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  • where I'm going ..

    In Dec 2016 started to have a kind of pain on upper leg. In January 2017 I had orchiectomy in Romania. Analyses level are iHCG 90, iAFP 738.CT before operation said unclear lymph node enlargement paraaortic left side (up to 80 mm).
    Result was non seminoma and the urologist said that is stage IIA, .non-seminomatous cancer on the left side (embryonal carcinoma, yolk sac carcinoma, 40mm in size, no vascular invasion).
    He also recommended if I can, to go also in Germany to dr. Albers (a very good doctor on this).
    I was there and result was " physically exam uneventful, small lump in the left scrotum as a result of orchiectomy, no suspicion of tumor. Ultrasound: no retroperitoneal lymph nodes ,no pathological finding. Lab values (in March, after 2 month operation): HCG < 2,0mU/ml (norm 2.5-8,4); AFP 4,5ug/l (norm<7). Computer tomography chest and abdomen with paraaortic lymph node 8mm in transverse diameter and 20mm in longitudinal diameter (currently no suspicion of lymph node metastases).
    All showed a clinical stage I non-seminoma. Recurrence risk about 15-20%. Most of recurrences occur in the first 12 months so it is important to check markers monthly and have imaging every 3 months. No chemo, just surveillance.

    I did this markers every 3 months and CT's, MRI's etc.

    I recovered very hard from operations. Everything was hurting me. Started to have cold zones in pelvis area, hard belly. Than a bump appeared in April the same year in cavernous part of penis. MRI's, CT's - no tumour, something else, no need to worry. Also in April markers were already: HCG 0.1; AFP 1.51, LDH 133 (135-225).

    Then with time, from one year ago my upper back part of legs are hurting me (it's like I have very small bumps there and blood can't flow how it should). My hands are called when before weren't.
    Then also last year (before 2019 CT) some small bumps appeared under my arms and tissue now is tenderness. I felt also small bumps as sand in neck (jugular notch part) and the tissue is harder - the same happened before with pelvis: first it was like sand, then small bumps and than just tissue but tender.

    CT was ok, markers ok. Doctors said it's ok because I'm afraid and nothing is there. Even if I was and made ultrasound and they see this in the neck but they said nothing is under arms (but now I'm sure is something).

    From some time very small bumps appeared (probably extended from underarms) in the breasts area and also the tissue started to be harder. Every time when I feel these small bumps then the tissue starts to be more tender and area colder.

    I freaked out again and called the oncology. I'll go again in 3-4 days but I can't trust them anymore. For sure I'm going again to CT or MRI and also blood indicators.
    When the doctor in Germany said to go without chemo and just surveillance, I didn't know will be so hard. I didn't know that you should have really good doctors to have this kind of monitorization.

    I'm not feeling good. It's like I have electricity in my arms, abdomen is very hard and because of this I have problems now with digestion. Pelvis area, back of legs (upper part) are hard and cold sometimes.

    I'm searching now on internet what to to, where to go. In Germany i can't go because of this pandemic (don't receive international patients for now).
    Didn't have enough money to go every time until now in Germany. I was two times only. When I stayed with surveillance I put so much trust in that doctor and now I can't go there.
    In time, I've changed the doctors, went to gastroenterolgy, urology, neurology (I thought maybe I have something else, arthtritis or don't know), oftalmology, ultrasounds (with neck part)

    I don't know why why wrote you here. I've read your site and I said maybe somebody else can/could be helped by my story. And also somebody else maybe it's reading and can give me an advice.

    Thanks for having this. In my country couldn't find a blog of this kind.


  • #2
    Hi Claude,

    Thanks for sharing your story and as survivors we can sometimes relate various symptoms to our cancer even though they are not related. Not saying that you are not experiencing symptoms of something else but it doesn't sound common to testicular cancer so perhaps something else is going on? I am glad to hear that you found Dr. Albers as he is an internationally known expert with TC and you are in good hands with him. I hope that the doctors find a reason for your symptoms and check ups can always be a nervous time. Perhaps see another specialist might be a good plan.

    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
    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 if you would like to chat privately so as to avoid any delays.