I'm Sick of hearing...

[boyce]

How great it is that I got Tc.

As we meet people and I continue to tell my story, both medical professionals and people on the street hear my tale and say, "Thank goodness it was Tc, that's the best kind to get."

Are you Freakin' Kidding me!!??

I pray for Danny every single day...and have since the second I walked past his room at Sloan and saw him cuddled up with his Mom in that teeny hospital bed. Some blessing this diagnosis is for him.

And for Jenny and the awful news she hears. The words are impossible to form for me, Jenny. I'm just sad to the core for you and your family.

And for Tammy who has bled and sweatted and cried for Anthony not every day, but every second of every day. And for Anthony who has Dr.s telling him 11 different ways to get better while "respectfully disagreeing" with each other consistently about how to get him there.

You know who's blessed?...I am. Those of us who are able to fight on are. But I call Bull**** on the people "congratulating" us for having a "good" cancer. This disease sucks out loud. I HATE it. While I can appreciate that if you haven't been through it, then you just don't know what to say when you meet a real live cancer patient, but PLEASE think of something better than "Thank goodness it was only Tc".

Thanks for listening to me preach, Tc choir. I'm devastated by Jenny's post. I'm sick with worry over Danny, and I am resolving that from this very moment on, I will no longer accept somebody else's appreciation for my diagnosis.

All cancer is awful. The next person "kind" enogh to tell me how good Tc is is hearing Tammy's and Anthony's and Jenny's story. Mine matters none.

So there!

[fuse929]

In my short time as a survivor, it has been my experience that many people who I tell my story to (friends and family who I have known me for 23 years +) simply don't know what to say when I tell them what I went through these last few months. Most of them just look at me for a few seconds and I can tell they have no clue what to say. Eventually, I get the classic "are you serious?" "I had no clue" "thank God you found it early" "thank God you are OK now" "I didn't even know you can get cancer in your balls." A year ago, if one of my young friends came up to me and told me they just had a month long bout with and survived cancer, I'm not sure I would have known what to say either.

All the TV specials and websites describe TC as one of the most curable forms of cancer on the planet, usually in the first line of the disease's description. In school, this is further ingrained, in males at least, in PE and health classes. I've never read or heard of TC as an easy cancer to go through, but I have read on multiple occasions that it is one of the easiest to cure and make a full recovery from.

No cancer is a "good" or "easy" cancer......all cancer sucks. But, i'm not offended when people say "thank God you got TC" because I know that the only reason they are saying that is because they know it has a very high cure rate. The means for getting cured can vary person to person, and are much more difficult for some then others (Anthony and Danny for example), but ultimately most get cured. The same can't be said for many of the other types of cancer out there.

When I hear the words "thank God it was TC" I'm content because I know that person knows the facts about TC, and cancer in general. It gives me hope that if they ever present symptoms, they will get them checked out asap.

Bobby

[Margaret]

I think so many people have Lance Armstrong as their only example of TC...and he was so amazing that they assume most people have a great outcome. He is a great role model but I think the exception, not the norm. He was also in such a high physical state.

I look at my husband, who has been lucky but he went through 4 full rounds of horrible (but needed) BEP and he is missing his hair, lost a testicle, has a scar from his port, has a big scar from his RPLND, and his currently walking around with a compression sleeve on...not the same picture that I think of when I think of Lance. But my husband was just as brave and fought just as hard. It is just not how the public sees TC.

the question I ALWAYS get is "Did they catch it early?" I have no idea what that means. You mean early enough that he will live, or early enough that it did not spread...or something else? It had spread...but he will live god willing. I never really know how to answer that question.

[honeybee]

Boy, do I agree! How wonderful it's this kind of cancer, how wonderful it's so "easy" to cure . . . how wonderful my 22 year old son will never have children? how wonderful my 22 year old son has lost a year of his education? how wonderful my 22 year old son will live with this fear for the rest of his life? To say nothing about how wonderful this has been for me and my husband? I get so scared for my son's future, but nothing anybody can say will take away that fear -- ever. I want this to have never happened. I wish people wouldn't minimize how horrible this is . . . I know they're trying to help, but comments about how "lucky" we are that it was tc do not help.

[fuse929]

Margaret

I agree that Lance is definitely the most high profile TC survivor to the masses, and in his advanced stage it probably was his athletic physical state that got him through. But, Tom Green has also served to educate young men and women about TC in the last 8 or 9 years since his TV special. Tom, who was in physical shape nowhere near Lance, was diagnosed with non-seminoma and had to endure the RPLND. He by no means had to go through what Lance did because his disease wasn't as progressed, but he was proof that any average Joe can succumb to TC and make a full recovery. I think his well documented experience is just an beneficial as Lance's story, because he showed that you don't have to be a super human athlete to survive the disease. He was just a wacky TV personality who a LOT of young people were familiar with.

Most people know that cancer spreads over time, but on the flip side, most people don't know about the various stages of the spread and their implications. When people ask questions like "did you catch it early" I think that is simply there way of asking what the situation is. Personally, I'm fortunate enough to answer that question with "yes, I caught it early and that saved me a lot of chemo/radiation/money.....make sure you check yourself often so you can possibly catch something early if it pops up." I believe the context of someone asking that question is two-fold.......they are asking if it was caught early enough to live, AND also early enough that treatments will be at a minimum. It isn't an easy question to answer.........but cancer isn't an easy disease to deal with. If a friend/family member tells me they were just diagnosed with cancer, my first question would be if it was caught early.......you can learn a lot about the situation from that 1 question.

I agree with Robert that this thread is very beneficial. Discussing stuff like this really puts new perspective on situations.

Bobby

[Margaret]

Bobby,

I agree with you regarding Tom Green. He did raise cancer awareness. But sadly, if you were to ask anyone in my family who Tom Green was, my mother would prob. cock her head to one side and say that she has no idea who that is. He made an impact with the MTV generation in the 90's for sure, which was a wonderful thing because it was that age group and demographic that needed to hear what he had to say. Over the last 10 years things have gotten more quiet about it and I wish they would re-play that segment about Tom now because I think it could do so much good.

I was not in any way saying that Lance was the only visable person with TC, just that to date he has been the most visable. So many people connect him with TC as a great success story. Tom's sense of humor is so unique that it is not something that appeals to everyone. Although I do find him funny and interesting.

I wish that in every high shcool and college across the country men like you and the others here could go and spread the word. I always think of the lives it could save. Robert made some really excellent points about waiting.

Boyce and I lost a friend to TC 10 years ago and of course we never would have dreamed it would ever happen to us. If not for his friend Johnny getting TC and losing his life to it, would Boyce have thought to go to the doctor and be agressive when something was not feeling right.

Thanks for bringing up Tom Green, good point.

M.

[Fed]

(Note: I moved the thread to the survivorship discussions because it fits better here)

But I call Bull**** on the people "congratulating" us for having a "good" cancer.

I work with cancer every day. There is no such thing as "good cancer." Today I went to a brain tumor meeting, and just seeing those nasty glioblastoma cells and imagining them sucking the life out children my daughter's age is infuriating.

A little while ago I realized that you really cannot expect people on the outside to understand fully the baggage that comes along with a cancer diagnosis. I see this even in my wife. About 6 weeks ago, I started freaking out because I was starting to have lower back pain, but I kept it to myself. One day, my wife saw how stressed out I was, so I told her that I was afraid of a relapse, and she started laughing. Needless to say, I was furious, but then I thought, "how could she understand?" She hasn't gone through this -and I hope she never does, but the harsh reality is that cancer will change your state of mind. There's some sort of reprogramming of one's way of looking at things, and, in my view, it's inevitable.

Yes, testicular cancer is highly treatable and in the vast majority of instances curable, but the bottom line is that it still is cancer, and it has to be treated as such. I think the worst quote that I heard is, "well, at least you got it while you're young," and my response is, "yeah, all those kids in the pediatric oncology ward have it great, then." Then, like Robert said, I think about Cussy and Derick, and I have to contain myself so I don't lose it.

What Margaret says is key. Education is extremely important so people know what to look for, and teaching boys in high school about the need to do self exams and be aware of their bodies will definitely go a long way. It reverts back to one of the key points that Scott and I brought up to Capitol Hill on LIVESTRONG Day: using the knowledge that we have right now, we could prevent 1/3 of all cancer deaths today.

Boyce, thanks for bringing this up (anger and all). This is a subject that can get me very riled up, and it's good that everyone is using this channel to let this out.

[GABRIEL]

Education is extremely important so people know what to look for, and teaching boys in high school about the need to do self exams and be aware of their bodies will definitely go a long way.

This is so true! Here in Eastern Europe,Romania, I had not the chance of getting proper education on self-examing and other specific signs, I realised, only after getting the disease, how important is to catch it early and to be treated properly.

[Russell's Mom]

here too

Great post. The first night that Russell was diagnosed it was instant insanity and terror. Who knows why, but I drove him over to the hospital that I work at. I went into the ER and spoke with one of our best ER doctors. His words to me..."thank goodness it is TC!" Because of my respect for him the words were a life line. Because of years of work, I understood what other cancers look like. We are still waiting for the first post-op CT scan results. Russell still has chest pain...could be an embolus. My body aches all the time, my mind is nearly gone, yet there is gratitude for the opportunity to acheive a long and healthy life. I remind myself that to be this tired and to work this hard can not be in vain. As with others, when I look back, I can see that our lives have gone deeper than at any other time in our lives. I watch Russell walk straight to people who are suffering without a blink in his eye. He knows and now he can truely be there for himself and others. It is an odd arrangement....this life.. !! Could be worse, could be better. Will try to do this day!!!!! Russell's Mom, Sharon

[Margaret]

Sharon,

I could almost feel you aching as I read your post. And I can relate to those pains. It is a mental worry that ties your bowels into knots, cramps your stomach, makes the pressure in your head seem unbearable, and your heart zoom along at what feels like thousands of miles per moment. I laughed the day I left the doctor's office, which was exactly 3 days and 6 hours after we learned my husband had cancer and I said to myself "how can he say nothing is wrong with me...EVERYTHING hurts!!" But it makes my heart even sadder that I can't make you feel better. I wish you were in Raleigh, I would take you to dinner and try and make you smile. I pray that the scans come back good and you are here with happy news. I pray for peace that comes with a cure. A cure that you both deserve.

Many hugs and prayers,

Margaret

[dadmo]

Yes, we’re one lucky bunch. It’s such a relief knowing that I won’t have to deal with those annoying grandkids. Nancy and I can just sit by ourselves in the quiet. I’m sure that Jason feels doubly blessed by not only having no children but he is unburdened by having to leave anyone anything. Such a joy it must be to know your going to grow old all alone, no brothers, sisters or children. Doe’s it get better then that. Oh yeah I forgot the sheer pleasure of perhaps being one of the truly lucky ones to have the chance to survive chemo induced leukemia or a secondary cancer because of the scans. Such opportunities for these young men. Ain’t cancer for our children just special? I guess the only good to come from this is that neither Nancy or I have had to see an optomologist for dry eye.

[Margaret]

Yes, we’re one lucky bunch. It’s such a relief knowing that I won’t have to deal with those annoying grandkids. Nancy and I can just sit by ourselves in the quiet. I’m sure that Jason feels doubly blessed by not only having no children but he is unburdened by having to leave anyone anything. Such a joy it must be to know your going to grow old all alone, no brothers, sisters or children. Doe’s it get better then that. Oh yeah I forgot the sheer pleasure of perhaps being one of the truly lucky ones to have the chance to survive chemo induced leukemia or a secondary cancer because of the scans. Such opportunities for these young men. Ain’t cancer for our children just special? I guess the only good to come from this is that neither Nancy or I have had to see an optomologist for dry eye.

Dadmo, this made me cry...I don't know why this hit me like it did....this is just so sad..I still hope you get those grandkids one day. From what I can tell, you would be great the job!

m

[TCLEFT]

Bill,
Add attacking a Man's sexual identity to the list (yeah, yeah, with HRT you can lead a normal life (those TC2ers handling this psychologically are truly men of steel)), as well as fear of passing it on to your Kids if you're fortunate enough to have them and I'd say you hit most of the demons this cancer involves (I'm sure there's more lurking in my nightmares). I wish you, Boyce and everyone who has ever been effected by this bullsh*t nothing but the best your future can offer. The good news is we're not alone. The bad news is we're not alone.
Mark

[jaybird]

This is what makes this forum so great. It gives us all an opportunity to talk about how cancer affects us knowing that everyone here understands.

Over the past 7 years of survivorship I have diagnosed myself with skin, throat, kidney and several recurrences of tc cancer (all symptoms cured by my oncologist telling me to chill out). My friends/family love to kid around with me and call me a hypochondriac b/c I always think an ache or pain is some form of cancer. Even though I laugh along with them (because it is kind of funny) what I never let them know is that inside I truly am scared. To me that is the burden of being a cancer survivor (or co-survivor). You can’t explain to people the fear you get to live with the rest of your life.

[Michael112]

Bill,
Add attacking a Man's sexual identity to the list (yeah, yeah, with HRT you can lead a normal life (those TC2ers handling this psychologically are truly men of steel)), as well as fear of passing it on to your Kids if you're fortunate enough to have them and I'd say you hit most of the demons this cancer involves (I'm sure there's more lurking in my nightmares). I wish you, Boyce and everyone who has ever been effected by this bullsh*t nothing but the best your future can offer. The good news is we're not alone. The bad news is we're not alone.
Mark

Every doctor telling me they dont like the idea of me being on HRT at a young age. Not having backing from ANY hospital with TRT, not knowing if one day I am gonna be left with no medication and ending up getting arrested and charged AGAIN for having mood swings, maybe ending up in jail with low testosterone.. what a mix.