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Shocked by what's going on but starting to get my head around it.

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  • Shocked by what's going on but starting to get my head around it.

    Hi All,

    I came across this site today and must say that I am very glad I found it. The last two weeks have been a little bit crazy for me and hoping sharing with fellow sufferers and survivors will help me through.

    I am 33 guy who over the last month noticed a growing and firmness in my left testicle. I had no pain during this but I went to the doctor two weeks ago who sent me the next day for an ultrasound. The ultrasound showed a lump inside my testicle which was bigger than I thought it could be. 3.9 x 2.7 x 2.4cm. As part of the ultrasound they also checked my epididymes, para-aortic region and my left kidney which the report said appeared normal and showed no sign of lymphadenopathy. They scan appeared to show the mass was contained within the testicle.

    The next day my doctor sent me for a CT scan of my Chest, Abdomen and pelvis. I got the results of this from my urologist last monday. The rough details of it said that for the chest region lungs and pleural spaces are all clear, no focal pulmonary lesion, no lymph node enlargement or pleural or pericardial effusion seen.

    For abdomen & pelvis it said there was no lymph node enlargement no abnormal free fluid or solid focal lesion. The liver, spleen, kidneys, pancreas, adrenal glands outline normally. The abdominal aorta is normal and no focal destructive bony lesion is seen.

    The final statement of the CT scan said there is no evidence of metastatic disease.

    Straight after the urologist discussion on the Monday I was taken for blood tests and Tuesday morning (Less than 24 hours later) admitted for surgery for a radical oridectomy. I have spent the last 4-5 days recovering at home.

    So now after I can take stock of what has happened I would really like to know what I face going forward. I have another appointment with the Urologist who will have the results of the pathology of the removed testicle. I have just moved to Australia literally a month ago so this is not how I planned on starting my life here. I would appreciate if people could give me some rough guide as to what I should expect going forward with regard to treatments and timescales. I know it depends on results but just rough would do.

    I also have just started a job so I need to work as much as possible over the next few months but I have a feeling this could be difficult depending on treatment. Were other suffers able to work throughout? If not I may have to consider going home to family.

    Its all too much to take in but burying my head in the sand is no answer.

    Looking forward to hearing from you and making new friends.

    Best wishes,

    Dave Hanson

  • davidhanson90
    replied
    Started new thread here as more appropriate with oncologist meeting

    http://www.tc-cancer.com/forum/showt...261#post143261

    Leave a comment:


  • MrsB
    replied
    No, he really didn't give us percentages of long term affects. The research I did had most of the percentages pretty low. We felt the good outweighed the bad in our situation. I am glad I did my research because our oncologist wasn't overly informative. Maybe I didn't ask as many questions because I already knew pretty much where we were headed. MrB is self employed so able to adjust his work schedule as needed. He runs a salvage yard and farms, not much farming going on right now and we have a crew in cutting and hauling iron so that is very helpful

    I really hope your oncologist can explain your pathology report better and let you know how significant that 1% thing is. Let us know how it goes and good luck! Don't be afraid to ask for a second opinion if you are not comfortable with his answers and there are no dumb questions, ask anything you want to know and make sure you understand the answers

    Leave a comment:


  • davidhanson90
    replied
    Originally posted by MrsB View Post
    The oncologist told us that his relapse rate with treatment was about 2-4%.
    2-4% Is very good. Did you happen to get any information from your oncologist about long term effect on life expectancy and also the % of other chemo related issues later?

    I see my oncologist on Wednesday and I am totally unsure what to do. Hopefully the oncologist will provide me with the information I need to make a decision.

    I take it MrB is off work throughout his chemo?

    Dave

    Leave a comment:


  • MrsB
    replied
    Sorry I am slow getting back to you. I am on call for my job this weekend and have to stay at my mom's so had to hunt up the website. The oncologist told us that his relapse rate with treatment was about 2-4%, much more comfortable with that. He also said 85% cure with the I/O for my husband but I just couldn't agree with that based on his type of cancer and staging. I know, he is the expert but still, my research said closer to 50% because of the vascular/lymphatic invasion on the the pathology report and those were also the odds Dr. Einhorn gave me when I e-mailed him about treatment options. He said surveillence was still an option or BEP X 2 or RPLND. We choose the option we felt was best for our situation and family at this point in our lives. There is no "wrong" options, just different for each case. Have you found out anything new?
    Thanks for the good wishes for my husband. He has a great attitude and other than being very fatigued, is doing great with his treatment. We are done with the first 5 days in a row, he will now get 2 Bleo doses each a week apart then start round 2 a week later. He gets his blood counts tomorrow so will see how that is going as well.

    Leave a comment:


  • davidhanson90
    replied
    Originally posted by MrsB View Post
    . We choose chemo because there was about a 50% chance of a relapse in the next year based on his type of cancer and pathology report.
    Hi MrsB,

    I have heard about this relapse rate and it is mentioned here.

    http://www.tc-cancer.com/about/nonseminoma-stg1.html

    In this article is quotes around 25% chance of relapse for nonseminona with no spread. Which means 75% chance of no relapse but that doesn't really help me make a decision. It still seems like a huge gamble. I also have no kids but was planning to do this soon. Spoke to cancer nurse about sperm banking so getting that sorted asap.

    Can I ask, by taking the chemo option did your oncologist provide you with a % on the chance of relapse?

    Please pass on my best wishes to MrB. Let him know we are wishing him well.


    Dave Hanson
    Found lump 18/02/2011
    Ultrasound confirmed mass 23/02/2011
    CT Abdomen, pelvis, chest (clear) 24/02/2011
    Right I/O 1/03/2011
    99% Seminona <1% Unknown germ cell 10/03/2010
    Staging T1 - 1A 10/03/2010

    Leave a comment:


  • davidhanson90
    replied
    Originally posted by spcchap View Post
    "Why should I learn this new software, I don't know how long I'll be here to use it."

    spcchap's a positive attitude all the way is what I am planning and I too have these thoughts but its to be expected as this is a life changing event. But reading on here the cure rate is high and the treatments have come a long way so always think that straight after these thoughts. Its helping me.

    With regard to your recover I think thats sounds about right. I felt very tired 3 days after surgery and was taking sleeps during the day. Its a combination of recovery, stress and hormonal changes so its all natural.

    My incision wasn't inflammed so keep an eye on that. It was sore when I stood up and felt like sharp stabbing pains at time but that has gone. Keep posting as we are in this together.

    Leave a comment:


  • MrsB
    replied
    Dave, I think the hardest part was the unknown, had it spread, what type was it, what were the treatment options? Once we got all the info and met with the oncologist I felt much better, not happy that my husband has to go thru chemo, but comfortable with our decision and confident that we can get thru this and get on with a normal life. We choose chemo because there was about a 50% chance of a relapse in the next year based on his type of cancer and pathology report. He did not want this hanging over his head. We have 4 children and were done having kids so didn't have to consider the fertility part of treatment so that was helpful. Definitely do your research so you know what some of the options are, not all oncologists are good about explaining everything and if you go in there knowing more, you know what questions to ask, etc. Hopefully he can explain your pathology report so you have a better idea of where you stand with treatment options. Keep us updated. We are here for you Hubby finished day 4 of his first round of chemo today. Feeling well for the most part, a little tired but still able to eat and drink fine, etc.

    Leave a comment:


  • spcchap
    replied
    I work in IT myself, so I pretty much sit most of the day too. I am finding it hard to concentrate -- not only because I am tired, but because my mind constantly wanders. I hate to say it, but sometimes I think things like: "Why should I learn this new software, I don't know how long I'll be here to use it."

    I am still at home until Monday, but I take two naps a day, before and after lunch. Each nap is about 3 hours! I hope it is just recovery from the surgery and not a long term thing. My scar feels inflamed too. I can't wear underwear or pants yet. I wear some soft pajama bottoms that I pull up over my belly button so as not to rub my scar.

    My appointment in on Wednesday, and it can't come soon enough.

    Sam

    Leave a comment:


  • ajtai
    replied
    Shocked by what's going on...

    Hi Dave:
    Sorry you had to join the forum, but you will find great support here. My son is also 1A (diagnosis was 2 months ago) and according to all, that's a great spot to be in. He's chosen surveillance and he has no seminorma, only non-seminoma; 35% EC, 5 Chorio, 50% Teratoma and 10% Yolk Sac. So, although he has a 75% percent chance of not relapsing, there is always that chance. Still, it looks like you are in a very good position, given that you have TC, and I will only echo what someone else mentioned in an earlier thread. STart researching the options before your visit with the oncologist and try to figure out what will make you the most comfortable- with primarily seminoma, I am not too familiar with the options, but figure out where you are in your life and what you think you'd rather handle, as well as when. My son is only 19 and he felt comfortable with surveillance, although granted, all three doctors we took him to recommended that. He asked all of them what they would do in his case, and they were unanimously honest, I believe.
    And, of course, a second opinion is always paramount in my over researched mind, but that is just me.
    Best of luck to you with your decision,
    Astrid

    Leave a comment:


  • davidhanson90
    replied
    I know what you mean about being tired. I went back to work on Monday and after the first day I was exhausted. I'm a software developer by trade and thought sitting down all day wouldn't have been so bad. I was going to bed at around 8pm each night and sleeping through to 7am which is unusual for me.

    As the week progressed I have found myself with more energy however and more like myself. After the news yesterday I am wondering how much stress will play a factor in my energy levels today.

    Do keep me posted on your results. I wish the best for you. I still feel cheated that I missed out on a full seminona by less than 1%

    Good luck,

    Dave

    Leave a comment:


  • spcchap
    replied
    I get my results next week. I am on pins and needles. I'll post what they find so we can compare. I am tired all the time now, and worry about going back to work next week. How has your work been?

    Sam

    Leave a comment:


  • davidhanson90
    replied
    Hey Mrs,

    Been a bit emotional my end this afternoon. Feel lost in all this and scare myself so much with the what ifs. I know I should be positive but it plays over over and over in my mind.

    The pathology report says that the germ cells are of an uncertain type and at one point say's "Alternatively, the cytokeratin and CD30 staining suggesr embryonal carcinoma as a possibility." I suppose there are no hard details on such a small result.


    Dave Hanson
    Found lump 18/02/2011
    Ultrasound confirmed mass 23/02/2011
    CT Abdomen, pelvis, chest (clear) 24/02/2011
    Right I/O 1/03/2011
    99% Seminona <1% Unknown germ cell 10/03/2010
    Staging T1 - 1A 10/03/2010

    Leave a comment:


  • MrsB
    replied
    I'm sorry you have to find yourself here. I really don't know enough about the 1% teratoma thing to give you an opinion. My husband has 60% embryonal carcinoma, 40% seminoma and had vascular/lymph invasion and just started BEB X 2 this week. So far he is doing pretty good with the chemo. Teratoma can be tough to deal with as I've heard it doesn't usually respond to chemo and can change characteristics. I think it may require surgery but with such a small amount I'm not sure how significant it is, sorry Hopefully your oncologist can tell you what the risks are and help you make the right decision for you. Where parts of your report are questionable, you may want to get a 2nd opinion on the pathology and the possible treatment options. Let us know how things are going and hang in there.

    Leave a comment:


  • davidhanson90
    replied
    I don't know about other treatments. My urologist mentioned the chemo but I am unsure how often people go for this and the long term life expectancy effects.

    I forgot to say the staging has been classified as T1.

    Leave a comment:

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