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Mike
Mike
Administrator
Last Activity: 07-21-18, 03:21 PM
Joined: 04-07-08
Location: Cincinnati, Ohio
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  • I am not sure what you mean by PE? Can you clarify the abbreviation? Are you meaning Pulmonary Embolism or something else?

    Mike
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  • Mike
    replied to New member
    I am glad that they got the results to you more quickly than they first said. Did they say what kind of testicular cancer it was, seminoma or nonseminoma? Where your markers in the normal range before surgery? SWENOTECA, the Swedish and Norwegian Testicular Cancer Group, actually have a website with all of their management ...
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  • The use of modified templates, especially in post chemotherapy RPLNDs is a topic of much contention, from what I have read. Some RPLND experts advocate for modified templates but in selective patients, i.e. those with normal tumor markers and specific size of residual masses that are in the typical landing zone for the side of testicular...
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  • Mike
    replied to New member
    I am not sure of the time periods for Sweden. In the US, the CT scans are usually ready the next day and I know my pathology was ready within 72 hours. The SWENOTECA program in Sweden/Norway is incredible so I would be surprised that it takes that long. Perhaps the doctors just need to be pushed a bit harder? M...
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  • ASCO TAPUR Study: Targeted Agent and Profiling Utilization Registry (TAPUR) Study

    For those with refractory tumors that have a genomic or molecular test done on your tumor, you may be eligible for free medications via ASCO's TAPUR Study. The Targeted Agent and Profiling Utilization Registry (TAPUR) Study offers a clinical trial opportunity for patients with advanced cancer who have not responded or are no longer r...
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  • Make An Impact Program for Refractory and Mediastinal Tumors

    Memorial Sloan Kettering's Make-An-IMPACT program provides genetic sequencing & testing at no cost to qualifying patients with rare cancers.

    These include, testicular germ cell cancers that are refractory to chemotherapy and primary mediastinal germ cell tumors.

    To learn more go to: https://www.mskcc.org/research-progra...
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  • Mike
    replied to Another question
    Unless the ultrasound showed a mass that was suspicious for testicular cancer, then i would not simply have it removed because of cysts and/or pain. If pain does develop, then perhaps other things can be tried to treat it.

    Mike
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  • Mike
    replied to So confused
    I've never really seen a U/S report in tenths of a mm so at first I thought it was saying cm and was nervous. Did they have any options on what it could be? An infarct or a hemorrhage, anything? At 6.3 mm it really is pretty small and might not be easy characterized with ultrasound. Did they mention that they wanted to f...
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  • Mike
    replied to So confused
    I've never really seen a U/S report in tents of a mm so at first I thought it was saying cm and was nervous. Did they have any options on what it could be? An infarct or a hemorrhage, anything? At 6.3 mm it really is pretty small and might not be easy characterized with ultrasound. Did they mention that they wanted to follow u...
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  • I forgot to mention as well. Testicular cancer spreading to the prostate is extremely rare with only a handful of cases ever reported to my knowledge.

    Mike
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  • Mike
    replied to Immunotherapy
    Great to hear that the AFP dropped. Great to hear that you did Make An Impact too. Dr. Feldman is awesome. The Make An Impact results will have the genomic/molecular testing, I do believe it takes about 6 weeks, so hopefully the results are back soon. To my knowledge there are not many actionable mutation targets...
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  • The situation definitely seems a little weird over the years and doctors and different opinions, US results, biopsy, etc. Did they mention if they had checked tumor markers with the labs? AFP, beta-hCG and LDH are the markers. Given the long history and unless he has elevated markers of concern or having any systemic symptoms outsi...
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  • Mike
    replied to Immunotherapy
    Did Memorial Sloan Kettering mention their Make An Impact study to you? With it they do a free genomic profile of the tumor that may have a rare chance of finding an actionable target. Have you had any genomic/molecular testing of the tumor?

    https://www.mskcc.org/research-progr...gy/make-impact If you haven;t...
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  • I thought you might find this of interest. It is a recent abstract and a small cohort but it looks at the ability to monitor patents with nodes 1-1.5 cm so larger than you were showing and I thought you would find it interesting. IS SURVEILLANCE WITHOUT IMMEDIATE TREATMENT AN OPTION FOR NEWLY DIAGNOSED TESTICULAR GERM-CELL C...
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  • I'm not sure who you are seeing in Melbourne but it may be worth reaching out to Dr. Guy Toner and seeing if he has any recommendations as far as a second opinion. He is a well respected testicular cancer expert as a medical oncologist and I am sure has urology specialists that he works with. His contact information...
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  • Unfortunately, I think you are in a longer waiting period. Seeing what your AFP is doing is going to be important and hopefully it is dropping. With the node, assuming that it is a typical landing zone for testicular cancer given the side you were affected on and the actual node, it is less than the 1 cm cutt-off so a bit...
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  • I don;t know the details about your son but the decision to do BEPx4 vs. BEPx3, for example, is based on the patient's prognosis of advanced disease. The prognosis is basically Good, Intermediate or Poor (there is no Poor prognosis for seminoma though). This is based on the patients origin of the germ cell tumor,...
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  • I would certainly re-check the labs. Were you scheduled to have a regular CT scan? If so, then having one is of no issue. If not, then I may get the labs verified before I had an added CT exam. beta-hCG labs can be falsely elevated due to cross reactivity to high LH levels due to low testosterone. If the level...
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  • Research Participants: On Exercise Interest in Couples After Cancer Diagnosis

    The University of Colorado is looking for research participants in the U.S. investigating interest in exercise among couples after a cancer diagnosis. Please see additional information below and if interested, then contact them directly.

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    Participate in an online research survey about exercise!
    Research Study Title: Predictors of physical activity interest among couples following a cancer diagnosis The purpose of ...
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  • Research Participants: On the Testicular Cancer Experience

    We have been contacted from researchers at Glasgow Caledonian University, who are looking for research participants that have undergone active treatment for testicular cancer. Below is additional information provided by them. If you are interested, then please reach out to them. Participants are eligible worldwide.

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    Are you a man who has been affected by a male specific form...
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