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  • What's happened so far, and what's to come

    First of all, I apologise in advance for the wall of text. I will do a TL;DR down at the bottom. I have a feeling this is going to turn into a short novel...

    Hello everyone! I'm sorry I have to meet you all in a place like this, but at the same time, I'm very glad I found you!

    My name is Robin, and I'm a 29 year old guy from Gothenburg, Sweden.
    I've been lurking on the forums for a few weeks now, so I think it's about time I share my story. I don't think I'm a particularly good writer, but I feel like I need to tell the whole story to people outside of my closest family. People who have gone through what I have and still am going through, or know someone who has/is.
    In fact, I don't think I've told anyone about ALL the details, and even if no one ends up reading it all, I kinda just want to "get it out of my system", so to speak.

    Roughly 5 months ago I watched a Youtube video of Furious Pete, professional eater and amateur bodybuilder, in which he talked about his battle with testicular cancer. He urged everyone to do a self check in the shower once a month or so, and later that night I did.
    I found a small lump on my left testicle, but it didn't hurt, and it wasn't very big (about the size of a grain of sushi rice), so I didn't think much of it. I even told myself that I was probably imagining things.
    About two months later I did another self check, and at that point, I was fairly sure it had gotten bigger, but at the same time, it didn't hurt whatsoever, so once again, I ignored it.
    I thought to myself that if it wasn't gone by then, I'd get it checked out after the summer so that I, if I had to do something about it, wouldn't miss as much work.
    That was obviously a bad decision, but to make a VERY long story short, I've struggled with all kinds of things since I was about 5 years old, and I had FINALLY started to get my life together.
    I did do a fair bit of research on testicular cancer at the time, so I guess, in the back of my head, I knew that was a possibility.

    Fast forward to the night between the 4th and 5th of August, and from here, things went fast.
    I noticed a very strange sensation in my left testicle, and it wasn't as much pain as it was discomfort, and the left groin area felt kinda numb, but I assumed it'd go away. I had been sitting down a lot for two days straight as I had nearly a whole week off, and I had just bought a few new pairs of boxers that were just a tiny bit too small, so I attributed it to that. I figured the new boxers had somehow managed to cut off the blood flow.
    The next night the it felt pretty much the same.
    The night after that (I work night shifts, so I usually stay up all night most of the time on my nights off as well) it felt... different. The numbness was almost gone, and the testicle started feeling almost bruised, in a weird way. The closest feeling I can think of is a bad case of blue balls. Still didn't do anything about it.
    On the night between the 7th and the 8th it started to hurt. A LOT. One of my worst traits is that I don't seek help from anyone, for any reason, unless I really have to, and I was at the point where I felt that I didn't have any other option.
    The pain was absolutely brutal. I hadn't done any more self checks since that time ~3 months earlier, and just gently putting the testicle between my fingers gave me flashbacks to this one time when I used to do Thai boxing and got a heavy knee straight into the groin without a cup on. It also felt like my fingertips had magically transformed into a hair straightener, so while I didn't spend too much time with my hand down there, I realised there were now 3 lumps, two of them the size of a flat pea, and the third, biggest one, was nearly the size of an edamame bean. I also noticed that roughly 20% of the surface area of the testicle was very firm, and that part didn't really feel like a testicle at all any more.
    Oh SNAP!

    I went to the ER at around 11 AM August 8th, but as there were heaps of people there before me, I still had to wait over an hour just to see a nurse.
    They took 3 or 4 vials of blood while I told them why I was there, and when they asked me when I first noticed that something was different, I told about my first self check, nearly 5 months earlier.
    I can still remember the sound and face one of the nurses made as I said that as if it were yesterday.
    Unfortunately, that was a very busy day at the ER. Two shootings and a major car accident. I finally got to see a doctor on the following night at around 3 AM, August 9th. I'm sure he was gentle, but it was still extremely painful. After the examination I was told that I'd get an ultrasound done in the morning.
    At 7:45 AM I was taken to a different part of the hospital for the US, and the 10 minutes that followed were the longest 10 minutes of my life. Some people might think I'm exaggerating, but the only thing that has even come CLOSE to the pain I felt in there was when I had meningitis and was sure that my head was going to explode from the immense, vomit inducing pressure I felt.
    After I he was done, the doctor told me I was to go see the urologist later that day, and before I left I managed to get one of the nurses to give my some oxycodone and naproxen.
    I was told I was in such pain because of a serious inflammation, and while I'm a person who try to stay as far away from any type of painkiller as possible, I just wanted something, anything, to make the pain more bearable.
    A few hours later I met with the urologist, and after a quick examination, he told me that the blood work looked good, but based on what he and the first doctor felt and the US, there was no doubt in his mind that I had cancer.
    I stayed at the hospital for roughly another hour to talk to another nurse, a TC survivor, and got information about the surgery, "Ung Cancer" (support group for young people with cancer and young cancer survivors) and other things that I might want/need to know.
    Before I went home they took, if I remember correctly, 12 or 13 more vials of blood.

    On August 14th, I went to cryo-freeze a couple battalions or my soldiers, and later that day I got a call saying I was getting the surgery done two days later, on August 16th. I returned for round two the next day, and hopefully, that'd be enough in a worst case scenario.

    August 16th arrived, and in a way, I was looking forward to the surgery! No more waiting. Time to actually DO something about the problem. I've had several surgeries before this one, so I wasn't too nervous about the surgery itself, and not much of interest happened before it was time for me to go under the knife.
    The surgery went really well, but I was told they had to drain about 250 ml of urine, even though I had been to the bathroom no more than 20 minutes before the anesthetics kicked in and I went on a a short trip to la la land. The doctor informed me that it wasn't uncommon for the bladder to temporarily stop functioning properly due to the pain killers.
    I stayed in bed for a while, eating a sandwich and a couple of icy poles, had some coffee and heaps of water. They told me I couldn't leave until I had used the bathroom. After a while I could tell my bladder was getting full, but no matter how much I tried, my body didn't want to listen. I had another cup of coffee (nothing makes me have to go quicker than caffeine) and some more water, but still nothing changed.
    At this point if felt like my bladder was about to burst and after the nurse had done a three second ultrasound on my lower abdomen, she just got up and said: "Wait here. Catheter, right away".
    I never thought I'd be happy about getting a catheter, but it was starting to hurt quite a bit. They drained just under 1500 ml straight away, and then another 300 ml over the next hour. I still couldn't pee, and because my bladder had gotten stretched pretty badly, I was sent home with the catheter still in there in order for my bladder to recover. Not going to talk a whole lot about that, but I had it in for 6 days, after which I could pee properly.

    On August 23rd it was time for me to do my first CT scan ever, and while that in itself wasn't stressful at all, what happened while I was there made me quite nervous...
    There were two nurses there, performing and monitoring the scan. Flat on my back, arms over my head, "breathe in, hold your breath... breathe out". You guys know the drill!
    Nurse 1 enters the room again and walks up to me:

    Nurse #1: "Alright, you're done! Just pull up your trousers and you're good to g-..."
    Nurse #2: *calls for Nurse #1* Nurse #1 leaves and comes back a minute later
    Nurse #1: "Sorry, could you please just wait a minute. My colleague went to get a doctor to come have a look at some of the images..."

    Roughly 10 minutes later Nurse #1 comes back and asks me to turn around and lay down for some more images, flat on my stomach this time.
    After I was done they didn't say anything about why they had to call for a doctor, or why another scan was needed. They only told me I'd get the report in about a week.
    Went back home, and that week was harder to deal with than having the I/O done, or even getting told I've got cancer.

    Yesterday, August 30th I got the call I had been waiting for. The pathology report showed that it was indeed cancer, but she didn't tell me about type, or anything like that. Blood work still looked good, as did the CT.
    They DID however find "something" on/in my lungs, but that it was probably due to an inflammation.
    Now I'm waiting for a call from the oncologist, who can hopefully tell me more about tumour type etc, and what's to come next.

    From what I've read one here, and If I'm lucky and it hasn't spread, I assume the next step will be surveillance? Just have to wait and see, I guess!

    Anyway, it's past 7 AM, and I need to get some sleep, so this will have to do!

  • #2
    My first message was too long (I KNEW IT!), so I have to write the TL;DR in a new post:

    TL;DR
    - Found a tiny lump on my left testicle about 5 months ago. No pain, ignored it.
    - Noticed an increase in size 3 months ago, but I still ignored it. No pain.
    - Aug 8th: Went to the ER due to severe pain, and I now had 3 pea-sized lumps on the testicle, and roughly 20% of the surface area was very firm.
    - Aug 9th: US, doctors seemed sure it was cancer.
    - Aug 16th: Left I/O
    - Aug 24rd: CT
    - Aug 30th: Blood work looks great, CT shows "something" (most likely an inflammation) in my lungs, but other than that it, nothing to be worried about!

    Currently waiting to meet with the oncologist for more information about the tumour itself, and steps to take from now on. Feeling pretty good!

    So there you have it! Looking forward to learning more about everything related to TC in the future!

    Comment


    • #3
      So, today I meet with my oncologist for the first time, and while she did tell me some good news, I was also a bit surprised by what she said about the pathology report.
      Now, I know you can't say it's definitely not a non-seminoma just 'cause the blood tests don't show any tumour markers, but that, plus the fact that I found a lump ~5 months ago, the tumour was 2x2cm at the time of my I/O and the CT looked great made me think it was a seminoma.
      Nope! 100% embryonal non-seminoma! Pretty much the complete opposite of what I expected it to be. Oh, and while the tumour was only 2x2cm, there was a lot of necrotic mass surrounding the tumour, which is why it felt like up to 1/4 of the testicle was hard and had a rough surface.

      So what's next, then? Like I said, CT showed now signs of it having spread, BUT, apparently the pathologist reported that it had in fact attacked the blood vessels. All of this means that in my case, the risk of relapse is about 50% if I don't get any further treatment.
      I'll do another CT and more blood work 4 weeks from now, and if nothing has changed, I'll have to wait for 3 more weeks, and after that I'll get 1x BEP.
      They told me that if nothing new shows up, the risk of a relapse after 1x BEP should be down to 2-3%, but IF it decides to show up for round 3 and I/O+1x BEP wasn't enough, I'll get 3x BEP.


      I got heaps of great information from my oncologist and the nurses there, and they all seem to be genuinely nice, caring people, so I've got a good feeling about this. I mean, sure, maybe their competence is more important, but I'll be seeing them on a regular basis for the next 5 years, and it'd suck to have to deal with a bunch of grumpy doctors and nurses!

      Comment


      • #4
        Hi Sir Lurkington - men are often stubborn and it takes PAIN to get them in; I'm glad you finally got there though. It looks like you still caught it fairly early and your prognosis sounds promising. It was only about 3.5 months for my son and he's just now done with 4xBEP and headed into surgery (RPLND) next week.
        Please keep us updated on your follow-ups and your future treatment!
        Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
        5.10.17 - Initial diagnosis
        Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

        5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
        5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
        PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

        Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

        BEP#1 6.9.17 BhCG:77,721, AFP 34
        BEP#2 7.3.17 BhCG: 210, AFP: 6
        BEP#3 7.24.17 BhCG: 19 AFP: 3
        BEP#4 8.14.17 BhCG: 4.59 AFP: 5

        8.28.17 BhCG 2.46, AFP 6
        9.7.17 BhCG 1.78, AFP 3

        RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

        Comment


        • #5
          Hello, TC Mom!

          Yeah, some of us are stupid like that, and especially when it comes to stuff in that general area. Like I said, I was really surprised to find out that it was a 100% embryonal non-seminoma since from what I understand, it's one of the most aggressive types (please correct me if I'm wrong). Don't get me wrong, I'm EXTREMELY happy it didn't spread, just surprised.
          4xBEP sounds really, really rough, and it seems I/O is a walk in the park (physically, at least) compared to RPLND, and I'm sure having the surgery so soon after 4xBEP requires a lot of strength. I hope the surgery goes well, and I wish him a speedy recovery!
          I'll keep you updated, for sure! This place is filled with knowledge and both first and second hand TC experience, and even though I have friends and family I can talk/vent to, it's just not the same.

          Thanks for stopping by!

          Comment


          • #6
            EC can be aggressive, but very responsive to chemo. You caught it very early so regardless of what happens you should be good to go long term. I had a Lymph node at 1.9 cm, but Dr. Einhorn said with that size and 100% Embryonal that BEP alone has about a 100% cure rate. Aggressive is a weird term because each cell type has different cons. With Embryonal you just need to catch it early it seems. You did so you should be good to go even if you relapse chemo will take care of it for good.
            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 was 19. 8/16/17 AFP drops to 10. Doctor pleased ALL CLEAR!

            Comment


            • #7
              Wishing the best as you decide treatment options. I would suggest blood work again. I will say that sometimes intial CT will appear normal, but that it can change 4-5weeks later.
              17 year old son Grant dx 12/21/16
              pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
              pre/o CT Scan 12/22/16 normal
              r/o 12/22/16
              Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
              PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

              -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
              2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
              BEP x 3 1/27/17
              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


              • #8
                Originally posted by dcalandrelli View Post
                EC can be aggressive, but very responsive to chemo. You caught it very early so regardless of what happens you should be good to go long term. I had a Lymph node at 1.9 cm, but Dr. Einhorn said with that size and 100% Embryonal that BEP alone has about a 100% cure rate. Aggressive is a weird term because each cell type has different cons. With Embryonal you just need to catch it early it seems. You did so you should be good to go even if you relapse chemo will take care of it for good.

                Yeah, that's why I've found this whole thing about it being 100% EC strange. I mean, I found the lump about 5 months prior to the I/O, and from what I've read, it's fairly rare to have a 100% EC grow for 5 months without it having spread. Then again, I'm new to this, and I'm learning new things about my diagnosis and TC in general every single day, so I wouldn't be surprised if I'm wrong.

                Comment


                • #9
                  Originally posted by Trekga View Post
                  Wishing the best as you decide treatment options. I would suggest blood work again. I will say that sometimes intial CT will appear normal, but that it can change 4-5weeks later.

                  Thanks! Well, I will have more blood work and another CT done in 4 weeks (at some point during week 40), and if nothing has changed, the plan is to do 1xBEP about 3 weeks after that since in my case the risk of relapse is around 50%. That's pretty much already been decided. However, if blood work/CT shows any signs of it having spread by then, 3xBEP seems to be the best option. I guess I can't really do a whole lot at this point other than waiting and hoping for the best.
                  Sure, the need for an I/O wasn't a whole lot of fun, but the constant wait for the next step is a lot harder to deal with, in my opinion.

                  Thanks for stopping by!

                  Comment


                  • #10
                    Originally posted by Sir Lurkington View Post


                    Yeah, that's why I've found this whole thing about it being 100% EC strange. I mean, I found the lump about 5 months prior to the I/O, and from what I've read, it's fairly rare to have a 100% EC grow for 5 months without it having spread. Then again, I'm new to this, and I'm learning new things about my diagnosis and TC in general every single day, so I wouldn't be surprised if I'm wrong.
                    EC spreads fast, so I'm surprised there are no lymph nodes showing up on the CT scan. You never know, you could be cured already. But you could just as easily have cancer cells in your lymph nodes hiding out.
                    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                    7/1/2015: felt tiny lump on side of R testicle
                    7/30/2015: Ultrasound shows 2 intra-testicular masses.
                    7/31/2015: tumor markers normal, CXR clear
                    8/5/2015: R orchiectomy
                    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                    8/14/2015: CT abdomen/pelvis clear, Stage 1b
                    8/24/2015: started 1 x BEP

                    Comment


                    • #11
                      Originally posted by RJKD View Post

                      EC spreads fast, so I'm surprised there are no lymph nodes showing up on the CT scan. You never know, you could be cured already. But you could just as easily have cancer cells in your lymph nodes hiding out.
                      Yeah, that's something I've taken into account as well. I mean, sure, the CT from 2 weeks ago didn't show anything, but the pathology report from 2-3 weeks ago (not exactly sure how long it takes to figure out what's going on after the I/O) DID show that it had attacked the blood vessels. I realise that the CT I'm having done in 4 weeks might show that it did indeed spread, and I'm prepared for the possibility of having to go through 3xBEP as well. I guess I'll just have to wait and hope for the best!
                      Thanks for your input!

                      Comment

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