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Double TC diagnosis - process description and thoughts

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  • Double TC diagnosis - process description and thoughts

    Hello Everyone,
    This forum has been a great help for me since I have been diagnosed - thank you. I wanted to describe my situation, current progress and further plans to hopefully help those who seek such knowledge on their journey and maybe trigger a discussion on certain decisions being made and difference in approaches we might have.

    I am 29 years old and live in the UK.

    Initial symptoms:
    In December 2019 I started to notice a slight discomfort in my left groin area which didn't go away for 2 weeks. I initially thought this is caused by the amount of time I spent sitting down or maybe reduced amount of exercise during winter period. Neither me nor my doctor could find any palpable changes, lumps or swelling that could indicate cancer but ultrasound was arranged anyway given the nature of complaint. Scan date 03.01.2019

    Ultra Sound analysis:
    "Lesion in both testicles". This was the first time when 'cancer' was seriously mentioned by urologist after he reviewed the report and found a palpable change in right testicle on 10.01.2020. Blood tests were arranged together with CT Scan and sperm bank appointment, given the bilateral nature of the changes. Surgery for right-side orchidectomy scheduled for 23.01.2020. Blood markers normal (AFP 3 / beta HCG <1 / LDH 171). Testosterone normal at 12.7

    Right I/O surgery:
    23.01.2020 - as planned. No issues or complications, I went home the same day. I was not in as much pain as I expected and did not need painkillers but my ability to move around was obviously somehow limited. After three weeks I am able to move around without any issues but still need to take it easy.

    Histopathology results:
    Confirmed Seminoma 23 x 23 x 12 mm.
    Vascular Space Invasion: Yes
    Confined to Testis: Yes
    Intra-Tubular Germ Cell Neoplasia: Present
    Microcalcifications: Present
    Areas of Scarring: Present
    Quote: "The tumour is a classical seminoma with a multinodular growth pattern and associated with lymphocyctic and histocyctic reaction. 11 mitoses are seen per 10hpf. Multiple foci of lymphovascular invasion are seen. pTNM status: pT2, pNx, pMx. Margin status: negative for tumour. "

    Here's where I start to get a bit confused with above, obviously I skipped a lot of lines of the report where status was 'absent' or 'negative'.
    Q1: how do I understand 'confined to testis and associated with lymphovascular invasion'. Doesn't this sort of contradict itself? Has it spread or not?
    Q2: what does 11 mitoses per 10hpf mean? This is the magnification level of microscope but I couldn't allocate this number on any scale I researched to make it meaningful to me
    Q3: Is decision about what Chemo to arrange for based solely on this?

    CT Scan results:
    All clear apart from: (note that CT was done week after the surgery - 29.01.2020)
    - Some calcification within the prostate which appears swollen or enlarged - suggested degree of prostatitis clinically
    - No lymph node enlargement by size criteria within the chest, abdomen or pelvis. Small retroperitoneal and para-aortic nodes are noted but indeterminate.
    - Several small nodes in the groin on both sides are not specific and do not exceed size criteria
    - Opinion: Should malignancy be confirmed pathologically, no convincing evidence of metastatic disease identified.

    Q1: Should I be worried about the enlarged prostate in any way? Does enlargement always indicate bacterial/viral infection?
    Q2: Here again I struggle to understand currently proposed chemo if there are no signs of cancer cells anywhere else?
    Q3: I have heard of examples where testicle was removed and no chemo was prescribed, is above enough for me to follow doctor's advice?

    Left I/O surgery:
    Scheduled for 20.02.2020 - more details to follow

    Chemotherapy:
    To be arranged after the surgery once 2nd histpat results come through. Will share more info once it starts and let you know the type / how I went thorough it.

    Testosterone Replacement:
    To start on the day of surgery in form of a gel (Testogel I believe). A lot of questions here but I guess I will wait to see how I feel initially with any further comments. I have been told that follow up appointment to review how I am doing with it will be 3 months away.

    Once again, a big thank you to all who contributed to this forum already, you have been a great help to put my mind at ease at the peak of my stressful moments and while I was trying to confirm if process which applies to me is valid. I will share as much information as I can to hopefully help out in a similar way to all those seeking information now and in future.
    Last edited by Radekal; 02-17-20, 05:11 PM.

  • #2
    Hello, sorry for you that you should be here. Synchronous bilateral testis cancer is really very rare, so for that you are really unlucky. I'll just try to answer your questions as much as I can as an amateur.

    Originally posted by Radekal View Post
    Q1: how do I understand 'confined to testis and associated with lymphovascular invasion'. Doesn't this sort of contradict itself? Has it spread or not?
    No, it just a local "spread" in the testicle to the microareas where blood and lymph vessels are. That is why you got pT2 diagnosis. Local LV invasion is not a big deal in seminomas, it just very slightly increases chances for future spreading than pT1 where no LV invasion is present.

    Originally posted by Radekal View Post
    Q2: what does 11 mitoses per 10hpf mean? This is the magnification level of microscope but I couldn't allocate this number on any scale I researched to make it meaningful to me
    I think it is number of "generations" of cancer cells that can be visible under the microscope, or something similar to that. When one cancer cell divides in two cells, that's one mitose. When these two cells divide in four new cells, and original cell is still alive and visible, that are two mitoses. More mitoses=tumor grows faster. I think 11 mitoses is a lot, but I'm not sure, so please don't take it for sure yet.

    Originally posted by Radekal View Post
    Q3: Is decision about what Chemo to arrange for based solely on this?
    No, chemo protocol for seminoma is standard, 3xBEP or (rarely) 4xEP is first line of defense.


    Originally posted by Radekal View Post
    Q1: Should I be worried about the enlarged prostate in any way? Does enlargement always indicate bacterial/viral infection?
    I think this is irrelevant for TC and for everything else now.

    Originally posted by Radekal View Post
    Q2: Here again I struggle to understand currently proposed chemo if there are no signs of cancer cells anywhere else?
    Ok, I am not very good in english, but where was chemo proposed? I don't see it.

    Originally posted by Radekal View Post
    Q3: I have heard of examples where testicle was removed and no chemo was prescribed, is above enough for me to follow doctor's advice?
    Vast majority of seminomas don't need chemo, if it is only this testicle you could accept that you have (my best guess) 75-80% chance that you are already cured. This chance can be further increased up to >95% by single shot of cisplatin chemo as adjuvant chemoterapy, but I think you are not optimal candidate for this option considering bilateral TC.

    Best wishes on second I/O, maybe second one is not a cancer.
    45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
    Waiting...

    Comment


    • #3
      Radekal, I may have missed something, but I am not seeing a strong indication for the need for chemo. Certainly close monitoring of the small nodes that were detected should be done, but I wouldn't plan on chemo at this point.

      TRT works pretty well for most, some have trouble getting things "dialed in" I've been on three different gels, and now injections (due to an insurance issue), & they all seemed to get the job done for the most part.

      Keep us posted as you find out more.
      Last edited by Davepet; 02-20-20, 07:12 PM.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

      Comment


      • #4
        Lymphovascular invasion and mitotic rate for seminoma is not of concern. Having negative markers and a clear CT would indicate that I would expect to be staged at Ib. It is possible the second pathology could be a nonseminoma with features that could (but very well may not) make you at a higher risk for relapse so I would wait on that before making any treatment decisions. I would consider the prostatitis a secondary issue and unrelated to the testicular cancer.

        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


        • #5
          Thanks a lot for replays and support!

          @Harxxony - sorry if I wasn't clear there, I meant that consultation with oncologist was scheduled but decision about exact type of treatment is still to be discussed given that second histopathology will provide a full picture of staging.

          Also, today's update is - I was presented with the option to undertake partial orchidectomy. Apparently my situation matches criteria for considering this option, i.e. bilateral nature of the issue and quite early stage of tumour development / TNM / staging. I will have more information on additional tests and assessments needed to give this a green light tomorrow hopefully.

          Most informative piece of info I found about the partial orchidectomy so far is here - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3183701/

          Despite surgery being more complex, potential need for radiotherapy and no assurance in preserving the testosterone and sperm production, if further tests confirm I might be a good candidate I think this might make sense.

          Comment


          • #6
            Originally posted by Radekal View Post
            Thanks a lot for replays and support!

            @Harxxony - sorry if I wasn't clear there, I meant that consultation with oncologist was scheduled but decision about exact type of treatment is still to be discussed given that second histopathology will provide a full picture of staging.

            Also, today's update is - I was presented with the option to undertake partial orchidectomy.
            Yep, that is standard procedure, urologist does I/O, radiologist does US and CT, pathologist does pathology report, and then oncologist takes all information and proposes treatment. On the basis of your first TC your options should be surveillance without any other treatment as you have 75-80% chance that you are already cured (my calculation), or just one cycle of chemo to kill any possible micrometastasis (with that you'd have up to 95% chance to be cured), but choice would be on you. But, as you are suspicious for 2nd one, it's normal that treatment decision is postponed.

            Partial I/O is also good choice. Good luck. If they proposed it, it means that there is a chance that second one is not a cancer.
            45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
            Waiting...

            Comment


            • #7
              I can only tell you my experience. On my second I/O my doc did a frozen section to be sure it was TC & offered a partial I/O if it was cancer. I told him that if the frozen section came back positive I wanted the whole testicle gone. It tried to kill me once & I wasn't giving it a second chance. That's just how I looked at it. Only you can make that decision.
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Thanks everyone for previous comments, I wanted to share an update to hopefully outline the process to anyone interested in future.

                Since partial orchidectomy on second testicle was mentioned further scans were done and it turned out that multiple changes have been found in testicle and not enough viable tissue would be left to go with that option. So I was kept under surveillance for 12 months and each consecutive ultrasound was showing slow but continuous growth of these masses (starting at 0.6cm and with most recent one 2.1cm, if I remember correctly)

                Around June we decided with the doctor that it was more a matter of 'when' rather then 'if' second I/O should be done and surgery was scheduled for September. In the meantime I had a meeting with endocrinology team and since my testosterone with one struggling testicle was already only 9.3 nmol/L (with 8-28 being healthy range) they put me on 2g of Tostran a day which increased it to 11.7 nmol/L after a month.

                I also managed to freeze more straws of sperm in fertility clinic although my sperm count was really low (1m with around 200m being a healthy range) which I guess should be one of the first things to look at if still planning to have kids and facing similar situation.

                Today it's been 2 weeks since my second I/O, surgery was performed, again under general anesthetic, and I was released home same day without any need for painkillers on day 2. I also had implants installed in place of two traitors and I am basically pain free, with no mood/erection/hot flashes issues but still taking it slow to don't risk any surgical hernias, given two cuts through abdominal muscles. My testosterone recommended dose was increased to 3g a day and if not for having to apply it daily I can't say I noticed any difference in how things are compared to before everything started.

                A meeting with oncology team and additional CT/MRI will be arranged shortly, I haven't seen the histopathology report to have any judgement yet but if all goes well and malignant changes were limited to testicle itself without too much lympho-vascular invasion I guess one simple or no chemo should be needed.

                It's been 18 months since I have been first diagnosed and this definitely was a good way of getting me out of my youth-invincibility-syndrome but expanded my knowledge and mental resilience a lot. I realise my situation isn't as serious as some described on the forum so I know it's easier for me to say than for other people but I like to think it gave me a lot of reasons to do things with my life I wouldn't normally dare or be too lazy to do.

                I will update again after the meeting with oncology team to share any insight into current practices in the UK and I am happy to answer any questions people might have.

                Comment


                • #9
                  I have now received a histopathology report which showed that second testicle was also classical seminoma with size of 22mm and no vascular invasion. Now appointment with oncology team is arranged where further plan will be put together but already at this stage I can roughly predict what doctors will suggest.

                  Given that risk factors taken into consideration in planning treatment for stage 1 seminoma are tumour size (more than 40mm) and presence of vascular invasion, it's usually either 1/2 carboplatin or just surveillance. Now in my case if both tumours were less than 25mm but vascular invasion was present in first testicle removed back in 2020 should I lean more towards the carboplatin option?

                  I guess I should be doing everything so there is no over-treatment given the already good prognosis but with this type of chemo being of quite low toxicity doesn't it make a logical choice to simply decrease chance of any relapse by having chemo anyway? Two below reports seem to sum-up this nicely but still there seem to be no international consensus of what best approach is. Any suggestions or maybe I am missing something important here?


                  ‚Äčhttps://www.urotoday.com/conference-...veillance.html

                  https://onlinelibrary.wiley.com/doi/full/10.1002/cnr2.1310

                  Comment


                  • #10
                    I did not read the reports, but avoiding unneeded treatment is what I would do, since if a recurrence happens, treatments would still be very effective so why deal with side effects w/o knowing
                    if even needed?
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment

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