First time here posting-could use some help

[Margaret]

Hello everyone, my name is Margaret and my husband has Testicular Cancer. I am 33, he is 38 and we live in Apex, NC with our 7 year old son.

Some background on his case...he was told about the cancer on 7-11-06 during an exam because his right testical was hard and swollen. He had a hernia on the same side and thought that was why it was different than the left. The testical was removed and they found 2 tumors on his lymph nodes in his abdomen, one was the size of a grapefruit. After 4 full round of chemo + the bleo, his markers were normal, but two tiny masses were still present on the pet scan. We decided to do a Full RPLND to removed the lymph nodes on both sides of his abdomen. We traveled to Sloan Kettering Cancer center in New York City and he was in the hospital for 10 days. He is back to work now, showing no signs of cancer, but we will be checked for the next 2 years.

(I know I say "we" a lot and I never had cancer, but it sure feels like a "we" process)

I have so many questions about what to expect next, what the chances are of having it return and also if anyone has had any luck getting pregnant after a RPLND??

Also, there was a young man we met at Sloan Kettering that is not responding to the chemo and the cancer is not under control. It has moved to his brain and he is in new treatment now. He will be 20 at the end of this month. My husband and I have bonded with him and his family. As luck would have it, my husband's best friend died 15 years ago of Testicular Cancer and watching this young man fight so hard has brought back a lot of memories for us.

I would like to learn from any advice or experience that anyone here can offer me. Also, I am trying to get some letters to this young man at Sloan Kettering, to give him encouragement. Feel free to write me back, I would love to get to know some of you.

And if you think writing to someone else may help you share your story, you can e-mail my personal account with a letter and I will send them to the boy at Sloan Kettering. His name is Danny and he is from AZ but is now living at the hospital in NY. My e-mail is [email protected]

I came here a lot when we first got our news and even though I was hiding out and not posting, your messages, questions, and support helped us a great deal.

Thanks so much,

Margaret

[jdunn]

Hi Margaret,
Welcome!!! Thanks for sharing your story with us. It is a "we" process. It will be 2 years this month that our lives changed with the diagnosis of my son's cancer. I seem to get those feelings back all over again as it approaches the anniversary. My son is doing great now and I read where you have a friend Danny from AZ in New York who is having a tough time. I will e-mail you to get his address. Would love to write him. It makes me sad to hear about his troubles at such a young age. Keep in touch with us!

[Margaret]

Thanks and wonderful news about your son.

I left my e-mail address ([email protected]) and if you would like to write a letter to Danny and e-mail it to me, I am going to send him a care package with the letters. Since the cancer has moved to his brain, his vision is not as good as it was before...so I would be worried that he is no longer checking his e-mail and I know his brother Michael is going to read his brother the letters. I also got him a Livestrong t-shirt and hat to wear along with some other things to help make him smile.

Once you go through something like this, if you are the person living with cancer or a caregiver to someone with cancer, you bond with others that share your same experience. Thank you so much for taking the time to respond to me.

M.

[dadmo]

Margaret:
Welcome and yes this is a we process.
The only potential fertility problem associated with an RPLND is retrograde ejaculation. Thsi problem is caused when the doctor touches the nerves which affect ejaculation the problem may not exist at all or as in my sons case last almost a year.
The only thing you should expect from this point out is anxiety associated with the frequent follow-ups. My son is two years out (RPLND also at Sloan) and still gets scanned twice a year along with visiting the doctor four times a year.
If you want to show Danny that long odds can sometimes be beaten perhaps you should print the Story of Patrik Oates. It can be located on this forum at this link .
Do you know if Danny was chemo refactory from the start or was his diagnosis made late? Can you tell us anything about his course of treatment. being at Sloan I'm sure we will have no suggestions that the doctors haven't thought of but it can be a learning experiance for us in future difficult cases.

[Margaret]

I am thrilled some of you want to write Danny. So far all I have is my letter (from my dh and I) and my mother wrote him one too. The more the better.

They did tell us about retrograde...but we had no time to bank. He was told about the cancer on the 11th and on the 12th he was in surgery. Then chemo followed right away. I hate to be graphic...but I am sure you have all heard it all before...but since his surgery on the 25th of November (with Dr. Sheinfeld by the way) he has tested the waters if you will and "some" fluid did surface. So we were excited about that and felt that since it had only been about a month and we were seeing some signs of fluid, that maybe he will overcome the retrograde. Of course in my mind, any fluid "could" contain sperm, so I am keeping my hopes alive. Doctors don't know everything. One doctor, very early in the process, told us "It doesn't matter, he is most likely sterile anyway and has been for some time". I found that to be a bit heartbreaking because he never did a sperm test and so how could he make that statement. I am sure lots of miracle babies have been produced after TC.

As far as Danny goes, I am sure his family could tell you more than me of course. I know he was told about the TC in July/Aug and it took them a long time to figure out what he had. I think it was well advanced although I did not feel right about asking them his stage. His counts were really high, 450,000 and after chemo they dropped to 72, which is wonderful but they never fell in that "normal range" like my husband's did.

Then once they stopped chemo, the counts went to 2,500...and they said that chemo was not working anymore. On Thanksgiving day they told him that it had moved into his brain. He is still at Sloan Kettering and I could cry at the thought of hugging him and his family good-bye...but I promised not to forget about him and I won't. He is in a new program with a test sample of new chemo and it seems to be helping but he is sick as a dog from it. They are also doing some radiation on his brain for that tumor. He is a good looking, strong, funny, smart guy who really needs to make it. My husband gave him his livestrong ball cap when we were there and his brother says he never takes it off.

[Scott]

...but since his surgery on the 25th of November (with Dr. Sheinfeld by the way) he has tested the waters if you will and "some" fluid did surface. So we were excited about that and felt that since it had only been about a month and we were seeing some signs of fluid, that maybe he will overcome the retrograde. Of course in my mind, any fluid "could" contain sperm, so I am keeping my hopes alive. Doctors don't know everything. One doctor, very early in the process, told us "It doesn't matter, he is most likely sterile anyway and has been for some time". I found that to be a bit heartbreaking because he never did a sperm test and so how could he make that statement. I am sure lots of miracle babies have been produced after TC.

After my L-RPLND, I experienced at least a couple months of retrograde ejaculation, but antegrade ejaculation did return.

I would certainly keep hope! I can't imagine what that doctor was thinking to make such a ridiculous comment.

[Margaret]

I know and that crazy thing about him making that statement was when they were wheeling him back for his first surgery. So we were told that the cancer had spread into his abdomen, that he would need chemo, and that we could never have more children all in a 5 min period. Watching them wheel him away with all that on his mind and knowing I could not be there to comfort him or talk it over with him was so difficult. He was very strong through everything....I am not sure I could have handled it with such grace.

[Already Bald]

Hello everyone, my name is Margaret and my husband has Testicular Cancer. I am 33, he is 38 and we live in Apex, NC with our 7 year old son.

Some background on his case...he was told about the cancer on 7-11-06 during an exam because his right testical was hard and swollen. He had a hernia on the same side and thought that was why it was different than the left. The testical was removed and they found 2 tumors on his lymph nodes in his abdomen, one was the size of a grapefruit. After 4 full round of chemo + the bleo, his markers were normal, but two tiny masses were still present on the pet scan. We decided to do a Full RPLND to removed the lymph nodes on both sides of his abdomen. We traveled to Sloan Kettering Cancer center in New York City and he was in the hospital for 10 days. He is back to work now, showing no signs of cancer, but we will be checked for the next 2 years.

(I know I say "we" a lot and I never had cancer, but it sure feels like a "we" process)

I have so many questions about what to expect next, what the chances are of having it return and also if anyone has had any luck getting pregnant after a RPLND??

Also, there was a young man we met at Sloan Kettering that is not responding to the chemo and the cancer is not under control. It has moved to his brain and he is in new treatment now. He will be 20 at the end of this month. My husband and I have bonded with him and his family. As luck would have it, my husband's best friend died 15 years ago of Testicular Cancer and watching this young man fight so hard has brought back a lot of memories for us.

I would like to learn from any advice or experience that anyone here can offer me. Also, I am trying to get some letters to this young man at Sloan Kettering, to give him encouragement. Feel free to write me back, I would love to get to know some of you.

And if you think writing to someone else may help you share your story, you can e-mail my personal account with a letter and I will send them to the boy at Sloan Kettering. His name is Danny and he is from AZ but is now living at the hospital in NY. My e-mail is [email protected]

I came here a lot when we first got our news and even though I was hiding out and not posting, your messages, questions, and support helped us a great deal.

Thanks so much,

Margaret

Margaret.
Majbritt and I sit here at your kitchen, and read your first ever post ever.
You are such a wonderful person- and Boyce is awesome!
Allen is the coolest kid ever-
ML
Joe and Majbritt!

[Already Bald]

Hello everyone, my name is Margaret and my husband has Testicular Cancer. I am 33, he is 38 and we live in Apex, NC with our 7 year old son.

Some background on his case...he was told about the cancer on 7-11-06 during an exam because his right testical was hard and swollen. He had a hernia on the same side and thought that was why it was different than the left. The testical was removed and they found 2 tumors on his lymph nodes in his abdomen, one was the size of a grapefruit. After 4 full round of chemo + the bleo, his markers were normal, but two tiny masses were still present on the pet scan. We decided to do a Full RPLND to removed the lymph nodes on both sides of his abdomen. We traveled to Sloan Kettering Cancer center in New York City and he was in the hospital for 10 days. He is back to work now, showing no signs of cancer, but we will be checked for the next 2 years.

(I know I say "we" a lot and I never had cancer, but it sure feels like a "we" process)

I have so many questions about what to expect next, what the chances are of having it return and also if anyone has had any luck getting pregnant after a RPLND??

Also, there was a young man we met at Sloan Kettering that is not responding to the chemo and the cancer is not under control. It has moved to his brain and he is in new treatment now. He will be 20 at the end of this month. My husband and I have bonded with him and his family. As luck would have it, my husband's best friend died 15 years ago of Testicular Cancer and watching this young man fight so hard has brought back a lot of memories for us.

I would like to learn from any advice or experience that anyone here can offer me. Also, I am trying to get some letters to this young man at Sloan Kettering, to give him encouragement. Feel free to write me back, I would love to get to know some of you.

And if you think writing to someone else may help you share your story, you can e-mail my personal account with a letter and I will send them to the boy at Sloan Kettering. His name is Danny and he is from AZ but is now living at the hospital in NY. My e-mail is [email protected]

I came here a lot when we first got our news and even though I was hiding out and not posting, your messages, questions, and support helped us a great deal.

Thanks so much,

Margaret

Margaret,
I sitting here in your kitchen, nursing my hangover while you are hovering over the stove. I just wanted to thank you for allowing me and my family into your home- and just so everybody is clear, you are as pretty as the day is long, and Boyce- well, he is just as bald as me.
Your home is georgous, and cozy- sure wish we lived closer.
We are going to have a great time at the game tonight!

Your first post on this forum was in honor of Danny, even when Boyce was so sick- and that is jst who you are-

THE HUDSONS ARE GREAT PEOPLE!! WE ARE BLESSED TO KNOW YOU!!

Love, Joe and Majbritt, Hannah and Thomas

[dadmo]

What about the tattoo?????

[Margaret]

What about the tattoo?????

Don't worry, I showed him!