Announcement

Announcement Module
Collapse
No announcement yet.

My TC Story

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

  • My TC Story

    Hello guys,

    Thank you all for all the great work&advices you are doing giving here.

    I would like to tell you my story . I`m 30 years old and I live in Romania.

    On 7th of November 2018 I've been told that I have TC. Four days later I had my right testicle removed (right I/O).

    I had medical examinations such as:

    MRI with contrast substance - ALL CLEAR, no metastasis, no vascular invasion.

    Xray chest scan - all clear.

    Tumoral markers - values ok.

    My pathologic report:
    Tumor

    Measurements: 4 x 3 x 2.5 cm
    Tumoral mass well delimited, no extracapsular extension.
    Testicular Parenchima: Normal

    Spermatic cord length 5 cm

    Conclusion: Seminoma, pT1Nx.

    I talked with my urologist and oncologist and they both said that most probably I am cured and they will keep me under surveillance (scans every 6 months for 2 years, every year after). Even so... I am very anxious, being afraid of TC Relapse.


    I went to a clinical examination 3 months after surgery and my urologist told me that everything is ok till now.

    I am very scared and anxious because I ll have my 6 month MRI Scan... I m afraid of relapse. When I am anxious ... I have different pains in my body... wrists, eardrum aches, muscles aches in different parts of my body etc.

    Have you had problems with anxiety? How did you get over this TC ?

    Thank you and all the best,
    Louis
    11/7/2018 - You have TC
    11/13/2018 - Right I/O
    Pathology report : pT1Nx Pure Seminoma
    MRI with contrast - All clear
    Surveillance

  • #2
    Hello Louis, sorry to wellcome here. I'm in very similar situation, virtually has same thing in the same stage. As I red Romania has relatively small TC rate, and, as it is in eastern Europe, I suspect that doctors have some degree of inexperience of treating the CT. As well as some degree of disinterest. Yep, you are most probably cured, it is normal to worry about the relapse, but even it the case of relapse (which is small), you can ne successfully treated with near 100% chance to be cured. About the different pains when you are anxious...well, you said, it is probablly because you are anxious. Ease up a little. Also, your best option is to learn as much as you can about your disease, treatment, best surveillance options and to perform additional checking beside public health procedures when ever you feel you need.
    45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
    Waiting...

    Comment


    • #3
      Some guys have a bigger problem with anxiety than others. I believed the statistics, & never doubted that I was fully cured. Others stress over every exam. We are all different, but confidence tends to build with longer times without relapse. Seems to the main way most folks deal with the anxiety.

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

      Comment


      • #4
        Thank you for the kind advices guys!!

        I forgot to say that my first urologist diagnosed me with epididymitis and I had a 3 week antibiotics treatment. Due to this treatment I got the irritable bowel syndrome with all kind of reactions in my body and my brain was/is associating this reactions/pains with a possible relapse... even if the first abdomen+pelvis scan was clear.
        Fortunetly or unfortunetly for me... I asked for a second opionion and it turned out to be testicular cancer- stage 1 seminoma.

        @Harxxony : I was lucky with my second urologist. A doctor who graduated in France. He told me from the ultrasound scan that 99% is pure seminoma and it hasn`t spread in the body. After the MRI... it was like him. But you are right, the TC rate is relatively small in the Eastern Europe and lots of doctors look disinterested. It hasn`t been my case...
        Now I`m struggling to get over anxiety more than after TC..... by the way , what part of Eastern Europe are you from?

        @Dave I`m sure that confidence will come up with longer times without relapse. I struggle to stay positive
        11/7/2018 - You have TC
        11/13/2018 - Right I/O
        Pathology report : pT1Nx Pure Seminoma
        MRI with contrast - All clear
        Surveillance

        Comment


        • #5
          Alltough I had generaly positive experience with my TC treatment, I just don't trust docs much. So far I have been hearing tons of stupidites from them, it is obvious that they don't have enough experience, plus some of them are real amateurs. I briefly calculated urologists:TC ratio, there are problably 350 urologists in the country just in public health service, and there are less then 200 TC cases annualy. So i figuered that I must learn everything about this disease and treatment. Did you get full surveillance protocol there? I see that you are getting MRI, it is probably common in Europe, in US they prefer CT scaning. Is it MRI just for abdomen, or abdomen&pelvis? What about chest X-rays, hormon levels, US for remaining testicle...?
          Last edited by Harxxony; 04-17-19, 03:26 AM.
          45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
          Waiting...

          Comment


          • #6
            Hi Harxxony,
            I have the following surveillance protocol:
            - every 6 moths MRI for abdomen&pelvis in year 1 and 2;
            - also 2 Chest x ray scans per year;
            - some blood test 2 times in the 1 st year.
            What is the surveillance protocol in Croatia?
            By the way... rete testis invasion is similar with testicular parenchima??
            11/7/2018 - You have TC
            11/13/2018 - Right I/O
            Pathology report : pT1Nx Pure Seminoma
            MRI with contrast - All clear
            Surveillance

            Comment


            • #7
              Hello.
              That's the issue, I didn't get any surveillance protocol, all what they do is do give me only what I have to do next. First MRI was 4 months after I/O, next one will be 7 months after first one, not sure is it abdomen&pelvis or just abdomen. I mean they wrote that they did both A&P, but it felt just for abdomen area. No one said anything about chest Xrays. About blood markers they do it every 3-4 months, but what's the point if they were normal even before I/O? They are such a bureaucrats. I see you didn't mention US for other testicle, that is so typical, it is because your oncologist cares only for existing TC and he is not interested for a possibility of another one. You should ask them for US for other testicle 2xYear. If not him, then your primary care doctor.
              About rete testis invasion and testicular parenchima, rete testis is a specific part of the testis between parenchyma and epidydimis, and parenchyma is just body of testis.
              45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
              Waiting...

              Comment


              • #8
                Hello.
                That's the issue, I didn't get any surveillance protocol, all what they do is do give me only what I have to do next. First MRI was 4 months after I/O, next one will be 7 months after first one, not sure is it abdomen&pelvis or just abdomen. I mean they wrote that they did both A&P, but it felt just for abdomen area. No one said anything about chest Xrays. About blood markers they do it every 3-4 months, but what's the point if they were normal even before I/O? They are such a bureaucrats. I see you didn't mention US for other testicle, that is so typical, it is because your oncologist cares only for existing TC and he is not interested for a possibility of another one. You should ask them for US for other testicle 2xYear. If not him, then your primary care doctor.
                About rete testis invasion and testicular parenchima, rete testis is a specific part of the testis between parenchyma and epidydimis, and parenchyma is just body of testis.
                45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                Waiting...

                Comment


                • #9
                  Yes, i don’t understand the blood tests also. Like you said, there were ok even before I/O. Concerning US for the other testicle, my urologist told me to do it once a year, but it s not being part of the surveillance protocol.
                  I asked you about rete testis because everyone is speaking about it, but i cannot find it in my patthologic report. It is written only about testicular parenchima. I had also a MRI before surgery and it was written “tumor well delimited with no extracapsular invasion”. Hope that is a good think for no relapses.
                  11/7/2018 - You have TC
                  11/13/2018 - Right I/O
                  Pathology report : pT1Nx Pure Seminoma
                  MRI with contrast - All clear
                  Surveillance

                  Comment


                  • #10
                    From what I could find on Internet I am following the most common European plan of surveillance for TCs.
                    11/7/2018 - You have TC
                    11/13/2018 - Right I/O
                    Pathology report : pT1Nx Pure Seminoma
                    MRI with contrast - All clear
                    Surveillance

                    Comment


                    • #11
                      DId they do MRI for testicles in your case? I don't think that they can see microscopic changes in the testicle by using MRI, why whould they have to do I/O and pathology anyway. MRI was for the possibility of tumor spreading to nodes in the retroperythoneal area, and it was all clear. It's looks like your pathologist was also some dude that don't follows up to date reporting, he should mentioned rete testis invasion, limphovascular invasion etc. But he wrote T1 staging , and that should be enough for you to ease your mind.
                      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                      Waiting...

                      Comment


                      • #12
                        Originally posted by Harxxony View Post
                        DId they do MRI for testicles in your case? I don't think that they can see microscopic changes in the testicle by using MRI, why whould they have to do I/O and pathology anyway. MRI was for the possibility of tumor spreading to nodes in the retroperythoneal area, and it was all clear. It's looks like your pathologist was also some dude that don't follows up to date reporting, he should mentioned rete testis invasion, limphovascular invasion etc. But he wrote T1 staging , and that should be enough for you to ease your mind.
                        Yes, the MRI was done to see if the tumor has spread ...
                        11/7/2018 - You have TC
                        11/13/2018 - Right I/O
                        Pathology report : pT1Nx Pure Seminoma
                        MRI with contrast - All clear
                        Surveillance

                        Comment


                        • #13
                          Originally posted by Davepet View Post
                          Some guys have a bigger problem with anxiety than others. I believed the statistics, & never doubted that I was fully cured. Others stress over every exam. We are all different, but confidence tends to build with longer times without relapse. Seems to the main way most folks deal with the anxiety.

                          Dave
                          Dave,
                          Do you know what "no extracapsular extension" means? It means that the tumor is T1a? In my path report is only written pT1Nx.
                          11/7/2018 - You have TC
                          11/13/2018 - Right I/O
                          Pathology report : pT1Nx Pure Seminoma
                          MRI with contrast - All clear
                          Surveillance

                          Comment


                          • #14
                            LouisFCP and all, I highly recommend you discuss with your doctors following the surveillance schedule recommending in Table 4 here https://ascopubs.org/doi/full/10.1200/JCO.2014.56.2116. Some of the world's leading testicular oncologists recommend this schedule.

                            Comment


                            • #15
                              `Do you know what "no extracapsular extension" means? It means that the tumor is T1a? In my path report is only written pT1Nx.`
                              https://www.cancer.net/cancer-types/...-cancer/stages

                              The `a` would indicate the size of the tumor. Please see above to see what they they mean with pT1. Another fantastic resource to read recommended by the world's leading testicular oncologists is http://thetcrc.org/staging.html and the rest of that site.

                              Anxiety is definitely normal in our situation but mental health professionals can help significantly. I found especially helpful to have a therapist that is experienced with cancer survivors and/or cancer him or herself.
                              Last edited by MidwesternCoder; 05-16-19, 12:30 PM.

                              Comment

                              Working...
                              X