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Hi There! A Couple Questions From a Newly Diagnosed Patient...

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  • Hi There! A Couple Questions From a Newly Diagnosed Patient...

    Hi all, thanks in advance for any help I might receive on these questions below. I greatly appreciate the time it takes to read and respond to these longer posts. If I may, I'll start with a brief timeline leading up to my diagnosis:

    -------------------------

    I noticed a lump in my right testicle roughly around 09/15/2017 and procrastinated a couple weeks until finally seeing my general practitioner (I am 25 years old).

    I had an Ultrasound 10/20/2017 and a solid mass was detected on my right testicle measuring in at 1.7 x 1.1 x 1.4 cm.

    I was referred to a Urologist and was told it was "cancer until proven otherwise," which I had expected from the literature I had read. I am now scheduled for an Orchiectomy on 11/9/2017.

    Since my diagnosis, I have done a ton or research on testicular cancer and am now familiar with the basics of staging, procedures, and protocols (big thanks to this forum as well!).

    -------------------------

    1) During my appointment with my Urologist he presented a CT scan as optional prior to surgery. I didn't know anything about these kinds of scans so I told him to book me for one right away. I later researched the effects CT scan radiation may have on secondary cancers down the line. But, I also realize that I will potentially undergo a dozen+ CT scans over the next few years as a means of surveillance and that a scan now may be trivial in the grand scheme. In short, I asked my doctor whether a CT scan prior to surgery (in 9 days) will yield any medical benefit or if I should wait until after surgery. He replied: "I am fine to wait until after surgery to do the initial CT if you want to wait and see if the lesion is benign." I realize that cancer is 99% probable at this point. I still don't know whether to wait to get my first CT scan now or wait until after surgery as it now seems like my call - I'd like to go with the best option if there is one. Any advice?

    2) I had an EKG done and got my blood was drawn following my appointment with my Urologist. I completed a CBC NO DIFFERENTIAL, Basic Metabolic Panel, and LD Total. All these tests came back normal according to the results that were posted that night on my health portal.

    My LDH Total was 170 IU/L with a standard range of 110-268 IU/L.

    My question here is: why didn't my Urologist also test for AFP and HCG? From my research, it seems like measuring these two proteins are common practice, but on my health portal it just shows an LD test. Any advice? I'll probably email him about this.

    -------------------------

    I just want to say thanks in advance for any help I might receive. This forum seems like a great community and I look forward to reading your responses and interacting with you all.

    Thank you,
    Luke

  • #2
    I am only a few weeks ahead of you in this process (I had a left I/O last Wednesday), so my response is just me trying to guess at the urologist's thought process. The overall attitude of the urologist seems to be focused on getting the surgery done, determining the type of cancer (if any), then making a plan from there. This is probably based off of the size of the mass (1-2 cm seems to be considered small) leading him to think that it was caught early.

    That being said, my personal thoughts are that a CT prior to surgery is a lot more important than the blood tests, as it helps to determine if there is an metastasis by way of spread to the lymph nodes. It seems that a large percentage of the time the blood tests show nothing.

    Comment


    • #3
      BrianM,

      I agree - the vibe I get is that the Urologist is more concerned about getting the surgery out of the way and focusing on one thing at a time. I realize he has many other patients as well so my intention is to not bombard him with questions. To me, though, the details matter which is why I'm posting here.

      Is a CT scan prior to surgery typical, or after? As far as getting bloodwork for AFP and HCG, that should be easy thing to do...

      How has your recovery been, Brian? Have you heard back from the pathology report yet? I wish you the best.

      Comment


      • #4
        I think that either a chest x-ray or a CT (or both) are pretty common to have immediately following the discovery. For me, it was ultrasound on a Thursday, blood work on a Friday, chest x-ray on a Monday, and CT on a Wednesday. It seemed to me that the x-ray and blood work were the immediate items on the check list and the CT was the next logical step.

        The recovery has, in all honesty, sucked. I have had a good deal of pain and discomfort. The worst part is that I still haven't gotten the pathology report back, so there is still a decent change that just as I am recovering from the last surgery I will need to go back in for a second I/O. The stress doesn't make healing much easier.

        Comment


        • #5
          I'm not sure why Hcg wasn't ordered, as I believe testicular cancer always produces elevated Hcg counts. Honestly I don't see why waiting till after surgery to get your CT and chest xray would hurt, your pathology will tell you if the cancer has started traveling up your cord and started to spread. (Plz keep in mind I am by no means a doctor and there could very well be a good reason to get the CT and xray done before your surgery, but I agree with your logic, less CT and xray the better)


          Also BrianM double testicular cancer is very unlikely. If there was a lump on both testicles they would have ultra sounded both, its more likely to occur later down the road. All they will be looking for in your post I/O CT and chest xray is enlarged lymph nodes to see if it has spread to yor abdomen/back. Tc cancer has a pretty well mapped out path when spreading early.
          Good luck to you both

          Comment


          • #6
            Sorry to welcome you to the club Luke, but you will find this forum a great resource.

            To answer your 2 questions:
            1) Yes, you can wait to have your CT scan and chest X-ray. There is no reason to have it done prior to the orchiectomy. Having said that, radiation exposure from CT scans would be the least of my worries right now. You most likely have a cancerous testicle that needs to come out ASAP. But yes, postpone the CT and chest X-ray for after the orchiectomy.

            2) Yes, AFP and beta-HCG should have been checked. Make sure there are checked prior to orchiectomy.

            My first concern is, why are they waiting until the 9th of November to get that sucker out? That's a completely unacceptable wait from the time of ultrasound to the orchiectomy. From the time of detection on ultrasound to orchiectomy, maximum 1 week is recommended!
            Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

            7/1/2015: felt tiny lump on side of R testicle
            7/30/2015: Ultrasound shows 2 intra-testicular masses.
            7/31/2015: tumor markers normal, CXR clear
            8/5/2015: R orchiectomy
            8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
            8/14/2015: CT abdomen/pelvis clear, Stage 1b
            8/24/2015: started 1 x BEP

            Comment


            • #7
              Hi Luke! I would be more concerned about why the other tumor markers were not done- at least I do not see them mentioned in your original post. Definitely need to see if HCG & AFP are elevated. As far as timing of CT Scan/chest x-ray, some do it prior to Orchietcomy, some after. It depends on Urologist, but you do need imaging to complete staging. Call today and ask for the other tumor marker blood work as soon as possible.


              Son Grant
              dx 12/21/16 at age 17

              BEP x3
              Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
              2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
              Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

              Comment


              • #8
                Hi Luke,

                Some places wait routinely until after the pathology to do the CT and chest imaging. I assume this is so that they can cancel the scans if the pathology is benign. I had my CT before orchiectomy and I personally prefer this route. The reasoning is that if your markers are negative and the only indication that you have for metastasis is a mildly enlarged lymph node then it is hard to determine if this node is an issue or if it is a reactive lymph node due to the surgery. Now, does something like this occur a lot. Not really but I have seen it. Likewise, if you have a CT pre-operatively and there is metastasis detected, it may speed up the orchiectomy process and provide additional time to prepare for further treatments, to sperm bank again, etc. Is it OK to wait until after surgery for the CT? Sure. I just personally prefer it the other way around.

                As far as radiation exposure and CT. In patients with testis cancer the information from the CT is much more beneficial than the risk of radiation exposure, given that you are not overly aggressive with the number of CTs received. We have more information that may help you at: http://dialitdown.org/ If you are overly concernd, then again waiting until the pathology returns makes sense.

                For the tumor markers, again, having them pre-operatively is important but they could also be done the morning of the orchiectomy as long as they are done properly (i.e. some labs will run a qualitative beta-hCG instead of a quantitative. Meaning the results indicate "pregnant or not" and not the actual number, which is needed. Now, even if there is an error they would have the blood in the lab that they could probably re-run the test if an error is determine straight away.

                Keep us posted of your progress.

                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

                Comment


                • #9
                  As others said, no real medical advantage of a CT prior to surgery, however a clear CT can give some peace of mind while waiting for path results ( even a positive CT at least removes some of the uncertainty of the waiting period I found not knowing was much worse than even having bad news). Make no mistake, you are not going to miss any radiation either way, you will have that scan either before or after the I/O & many more over the next few years.

                  You might want to check back at you patient portal, seems to me those missing tests take a few days before results are available. If they really didn't do the tests, you should make sure they do.

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

                  Comment


                  • #10
                    just checking up on you, Dave gave good suggestion.
                    Son Grant
                    dx 12/21/16 at age 17

                    BEP x3
                    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                    Comment

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