Hello everyone, my name is Fabio!

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  • Fabio
    Registered User
    • Mar 2023
    • 5

    Hello everyone, my name is Fabio!

    I’m happy to join such wonderful community, I have been following these forums for the past two weeks and I have to say, you have been a blessing in these cursed times. These pasts weeks have been chaotic and difficult, nevertheless, the accumulated knowledge in this forum from my fellow brothers and their families have been invaluable to me in facing this horrendous monster, without any additional delay here is my story!! I hope it may be useful and bring some sense of comfort for future readers as it was for me when I read fellow brother’s stories.

    As stated before my name is Fabio and I am 34 years old, currently I live in Italy and I’m PhD student. My memory can be a bit blurry about the first time I noticed something different in my left testicle, I think it may go as far as 1 month ago, maybe more, I am not sure anymore. At the time, I handled it as I handle most of my health issues, I told to myself “okay, something is weird down there… if it doesn’t disappear in two or three days I will go to the medic”. Oh boy I was sloppy, I didn’t put any alarm or reminder as I usually do and my day-to-day life is very fast paced that doesn’t let you stop for a moment to take a breath and think peacefully, thus, the two or three days I told myself for a next self-check slipped through my hands like water. Forward 2 weeks later, when I was doing some biking, I noticed my left testicle started to hurt a bit and since I had already forgotten about what I told myself earlier I attributed it to a bad position while cycling, big mistake I know!! -- Finally, I started to notice a little pain here and there until one day while trekking I said enough is enough, I need to get checked, so around this time I started to lurk this forum once I found out that a hard testicle is associated with testicular cancer. I had never in my life been given information about how a testicular cancer feels or how I should check myself regularly I didn’t even know such cancer existed!! Which is why when I noticed something is wrong, I try to go to the doctor as soon as possible.

    This was three weeks ago more or less, when I felt the pain on my trekking trip, the following week I went to my university’s clinic, where this lady received me. I told her that my left testicle was hard and that it hurts. She said that it is an emergency and you should get checked. I went to the ER, and I told them that my university’s clinic told me to get checked as it might be an emergency and I told them about the hard testicle and pain. Sometime later they admitted me for an ultrasound in which they evaluated my two testicles, the technician explained to me that I had a mass on my left testicle and showed me the differences between both testicles one was clean white and the other had white plus some black mass there. Then, she proceeds to remit me to the hospital urologist which is based in the other side of the town, so I started moving there. That same day in the afternoon I reached the hospital and I spoke with the urologist which did another ultrasound, he made a bad face and said we need to do surgery, at which point I asked him directly if it was cancer and his response was “probably yes”. He is a young doctor and later I believe he reported to his supervisor and then the supervisor told him to tell me to sit me down and explain to me what was about to happen. The funny part is I already knew, I had been researching the whole past week about testicular cancer in this forum reading fellow brother’s stories. I knew about the different types of cancer, orchiectomy, CT Scan, blood tests, tumor markers, RPLND, chemotherapy with 3xBEP or 4xEP, etc.

    My personal view about this whole situation is you have to do what you have to do or you die, there is no more options and the biggest weight on my balance is living so it is an easy choice, there’s no need to think about it. So when my doctor said “Do you understand what is about to happen?” I was like, “Doc, do what you have to do, when is the surgery?” Then, he was very kind. I have to admit they did everything they could do to save my testicle, because he proceeds to tell me “We will do the surgery, once the testicle is out we will take a small piece of the mass and we will do a fast biopsy, since you will be in the surgery room it will come fast, around 15-20 mins, if we confirm it is a tumor (cancer) then we will remove your whole testicle if it is not we will put it back” which gave a different shade of color, I had already made my peace of mind with the orchiectomy but he was somehow telling me there was a small chance of not being cancer. It ended up being cancer, which is why I am here, but I am saying this to other people know my story.

    That day the doctor emits the order for blood tests to check my LDH, bHGC and AFP also he sent me to do the sperm exam. Next day I spend the whole day doing bureaucracy to get my exams, additionally they told me they do not do the sperm exam. Finally, when I did the exams on the following day, I was informed the results would take between 7-10 days which for me at this point was unacceptable as I was starting to worry about it spreading. Trying to take the matter on my own hands I went to the ER explaining the situation and that I wanted to get a CT Scan of my chest and pelvic area, the doctor told me it wasn’t possible without an official order, nevertheless, she was very kind and told me what she can do is to do the blood tests and I would get the results on the same day, my eyes opened with surprise and joy and I happily accepted. When the results came, another doctor called me in with a very concerned face, which of course scared me, at this point he tells me “In my opinion it is on Stage I, nevertheless you have to go and talk with your urologist”. He signs the exams and give them to me. I can finally read the tumor markers: LDH (152/248) U/I, bHCG 5.0 mUI/ml, AFP (15.9 / 0 - 10) ng/ml. At this point is when I discovered I have a non-seminoma tumor according to what I have read on the forums, then I started to research more about what markers are associated to which tumor type.

    I go to see my urologist and he said my tumor markers are high but not “that high”, he then schedules the surgery for 09/03/2023, I will be admitted one day before to do blood tests and a general exam to check I’m healthy enough for the surgery. At the hospital I was assigned to a room with another three senior patients they were very kind with whom I exchanged stories and we had good times. I was instructed to do not eat or drink anything after midnight. The day of the surgery came, and I was admitted to the preparation room, and they let me know I was going to be put on local anesthesia which is the spinal anesthesia, the one they put on your lower back to numb your lower body, from the whole process this was the only part I was a bit scared. Once anesthesia is given, they separate your upper and lower body with a hospital fabric to block your vision, you start to feel your feet a bit hot and then a bit cold, I kept moving my fingers a bit, the experience of being paralyzed is scary and interesting, I also noticed they started putting betadine on me but I had still sense on my feet and I was telling to myself in my mind “Bro, I still feel my feet do not cut me yet!!” and well… they started, to my surprise if you start to feel your feet numb it means, long ago your hips and thighs were numb, so when they cut I felt a bit of discomfort but not as much pain as I thought I would have, another interesting thing is that as time goes the anesthesia settles in, so the longer we were in the surgery the less I felt, at some point though I was feeling very high discomfort but nothing that was not tolerable, I mean it is understandable they were cutting me open. At some point we were waiting for the biopsy, so since there was nothing to do, they started chatting. I was visualizing it in my mind, that my testicle was out in the open and just hanging in there to decide its fate, waiting on the answer from the biopsy, 30 minutes later they called to the department doing the biopsy and funnily enough it was on speaker so I could hear everything, and they confirmed it was teratoma. The guy approached to me and asked me if I have heard, I said yes that it is teratoma, so he said we will cut it now, “I was like yeah, no worries”. At that point I was thinking about the type of tumor, teratoma is known to be highly resistant if not immune to chemotherapy and radiation, but the good news is once it is removed surgically you are good to go. Nevertheless, it is still a biopsy, and we need to wait for the results of pathology which will come in about 15 days.​

    The pain post-surgery was 7/10 I would say, I have suffered from kidney stones in the past and the pain from those is a bit higher I think, so for the most part even if I was in pain, it was tolerable. Anyways, later that day a nurse gave me pain-killers which took a while to settle in. I didn’t sleep that night, and next day early in the morning they came to do a blood test. The surgery was on Thursday and the doctor instructed me I was going to be in the hospital until Monday, each day I was feeling better, I mean the day of the surgery I was scared to stand up to go to pee, while by Monday I was able to walk normally, slowly but normally.



    25/02/2023 – Pain and lump found on left testicle
    28/02/2023 – Ultrasound found malignant mass
    01/03/2023Blood Test: LDH: 152, bHCG: 5.0, AFP: 15.9
    08/03/2023 – Orchiectomy
    09/03/2023Post-surgery Blood test: LDH: Unknown, bHCG: 2.8, AFP: 10.8
    16/03/2023CT Scan: CLEAR
    20/03/2023Blood tests: LDH: 340, bHCG: 0.5, AFP: 4.1
    03/04/2023Pathology results: 95% Teratoma, 5% Embryonal Carcinoma. No Vascular Invasion, No Tunica Albuginea Invasion. Tumor size 2cm
    10/05/2023 - Blood test 1st control: LDH: 195, bHCG: 0.7, AFP: 2.4

    Stage: pT1a

    On Surveillance.

  • Fabio
    Registered User
    • Mar 2023
    • 5

    #2
    The medical team checks on the patients once a day and the nurses a couple of times during the day, on Monday the lead doctor told me that I was ready to be released from the hospital and that we will be doing the CT Scans next thrusday, also we will need to wait for the pathology results to decide which kind of therapy I will undergo. I asked if we could do some blood tests on the day I receive the pathology results and he responded me that we do not need it as your bHCG is normal (my bHCG pre-surgery was 5.0), post-surgery it was less than 5 I think, I will explain later why I think it is like that. I replied the doctor saying that while that might be true my AFP was 15.9, he looked at me skeptical and reviewed my clinical history and then said that we will do another blood test.
    The last person I spoke to told me to take antibiotics (unixme 400mg) for six days and solvix for 15 days, then I proceed to ask the guy about my tumor markers and he said that bHGC was normal (2.8) and then I asked for my AFP and he said it was something like 10.8. So, at the end of the day both markers are going down post-surgery which I think for now it is a good sign, I need to wait for the follow up blood test on 20/03/2023.

    This my story until now!


    tl/dr version:
    • Left testicle lump pain around 25/03/2023
    • Ultrasound on 28/03/2023
    • 01/03/2023 – Blood Test :
    LDH (152 / 248) U/I,
    bHCG 5.0 mUI/ml,
    AFP (15.9 / 0 - 10) ng/ml
    • 07/03/2023 – Hospitalized preparing for Orchioectomy
    • 08/03/2023 – Orchiectomy
    • 09/03/2023 – Post-surgery Blood test: LDH unknown / bHCG 2.8 / AFP 10.8
    • 16/03/2023 – CT Scan, Waiting for results
    • 20/03/2023 – Blood tests scheduled
    • 28/03/2023 – Pathology results expected on this date
    25/02/2023 – Pain and lump found on left testicle
    28/02/2023 – Ultrasound found malignant mass
    01/03/2023Blood Test: LDH: 152, bHCG: 5.0, AFP: 15.9
    08/03/2023 – Orchiectomy
    09/03/2023Post-surgery Blood test: LDH: Unknown, bHCG: 2.8, AFP: 10.8
    16/03/2023CT Scan: CLEAR
    20/03/2023Blood tests: LDH: 340, bHCG: 0.5, AFP: 4.1
    03/04/2023Pathology results: 95% Teratoma, 5% Embryonal Carcinoma. No Vascular Invasion, No Tunica Albuginea Invasion. Tumor size 2cm
    10/05/2023 - Blood test 1st control: LDH: 195, bHCG: 0.7, AFP: 2.4

    Stage: pT1a

    On Surveillance.

    Comment

    • Mike
      Administrator
      • Apr 2008
      • 973

      #3
      Hi Fabio,

      Thanks for sharing your story and glad to hear that you are getting along well. Have you gotten your CT scan results and final pathology back yet?

      There are some great TC doctors in Italy, if you ever need them, and our friends at the TCRC keep a list of them at: http://thetcrc.org/experts.html the team in Milano is great and I have read many of their papers.

      Keep us posted.

      Mike
      Oct. 2005 felt lump but waited over 7 months.
      06.15.06 "You have Cancer"
      06.26.06 Left I/O
      06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
      06.30.06 It's Official - Stage I Seminoma
      Surveillance...
      Founded the Testicular Cancer Society
      6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

      For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.

      Comment

      • Fabio
        Registered User
        • Mar 2023
        • 5

        #4
        Hello Mike!

        Thank you for your reply, I really appreciate it.

        I didn't know about the TC Oncology Doctor list, good to know there are skilled clinicians nearby!

        On the other hand, today 11/03/2023 I received my results back.

        These are the results:

        LDH: 340
        bHCG: 0.5
        AFP: 4.1

        CT Scan: Clear
        Pathology: No Vascular Invasion, No Tunica Albuginea Invasion
        Tumor Type: 95% Teratoma, 5% Embryonal Carcinoma.
        Tumor Size: 2cm

        For the type of tumor they didn't give exact numbers, only 5% Embryonal Carcinoma, and the tumor type they have found in the biopsy they did during my orchiectomy was Teratoma. Therefore, according to what I have read in papers and in this forum, my tumor markers lead me to believe the tumor was composed of 95% Teratoma and 5% Embryonal Carcinoma.

        Staging: pT1a

        The doctor's judgement was a neoplasia of low risk. Thus, we will go for surveillance.

        I will get my blood markers tested in one month and another CT Scan probably on June (3 months after the last CT Scan).

        Also I would like to ask a question if anyone knows anything about it, they actually did another test which was for Embryonal Carcinoma.

        Embryonal Carcinoma Antigen, I got 1.6 ng/mL. Normal is up to 5.0 just like bHCG. Any ideas?

        I will update as soon as I have more information.

        Lastly, I already have my scar tissue more or less sealed and it does not hurt that much anymore, some itchy feeling more than anything, it's been more than 1 month since my orchiectomy, time flies!!

        Best regards,

        Fabio​
        25/02/2023 – Pain and lump found on left testicle
        28/02/2023 – Ultrasound found malignant mass
        01/03/2023Blood Test: LDH: 152, bHCG: 5.0, AFP: 15.9
        08/03/2023 – Orchiectomy
        09/03/2023Post-surgery Blood test: LDH: Unknown, bHCG: 2.8, AFP: 10.8
        16/03/2023CT Scan: CLEAR
        20/03/2023Blood tests: LDH: 340, bHCG: 0.5, AFP: 4.1
        03/04/2023Pathology results: 95% Teratoma, 5% Embryonal Carcinoma. No Vascular Invasion, No Tunica Albuginea Invasion. Tumor size 2cm
        10/05/2023 - Blood test 1st control: LDH: 195, bHCG: 0.7, AFP: 2.4

        Stage: pT1a

        On Surveillance.

        Comment

        • Mike
          Administrator
          • Apr 2008
          • 973

          #5
          Hi Fabio,

          I have never heard of ECA being used to monitor testicular cancer. For stage Ia nonseminoma, which is what I am assuming they told you that you have, active surveillance is a typical recommended treatment. Adjuvant chemotherapy, low dose of BEP x1 round could be used to help reduce the risks of relapse but given the 95% teratoma, which is not really affected by chemotherapy, I wouldn't even really consider it. As long as you make your scheduled check-ups then all should be good for you.

          Mike
          Oct. 2005 felt lump but waited over 7 months.
          06.15.06 "You have Cancer"
          06.26.06 Left I/O
          06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
          06.30.06 It's Official - Stage I Seminoma
          Surveillance...
          Founded the Testicular Cancer Society
          6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

          For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.

          Comment

          • Fabio
            Registered User
            • Mar 2023
            • 5

            #6
            Hello people!

            Just an update on how the things are going!

            I got my first blood test check and got in touch with the oncologist for a control and the results are as follows:

            01/03/2023 – Blood Test: LDH: 152, bHCG: 5.0, AFP: 15.9
            09/03/2023 – Post-surgery Blood test: LDH: Unknown, bHCG: 2.8, AFP: 10.8
            20/03/2023 – Blood tests: LDH: 340, bHCG: 0.5, AFP: 4.1
            10/05/2023 - Blood test 1st control: LDH: 195, bHCG: 0.7, AFP: 2.4

            Now, I have to look to get my first CT Scan and new blood work for my next control appointment in more or less 1 month. My oncologist also recommended to do an echography of my remaining testicle.

            I have felt so far no signs of low testosterone such as:
            • -Low energy
            • -Mood swings
            • -Lack of focus
            • -Low libido

            Those are the ones I remember at least.

            On a side note, I have been experiencing pain on my remaining testicle sporadically. I have not been paying too much attention for when it happens, but I believe is after sexual intercourse. For some reason I think it happens because my remaining testicle is over working to put back the sperm count? I do not know, what do you guys think?. Anyways this is an online journal for myself and for others so we can understand better this journey.

            Therefore, I throw the question back at you guys:
            Have you experienced pain on your remaining testicle after surgery?


            On a side note, I am going to do a full blood work test in which I will do also a testosterone test. I didn't have a testosterone check as a base before surgery, so this will be my first check and my base for future.

            What other blood tests do you guys recommend me to do?

            Thank you, until next time!

            Last edited by Fabio; 05-23-23, 05:06 PM.
            25/02/2023 – Pain and lump found on left testicle
            28/02/2023 – Ultrasound found malignant mass
            01/03/2023Blood Test: LDH: 152, bHCG: 5.0, AFP: 15.9
            08/03/2023 – Orchiectomy
            09/03/2023Post-surgery Blood test: LDH: Unknown, bHCG: 2.8, AFP: 10.8
            16/03/2023CT Scan: CLEAR
            20/03/2023Blood tests: LDH: 340, bHCG: 0.5, AFP: 4.1
            03/04/2023Pathology results: 95% Teratoma, 5% Embryonal Carcinoma. No Vascular Invasion, No Tunica Albuginea Invasion. Tumor size 2cm
            10/05/2023 - Blood test 1st control: LDH: 195, bHCG: 0.7, AFP: 2.4

            Stage: pT1a

            On Surveillance.

            Comment

            • Mike
              Administrator
              • Apr 2008
              • 973

              #7
              Hi Fabio,

              Great to hear that your bloodwork for your control was good. I don't think it is unreasonable to do an ultrasound of your remaining testicle. I used to do one yearly, just to be extra cautious. Glad to hear that they did baseline testosterone checks so that you have something to compare to as well. Otherwise, I don't really have any suggestions for other labs. It appears that you have things covered, from my experience.

              Mike
              Oct. 2005 felt lump but waited over 7 months.
              06.15.06 "You have Cancer"
              06.26.06 Left I/O
              06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
              06.30.06 It's Official - Stage I Seminoma
              Surveillance...
              Founded the Testicular Cancer Society
              6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

              For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.

              Comment

              • Fabio
                Registered User
                • Mar 2023
                • 5

                #8
                Hello everyone!

                I know it's been a while since the last time I posted. Life is wild you know!!!

                To the point:

                1) CT SCAN Clear
                2) Echography Clear

                Disclaimer: There was a nodule of around 1cm on my neck. The pathology stated that my testicular cancer was contained. The CT Scan did not show spread on abdomen or lungs, so the neck nodule of 1cm seems unlike to be carcinoma spread.

                I'm worried about the last Beta HCG jump from <1 to 2.3, from September -> October. I changed labs... because life. Later, I will go back to my usual lab and verify the results.

                I will post again once I have more information.

                Thank you again for this wonderful community.

                Best regards,

                Fabio



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                25/02/2023 – Pain and lump found on left testicle
                28/02/2023 – Ultrasound found malignant mass
                01/03/2023Blood Test: LDH: 152, bHCG: 5.0, AFP: 15.9
                08/03/2023 – Orchiectomy
                09/03/2023Post-surgery Blood test: LDH: Unknown, bHCG: 2.8, AFP: 10.8
                16/03/2023CT Scan: CLEAR
                20/03/2023Blood tests: LDH: 340, bHCG: 0.5, AFP: 4.1
                03/04/2023Pathology results: 95% Teratoma, 5% Embryonal Carcinoma. No Vascular Invasion, No Tunica Albuginea Invasion. Tumor size 2cm
                10/05/2023 - Blood test 1st control: LDH: 195, bHCG: 0.7, AFP: 2.4

                Stage: pT1a

                On Surveillance.

                Comment

                • Mike
                  Administrator
                  • Apr 2008
                  • 973

                  #9
                  The labs look good to me and I would have zero concerns for the slight change in beta-hCG.

                  Are they going to biopsy the neck nodule?

                  Mike
                  Oct. 2005 felt lump but waited over 7 months.
                  06.15.06 "You have Cancer"
                  06.26.06 Left I/O
                  06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                  06.30.06 It's Official - Stage I Seminoma
                  Surveillance...
                  Founded the Testicular Cancer Society
                  6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                  For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.

                  Comment

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