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New guy in town needing some advice

Posts: 7
Joined: Oct 2012

Well my recent sudden journey started Friday October 12th, actually earlier but I didn't realize I had a ticket for this ride until then. I had been feeling off for a month or two but between working, going to school full time, being married and having 2 children I wrote most my symptoms off to stress, fatigue or what have you. I finally realized something was off that Friday in the shower when I was rinsing off and noticed my testicle was 3-4 times larger than it should be and very hard. I ended up waiting until Monday morning the 15th to call my Dr who told me they were booked an couldn't see me, after explaining what I was going through they directed me to the emergency room. I checked in around 8:30 am Monday and after blood works, ultrasounds and some other tests I got the news around 1 pm that I had testicular cancer.

I was in the hospital that day until about 3:30 pm and by the time I left I was scheduled for surgery to remove righty the very next morning, Tuesday the 16th. Surgery went well and I was released later that same day but having to go for a CT scan the following Monday the 22nd. So I went to the Dr. today for all the test results and prognosis for what is to come, low and behold he had good news for me!! I was diagnosed with Stage 1 cancer, the tumor they removed had 4 types of cancer in it, the CT scan came back negative, there were no other masses found but there were a few areas that were suspicious for infiltration (or something like that). All in all I thought this was very good news, so this is where the needing some advice part comes in.

I was given 3 options for treatment, actually 2 because chemo was one option but chemo would only work on 3 of the 4 cancers found in me and the Dr. thought that should be the last resort, plus he wanted to save them in case they were needed later. So option 1 was Surveillance, the wait and see approach, monthly Dr. visits and many more CT scans to come, which doesn't really appeal to me. I am not big on sitting back and waiting to see what happens and hoping for the best, there is a suspicion that it may have spread and just not large enough to see yet. I have very bad luck and am not a gambler, so to me this option does not sound very appealing.

The other option is having another surgery where they go in and remove my lymph nodes, it is my understanding that this is the next stop on the testicular cancer train, and that once the lymph nodes were removed any remaining evilness would be removed and I would undoubtedly be cancer free after this procedure. This is a much more appealing solution to me, even though I don't particularly want to have another surgery (I also had spinal fusion surgery just over a year ago). But to me taking control of the cancer and not letting it control me, removing the possibility of it spreading and giving myself the peace of mind knowing that it is out of my body makes it worth it. So for all you guys out there that have been through the trenches I am asking for your opinions and advice, I want to make this decision soon so I can move forward either way. Thank you in advance I look forward to your responses. :)

Posts: 2
Joined: Nov 2012

Hey, well I had stage 2b or something like that, I was 15 when I had it so I paying attention to all the details wasn't high on my list. I really didn't have options besides chemo but I also had teratoma which is chemo resistant so I am guessing that is always what you got. So went the chemo route, it blows pretty bad but I was cancer "free" (get to that part later).

My chemo was a week on, a week off which lasted a total of 5 cycles. So probably not as long as some of the others here. But I found out I was allergic to A LOT of drugs and all which were pretty severe reactions but one. I went in only allergic to penicillin and left with 8 others haha. So there is that risk to keep in mind with chemo, which is probably pretty rare but you never know. There are other things to keep in mind with chemo, such as taking time off of work, I was young enough and I just had to deal with school but they worked with me. Chemo also is spendy, along with sperm banking, driving there and back, hotel costs (I lived 2 hrs away from where I was getting treated), also very time consuming since I went in around 6am and left around 6pm Monday - Friday. Then there are times where you have to go in on your weeks off to get fluids at least I had too. Everyone is different tho. You also have to go back for check ups (xrays, ct scans and blood work) after chemo is done for a few years.

As I mentioned earlier I said cancer "free". I am 23 now and when I moved to Rochester, MN (was treated in Fargo, ND), I was having really bad pain in my groin and back. Turned out I had a mass a little smaller than a softball in between my kidneys in a lymph nodes. It was immature teratoma and was left over from chemo. It had spread to other surrounding lymph nodes and I had to have a RPLND which removed 30 lymph nodes. Mayo said they don't know why I never had the surgery in the first. So now I have to deal with all this cancer stuff again.

I guess what I am trying to say is that you should talk to your doctor a little more and probably think about having the surgery. Having to go through cancer again 8 years later is a real pain in the *** being older.

Hope this helps.

Posts: 7
Joined: Oct 2012

Thanks for your reply, it gives me some more peace of mind that I made the right decision. I had the RPLND surgery 2 days prior to your response. I had a horrible experience with this surgery, I had some complications during recovery with my bowels/stomach not "waking up" from the anesthesia and had to have the NG tube reinserted up my nose and down into my stomach where it stayed for an additional week. I ended up being in the hospital in tons of pain for 9 days, I am still recovering at home now. The pain is SLOWLY subsiding, but it was all worth while when I went to the Dr Monday and got my pathology results back. They also removed 30 lymph nodes from me and luckily they all came back benign. Even though it appears that the surgery may not have been necessary at this time it is comforting to know that I took control of the situation and made sure to be cancer free. After hearing your story and hearing how it the beast came back to you and you had to have the surgery years later I feel even better about my decision having the surgery now. Also after researching chemo that option did not sound like much fun at all, plus it would have only worked on 3/4 of the cancers they found in me so that wasn't even an option. Luckily I already have two beautiful children and didn't plan on having any more so I didn't have to go through the whole sperm banking thing. Thank you so much for responding and sharing your story, it gives me a great peace of mind and makes me even more confident in choosing to have the RPLND surgery now. Good luck to you young man and thanks again!

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