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Surveillance vs chemo I honestly do not know..

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  • Surveillance vs chemo I honestly do not know..

    Starting a new thread followed on from here.

    http://www.tc-cancer.com/forum/showthread.php?t=14271

    Hey All,

    So yesterday I had my first meeting with my oncologist to discuss the path report in more depth and also treatment options. My impressions of my oncologist were very positive. I had researched a lot since this started and had some very directed questions to ask which he answered clearly and laying out the pro's and cons etc. One was about the immature teratoma component of my tumor which is stated on the path report 3 small foci.

    He seemed to think that this was not too bad and that although it is difficult to treat he felt that the report read like the pathology department were not 100% sure immature teratoma was correct. My case is going to be discussed tonight with a group that meets every three months. He told me there are 8 pathologists, 4 urologists and 4 oncologist who attend these and they will all discuss my case, results and treatment to ensure a correct plan is put in place. I found this very encouraging as more brains the better.

    With regard to me treatment he could not say 100% what he thought was the best course of action as we need to see the blood results. But based on the the tumor as it currently stands he thinks perhaps surveillance would be best for me. That way if I do fall into the 15-20% that relapse they can use the chemo option then.

    He was also very clear on the effects of chemo both long and short term. He stated that long term the only evidence based on studies for people who have had it from 1978 have shown no long term issues apart from slightly raised blood pressure as people approach their 50's. He also said that 40% of those who choose chemo are able to have children after but this is by no means guaranteed. His thoughts on cancer returning if I had the BEP would be 1% or less. I thought he was being optimistic on this so any thoughts would be appreciated.

    So as it stands I have to wait until next weds where they will have my updated blood tests which hopefully will have normalized. Then I have to make a decision as to what treatment I would like to go forward with.

    1.) Options are surveillance with 6 weekly CT scans and monthly blood tests.
    2.) Two cycles of BEP

    I currently have no idea what I should do.I want security but chemo is going to keep me out of work for a while. I can afford the time it will take but its a big step when surveillance maybe available.

    I also have no children currently and my girlfriend and I really want them. She has just got pregnant see here but still early days. Sperm banking seems wise either way. http://www.tc-cancer.com/forum/showthread.php?t=14433.

    So if you have any thoughts or opinions then please chip in as the more info the better when making this choice.

    Hope you are felling well,

    Dave

  • Davepet
    replied
    Congrats Dave! We love hearing positive outcomes, and it gives hope to those just starting their journey. Thanks for the update.

    Leave a comment:


  • Mike
    replied
    Wow, such an awesome update to read!!! Congratulations on your 10 years of survivorship and sheers to many many more.

    Mike

    Leave a comment:


  • davidhanson90
    replied
    Well today marks 10 years since my orchiectomy. An update from me. Not been here in a while.


    My partner and I decided to move back to UK from Australia as our first child was due and was worried about relapse. Also to allow our kids to see their family growing up.

    10 years later we now have a 9 year old and 7 year old.

    I've been on surveillance with the Marsden for these last year's but now I'm finally discharged so this feels like and end to this story.

    For those starting their journey i wish you all well. At the time I was freaking out but today I rarely think about it. I got lucky and didn't need chemo or after treatment. For those going through a much tougher journey do keep fighting. You're the warriors and you will beat this disease.

    Leave a comment:


  • CW406
    replied
    Originally posted by Fed View Post
    For treatment purposes, though, this is considered a mixed germ cell tumor making it automatically a non-seminoma . That said, I think that surveillance is the way to go here precisely because of what CW406 mentions regarding teratoma not being responsive to chemotherapy.
    Well huh, I guess you learn something new every day. I'd always figured that the use of BEP as adjuvant therapy in mixed germ cell tumors was due to the presence of a nonseminomatous element which would require the tougher treatment to kill. In this case, where there is no nonseminomatous element that is killable with chemo, I'd figure it to be an exception to the rule.

    Fed - I realize that there are very few cases like this, since this is literally the extreme (limit as tumor type approaches pure seminoma) but would there be any reason why an oncologist would suggest that the case be initially treated like a seminoma (e.g. with adjuvant carbo), and then just wait and see if any teratoma pops up and needs to be excised?


    That's just my mind running away with things and me thinking out loud though. What is important here is that you've made a choice, and I think it's the right one! Looking forward to hearing about future "all clears"!!!

    Leave a comment:


  • MrsB
    replied
    Sounds like a great option for you and I'm glad you are comfortable with it. Just don't get lax on your followups after you get a few all clears!! Being optomistic here Keep us updated on how things are going.

    Leave a comment:


  • Aegean
    replied
    Originally posted by davidhanson90 View Post
    I think positivity will be my guiding influence going forward and just enjoy each day as it comes.
    Good mantra. Congrats on making a decision... now stick to your appointments like glue!!

    Leave a comment:


  • davidhanson90
    replied
    Hi all,

    Well today I went to the oncologist for the follow up and my blood test results from the sample taken post surgery. Had the sample taken Friday and they have confirmed all my tumor markers are now normal.

    I spoke to the oncologist about the chemo and immature teratoma and he said that it was not chemo that is recommended for that but the 3 microscopic glandular formations which looked to be embryonic carcinoma. He did say however that some very immature teratoma's can respond to chemo.

    He was clear not to influence my decision in the appointment but said I had the option of preventive chemo or surveillance going forward.

    So with that I have chosen to take the surveillance route do to a number of factors going in my life. It now means CT scans every 4 weeks for the next 6 months and every 6 weeks there after.

    After I told him what I felt was the best option for me he also agreed with me and said it was what he would have recommended.

    So all in all I feel I have reached a point where at least I know what I need to do and have to wait to see how it unfolds. I think positivity will be my guiding influence going forward and just enjoy each day as it comes.

    Leave a comment:


  • davidhanson90
    replied
    That's a very good point about the chemo option. I will discuss it with my oncologist and see what he says.

    It seems this immature teratoma component seems to have put me in a different camp to the majority. Am I right in the fact that its rare?

    Having more blood taken today so pray it shows normal levels on my hcg and ld5.

    Leave a comment:


  • Fed
    replied
    Originally posted by CW406 View Post
    Wait, sorry to jump in late here, but this does not make any sense. The tumor is 99% seminoma and 1% immature teratoma and you're being offered 2XBEP as an option? This does not follow since 1) BEP is not a standard adjuvant treatment for seminoma and 2) teratoma does not respond to chemo. I understand that this is being treated as a general nonseminoma because there is indeed some nonseminomatous component to it, but this seems to me to be a fringe case since there is no individual component present for which BEP is a standardized treatment.
    For treatment purposes, though, this is considered a mixed germ cell tumor making it automatically a non-seminoma . That said, I think that surveillance is the way to go here precisely because of what CW406 mentions regarding teratoma not being responsive to chemotherapy.

    Leave a comment:


  • CW406
    replied
    Wait, sorry to jump in late here, but this does not make any sense. The tumor is 99% seminoma and 1% immature teratoma and you're being offered 2XBEP as an option? This does not follow since 1) BEP is not a standard adjuvant treatment for seminoma and 2) teratoma does not respond to chemo. I understand that this is being treated as a general nonseminoma because there is indeed some nonseminomatous component to it, but this seems to me to be a fringe case since there is no individual component present for which BEP is a standardized treatment.

    I've been off the forum for some time and just tried to catch up with your back story right now, but am I missing something?

    Leave a comment:


  • MrsB
    replied
    In your position I would probably lean on the side of surveillence. If we had not had the lymph/vascular component of my husbands path report, that probably would have been us as well, but that put his relapse rate higher than we were comfortable with as far as the "wait and see" option. He did not want this hanging over his head. Also we are at a different stage in our lives, older and done having kids. Plus, he has been pretty much out of commission work wise since this whole thing started. He is self-employed so not sure if that is better or worse. His job is physcially demanding and he is not up to it at all right now. It is a tough decision and only you can decide what is right for your family.

    Leave a comment:


  • S P
    replied
    Originally posted by davidhanson90 View Post
    He was also very clear on the effects of chemo both long and short term. He stated that long term the only evidence based on studies for people who have had it from 1978 have shown no long term issues apart from slightly raised blood pressure as people approach their 50's.
    I don't think this is fully accurate, according to the literature out there on the subject which I'd strongly encourage you to explore. This is a nice primer here:

    http://www.cancer.net/patient/Cancer...37;20Treatment

    Chemotherapy certainly isn't a "free ride" in terms of being free of potential long-term health issues by any means. Some of the other papers I read linked chemotherapy to being twice as likely to develop cardiovascular disease, leukemia, secondary cancers, and other things down the road with the hard data. Literally a matter of picking your poisons and which risk factors you were most ok with. Hardly an easy choice.

    I agree with Dave. If surveillance is an option that's probably what I'd do, especially if you're in the 15-20% risk of relapse category which is pretty good. That means there's a 80-85% chance that you're already cured. So long as you don't have any issues with maintaining the surveillance schedule or issues with this hanging over your head, don't break out the big chemo 'guns' unless you need to, IMHO.

    Good luck with your decision! I know it's not easy.

    Leave a comment:


  • Davepet
    replied
    Well, you've got to wait for the blood tests before you can make this decision, but if they come back OK, I'd personally choose surveillance. Yes with 2xBEP now, your chance of relapse is in the 1-2% range, but you've got an excellent chance you are already cured & need no chemo.

    In the event you are not cured & it comes back, your cure rate is basically the same, the only difference is they would now go with 3xBEP. As long as you are willing to adhere to the strict surveillance schedule they will catch any relapse very early & you will still get a single digit cure rate, so why not wait & see?

    Dave

    Leave a comment:

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