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Follow up testing. What's best?!

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  • Follow up testing. What's best?!

    Hello. I am new to the group. My son is 18 and was diagnosed with stage 1 pure seminoma two weeks before he graduated from high school this summer. He had surgery and the oncologist recommended aggressive observation, not radiation or chemo. That is the optimum choice for me, since we try to eat all organic and I believe whole heartedly in healing the body naturally. He had his first follow up appointment last week, but I was unable to attend. He only had a blood test before the appointment because I have been so concerned about exposing him to radiation and was trying to get information before doing so. He never showed elevated tumor markers in his blood with or without cancer, so I'm not counting on that test. His oncologist finally called me today and told me the following. He scheduled him for an MRI of the abdomen instead of CT because of my concerns. I asked if it would show as much detail and he said yes. He is sticking with wanting chest x-rays and says that the 3-4 times a year will not increase his risks of cancer. I told him I was told that x-rays don't see very well and he said that is correct, but they are cheaper and less radiation than a CT. I did not think to ask why they don't just do the MRI of the abdomen and chest at the same time. He said that if it comes back it could either be pure seminoma or something I didn't write down, in the perineum. It could either be slow growing or not.
    I would like to know any information anyone has about the risks of x-rays, the quality of the image compared to MRI, and if MRI is a good alternative to CT and x-ray of the chest. Thank you!

  • #2
    I have the same concern. I am recently diagnosed with tc and i am concerned about the radiations from CT scan
    What i know personally is mri isnt that effective in detecting cancer as ct scans

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    • #3
      What i know personally is that mri isnt effective in detecting cancer as ct scan

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      • #4
        I've been wrestling with the same question for my 19-year-old son who just finished chemo.

        First, see http://dialitdown.org created by Mike - the administrator of tc-cancer.com. There is a great table of radiation comparisons and recommendations of questions to ask the technicians if you do decide on a CT scan.

        From what I've gathered, one of the differences between CT's and MRIs is that CT's are quick, but MRIs take time to image, i.e., you have to hold still. Therefore, things that can't be held still, like your lungs, are not good candidates for MRIs.

        I don't think most doctors appreciate the amount of radiation put forth by CT scans and error on the side of having better images. For example, my son's first urologist got a CT of his abdomen and pelvis, but x-rays of the lungs. His second urologist then ordered a CT of the lungs which found a few ~2mm nodules. However, those are deemed clinically insignificant because 50% of people imaged have similar nodules. It seems anything big enough to be clinically significant for testicular cancer could have been found in an x-ray.

        The next big argument I've heard is that because you started with CT's you have to stay with CT's for better comparisons. I've discussed that in my blog about all this ( http://christiansfight.wordpress.com...30/chemo-done/ ), but I'm not yet sure if that is a valid argument.

        Finally, this article seems to indicate MRIs should work, but they probably had someone that likes MRIs do the analysis...
        http://www.ncbi.nlm.nih.gov/pubmed/20173145

        We have to do my son's imaging on Monday 11/3 and I'm currently leaning toward recommending an MRI for my son.

        I'm very interested in others thoughts as well. For example, seminoma is comparatively easier to treat, so I _think_ you have more flexibility in your imaging and surveillance choices. My son has 60/40 EC/YS, so perhaps he has less flexibility?
        Last edited by paolo; 10-31-14, 02:07 AM.

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        • #5
          I had stage 2C seminoma - I had 3 x BEP and Post chemo needed a RPLND for relapse. I am almost 2 yrs. clear since the surgery. I have had more scans that I would like to recall - when I was in a "grey" area with respect to relapse I had several PET/CT's in short interval PET includes far more radiation exposure than just CT alone. Did I like it ? No. Did I accept it absolutely, YES ! The risk of cancer is so much more a direct threat to our lives. Managing treatment and surveillance correctly DOES have an impact on survivial rates this is why clinical studies have proven better outcomes at centers of excellence. That being said, more is not always better in terms of surveillance. I would recommend consulting a top dr. in the field for the protocol and accept that you are doing what is best to fight the disease (the eminant threat). Proper scanning could make a difference in early detection and amount of spread. Which can make the difference between first line treatment efficacy vs. additional steps. The connection to "normal" scanning intervals on health is loose at best. The connection of treatment related toxicity, highly invasive surgery such as RPLND (I battled chylous ascites for 3 mos. post surgery) in much more eminant and real. Unless your Dr. is Over-doing it on the surveilance. I would back off the radiation thing and just know that you are making the best choice in a difficult time. As times passes and risk reduces the scanning intervals spread out. Seminoma is not a marker reliable cancer. I had a 8 cm tumor in my abdominal lymph nodes with only slightly elevated LDH (which is quite non specific to cacner anyways). Seminoma typically has a longer "relapse window" duration is less marker specific and therefore good images are critical to a surveillance protocol simply because diagnostic radiation exposure is the new "hot topic". Fight the war (cancer) with the best tools at your disposal. Don't compromise because of unwarranted fears. Cure rates for TC are great but even 95% means if you roll a 20 sided dice one side does not look good. Radiation from scans should be considered but it by no means has as strong a connection to health risk as cancer does (not even close).

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          • #6
            Really he will need chest xray and follow up chest xrays for a few years as the common spread area is to the Chest / Lungs. Yip there is radiation for all types of Radiology but for what they are looking for a CT is the better that an MRI - you can check the recommended treatment and surveillance guide lines here http://www.nccn.org/ they are looking for any spread and to assist / confirm staging. Some newer CT machines do promote lower levels of radiation.
            >>>>>>>>>
            TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
            TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

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            • #7
              Hi there. I noticed that you mentioned the eating healthy. With cancer personally I dont believe in the self healing thing. My parents smoked a lot for like 30 years.they eat and sometimes drink a lot.they are now 65 with no real health problems.personally I never smoked and was trying to have a healthy life and got cancer in my 30s.if it comes it comes. Concerning the surveillance I was offered 2 options.they called it the american and the british obviously because of the medical association that proposes it.the american included 12 ct scans in 5 years and xrays every 4 months.in the british one which I selected has 5 ct scans in the first 2 years.xrays about every 4 months(had 3 in 2 years) and blood tests.i also heard for seminoma they do also pet scans.i dont think mris are good for testicular cancer monitoring
              -02/2015 ct scan clear now on surveillance
              -January 2015 end of chemo
              -01-12-2014 2xBep start
              -biopsy said classic seminoma in 2/22 nodes
              -10-2014 lap rplnd
              -06-2014 lymph node increased to 12 mm
              -01-2014 10mm lymph node in the paraortic left region
              -2 years surveillance clear with ct scans and blood work
              -2 biopsies performed(1st said teratoma, embryonal and seminoma element, 2nd said teratoma and seminoma)
              -12-2011 cancer diagnozed NSGCT left orchiectomy

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              • #8
                Specifically I had ct scan in 3 months 6 months 9 and 12 months and 24 months.xrays in the middle for the lungs.blood markers tests in the first year every month ,2nd year every 2 months.3rd year every 3 months.4-5years every 6 months and then every year.ofc I got my rplnd now so my surveillance stopped)
                -02/2015 ct scan clear now on surveillance
                -January 2015 end of chemo
                -01-12-2014 2xBep start
                -biopsy said classic seminoma in 2/22 nodes
                -10-2014 lap rplnd
                -06-2014 lymph node increased to 12 mm
                -01-2014 10mm lymph node in the paraortic left region
                -2 years surveillance clear with ct scans and blood work
                -2 biopsies performed(1st said teratoma, embryonal and seminoma element, 2nd said teratoma and seminoma)
                -12-2011 cancer diagnozed NSGCT left orchiectomy

                Comment


                • #9
                  I have to agree with user284 on the subject of eating healthy. When I was diagnosed I was on a strict vegetarian diet, working out frequently and still developed testicular cancer. Eating healthy will help your body feel better. But it won't cure disease unfortunately. As for the topic on radiation; the imaging that a CT scan produces far outweighs the level of radiation emitted. You're exposed to small levels of radiation on a daily basis. Cell phone, computers, wifi. For seminoma you can't rely on blood test alone since they rarely elevate tumor markers to my understanding. One CT scan every 2 or 3 months definitely won't do any damage.
                  3/11/14 - Right orchiectomy
                  non seminoma - stage IIC 100% embroyal carcinoma
                  2 enlarged lymph nodes
                  3/31/14-5/27/14 - BEPx3
                  lymph nodes decrease in size but still about 3 cm each
                  7/16/14 - RPLND - found only dead cancer

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                  • #10
                    There was a recent article on the patters of relapse in patients with stage I disease that your doctor may want to pull the full text of and take a look at it. http://jco.ascopubs.org/content/earl....2116.abstract For seminoma the authors actually recommended a active surveillance protocol of CT scans at 6,12,18,24,30,36 months and again possibly at 60 months. This is a bit different from other suggested protocols out there.

                    You are correct in the the chest X-ray is of little value in surveillance but it also uses very little radiation so I would not be concerned with doing them. For seminoma the authors also recommended chest X-ray at 6,12,18 & 24 months.

                    Unless I had a very unique situation I would not consider MRI over CT at all. The ongoing TRISST trial that is looking at MRI compared to CT, may give us more information on MRI but again it is being conducted with highly specialized radiologists and the study is not completed. Also, outside of the study the physicians do not offer MRI to testis cancer patients so I think that should mean something as well. If they "knew" MRI was equal then you think they would offer it but they don't.
                    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.

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                    • #11
                      Thank you SOOO much everyone!!! So, my plan at this time is to go ahead with the CT and I guess chest x-ray at increased intervals instead of every 3 months as suggested, but now I am wondering if they should not be doing a chest CT instead of x-ray? If an x-4ray is of little value I am not sure why it is helpful to expose my son to even a little amount of radiation. I gather it doesn't see something until it is large? I am guessing that they assume (and you know what they say about assuming...) it would show up in the abdomen first so that is why they do the better scan there? I have heard it can skip the abdomen and go to the lungs and/or brain. We met a guy when my son got his first CT that had it show up in his lungs first. Any thoughts?
                      On the topic of diet, I know that some cancers cannot be cured with diet alone, but I also know that some people HAVE cured themselves. I also know that diet choices can CAUSE cancer and that avoiding those foods and eating certain things can lessen the odds of developing cancer or can help treat it once it develops. Each person must make their own choice, but in my family diet is paramount. I am not saying I would forego conventional treatments or insist my son do the same. I am not sure and hope I never have to face that decision as I know the horrible affects they cause. My son is 5'10 and weighs 110 lbs. Chemo is the LAST thing he needs. My father died of melanoma (metastasized to his brain) at age 48 and I helped take care of him. I have seen first hand what cancer and it's treatments do. We can all enhance our health through natural means. Thanks again everyone for helping me navigate through the hell called cancer!

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                      • #12
                        Sorry about the repeats! I kept getting a message saying I couldn't post.

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