis
            01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
            1/08/2019-Oncologist recommends 3xBEP
            2/4/2019-Treatment begins
            4/1/2019-last day of treatment
            6/1/2019-hope to be in remission


            • #7
              I am curious about why they did a biopsy if your CT scans showed clear enough to Dx at stage 1?
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP


              • #8
                Originally posted by StetCity35 View Post
                Hey guys,

                I’m 25 years old and have gone through HELL since December of 2018. I noticed a lump back in November on my left testicle. I went to my doc who sent me in for a ultrasound. Come to find out, I had not one but THREE masses found. They found two on my left but one on my right. I was referring to a urologist who told me it’s most likely cancer. When she examined me, she didn’t feel anything on my right, which is crazy! I had surgery a few days later to remove my right and go in and try a partial orchiectomy of my right. The surgery was a success, but unfortunately, the pathology report came back with two masses on the left was cancer. One was Embronical carcinoma, seminona, and a minute focus of yolk sack. The smaller one on the left was pure seminoma. Then, on my right, I had what was called post pubertal tertoma, but she removed the teratoma and left my right one in. Fortunately, none of my tumors got as far as my rete testis. I didn’t have any vascular invasion, which put me at Stage 1A. So, a few weeks after surgery I get a call to have a second opinion on my right from Dr. Einhorn because they said I have intratubular neoplasia in my right, which is precancerous cells. I saw Einhorn and he said to remove the right and get on TRT. My urologist was hesitant to move forward with this because it’s premature. To note, my serum tumor markers were normal and my Ct scan was clean before surgery and my blood levels haven’t changed since then (I’ve had two more tests since December).

                Basically, the best of the best which is Einhorn said to remove it, so I did last week. I started on testesterone gel and I’m on day 5. I feel fatigued, lack of energy, and don’t feel like myself. Any words of the wise with testesterone? I was told shots are better. I think I wanna start those next week.

                Words of encouragement or advice?

                My oncology and Dr. Einhorn agreed that I should have my right removed and be on active surveillance since I had no lymphovascular invasion.
                Hey Stet city. Let’s post this in the testastrone challenges section so that more people can comment for you. You will get a lot more answers. I’m new to all of this also. Lost the second on January 7th and went right on pump gel immediately. I didn’t really feel any worse but my levels after 2 weeks came back at 163 which is horrible. I was told I have really 3 different choices. #1 was the gel pump but that wasn’t working for me. Either user error or it just wasnt working. #2 TestaPel which is a pellet system that gets sewn into the fatty portion of your upper butt. It’s a time release system and gets sewn in every 3 months or so. I didn’t like something sewn into me and have to get a VERY MINOR surgery every 3 months. In addition things that are this far out seem to have highs and lows for some users like a rollercoaster. I wanted to have a more steady T level and no surgeries. Some guys (MMA) swear by TestaPel just FYI as my doctor told me as we are in LA and he has many of those clients. #3 shots. This one scared me to death. I’m on my second TC and probably have had a IV or blood draw about 1000 times. I hate needles and to this day have never looked at the blood. This is why the shots scared me so much. To put a needle in myself wasn’t something I was able to do. If you are able to do so then they could be your best cheapest option. My docs showed me Xyosted shots. They were just FDA approved. I posted about it in the other section. It’s a spring activated trigger system like an Epi Pen and it goes in your stomach. I swear you don’t even feel it. Not sure what my #’s are yet but if they are still low I’m assuming they can increase the amount of T in each shot. Even someone like me who hates needles and to this day never looked at a blood draw is able to self administer.

                Hope this helps a bit but some of the other guys in the other sections have much more knowledge than my 6 weeks.


                • #9
                  my dad was telling me about those xyosted shots. Insurance said in May we could try them out. I just dont want me levels so low and they say the gel usually keeps you at the lower range of things.


                  • #10
                    Hi Davepet,

                    I think my situation was a bit odd. Before this ordeal I had a ct in 09 that always showed a row of lymphs that we’re borderline in my abodomen. So when I caught the cancer and they compared ct from 2018 to 2009 they didn’t see any growth changes so they dx me as stage 1 pure seminoma and put me on surveillance .

                    In January one of those lymph’s doubled to 33x35 mm so to confirm that it was related they did a ct guided biopsy .
                    Honestly that biopsy was messy- they didn’t get a lot of sample and had to switch to fna last minute to try to get some material.

                    Not much was present on the material but enough to conclude that morphology was consistant with seminoma but it also says that clinical correlation is recommended which I’m not sure what that means.

                    Regardless I went to two oncs that said the next step was to do 3bep so here I am. I keep running back in my mind about what I lost in terms of odds if I had done the chemo in June when it got caught but seems that it wouldn’t have changed much.