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lots of questions and no answers

BroadwayJoe's picture
BroadwayJoe
Posts: 10
Joined: Aug 2009

On August 12, 2009 I went into the Dr with what I thought was a hernia. It turned out my lymph nodes were swollen in my groin. He sent me for an ultra-sound and the next day I was in sugery having me left testicle removed! On the 20th of this month I got the phone call that it was cancer. I've since had a CT and the results show 3 more masses in the lymph nodes of my groin area. 2 on the left and 1 on the right. The tumor in my testicle was 100% seminoma, so I'm assuming that the rest is to. (But the Uro;ogist thinks the nodes are just swollen) Now I have A CT guided biopsy set for the 8th on the right node. This waiting for additional test sucks. I just want to start my treatment and get it over with. Does anyone have suggestions on how to de-stress while waiting?

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Hi Broadway Joe:

I don't have testicular cancer, but I'm a man with another kind of cancer. Since you are new to this, I understand if it might be freaking you out. You have a few days to go until the next deal - the waiting is hard. How are you feeling now? Good, ok? I know it's easier said than done sometimes, but try not to stress about the future - let things be and deal with the future when it gets here. If you are feeling pretty decent now, be glad for that. We all have strength and this disease tests all of us who have to deal with. Know too that there are other people out there willing to listen. Take care and keep me/us posted. Roy

BroadwayJoe's picture
BroadwayJoe
Posts: 10
Joined: Aug 2009

Hey Roy-
Some days are good, some are bad. I'm sure you are familiar with that. It's like riding a rollercoaster, one that you know will end wventually, but for me the ride is just beginning. It's taken it's toll already on a strained marrige, and I have a feeling I may be riding this one out alone by the time it's over with. Sad to say, but at this point I just want to get it over with and move on with my life. I had a bit of a rough night last night, I think all the stress and worry finally caught up with me. Now the next step is the CT biopsy set for next Tuesday the 8th. Then it's more waiting for the results, and finally I can start the next venture. Chemo and/or radiation. How long have been with cancer? How do you de-stress? Everyone around me tells me to just relax, but that just makes me want to tell them to f**k off, your not the one with the disease. I of course don't say that out loud, I realize that there only trying to help, but it dosent make it any easier.

Creek24
Posts: 7
Joined: Sep 2009

Hey BroadwayJoe,

I know exactly how you feel...many of us do. I too had seminoma and just finished with treatment 5 weeks ago. It took away my spring and summer but NOT my life! You need to think of this a bit differently than most things in life. We want to "get this over with and move on with life." I said that so many times I can't tell you. The treatment you will get will help you a great deal and you need to prepare for that. You are going to destroy that cancer and positivity is very important. Don't read too much on the web, be informed but also be aware that there is a lot of misinformation and generic information that doesn't point exactly to what you have or are going through. Try music...it helped me a lot. I listened to music in the hospital and walked the floor while listening to my ipod. Catch up on reading but read good up lifting stuff and the gloom and doom stuff that is out there. And talk to fellow cancer patients and survivors, share what is happening to you because so many others can help with their experiences. I found out about having a drug port installed from woman going through breast cancer...she was like an angel when she saw me wincing in pain as they tried to poke me with yet another needle. She told me about the port and it made a huge difference in my treatment. So find what helps center you....music, reading, movies or something else and prepare yourself with those comfort things as you travel this winnable journey!! Trust a fellow seminoma survivor, YOU CAN DO IT!!! I hope this helped a bit if not...write back I will try again. ;-)

Bookbuffrbm
Posts: 5
Joined: Aug 2009

Hi guys! My husband was recently diagnosed with stage 1 non-seminoma (he had stage 1 seminoma 15 years ago that was treated with radiation) - It is a roller coaster ride that the whole family is on. Our marriage was strained before the cancer diagnosis and of course it hasn't helped the situation. I do still love my husband and want to be there to support him (if he will let me). I know that he is on his own roller coaster ride with different ups and downs than I am experiencing. The best advice that I have received and that I can give is to try to take it one day at a time and maintain as much of your regular routine as possible. Try to find an activity that will help you reduce stress - walking, yoga, guided meditation, listening to music, watching movies on your PC/laptop or iPod, or get a favorite TV series on DVD to watch (my husband has been rewatching all 7 seasons of the West Wing). Try to communicate with your family about what you need as much as possible. You may need to be alone while your spouse wants to talk or vice versa - try to work together to figure out the best times to approach each other and offer each other support. As Creek said, the most important thing is to focus on getting over this and moving on with life. My mother, a 2x breast cancer survivor, says the same thing as well. The key is to get on with living!!! Best of luck to you.

BroadwayJoe's picture
BroadwayJoe
Posts: 10
Joined: Aug 2009

Thanks to everyone for the advice. I've stocked up on some books and went and got some new musical equipment for my guitars, so I can read and play to relax. The CT guided biopsy is next week (Tuesday) so I hope to know something by Thursday. Then the real fun will begin. At least then I will know more of were I am headed and how long it will last. My wife told me last night that I just need to relax, and that talking about it just makes it worse!!?? Of course I just kept my mouth shut as things between us are strained anyway. The last thing I need is to have more drama to deal with. Anyway, I'm off to try and do some yard work while the weather is still good. Hope everyone has a good holiday weekend. I may hop on the Amtrack and go see family for the weekend. -Joe-

Creek24
Posts: 7
Joined: Sep 2009

Please feel free to continue to ask questions...I had a lot and few people could help but the few I found, helped me a great deal. I am available if you need to talk.

Best of luck!
Creek

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Hey there - I think you've gotten some good replies to your posting. Hope these help. That might be a good idea about getting on the Amtrak and going off to see family - a change of pace. I do that sometimes - go over to Dallas where my brother is or to visit friends in east Texas. I have had stage IV cancer for 2 and a half years - right now I'm off treatment - we are looking at some diferent options. For me it's always been chemotherapy - radiation is not indicated for what I have. Stress comes and goes - I try not to let it get the best of me - sometimes I have to retreat, be alone and coming to this site and reading what others have to share and also sharing my story some has helped. I wish I had come here way back in the beginning. Realize this is going to take some time and please try to have positive thoughts that all is going to turn out to be good and that you will continue to be healthy. Having hope helps a lot. The music sounds good - guitar, yeah. I'll be sending positive thoughts your way. Remember too that you won't be alone - you have us on this site. Keep me/us posted. Roy

Creek24
Posts: 7
Joined: Sep 2009

Roy---very well said!!! You won't be alone...none of us need to be!

Creek24
Posts: 7
Joined: Sep 2009

x

BroadwayJoe's picture
BroadwayJoe
Posts: 10
Joined: Aug 2009

Today was, for the most part a positive one. I got some running around done and spoke with an old friend of mine who just happens to be an oncology nurse. She ran my pathology and initial CT report by her doctor and he agreed that the CT biopsy should be the next step, so I feel a little better about things. The waiting still sucks, but I guess thats just part of it. I did get out and mow the lawn, so that was nice. I must still be recovering from the surgery (it's been 2 weeks) as I had to take a couple rest breaks, but it felt good to do something. I even played a little on the guitar, but then I got tired again and had to chill out. So I have a questions for you Creek. It sounds like you did chemo. Did you do radiation as well? Were they at the same time? And with chemo is it everyday or once a week? I know everybodys different, but I figure some of the regiments must be the same. Were you able to take yourself to your treatments or did you need a ride to and fro? I've already checked into getting a port and if chemo is in my future, thats the way I'll be going, given a choice.

Anyway, hope all is well for everyone. -Joe-

Creek24
Posts: 7
Joined: Sep 2009

Hey Joe,

Doing some enjoyable routine stuff is good for the soul and for your head! Its helps keep you grounded and feeling that you are still very normal. So keep that in mind.

I had a very aggressive form of seminoma cancer. Mine was non-testicular and was centered in my abdomen. It was very pervasive and dense. It also rode up my back and neck and attached itself to my skull. So my treatment (at Sloan Kettering in NYC) was also very aggressive. I was put on a clinical trial that used three drugs in rapid succession and at very high doses (Taxol, cisplatin, and iphosfamide) otherwise known as TIP. I had chemo five days in a row for 7-8 hours each day. Then two weeks off--which were very very difficult to get through, then just as was feeling almost normal I would go back for 5 days and so on. This lasted for 4 rounds. I had to be in the hospital as this was very aggressive so they wanted to monitor me carefully. I couldn't imagine doing it as an outpatient (at least not this course of treatment). I did not have to have radiation as the cancer responds very well to these three drugs. It literally melts the cancer to nothing. My back pain and other related pain from the cancer went away after the first treatment--no joke--the first treatment! So i guess the short answer is, it depends on the type of treatment and the overall course. I hope that helped a bit.

Be well,
Creek

lineman's picture
lineman
Posts: 14
Joined: Jul 2009

the best way for me to figure out what treatments would be involved was by doing the treatment decision tool from this web sight. It told me every possible option. You can put in what you know, and then tweak the answers you don't know to see if anything changes. I played around with it until i put in about every cenerio that could be possible. It will tell you what types of chemo or radiation you should get and you can find out how it is given to you by googling it. I found many web sights that talk about chemo rigiments.
I did not have any radiation. only chemo. BEP. And from what i hear you will not be getting the same type of chemo. but that is just rumor. i am not sure about that. I have been able to take myself to and from chemo. There were only a couple days where i got chemo brain so bad that i shouldn't of driven. My doctor didn't give me a choice about a port. He said my veins look good and i get stuck with an iv every time. ENJOY the time that you feel good! I wish i would of done more before i started my chemo.

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