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My TC Journey So Far, Stage 1 Seminoma

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  • My TC Journey So Far, Stage 1 Seminoma

    Hey Guys, I hope by documenting my treatment here this might help at least one other person going through this seemingly all-too-common disease.

    About me:
    33year old who served in the UK military and is a keen mountain bike and track athletics enthusiast. I have not had a drop of alcohol since I was about 18 (And that was probably one beer), never smoked, have never been unfit or inactive for long periods, eat a ridiculously healthy diet and have done for years (low sugar, very little preservatives or artificial foods, heaps of vegetables etc.). Always get laughed at by mates/colleagues for being so healthy and would never have expected to get diagnosed with cancer at 33. Just goes to show, it has no favouritism!

    Cancer Diagnosis:
    Discomfort on right testicle noticed over a couple months, not pain, but just an awareness of them being there which was unusual. Left has always been larger than the right so that was not something alarming but in hindsight was probably a contributing factor according to the Urologist.
    Slightly elevated blood markers so Orchiectomy was carried out four days later. Pure Seminoma found and no obvious spread of cancer cells into other organs. Oncologist offered two options; surveillance (25% re-occurance probability) or one dose of CarboPlatin Chemotheraphy (2% Re-occurance).
    For me the choice was easy, with a young family and the chance of much heavier BEP at a later date I chose CarboPlatin. As I write this I am on day 6 after this treatment. Here is how it has gone so far:

    Day 1
    CarboPlatin Treatment 3pm Thursday 04/10/2018. No side effects immediately felt that evening.

    Day 2
    Woke up feeling okay, no obvious signs but aware of fatigue towards the evening and a general feeling of being drugged-up. Normal bowel movement in the morning. No hair loss. Anti-nausea drugs doing their job.

    Day 3
    Fatigue starting to set in and taste change. For every four hours of being awake I felt the urge to then sleep for a couple hours to compensate. No bowel movement…
    70% of normal self

    Day 4
    Sore throat possibly from my 4yr old daughter who has a fever. Lethargic and generally feeling a bit rough, like I have been poisoned (go figure!). No bowel movement…
    60% of my normal self

    Day 5
    Woke up with slight chest discomfort. Because of the doctors recommendations about chest pain I decided to call the hospital and they recommended going straight to the Emergency Centre. The risk is too high with Chemo patients to be messing about. After a scan and blood test it was clearly not a heart issue so I was given some acid reflux medication and sent on my way. Finally had bowel movement today.
    Whilst in the EC I witnessed various other people coming in with much more serious problems and this made me feel better and a bit of a wimp really lol.
    I am very tired and although able to think clearly I am somewhat agitated by the continuing effects of the drugs, it’s difficult to explain, but as a usually active person it just feels somewhat debilitating but I know it will be short-lived.
    50% of my normal self.

    Day 6
    Woke up feeling better compared to the day before. I decided to go shopping, good idea for two hours but then got exhausted. Long midday sleep and now feeling good again, probably about 70% of myself. Had some crazy food craving today which resulted in buying organic beef sausages and hotdog rolls and eating three massive hotdogs. I haven’t eaten processed red meat for years/decades so that’s pretty insane. My wife thinks I am pregnant…
    80% of normal self but not getting too excited yet…

    TBC

  • #2
    Great Journal... I was looking for something just like this a few months ago! Keep it up if you can; very good chance it will be very helpful to someone in the near future!
    6/4/18 BHCG 452, AFP 1
    6/13/18 CT Scan, no involvement beyond left testicle
    6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
    6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
    7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
    7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
    8/27/18 Chest CT Scan clear
    9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
    9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
    11/23/18 CT Scan, "No evidence of residual or recurrent disease, no lymphadenopathy or evidence of metastasis"
    11/27/18 BHCG<2, AFP 2.0, LDH 173

    Comment


    • #3
      Originally posted by johnm620 View Post
      Great Journal... I was looking for something just like this a few months ago! Keep it up if you can; very good chance it will be very helpful to someone in the near future!
      . Thanks John, I really do hope so! I remember scouring the Internet myself when I first got diagnosed and the few journals I found were extremely comforting. All the best.

      Comment


      • #4
        Day 7

        I am pleased to report that today seems like a continuation of the upward trend from yesterday. I went out and did some work maintaining my mountain bike which was unheard of recently. My stamina certainly is still limited and I need a good sleep around midday and an early night. Something I havent yet mentioned is the tendency to wake up several times at night, possibly a result of the steroids they give you with the CarboPlatin. Nothing serious but I usually have no issue sleeping all night.

        Today I still have a desire to eat some unusual foods, mostly red meat which I can only imagine is for the iron my body requires to heal the blood cell reproduction. Although I have been drinking a lot of water I still have very dark urine, Im guessing from the toxins. My Oncologist (Dr David Grimes @ Greenslopes Private Hospital, Brisbane) mentioned that your blood and immunity is at its lowest between 3 days - 9 days post treatment so I intend on taking it easy for a few more days to come.

        80% of normal self today.

        Comment


        • #5
          My oncologist told me that the red blood cell count is the last to recover. Before my orchietomy, I was running 12-15 miles per week. My carob1X was on July 25th. I still am struggling to run more than a mile or so without a significant break. Not sure if that it is because I am out of running shape (I took about 10-11 weeks off), or if it is because of the low red blood cell count.. Probably a combination of both.

          But... I am back to running 3 days a week. Can't complain!
          6/4/18 BHCG 452, AFP 1
          6/13/18 CT Scan, no involvement beyond left testicle
          6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
          6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
          7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
          7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
          8/27/18 Chest CT Scan clear
          9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
          9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
          11/23/18 CT Scan, "No evidence of residual or recurrent disease, no lymphadenopathy or evidence of metastasis"
          11/27/18 BHCG<2, AFP 2.0, LDH 173

          Comment


          • #6
            Day 8-14

            Day 8 was the first day I felt totally normal again, except my taste and food cravings were still abnormal (craving mostly iron rich foods like red meat) and for some mild fatigue late in the day. I spent the day on my feet though and I seem to have turned the corner. Over the next few days I returned to work and gradually had no lingering issues from the treatment. As I write this it's day 17 since treatment and tomorrow I intend on slowly getting back into a fitness regime with some light body weight exercises and some track running the following day. I still need to be mindful of the reduced immune system function so the idea is not to get run down at all and certainly not to get injured either!

            I had blood taken recently too and the Oncologist was impressed with the results. I guess I will never know if always being fit and eating healthy prior to the diagnosis was a contributing factor to my speedy recovery, but I will be keeping that up as long as I am able. I am a strong believer in the power of physical fitness for brain function and health. I could imagine someone with tendencies for anxiety or depression could be hit very hard with treatment and even more so for those who need the full BEP course. It's not an easy thing to go through but for the sake of 8-9 days for the Carboplatin I honestly would highly recommend that option to anyone sitting on the fence with surveillance. I am not a gambler though, especially not with health/life.

            Please feel free to reach out if you are considering or going through this treatment, I would love to support!

            Comment


            • #7
              Update:

              After getting totally back into my gym training and feeling great, I over-did a deadlift session and hurt my lower back. The next day I started experiencing dull waves of pain in my remaining left testicle. Fast forward two weeks to today and I have been for a blood test and Ultrasound on the testicle as a precaution. My hope is to rule out cancer related pain. The back pain is local to the L1 and L2 which apparently have a shared canal for the nerve which goes to your groin. This can result in referred pain from the back injury to the scrotum apparently. Aside from the back and scrotum pain I also have a general strange feeling of heaviness in the left hand hip and abdomen region which also comes in waves with the back and testicle pain.

              I will be back to see the doctor tomorrow. I hope the ultrasound can shed light on what is wrong because my mind is flicking back through the horrible thoughts of the first diagnosis and any confidence I feel I have gained for life and my family is fragile once again...

              The fact it totally coincided with the back injury is the glimmer of hope I am latching onto. I will update in the near future!

              Comment


              • #8
                So the back pain was an interesting one! Turns out I had no cancer issues (bloods & CT were clear) but after some head scratching by my doctor I decided to visit a very good physio. After one 30min session of movement and him manipulating various parts of my lower back the testicular and all associated lower abdomen pain was GONE! Now several weeks later it has still not returned.

                Now, this got me thinking. If you remember my initial diagnosis was as a result of me feeling pain in my left (remaining) testicle, which continued after the right was removed after this exercise injury. What I am now thinking is that it was totally coincidental all those months ago that I went to the doctor with testicular pain and then got found out to have TC. I now dont believe the pain had anything to do with the cancer. However, it could have saved my life! I think that the pain I have had all this time was in fact muscular skeletal. There is a nerve which runs through our L1-L2 vertebrae which can transfer pain if squeezed into our lower abdomen, including testicles.

                Very interesting I thought when checking it out and googling it in more detail.

                Comment


                • #9
                  Originally posted by Lostsaffa View Post
                  Now, this got me thinking. If you remember my initial diagnosis was as a result of me feeling pain in my left (remaining) testicle, which continued after the right was removed after this exercise injury. What I am now thinking is that it was totally coincidental all those months ago that I went to the doctor with testicular pain and then got found out to have TC. I now dont believe the pain had anything to do with the cancer. However, it could have saved my life! I think that the pain I have had all this time was in fact muscular skeletal. There is a nerve which runs through our L1-L2 vertebrae which can transfer pain if squeezed into our lower abdomen, including testicles.

                  Very interesting I thought when checking it out and googling it in more detail.
                  There are others that have had the same coincidental discovery. I have read some stories where they went to the DR because of a testicular injury (sports related generally) and they do an ultrasound and find TC while they are investigating the injury.
                  6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                  6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                  7/7/15: bHCG 56, AFP 42, LDH 322
                  7/13/15: begin 4xEP, end 9/18/15
                  10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                  10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                  4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                  4/20/16: RPLND @ IU - teratoma only!
                  4/15/19: all clears up to this date!

                  Comment


                  • #10
                    Originally posted by biwi View Post

                    There are others that have had the same coincidental discovery. I have read some stories where they went to the DR because of a testicular injury (sports related generally) and they do an ultrasound and find TC while they are investigating the injury.

                    Interesting indeed. I had a follow up with my Urologist recently and he reckons many of his TC patients originally come to him with testicular pain which is unrelated to the cancer.

                    Comment


                    • #11
                      @lostsaffa how are things going for you? No relapses? Just wondering

                      Comment


                      • #12
                        While there are quite a few on this forum who think that their TC was causing pain, I really believe they were just fortunate to have pain for some other rreason & that is why their TC was discovered early enough to be treated successfully.

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

                        Comment


                        • #13
                          Originally posted by Violet0729 View Post
                          @lostsaffa how are things going for you? No relapses? Just wondering

                          Hey Violet, I have had two blood tests and a CT scan of my lower chest and abdomen and so far nothing untoward has been noticed. It has only been 6 months though so I am definitely not out of the deep water yet. I get my next full CT scan in early May.

                          Other than what I wrote above, I keep having random seemingly unrelated symptoms in various parts of my body. None have been serious but having been very healthy and fit prior to treatment for the cancer I see anything as being unusual. For example, I have developed a form of acid reflux where which causes my upper chest to feel tight. Changing my diet has helped with this. I never had any form of heartburn or acid related problems prior to the cancer so I suspect the Chemo is having a lasting effect on my stomach and its acid production.

                          My immunity is no where near what it was pre-chemo still. I try to exercise as I once did and guaranteed I will get a cold or infection the next day. I have had to dial back my fitness to every second day and probably at 50% intensity to before. This has been the most frustrating problem for me given my athletic background. I really hope this will gradually return.

                          Of course my mind is susceptible to thinking every little ache or issue is the cancer returning, as it is with anyone going through cancer treatment. Keeping busy and prayer (for the religious among us) seem to be the best cure for this.

                          Comment


                          • #14
                            I went to the doctor because I had groin pain. It turned out to be a tight perineum; physio solved it. But they did an ultrasound, and found a reallllly tiny mass. Two years later on followup it had grown, so the doctor did a procedure where they took the testicle out, left it on a table, quickly evaluated the sample, and then were free to replace the testicle or remove it depending on results. Mine turned out to be early stage 1 seminoma, fully encapsulated, so they took it out.

                            Mine may have been earlier than yours, they recommended surveillance only. Am six years out and everything clean so far. But definitely grateful I had that groin pain. Given how slowly seminomas can grow, it's possible I still wouldn't have been aware of it to this day, and had a much later stage cancer by the time I eventually found out about it.

                            Good luck in your recovery!

                            Comment


                            • #15
                              Lostsaffa thank you so much for your detailed journal!

                              I was just diagnosed with stage IB with two high risk factors (30% relapse expectancy), still evaluating the two options *active surveillance or adiuv chemio* and reports like your are gold to me!

                              May I ask you if you underwent 1 cycle of carboplatin "AUC7"?
                              because my doctor told me that it reduces the relapse expectancy to just half (15% in my case) while you wrote to "2%" (!)
                              40yo - Italy
                              Last 20 years: acute ache in the right testis when touched Jul/7/16: 16x13x18mm hypoechoic mass
                              2018: hard and enlarged (1.5x)
                              Mar/29/19: all hypoechoic on ultrasonography
                              Mar/30/19: HCG 13.8 (ref: 0.00-2.00), LDH 374 (220-600), AFP <1 (<6.7)
                              Apr/11/19: CT clear (video: https://youtu.be/ALEC4PHTCzs)
                              Apr/12/19: HCG 4 (different lab), LDH and AFP normal too
                              Apr/16/19: Inguinal orchiectomy. Stage 1B (pT2, size 6cm, extended to rete testis, tunica albuginea, with focal peritumoral vascolar invasion)
                              Apr/19/19: HCG 0.8, LDH 324, AFP <1
                              Apr/23/19: HCG <0.1, LDH 286, AFP <1
                              Apr/30/19: HCG <0.1, LDH 269, AFP <1

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