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Orchiectomy tomorrow after a 4 month journey so far - hoping for good news..

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  • Orchiectomy tomorrow after a 4 month journey so far - hoping for good news..

    Hi! I'm new on here.. just sharing my experience as I'm sure others are/will be going through similar stresses;

    Am finally going for surgery tomorrow (initial frozen section partial +/- radical orch) after a long journey from first presenting to my GP. Am usually very chilled but the process has been a bit messy so far and my anxiety levels have hit the roof recently.

    Here's my story so far (I'm a 28 year old based in the UK):

    September 2019: Noticed small lump in left testis. Didn't do anything straight away stupidly..
    October 2019: Went to my GP who initially tried to reassure but did book non urgent ultrasound
    Late November 2019: Ultrasound shows small hyperechoic mass (only 3mm) in left testis
    December 2019: Return to GP who sends tumour markers, repeats ultrasound (4mm lump, reported as being in right testis this time?!)
    Tumour markers show AFP slightly raised at 12, HCG and LDH at top of normal range
    Early January 2020: Seen in urology clinic, clarified mass is on left.., listed for partial orchiectomy frozen section to proceed to radical if needed. Sent for sperm banking.
    Surgery booked for 3 weeks after clinic for the 21st Jan but then cancelled for another patient's urgent case... not great for my nerves unfortunately
    February 2020: Eventually re-booked for theatre on 10th Feb

    I can feel that the lump has increased somewhat in size over this time, which has made me really anxious since it was initially very small indeed.

    Few things that I wonder if anyone here has any advice with as it will still be a few weeks wait for news after the op:

    1) The midly raised AFP has been a concern for me; it's only 12 (normal range 0-7), but I haven't really heard of any 'false positive' readings so presume this means TC with a non-seminoma component will be almost certainly the diagnosis.

    2) The waiting times so far - almost 4 weeks from GP referral to clinic review (despite a supposed 2 week wait rule); and a further 5 week wait from urology clinic to orchiectomy date

    3) The plan for partial orch/frozen section - I get that this is an option for small lesions, but with my abnormal tumour markers I think the only reason they are doing this is nervousness regarding which side the problem is on due to the dodgy ultrasound report. Anyone else heard of this being done with mass and abnormal markers?

    Thanks for hearing me out!

    Ed

  • #2
    Here's what the Testicular Cancer resource Center dictionary has to say about AFP:
    Alpha-fetoprotein - AFP is a protein found in the bloodstream of some men with nonseminomatous testicular cancer (It is NEVER present in seminoma patients). The level rises when the cancer is growing and falls when the cancer is shrinking or has been surgically removed, so a blood test can possibly measure the progress of the disease and success of treatment. Because of this behavior, it is referred to as a tumor marker. Elevated levels of AFP occur in 75 per cent of patients with teratocarcinoma, embryonal cell carcinoma, and yolk sac carcinoma. (However, increased levels of AFP are also found in patients with liver diseases, such as cirrhosis, acute and chronic hepatitis and hepatic necrosis. ) The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.
    So based on this while your AFP is elevated, it is not elevated enough to assume anything at this point.

    Your waiting times seem unfortunate, but not out of line with what others in the UK have reported here. The good news is hat thus is a highly curable cancer, so the delay will not likely affect your outcome.

    Frozen section is sometimes done when you are down to one testicle, in the hopes that an I/O might be avoided, however I can't recall anyone reporting they didn't end up with a full I/O when it was all said & done. I would refuse a partial I/O' if offered, get the traitor out, it is trying to kill you, after all, don't give it a second chance. You should expect to wake up missing a testicle.

    I have some concern about the left/right confusion on the U/S That should not happen EVER. Somebody screwed up. That said, you know where the lump is, so probably safe to go with that. I would guess that there was a transcription error on the Dec U/S. It would really suck to get that one wrong, though.

    Good luck tomorrow & please be sure to let us know how it all turns out. The surgery isn't all that bad, you'll be a bit sore for a while, some find ice helps, I tried it but can't recall if it helped, but honestly losing a nut isn't as bad as it sounds.
    Last edited by Davepet; 02-09-20, 07:00 PM.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #3
      Losing a nut is nothing too horrible at all. Peace of mind is worth it.

      I must say things are moving exceptionally slow for you, that must be difficult mentally. Be an advocate for yourself, sometimes patients get lost in the shuffle and they have to push for their own health.

      Hope the surgery went well, it's not that bad honestly. Second and third day can be a bit painful but it's not bad. Nothing compared to the mental drain you've had in this process.

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      • #4
        Thanks both!

        Surgery did go ahead although things changed again on the day. The confusion over imaging was clarified - that there were two lumps (one in each testis). The one I had felt on the left was identified as a calcified hydatid of morgagni which was completely benign and did not need operating on.
        The other mass (incidental) on the right was what they were more concerned about so they did a partial orchiectomy and the frozen section showed a leydig cell tumour.

        Will see them in a month or so once I've recovered and the histology is back in full but this seems like very good news as I understand that the vast majority of leydig tumours are benign. Still doesnt explain the AFP but seems that may just be my regular baseline level (crossing my fingers there's no germ cell tumour mixed in with the histology).

        Pain wise I'm doing ok actually, just pottering about a bit gingerly at home. Right testicle looks a lovely purple colour but I guess thats not surprising given the abuse it's taken..

        Ed

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        • #5
          Good to hear that it was a leydig cell tumor, as mentioned, the majority are benign. Hopefully, the pathology will return not path factors that would identify as otherwise. At 3-4 mm it was incredibly small so that is great too. The AFP of 12 may very well be your baseline but perhaps they could check it down the road just to be sure.

          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 mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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