Announcement

Collapse
No announcement yet.

Just Officially Diagnosed W/ Stage 1 Seminoma

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Just Officially Diagnosed W/ Stage 1 Seminoma

    I started having pain in my right testicle randomly in aproximately May 2023. It was always just brief pains 1-2 minutes and then would fade away. They weren't frequent in nature, just once a week, every other week. I shrugged it off, until July 3rd it started and was pretty constant through the day, at this point I noticed that it was also oddly shaped. I called a urologist office Tuesday, and they said they couldnt schedule due to lack of referral. Wednesday Morning I made an online appointment with a hospital affiliated urgent care, and they called me as I was walking out the door to head to their office, and told me to go to the ER as they couldn't perform the testing at the Urgent Care. I went to the ER reluctantly, I mean pain in the testicles, is it really an "emergency?" I felt silly going to the ER for that. They were packed, but got me into the back pretty quick, did an ultrasound, and put me back in a room. The doctor came in and said that I did have a mass, and the hypervascularity appears consistent with cancer, but he couldnt diagnose it as such. He had spoken to the urologist on call, and that he wanted me to be at his office the next day, they were working me in. "If I were you, I would make this appointment at all costs, they are a very busy practice and they tend to book weeks out" was the doctors advice. I went to the urologist, he concurred with the ER doctor and said that he suspects the same thing, that 95% of masses are cancer, and until something proves otherwise they were going to proceed as if it is cancer. Surgery scheduled the following Wednesday (1 week from ER visit) CT scan done the day before surgery. Wednesday I had a Radical Right Orchiectomy, and the pathology results came back consistent with Stage 1 Pure Seminoma.

    That brings us to current situation.

    I have been scheduled with a consultation to talk to a doctor about Chemo, and another doctor about radiation. To get information to weigh pros and cons of each. Basically the urologist is putting it in my hands to decide between Observation, Chemo, or Radiation. Observation would be CT scans once every 4 months for a year, then every 6 months until the 4 year mark, then every year for the rest of my life. I will copy and paste Labs, CT, and Pathology reports below. From what I can gather and the urologists opinion we caught it fairly early. At the same time, I dont want to have to worry about it coming back later down the road, somewhere else and having to deal with something that could be harder to treat. I am a 37 year old male with a 4yr old daughter. I kind of want to be around to see her graduate high school and get married.



    Labs, CT, and Pathology Below

    CT Scan

    Kidneys: No ureteral calculi or hydronephrosis is seen. Within the lateral cortex of the lower pole of the left kidney, note is made of a 15 mm ovoid relatively hypoenhancing area. On the previous examination, this structure appear more cystic in nature. However on today's study this structure demonstrates significantly higher density with areas of possible internal septation, possible internal solid components, or possible internal enhancement seen. Given this apparent interval change, further characterization of this lesion with a dedicated renal mass protocol CT or MRI is recommended. This structure has not enlarged significantly in the interval, however.

    IMPRESSION: 1. No acute appearing abnormality is identified within the abdomen or pelvis.
    2. No abdominal/pelvic adenopathy or other findings of overt metastatic malignancy are appreciated.
    3. 15 mm ovoid lesion is present within the lateral cortex of the lower pole the left kidney. On today's study, this structure appears somewhat complex in nature with possible internal septation, possible solid components and/or possible internal enhancement. Previously, this structure appeared cystic in nature. Given this apparent interval change, further characterization of this lesion with a dedicated renal mass protocol CT or MRI is recommended.

    Pathology

    Final Pathologic Diagnosis
    RIGHT TESTICLE, ORCHIECTOMY: - TUMOR TYPE: PURE SEMINOMA.
    -TUMOR SIZE (CM): 2.6 CM.
    - TUMOR FOCALITY: UNIFOCAL
    - MICROSCOPIC TUMOR EXTENSION: CONFINED TO TESTIS
    - VASCULAR INVASION ABSENT.
    - MARGINS: NEGATIVE
    - AJCC PATHOLOGIC STAGE: pT1a pN NOT ASSIGNED (NONE SUBMITTED OR IDENTIFIED)
    Diagnosis Comment The sections of the tumor show nests of loosely cohesive epithelial cells with intervening fibrous stroma containing abundant lymphocytes. The tumor has a uniform morphology and is morphologically consistent with a pure seminoma. Large areas of tumor necrosis are present. The tumor appears confined to the testis and does not show extension through the tunica. Immunoperoxidase stains of the tumor show positive staining for PLAP and C-kit with positive staining of background lymphocytes for CD45 (LCA). A few scattered AE1/AE3 keratin positive cells are seen but overall the tumor does not show extensive keratin positivity. CD30 is negative. Focal areas of intratubular germ cell neoplasia are seen adjacent to the tumor.

    Gross Description
    Received in formalin labeled with the patient's name and "right testicle" is a 59.4 g, 6.5 x 4.5 x 3.1 cm radical orchiectomy specimen with a 9.5 x 1.8 x 1.7 cm spermatic cord resection margin. The purple-red, edematous tunica vaginalis is intact. The specimen is inked black and sectioned to reveal a 2.6 x 1.9 x 1.6 cm white-pink to red-yellow, heterogenous mass with poorly defined, irregular borders within the tan-orange testicular parenchyma. The mass appears confined to the tunica albuginea and is 9.7 cm from the spermatic cord resection margin. A 3.1 x 1.5 x 1.5 cm unremarkable epididymis is present noted. No additional masses or lesions are appreciated. Representative sections are submitted as follows: A1-spermatic cord resection margin, en face; A2-mid cross-section of spermatic cord; A3-distal cross-section of spermatic cord; A4-mass in relation to epididymal tissue; A5-A6-mass in relation to tunica albuginea; A7-A8-mass in relation to surrounding testicular parenchyma. (TNB)

    Labs

    AFP: < 2.7 ng/mL
    HCG: 1 mlntlUnit/mL
    FSH: 8.3 mlntlUnit/mL
    LDH: 275 EnzU/L (high)
    LH: 8.2 mlntlUnit/mL

    _______________________________

    Advice, Suggestions, Thoughts to lend to helping me decide which path to take, would be greatly appreciated.

    They are waiting at the moment for me to decide which path on when to do a renal CT for that mass. The urologist believes it is an over read by the radiologist, but wants to have it done just to be on the safe side. He said if we do the observation path, he will schedule it in 4 months with my first set of CTs, if I choose a different path he would get it scheduled before the other treatment starts.

  • #2
    Hello, Rodger, sorry to hear of your diagnosis, but glad you caught it early. I’m in no way qualified to advise another person in your situation what to do. I can only say I was in a similar situation in 2014, I had adjuvant carboplatin. My reasoning for that decision was very similar to what you wrote, “I don't want to have to worry about it coming back later down the road, somewhere else and having to deal with something that could be harder to treat.”

    I regret the decision in 2014 to have carboplatin very much. The seminoma came back twice since then and I found that platinum-based chemo causes hearing loss and tinnitus (which I was not informed of then) among other negative effects (some of which I was casually informed of back then). it’s possible that adjuvant carboplatin may not have helped at all but actually complicated my case later on.

    I gather that adjuvant carboplatin is less recommended now than it was when I received it. Even then, in 2014, I was told no treatment with active surveillance was a viable option. I believe now that’s the option I should have chosen.

    I wish you the best in your case and decision making. If I could advise my past self, it would be to take the time to sort through it all thoroughly, don’t feel pressured to do anything and don’t make a fear-based, or convenience-based decision. Do get many opinions.
    2014 stage 1 seminoma. 1x adjuvant carboplatin

    2021 recurrent seminoma distant metastasis. 2x EP, 2x EC

    2022 recurrent seminoma paratracheal and subclavicular. radiation

    Comment


    • #3
      Hi Rodger,

      I am a 17 year stage I seminoma patient and I chose active surveillance. I figured I'd wait and if things came back then I knew for certain that I needed full dose chemotherapy, vs. receiving adjuvant carboplatin or radiation up front.

      There is no bad decision, besides possibly radiation at your age due to the risk of a secondary cancer in 20-30 years. The survival rate for stage I seminoma is basically the same no matter your choice now, but it is more than matter of what path to take. If relapsed, you would most likely be needing 9-12 weeks of chemotherapy, possible radiation or possible an RPLND (which is more new for seminoma) depending on the extent of the relapse.

      The follow up CTs every 4 months seem a bit aggressive. There is no "perfect schedule" but the NCCN recommends for stage I seminoma on active surveillance a CT at 4-6 and 12 months for year 1, every 6 months year 2, eery 6-12 months year 3 and then every 12-24 months for year 4 and 5. Here is the NCCN guidelines, https://www.nccn.org/guidelines/guid...gory=1&id=1468 you just have to create a free profile to view them.

      SWENOTECA also published some of their data on carboplatin x 1 if you would like to review it at: https://www.sciencedirect.com/scienc...23753419356923 I personally, do not find the carboplatin x 1 numbers that impressive.

      Your primary tumor of 2.6 cm is fairly small and I am not seeing a mention of any rete testis involvement in your pathology report.

      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 [email protected] if you would like to chat privately so as to avoid any delays.

      Comment


      • #4
        Thank you for the replies. I have met and discussed with both radiation and chemo oncologists the options with benefit/risks.

        Both agree that surveillence is the standard approach if the patient is willing and able to follow through with the scans.

        That being said, that is my sticking point on questioning surveillance. I have a high deductible health insurance ($7500) and make just above thresholds for any assistance. With my current income and expenses I can't figure out how to pull the scan costs out of the budget after over a week of analyzing and tweaking I'm no where close. If I can't pay for it, I won't be able to do that approach.

        So that leaves me 3 options

        Radiation

        Chemo

        Forego any treatment and scans and hope for the best. (My wife would probably kill me before the cancer came back if I chose this option 🤣)

        So from what I gather with long term complications chemo is the lesser of the 2 evils.

        (Mainly looking at secondary cancer risks from radiation vs Chemo highest likelihood long term complication is the risk of infertility)

        Comment


        • #5
          Speaking personally, the adjuvant carboplatin that I received at stage 1 (with vascular invasion) may have caused mutation and further complications. There was elevated hCG with the first occurrence, but the 2nd and 3rd occurrences there was no elevated hCG, even when I had widespread metastasis, from my lower abdomen all the way to my neck. I lost an inexpensive, non-invasive, valuable diagnostic tool (hCG marker test).

          I’m sorry that your decision process is constrained by financial concerns. If I was in that situation (which appears to be very low risk), knowing what I know now, I’d just have blood marker tests, and consider looking for some kind of aid, social services, aid from religious organizations, group insurance, etc. so the best long-term health decision can be made instead of a mere finance-based decision.
          2014 stage 1 seminoma. 1x adjuvant carboplatin

          2021 recurrent seminoma distant metastasis. 2x EP, 2x EC

          2022 recurrent seminoma paratracheal and subclavicular. radiation

          Comment


          • #6
            Again personally, I felt pressured and felt like I needed to ‘do something’ relatively soon after the diagnosis and orchiectomy. This was not conducive to the best outcome. In reality, it’s a relatively low pressure situation, even in my case with a larger tumor and vascular invasion
            2014 stage 1 seminoma. 1x adjuvant carboplatin

            2021 recurrent seminoma distant metastasis. 2x EP, 2x EC

            2022 recurrent seminoma paratracheal and subclavicular. radiation

            Comment


            • #7
              Rodger, I suppose you could see if another insurance plan is an option in November when it is open enrollment. You could also look at the schedule and see if the CTs need to be as aggressive as they are saying? Not sure of the schedule they are mentioning. You could also see if local imaging facilities may offer a lower cash price, as often they do and then just pay cash vs. the insurance companies agreed upon pricing, in concert with your high deductible. Is a Health Savings Plan an option? I think there are a lot of options in the long run and in the short term it may be main challenges.

              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 [email protected] if you would like to chat privately so as to avoid any delays.

              Comment

              Working...
              X
              😀
              🥰
              🤢
              😎
              😡
              👍
              👎