My world turned upside down

marsman

Man!..I went for a check up at the urologist and ended up on the OR that night.I'm still freaked out over the orchiectomy and everything !!!!..Now I'm stating to go through the Ct scans and the pet scan has been scheduled and radiation!!..I'm scared as hell!! My kids don't even seem to care and I feel angery and alone like no one understands.My wife acts like shes afraid to even touch me now!! Don't know how to deal with all this!!Any help would be a God send!!!..Thanks in advance!!

jnigra

Hi read your posting. The real problem stems on how long you waited to go to the doctor. Testicular cancer is 99$ curable in most cases. I had a orchietomy and chemo and I was supposed to have a LRPND, removal of the lymph nodes. Here I am 1 year later, cancer free. It has been a long haul. I also opted for the testical replacement. It is not all that one may think, but it does help. It will all work out. Cancer is a scary thing and your wife is probably afraid right now and going through her own emotions. You can email me at jnigra@a1printingplus.com and I'll be happy to chat with ya. I wish I had found this site during my treatment rather than after to kinda have someone to talk to going through this rather than after the fact, so if Ic an help, drop me aline.

Later.

abartender

Been there done that, seen on a thursday cut on a tuesday,, the big misconception with the big c is if we dont look bad, we are happy n heathly or its either a death sentence or no big deal.
For those of us who have endured this, we undersand ur fear n feel ur pain, my family n friends had n have no clue what its like 2 b in our shoes, afraid , angry , lonely only survivors of the life shatering & soul shaking experience can fully understand .
Prayer n faith & my friends here at csn helped me make it threw n sometimes on a daily basis if need b,,look n2 the lance armstrongs web site ,,www.laf.org they sent me a lot of inspiration n support & ask 4 its not about the bike ,,its his storie of beating this monster.
My prayers r with u my friend & if you ever need me drop me a line,,i'll be glad 2 listen.
Yours n tc .
Mark a.k.a lefty

AuthorRDK

I felt the same way as you. It was if I were all alone. So much so that after my five year cure date I placed the following ad in the newspaper:

"THE PRICE I PAID TO SURVIVE CANCER

I would like to take this opportunity to show my appreciation and to thank all "our Friends" who deserted me, and my family, when they learned that I was going to die of cancer. As you realize by now, it is not contagious. I would like to remind you that I still notice the downward glances given to us when we meet in the supermarket. I also wish to share my deepest gratitude with the state and county for seizing everything we had ever worked for, because of unpaid hospital expenses.

The process of losing our home, business, furniture, automobile and money hurt very deeply, and to have never recovered is very painful. That excruciating pain cannot come close to the hurt my family and I suffered from being forced to use food stamps in order to survive. The stares of everyone made us feel that we were lazy no-good people, but to know inside myself that I was an honest hard working father who had raised my children.

The trauma of being stripped of everything made it hard for me to believe that I was living in the United States of America. This is April 21, 1982 and they say that I am cured. With the help of God and a wife who suffered more than any husband could ever ask, I HAVE MADE IT, AND BY GOD IT IS GREAT TO BE ALIVE."

That was 27 years ago. I remember it as if were yesterday. Should I not speak, or remember such things? There is a bad side and a good side of every issue. Both sides of this issue should be told.

Stories from The Life and Times of Roger Dean Kiser http://www.rogerdeankiser.com

ButchInVA

Hi Marsman,
I hear ya. When I got my dx in 1993, I felt like I was alone in the universe. I wasn't with anybody at the time, so fortunately that wasn't an issue. But losing "one of the boys" at age 31 wasn't in my master plan, if you know what I mean. People deal with cancer in those close to them in different ways. It sounds like your kids aren't really dealing with it at all, and like your wife is just scared and needs to go with you to the doctor so she can be in on the discussions. After all, it does affect her. I actually had a woman (several years after my surgery) ask me if having sex with me could give her ovarian or uterine cancer! I mean come ON people, this is the 21st Century for crying out loud! Needless to say, I didn't stay with that one very long.
BUT... (and this is for everybody here), you CAN beat this monster. I had a testicular teratoma in late 1993 and am 100% cancer free ever since. I had an orchectomy followed a couple of months later by a retroperitoneal lymph node dissection (my AFP & BHCG stayed slightly elevated after the initial sx), fortunately with no metastasis found. I had regular CT's for 7 years, and am no on my own. You bet your **** I still do self-exams quite regularly, but I don't expect to see anything further EVER!
Marsman, keep your chin up, join a support group, and you'll get past this thing. Email me if you need to unload. Been there, done that.

Cheers & happy holidays,

Butch

ajames46

ButchInVA said:

Hi Marsman,
I hear ya. When I got my dx in 1993, I felt like I was alone in the universe. I wasn't with anybody at the time, so fortunately that wasn't an issue. But losing "one of the boys" at age 31 wasn't in my master plan, if you know what I mean. People deal with cancer in those close to them in different ways. It sounds like your kids aren't really dealing with it at all, and like your wife is just scared and needs to go with you to the doctor so she can be in on the discussions. After all, it does affect her. I actually had a woman (several years after my surgery) ask me if having sex with me could give her ovarian or uterine cancer! I mean come ON people, this is the 21st Century for crying out loud! Needless to say, I didn't stay with that one very long.
BUT... (and this is for everybody here), you CAN beat this monster. I had a testicular teratoma in late 1993 and am 100% cancer free ever since. I had an orchectomy followed a couple of months later by a retroperitoneal lymph node dissection (my AFP & BHCG stayed slightly elevated after the initial sx), fortunately with no metastasis found. I had regular CT's for 7 years, and am no on my own. You bet your **** I still do self-exams quite regularly, but I don't expect to see anything further EVER!
Marsman, keep your chin up, join a support group, and you'll get past this thing. Email me if you need to unload. Been there, done that.

Cheers & happy holidays,

Butch

My World turned upside down
I'm n old man I suppose really, well 63 aint any spring chicken. My records were typed on a manual typewriter and the CAT scanner had valves, really.

In those intervening years the pyscological effects have dimmished to where my life has been enriched by having cancer. I wouldn't be the the person I am today if I hadn't had cancer.

BUT back in 1985 with surgery radio and chemotherapy, suvival was the name of the game. Then not many many days passed without thinking of cancer, slowly my life didn't revolve round cancer.

One thing stands out someone tells me they have cancer and when they hear about my nine months of treatment there is a camaradie between us.

So if you are just begining your cncer journey, it will be hard, at times very lonely. I remeber being in a crowded room and feeling very alone. But the complete healing will come. Yes you will pass through the stage when you become a cancer bore.

But you will come out stronger, hold on in there, you didn't want it but in the end there are more positives than negatives

Alan

scoffey

ButchInVA said:

Hi Marsman,
I hear ya. When I got my dx in 1993, I felt like I was alone in the universe. I wasn't with anybody at the time, so fortunately that wasn't an issue. But losing "one of the boys" at age 31 wasn't in my master plan, if you know what I mean. People deal with cancer in those close to them in different ways. It sounds like your kids aren't really dealing with it at all, and like your wife is just scared and needs to go with you to the doctor so she can be in on the discussions. After all, it does affect her. I actually had a woman (several years after my surgery) ask me if having sex with me could give her ovarian or uterine cancer! I mean come ON people, this is the 21st Century for crying out loud! Needless to say, I didn't stay with that one very long.
BUT... (and this is for everybody here), you CAN beat this monster. I had a testicular teratoma in late 1993 and am 100% cancer free ever since. I had an orchectomy followed a couple of months later by a retroperitoneal lymph node dissection (my AFP & BHCG stayed slightly elevated after the initial sx), fortunately with no metastasis found. I had regular CT's for 7 years, and am no on my own. You bet your **** I still do self-exams quite regularly, but I don't expect to see anything further EVER!
Marsman, keep your chin up, join a support group, and you'll get past this thing. Email me if you need to unload. Been there, done that.

Cheers & happy holidays,

Butch

Did you have kids after you
Did you have kids after you were treated? Worried about my son, who had the orchidectomy and peritoneal lymph node removed, problem is he doesn't have girl and may not be able to have kids.

eric38

scoffey said:

Did you have kids after you
Did you have kids after you were treated? Worried about my son, who had the orchidectomy and peritoneal lymph node removed, problem is he doesn't have girl and may not be able to have kids.

15 years ago I had
15 years ago I had testicular cancer that spread to the lungs and the brain. I had over ten tumors in the lungs and a very large brain tumor. Even 15 years ago the cure rate for testicular cancer was good but I had gone through treatments before and it recurred. When cancer has been exposed to chemo and survives it becomes stronger so that significantly reduced my chances of survival. Long story short after extensive chemo,radiation, and multiple operations I am still standing 15 years later. I never got married so I do not know about kids. I had to take hormone shots for a while but then my body just naturally kicked in and started producing enough testosterone. I think Lance Armstrong saved his sperm. If I would have thought of that at the time I might have done it too.

Eric

eric38

scoffey said:

Did you have kids after you
Did you have kids after you were treated? Worried about my son, who had the orchidectomy and peritoneal lymph node removed, problem is he doesn't have girl and may not be able to have kids.

If anything interferes with
If anything interferes with having kids it`s not the orchoetomy, it`s the chemo. Aman canbe fertile with one testicle but there is a possibility of sterility with treatments. If you save his sperm before treatments begin he might be able to have kids.

EdithTravis

Same boat but I am the wife and the one that is going crazy
My husband was diagnosed Monady and surgery Weds. We are waiting to find out second opioion on biopsy from Mayo Clinic. The tumor was Massive and my husband didn't know it. I didn't know it. I thought that was how they looked. He acts like he has the flu or a cold and I feel like my world is upside down.I feel like I am missing steps in his treatment and I feel like his Doctor is not doing his job... he's on vacation(the doc) so we see the PA more than anyone. We want children but we are finacially strapped. So saving sperm is very questionable at this point in time. It has been almost two weeks and he is still in alot of pain. His abdominal and back hurts constant and he hurts alot in his sleep. He moans when he moves suddenly and I usually stay awake or I wake up at the least bit of sound just in case he needs me. Is this normal?

redheadbass2

scoffey said:

Did you have kids after you
Did you have kids after you were treated? Worried about my son, who had the orchidectomy and peritoneal lymph node removed, problem is he doesn't have girl and may not be able to have kids.

New to Navigating CSN
I'm not sure now if I replied to you or not. I had the Orchiectomy and RPLND in 2007 and had a Baby in 2008...So, it is possible, but it is differnt for everyone. Don't give up hope!

redheadbass2

EdithTravis said:

Same boat but I am the wife and the one that is going crazy
My husband was diagnosed Monady and surgery Weds. We are waiting to find out second opioion on biopsy from Mayo Clinic. The tumor was Massive and my husband didn't know it. I didn't know it. I thought that was how they looked. He acts like he has the flu or a cold and I feel like my world is upside down.I feel like I am missing steps in his treatment and I feel like his Doctor is not doing his job... he's on vacation(the doc) so we see the PA more than anyone. We want children but we are finacially strapped. So saving sperm is very questionable at this point in time. It has been almost two weeks and he is still in alot of pain. His abdominal and back hurts constant and he hurts alot in his sleep. He moans when he moves suddenly and I usually stay awake or I wake up at the least bit of sound just in case he needs me. Is this normal?

Keep talking to the PA
If you are at all concerned with recovery and/or healing--may I suggest that you talk to medical staff. They are the only ones that will be able to tell you what is 'normal'

If they tell you it is 'normal' and he is still in pain...tell them again. May I also suggest that you ask them for something to help ease his pain.

EdithTravis

redheadbass2 said:

Keep talking to the PA
If you are at all concerned with recovery and/or healing--may I suggest that you talk to medical staff. They are the only ones that will be able to tell you what is 'normal'

If they tell you it is 'normal' and he is still in pain...tell them again. May I also suggest that you ask them for something to help ease his pain.

I asked -not great answer
I asked the PA if this was normal. It's been a month and he is still not recovered. We also got bad news about the type of cancer-non germ cell -sex cord stonmal. very rare. They are now referring him to another doctor.

redheadbass2

EdithTravis said:

I asked -not great answer
I asked the PA if this was normal. It's been a month and he is still not recovered. We also got bad news about the type of cancer-non germ cell -sex cord stonmal. very rare. They are now referring him to another doctor.

Advocate
Edith, You and your husband are his biggest advocates. If he is still in pain--I would suggest that you tell the Doctor AND the PA that he is still in pain. If the level of pain is unacceptable--I would suggest that you tell them that he needs something for the pain. If you find yourself wanting to ask more questions about that specific type of rare cancer, I would suggest calling your American Cancer Society: 1-800-227-2345 ...you can also find the information at www.cancer.org--but, I think it's nice to talk to someone. They are there 24/7. I'll keep you and your husband in my thoughts and reflections while you continue the 'waiting'...Take care!

Unknown

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