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New here... And here is my story (So far...)

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  • New here... And here is my story (So far...)

    Good Morning, Afternoon, Evening, Whatever time of day it is where you are...

    Anyways, where to begin?

    I have been reading this forum for the past few years; anonymously, I may add. I would always find myself reading this forum, as I have always been very anxious about lumps and bumps that I have found down there. Half the time, I would end up booking a visit to the GP to have an ultrasound arranged. (I think I have had three of these so far...)

    The first two ultrasounds were clear, with nothing out of the ordinary on them. Great news right? The first scan I went in as I felt a soft lump, attached to the bottom of my right testicle. Being young (~15 years old) and not having a great deal of knowledge on the subject, I wanted this checked immediately, to find out that this was nothing more than a 'nice' benign, fluid filled cyst. I went for the second Ultrasound scan, on the same testicle in February last year (2016 / aged 20) as I had found a small (Grain of rice sized,) hard lump located in/on/near my epididymis. Ultrasound did not pick anything up, or show anything out of the ordinary. Time to relax right? – I am being overly anxious, surely.

    Fast-forward to May this year (2017) I had noticed that the same lump I had scanned back in February 2016 has grown ever so slightly (Still tiny, about the size of an airsoft BB / Small pea) What did I do? – I left it, as I thought once again; I was probably being overly anxious and did not want to feel like I am wasting everyone’s time. I kept on top of Self-examinations, and noticed that the lump only felt partially attached to the testicle, it kind of felt like it was on the epididymis more than it did on the testicle. I told myself that it was probably just a cyst. My closest friend had told me that he also has a rock solid lump, similar to what I have described. Everything is fine, I told myself. I then left this for another 4 months, until September. In September, I thought to myself “You know what Ash, It might be nothing, but I would still like to know what this lump is, as I still haven’t been told…” I had booked myself an appointment with my GP, to have a referral to my third Ultrasound scan.

    On the day of my third ultrasound, I was not nervous, not once did the thought of anything bad cross my mind. I went in with a clean mind, to find out what this lump was. Halfway through the scan, I noticed that the radiologist was taking many screenshots, that is when it hit me, and I knew something was not right. After he had completed the scan, the look of negativity on his face told me all I needed to know. He told me “It’s either an Infection, or a tumor” – “Oh crap!” I thought to myself. Then my hopefulness took over, I was telling myself; it is just an infection. I moved forwards with that thought process. The following day, I had a phone call from my GP telling me that I have been referred to have an appointment with the urologist.

    On the day of the appointment with the urologist I had learnt that I have testicular cancer; well, the urologist is 80% sure that I do. The tumor is about 1 centimeter in size, and is intratesticular (Meaning inside the testicle) this is where I got confused. Do I really have an intratesticular lump? So to clear any confusion, I had the urologist check my testicle again, explaining the location of the lump I wanted checking out, and then said, that one is just a cyst. So now, I am confused… Is there another lump that I cannot for the life of me, find?

    Moving forwards, I had a blood test for tumor markers and learned the following:
    AFP: 7
    bHGC: <1
    LDH: 283

    From my understanding, the only true elevation here is LDH. Nevertheless, after further research, you can still have Testicular cancer, and show normal tumor markers. Therefore, I am not entirely sure what these numbers mean for me.

    Had my CT scan on the 26th October 2017, and my Right Radical Orchiectomy on the 27th October 2017.

    I am currently in recovery of my Orchiectomy, and am taking things very easy. I do not have any emotional distress, which is a good thing. I am not sure how to feel for now. It is all a waiting game. Parts of me still does not think it is anything.

    My reasoning to post this is for others. Honestly, if there is anything, you are unsure on; get it checked out! Regardless of what you do or do not read on the internet. The only person that can tell you the good and the bad are the people at the hospital. That is their job!

    I would also like to thank everyone on this forum. You have all been supportive, Even though I may not have contacted any of you. It just nice to have something that is reassuring to read. I would be a wreck if this forum were not here. As there is nowhere else that has real people, sharing their personal experiences.

    I will be sure to post further updates. Thank you for reading my ‘Essay’.

    Ash

  • #2
    Hi Ash,

    Thank you for your post and I obviously wish it was under different circumstances. I applaud you for going in and getting things checked out. It is not an easy thing to do and with two prior negative checks I can assume that it took even more to go in the third time but it was well worth it since they did find something. I encourage guys to go in and if there is a negative finding then at least they have peace of mind and you are a perfect example of doing just that.

    Please keep us posted on the pathology report and your CT results as we are here to help you along the way.

    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

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    • #3
      An update...

      A week or two after my operation (Right IO) I had left to go on a short get away. During my short get away, there was not a day that would go by where I was not curious about my results/pathology report.

      Therefore, I phoned, and phoned the Urology department at my hospital, chasing them for the report. I was not having much luck, as there never seemed to be anyone the other side of the phone. No one would answer! - Subconsciously, I felt as though they were teasing me, or had my number on a list of numbers to ignore... However, that is just stupid to think; isn't it? Eventually, I did get through to someone in the end. Moreover, she explained to me that she did not have visibility of the report, and that I would need to have the Urology nurse read the report to me. I was to 'wait for a call back.' At this point, the next 2 hours of waiting felt like an eternity. Nevertheless, as promised, I got the call back.

      The news, which is good news was that I had a Leydig Cell Tumor <1.1cm. As discussed on the phone, the nurse had mentioned that many of the Leydig Cell Tumors the Urology department have seen at this size have all been benign. Then told me that 90% of Leydig Cell Tumors are benign. – I have read this fact many times on the internet! additionally, I was told my CT scan was clear (other than the 2mm 'scar tissue' they have found on one of my lungs) as the nurse stated, that is of no concern in this instance. So what is next? My urologist had sent a request for a second opinion to Oxford Hospital, ‘Just to make sure…’ about a week later; I had a letter through the post highlighting a date for an appointment with the Oncologist to discuss ‘Treatment.’ This had me worrying. An appointment with an oncologist? – For something I was told is a benign lump? Have I been lied to? These were just thoughts I had circling my head. As this is certainly not a situation that I am familiar with.


      Fast-forward 20/11/2017 – I had my Oncology appointment. Oxford Hospital had confirmed in more or less the same words, the above. “It’s a Leydig Cell Tumor” and that I “Don’t really need to worry about it…” However, they would still like to monitor me for the next year. As the professor mentioned, Leydig Cell Tumors are quite difficult to differentiate (Malignant and Benign) but on the grand scale of things, I am closer to the benign side than I am to the malignant side.

      Scheduled from this point on:
      Appointment with my urologist in January - Probably to check up on how I am doing and whether any adjustments are required.
      March - CT scan at Oxford Hospital.

      As of now, the news has been ‘good’ and it has most definitely been quite a journey. I will remain to keep my positive outlook on life, and I would like to encourage other readers to do so.


      ​Ash

      Comment


      • #4
        Thanks for the update! Sounds like things are looking OK. Hopefully this is the end of your story besides checkups!
        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 - 9/18/15: 4xEP
        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!
        9/18/2017 all clears up to this date!

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