• ivo's Avatar

    ivo asked a questionTesticular Cancer

    testicular cancer: could tis be a recess found in the spine region?

    12 answers
    • ivo's Avatar
      ivo

      Doug,
      Again,thanks for stopping by. I hope you'll come by again, you've been really helpful to me. I actually did discover your website now...http://tcrc.acor.org/. It's great! Thanks for doing this. There's so much "c...p" on the normal web..it's great to have something which is detailed but you can still follow it easily. I myself work at a uni (so I don't have a problem reading research papers, including medical journals)..the trouble is that my knowledge at this point is still limited so getting to the bottom of the problem takes too much time (I'm a historian/poli. scientist by training).

      Also, you are giving me the creeps. For you are totally right...it's a bone scan that I'm scheduled to take next. I've looked into the form properly and when I translate it, it says: radionuclide bone scanning - RI. Now, as you yourself suggesed, the first area to look at if possible metastasis is suspected from testicular cancer is the retroperitoneum. Not bones. So why the XXX do they make me take this? I specifically asked the doctor about a CT scan (i.e. I took one in November, part of preventive meassures after the two rounds of chemo). He said it was not necessary for me to take a CT scan. He is an urologist.
      So to sum this up: i talked to 3 orthopedists who relied on two MRI scans to exclude the possibility of metastases, and to one urologist (who originally diagnosed my cancer and conducted orchiectomy). Btw. none of the orthopedists talked about retroperitoneum. Is it possible that they would overlook/not be aware of the type of progression in testicular cancer? (I specifically told all of them what my history with cancer was + they had it in their database as I go to the same hospital and all the physicians share the same data). I am puzzled by the whole approach.
      I also emailed my oncologist in my home country (this guy is a real expert). In his reply, he mentioned that MRI should be okay. But he might have also assumed a level of competence/experience that doctors here might not have when it comes to testicular cancer? I don't know. Hence, here's a question for you: how easy or difficult is it to miss metastases on the MRI images as compared to CT scans?Or how easy is it to miss them altogether?
      Tonight I woke up at 4am with horrible pain in my back (greater pain than in the previous days). I took two pain killers...not sure if they had any effect or not. Fell asleep again around 7am...and then again woke up the same back pain. But once I get up, especially during the day, I'm actually quite fine (apart from sitting in a chair). I would be really obliged if you were able to provide me with a link that would in detail describe how it feels/or what kind of pain one has in the lower back area when the testicular cancer has spread. Particularly, I am interested the description of the intensity of this pain, location, night vs. day experiences, etc.
      last but not least, you said: "but I am talking about a CT scan looking for enlarged lymph nodes"..does this CT scan have a particular technical name? I.e. if I request it in the hospital I need to tell them what I want.
      btw. they did the test for cancer markers..but I don't know the outcome yet.
      anyhow, thank you again.

      about 5 years ago
    • dougbank's Avatar
      dougbank

      I've already given you the name I would use. CT Scan of the abdomen and pelvis with and without contrast. I dont think there is a better name for this procedure.

      As for links, here are a few, but none are likely to give the detail you desire: (Some are very old. Symptoms dont change, but treatment does, so dont pay attention to any comments about curing the cancer)

      http://www.tc-cancer.com/forum/forum/during-treatment-and-beyond/treatment-after-the-orchiectomy-radiation-chemotherapy-rplnd-surveillance/6970-back-pain-associated-with-cancer

      http://www.sonoma.edu/users/w/wilkosz/n540a-07/Dx%20and%20Tx%20Testicular%20CA.pdf

      http://www.sciencedirect.com/science/article/pii/S0140673687900754 (maybe you will have access through your university. I do not have access)

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1247869/pdf/bmjcred00040-0046.pdf

      It is difficult to find more specific and detailed descriptions without diving down into personal anecdotes. You can't trust anecdotes too much, but the lesson I have learned from reviewing many of them is that you need a CT scan and markers. If they are clean, then worry about stuff other than cancer. Until you have the CT scan, though, cancer is a concern. (That said, extremely rare cases could spread to bone, but I still feel that that is really unlikely without first seeing the cancer elsewhere. Get a CT scan and then worry about alternate explanations.)

      Where is your home country? Who is the real expert? How easy is it to miss a metastasis? not too hard. It could be 1 cm or less, and MRIs dont necessarily have the resolution amongst all the other soft tissue in the abdomen.

      Doug

      about 5 years ago
    • ivo's Avatar
      ivo

      Doug,
      thank you, you don't even know how helpful this is right now. Today, I couldn't sleep during the night..woke up with horrible back pain..couple of hours, fell asleep again, then the same repeated itself. During the afternoon, the same issue: felt asleep, and after 1,5 hours I woke up with a really nasty backpain. Today's been extreme in this regard, but the same pattern has been repeating itself for some time now, and pretty much every day the last week. Thinking of the possibility that this could be a relapse (and the fact that I alerted so many physicians to this possibility already 2 months ago), it's really messing with my concentration right now. It would also change a lot of things.
      To answer your questions: my home country is the Czech Republic, the expert is a department's head at the top oncological institute we have in our country (and he specializes in testicular cancer). The institute (a huge hospital) specializes in treating cancer patients only (it might not be as top-notch when it comes to research...I have a PhD from Berkeley and know how advanced US science is in this regard) but I think in terms of treatment they are meeting a high standard too. This is also where I received originally my first rounds of chemo . And this would be also the place to go back to if I have a relapse (unfortunatelly it is also a place where my mother died of leukemia a few years ago...so you can imagine..me going back there, it will be a huge burden especially to my father who's already been through this with his wife and with me the first time).
      In any case, I am going to go get the CT scan.Again, thank you for your help.

      about 5 years ago
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    ivo shared an experience

    Drug or Chemo Therapy (Chemotherapy)

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    ivo shared an experience

    Procedure or Surgery (Removal of testicle)

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    ivo asked a questionTesticular Cancer

    a choice to make: one or two rounds of carboplatin? your opinion?

    4 answers
    • cam32505's Avatar
      cam32505

      I really wasn't offered a choice, but I think it would be a difficult decision to make. It seems like it's better to be aggressive in the first place, because cancer doesn't seem to cooperate when it recurs. I have to tell you that I met a lot of prostate cancer patients in rad onc. One of them was fighting a recurrance. He said his doctor didn't know if they were even targeting the right area, since prostate had been removed, but he said the cancer wouldn't take him anyway as it was a slow growing type of cancer.

      over 6 years ago
    • leepenn's Avatar
      leepenn

      your drop in relapse risk is huge for just the one round of chemo - wow!

      anyway… balancing the risks of the second round with the potential benefit (reduced risk of recurrence) is always the tough call to make. it's nice to see that your doc isn't trying to get you to take as aggressive an approach as possible… but sounds like he's open to discussion and clearly giving you information that should help you feel confident of your decision.

      by the way, i think you'll have just one infusion of carboplatin, right? then you're off to healing up from the infusion?

      i suppose things that i would consider… in addition to the cancer's characteristics... does your family have a history of cancer diagnoses? what are your other risk factors? are you fit and at a healthy weight? what's your diet like? is your risk lowered through lifestyle choices? or not so much? do you have small children? are you hoping to have small children with your own dna (i.e., fertility considerations)? what would relapse look like? for some cancers, relapse is nearly always metastatic… for other cancers, relapse is nearly local…

      well - there are my two cents...
      i wish you minimal side effects but maximum efficacy!

      lee

      over 6 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      If it were me, I would not do the 2nd round. Lets just say you have an 80% chance of NO relapse. Is an 82-83% chance really that much better? Also, is there a particular reason they're using Carboplatin instead of Cisplatin?

      over 6 years ago
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