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  • Darwin2015
    started a topic Feeling Confused & Frustrated

    Feeling Confused & Frustrated

    [[FEELING CONFUSED & FRUSTRATED . LOOKING FOR SOME FRIENDLY ADVICE ]

    Hey Everybody ,
    My name is Gary , I've being a member for close to 2 years , just being in the background using all the available information on this page . Its helped me so much over the last 2 years .

    Feeling slightly confused but more frustrated . I could really do with some advice , I'm starting to lose faith in my Doctors decisions regarding my treatment .
    Today was supposed to be the day when the good news started , the results from my post chemo (3xBEP) CT Scan & Bloods .

    AFP 13.7

    CT LYMPH NODES : There is a chain of abdominal lymph node in the left para-ortic region just inferior to the left renal artery. they measure up to 11mm in short axis which is stable .

    My AFP has always being slightly above average since i had my left I/O(7/9/2015) , its always fluctuated between 12-15 , its never being below the magic marker 10 .

    Its being 4 months since i had my initial CT followed by PET scan , there has being no change in Lymph node size since then. My AFP is slightly elevated which has always being the case since 2015 .

    I just get the feeling from my Doctor today , that he might of rushed me into Chemo , maybe we should have watched the AFP , then had another scan in 2-3 months . Which is exactly what he wants to do now , hes asked to come back in 6 weeks with new bloods and then decide on our next step Biopsy/RPLND.

    Thats why I'm feeling confused about the whole situation , did i just complete 3x BEP for no reason , should we not have went ahead with the Biopsy before Chemo rather than after chemo ?

    SEPT 2015 Left I/O . No Invasion .
    Tumour Size 17x15x12mm
    confined to the testis
    Embryonal Carcinoma

    Followed survelliance protocol till 7/8/2017 two enlarged lymph nodes found on CT Scan sent for PET Scan
    Lymph Nodes had increased from 7x7mm to 9x9mm


    PET SCAN RESULTS 25/8/2017 CONCLUSION:
    The known enlarged retroperitoneal para-aortic lymph nodes are F D G avid consistent with metastases . No scan evidence of F D G avid malignacy elsewhere .

    9/10/17 Started 3xBEP
    9/12/17 Finished 3xBEP

    Today 15/12/17) Post BEP CT &Blood , no change in lymph nodes , slight change in AFP

    AFP RESULTS JUNE -DECEMBER 2017
    07/8 14.7
    16/8 14.7
    06/9 14.1
    20/10 11.9 ( Finished 1x BEP)
    27/10 11.3
    17/11 12.9
    11/12 13.7 (3xBEP Completed )
    Back in 6 weeks to check AFP , and to decide the next step in my treatment . feeling very nervous now .

    Sorry guys i tried to explain everything as best i can , any advice would be really helpful . My Doctor is starting to make me feel nervous about everything .
    Last edited by Darwin2015; 12-15-17, 05:41 PM.

  • Mike
    replied
    I am not personally familiar with Dr. Brook but you can ask him how many RPLNDs and specifically post-chemo RPLNDs he does a year. The other option would be to ask Dr. Toner who he recommends for the RPLND, I know that his surgeon was incredibly successful in at least one mate on here, whereas the local surgeon could not complete the first RPLND. It is always worth asking and if they don't want to be open and share, well then I personally would look at other options.

    Mike

    Leave a comment:


  • JoeTheAstronaut
    replied
    Sorry don't know Dr Brook - but hopefully Dr Toner can advise or recommend a surgeon?

    Leave a comment:


  • Darwin2015
    replied
    Another update , Iím flying to Adelaide to meet their top Urologist for a surgery consultation. It looks like RPLND is the next step for myself . Guys Iím just wondering is there anyway of checking how experienced Dr. Nick Brook is with the RPLND procedure , how many times he has completed the procedure. Iím definitely feeling a little anxious now , but thatís only normal. If itís a means to an end , I can finally get my life back on track , Iím happy enough going ahead with surgery. Just feel like Iíve come so far now , just donít want to leave anything to chance , the lymph nodes donít seem to be going anywhere .

    Leave a comment:


  • Aussieguy
    replied
    You have done the right thing requesting the referral to Dr Toner. I saw him about a week ago for my follow-up. I cannot recommend him highly enough. Keep us posted and please feel free to Private Message me with any questions.

    Leave a comment:


  • Darwin2015
    replied
    The referral has being sent to Dr. Toner , I need to see him for peace of mind at this stage . Thereís to many scenarios being thrown about with my oncologist, I donít know what to be thinking anymore . Thank you for the reply

    Leave a comment:


  • biwi
    replied
    Remember Dr E's words you posted on 12/17/17:
    After that chemo there should be basically a zero chance that you have persistent cancer with such minimal disease. From your description we would just recommend routine follow- up. There are testis cancer experts in Australia. I realize it is a big country but if you wanted a second opinion I would recommend Guy Toner in Melbourne.
    BEP resistant cancer is pretty rare, ESPECIALLY in low volume disease like what you had when you started chemo. RPLND would be appropriate if you are extremely concerned about a future relapse. But it likely isn't necessary at this point. I wouldn't even worry or think about second line chemo at this point. Please go through with your consult with Dr. Toner, I'm sure he can give you an accurate picture of where you stand and the chances of any relapse.

    Leave a comment:


  • Darwin2015
    replied
    Hey Guys ,
    Just a quick check in , maybe some advice .
    Itís being 6 weeks since I finished my BEP , Iíve had my 6 week post chemo AFP 13 , after two years my oncologist has finally said thatís my norm 😁. CT results came back , both enlarged nodes still the exact same size , from when first noticed 7 months ago both below 1cm.
    This is where the fun starts , PET Scan results still showing one node lighting up on the Scan .
    Man Iím so confused & so is my oncologist, my case is going before a group of specialist tomorrow to discuss my case , Iíve also sent a referral letter to Dr. Toner in Melbourne.
    I keep hearing that PET Scans should not be used for non-seminoma , thereís no change in my AFP , no change in size on the CT in 7 months , Iím just worried , could it be a cancer thatís resistive to BEP ? Or just dead tissue ? Oncologist says itís not teratoma as it wouldnít show up on PET Scan .
    Have any of you guys seen a similar case like this before?
    Iím just worried if go back on surveillance and it does end up being something nasty , I could end up in serious trouble?
    Or go ahead with surgery , find out itís dead tissue , Iíve just being thru BEP & Surgery for dead tissue .
    This cancer stuff really plays with your head 😓

    Leave a comment:


  • Darwin2015
    replied
    Hey Aussieguy ,
    Do you mind if I PM you & ask a few questions about Dr. Toner

    Leave a comment:


  • Aussieguy
    replied
    Hi mate,
    I have been reading your story on here over the last few days.
    I am just wondering whether you had made contact with Dr Toner at Peter MacCallum Cancer Centre?
    Dr Toner is my oncologist and I could not speak highly enough of him and his expertise with regards to Testicular Cancer.
    My case is a complex and rare one and I would not be alive without him.
    If you want to chat please feel free to send me a message.
    I also sent you a message and I hope you have consulted with Dr Toner.

    Leave a comment:


  • Darwin2015
    replied
    I finally noticed ha . All good , I found him . Thank you .

    Leave a comment:


  • Davepet
    replied
    Also, I noticed you were looking for Dr. Guy Turner not "Toner"

    Dave

    Leave a comment:


  • Darwin2015
    replied
    Thank you . Much appreciated .

    Leave a comment:


  • shabby
    replied
    Per https://www.petermac.org/users/assoc-prof-guy-toner:
    "Associate Professor Guy Toner is a Consultant Medical Oncologist at Peter Mac and Associate Professor of Medicine at The University of Melbourne."

    Perhaps contact PeterMac or UofM and ask.

    Leave a comment:


  • Darwin2015
    replied
    Originally posted by MattU View Post
    I’ve heard good things about Dr Guy Toner - if memory serves me right - from an Australian who had a germ cell tumor. I believe Dr Toner is in Melbourne.
    One last thing , has anybody got an email add for Dr. Guy Turner Melbourne , Iíve tried google , no luck . Iíll keep trying myself , just if somebody had it saved in a post or mail .
    Thank you .

    Leave a comment:

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