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Recently diagnosed with TC and received orchiectomy - moving forward.

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  • Recently diagnosed with TC and received orchiectomy - moving forward.

    Hi all,

    I joined this forum hoping to get advice and to hear others' experience with TC. I'm 28 years old and I was diagnosed a little over 4 weeks ago and had a radial orchiectomy to remove my right testicle 2 weeks ago. CT scans prior to the operation didn't show any abnormalities located in my chest, abdomen and lymph nodes - therefore it seems to have been localised to the right testicle. My hCg levels were at 18.8 but my alpha proteins remained normal (1.). The urologist told me prior to my surgery that I had caught it in its early stages and it was a matter of removing the cancer ASAP.

    A week after my operation, I received another blood test which showed that my hCg levels were still elevated? I was wondering if this is normal for hCg levels to remain elevated in my blood after 7 days? I also smoked some marijuana to assist with the pain as I was only prescribed paracetmol (France). I was wondering if this would cause a false positive in my hCg levels? Information on this matter seems to be sparce and doesn't seem to show any conclusive evidence?

    Otherwise I'm concerned that the cancer has gone into metastasis and is still lingering in my system?

    I have an appointment with my oncology team later this week to discuss my biopsy results and my treatment plan for chemotherapy. I'm hoping to get a clear idea of the direction I need to head and what I'm to expect. I'm worried about chemotherapy as my oldest brother also had TC (20 years ago). He had 16 cycles of chemotherapy and it was very detrimental to his body (i.e loss of hair, weight, nausea, fatigue etc.). Considering mine has been caught in its 'early stage', I'm hoping that chemotherapy has improved over the last 20 years and it isn't too tough on my body!

    I will update this post once I have my results

  • #2
    Hi Jono

    Sorry to hear you have become a member of our club but welcome all the same.

    Your biopsy results will tell the oncologist a lot about how to proceed. The type of germ cell it is will determine their action moving forwards. It is possible they have caught it and it is the right type of cell meaning you may only need 1 dose of chemo as a preventative measure. In my case I was diagnosed around FEB/MAR and it had spread to lymph nodes requiring full chemo. I was given the all clear in August and for me despite a few issues with underlining conditions I had chemo was not bad. The meds to help with sickness etc are very very good these days.

    However stressing yourself out with speculation is the worst thing to do, go with the flow, best of luck with your results crossing fingers you get the all clear and can move on.

    In regards to marijuana it can lead to raised HCG levels but I would not read to much into that as the biopsy will reveal all. Just as a note weed is OK during and I used during my chemo but inhale only as eating messes with chemo drugs.

    If it helps at all I blogged my journey at https://dgk1021.wixsite.com/dkscancerliciousjour

    Again best of luck Bud

    peace and love

    ​dk

    Comment


    • #3
      Hi Jono,

      I had a Radical I/O in May and 3x BEP (chemo) in June-August but I'm certainly not a Doctor. A great resource to feel like you have a little more of an idea of the steps that may or may not lay head based upon both the clinical and pathological staging you receive is the NCCN guidelines. Knowing whether the original tumor contained NSGCT, Mixed GCT or just seminoma is an important factor in entering into the flow chart that's presented in the NCCN guidelines.

      If your AFP was elevated prior to Orchiectomy that likely indicates a NSGCT as seminomas/chariocarcinoma doesn't produce AFP. Do you know if it was?

      No nodes or distant metastasis with slightly elevated tumor markers can mean a very different course of treatment depending upon the pathology that comes back. Things like the percentage of Embryonal Carcinoma, if your original tumor was in fact a NSGCT, and if there was any lymphovascular invasion (LVI) that presents in pathology may indicate a stronger need for adjuvant treatment.

      Bottom line is you'll have to go through the un-fun waiting game until you hear your pathology. Hang in there and hope for good pathology!
      5/1 - Minor swelling and pressure

      5/9 - Back pain and swelling

      5/18 -R. TC Diagnosis, No noted enlarged Lymph Nodes on CT report. Report notes (3) enlarged, retroperitoneal, periaortic masses of a fluid density. AFP: ~190, bHG: ~210

      5/26 - Right I/O

      6/10 - Path: 4cm, Mixed GCT with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma <40%; seminoma <1%). LVI present.

      6/17 - AFP: 205, bHCG: 9. More scans on 6/24. Looks like BEPx3.

      Comment


      • #4
        Well, yes, the levels should have returned to normal in a week, however both pot & low testosterone can cause elevation of hcg. I would refrain from pot entirely for a week or two and take another test before planning anything. If that hcg comes down you can probably skip chemo entirely.

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

        Comment


        • #5
          Thanks for getting back to me guys! I really appreciate it.

          I've recently heard from my urologist that due to my elevated tumor markers, they suspect another tumor elsewhere in my body that hasn't been detected by CT scans. He advised 3 cycles of chemotherapy, however the exact specifics I'll learn at my oncologist appointment in a few days. Not sure what the pathology picked up and hopefully will know soon.

          I'm definitely worried about chemotherapy - reading through the stories of how detrimental it can be to the human body and experiencing it with my older brother scares me. I was wondering if you guys had any advice when dealing with it? Such as what types of foods are best / could eat? Did your eyebrow hair fall out? Could you manage any exercise?

          I can definitely say I don't have low testosterone but in regards to the pot - I'll definitely be taking a break before my next blood test to see if there is any effect.

          Comment


          • #6
            It may be worth seeing if you can have your doctor reach out to someone like Dr. Karim Fizazi in Paris to get their opinions on the bet-hCG. While a level of 18.8 is elevated a bit, I personally would be hesitant (or at least not in a rush) to start chemotherapy unless the numbers were showing a pattern of rising and other causes of elevation were ruled out. Our friends at the TCRC keep a list of experts at: http://thetcrc.org/experts.html which has Dr. Fizazi's hospital affiliations, etc.

            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.

            Comment


            • #7
              I recently met with my oncologists and it appears that my hCg levels jumped from 18.1 prior to the surgery, to 104 post surgery. Pathology results indicate it is a non-seminoma tumour, however there isn't any detectable tumours in my CT scans. It is still obviously a cause for concern and my future treatment will now involve doing 3 cycles of BEP over the course of 9 weeks.

              This is heartbreaking news for me, but I know I'll be ok, just like so many other survivors on this forum!

              Comment

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