28 Year Old Husband Diagnosed w/ Bladder Cancer

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28 Year Old Husband Diagnosed w/ Bladder Cancer

by Steph2005 on Tue Sep 20, 2005 12:00 AM

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My 28 year old husband was diagnosed with stage 3 bladder cancer on August 1. He is currently undergoing chemotherapy (4 rounds) then he will have his bladder removed. We hope he will be able to get a neo-pouch or the Indiana pouch. After the surgery, he will likely need additioanl chemotherapy. We have a 6 month old baby boy. I am having a difficult time getting my arms around everything. Chemo is very hard on him; draining all of his energy. It is hard for me to watch my strong, young husband lay around feeling miserable all the time. We did chose to bank sperm in case we chose to expand our family after he is cancer free. Has anyone been through all of this? I need some words of wisdom. We have a strong support system and lots of people praying for us, as well as a positive attitude. Any other tips?

Ouch

by Rose_123 on Tue Sep 20, 2005 12:00 AM

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Hello, I am so sorry for you and your family. But it is conqueaable. We had my husband bladder removed in April. He has an outside pouch sytem. it works best for him. He is 57. We were fortunate that we didn'thave to do chemo. It was all contained. We will have a recheck in 'Feb 06. I am thankful mine is doing so well. I hope yours gets better soon. He is young and should be able to get better. Rose

Your Husband

by Isabella on Tue Sep 20, 2005 12:00 AM

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Stephanie: I am 50 years old and have a 24 year old son...that I adore. He does not have cancer, but I do. I have stage III ovarian. And I too have to have another surgery, that is after 2 already, in January to have my lymph nodes removed because I went for triple opinions...have you gone for second opinions? I want to give you and your husband some advice...as I seek the same and find it hard to get. I am on 6 rounds of Taxol/CarboPlatin...today I just had my third and I am waiting to see what side effects I have this time. The first time I was only sick for 3 days - and had a ton of energy for the remainder weeks until my next round. With my second I was really in pain, and had sever fatigue for about 6 days...but when that passed I was feeling great for 1 week until I went back today for my 3rd. What I'm wondering is what round is your husband on? How often are his treatments? If he is really sick for a long time maybe you should see if the dosage is the right for his body weight? Again, a second opinion...Have you had his slides of his pathology looked at by a second opinion...I did and the news was really positive... But here is the kicker advice I want to give. 1) You must read and he must read: Dr. Bernie Siegels, Love Medicine and Miracles. It will change his attitude and out look...he is young and will get thru it, but his attitude must be positive. Please read it, if he doesn't want to read it, read it to him! 2) If he is nauseus change your anti nausea medicine - there are many. 3) Read Lance Armstrong's book. If he can beat cancer and be cancer FREE anyone can...but he put his mind to it - again...Dr. Bernie Siegel's book. 4) Listen to anything Carolyn Myss. She on Audio - the power of healing is thru imaging, forgiving and meditation..I know it sounds corny and I never did it before I found out I had cancer...but it works... 5) As the care giver it is hard...and you can only do so much...God gives us cancer for a reason...we just don't see it right now - but he will work thru it, he will live to be old and have a wonderful llife, he has to want it...don't live in the negative...live in the message that he can send to young men around the world... 6) Exercise with him - he won't feel like it - but when he does feel okay for 1 hour...go for a walk...I started to do this and my blood cell counts that were really troublesome, today are perfect... 7) Here is my email address if you need someone to talk to: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- 8) Pray and have faith in God...listen to the angels that suround you and don't listen to your husband when you tell him about me...as he will probably say I'm just another wacko...I'm not...I'm a survivor and so is he. Wendi

Bladder Cancer

by Miatri on Tue Sep 20, 2005 12:00 AM

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Steph, My husband was diagnosed with small cell bladder cancer in Sept. 2004. It has been a year and we have gone through surgery, chemo, and radiation at the Cleveland Clinic. He has had CT scans and chest scans and there is no sign of cancer. Initially he was stage 3. He started with surgery but they did nOT remove his bladder, they simply removed the tumor and then proceeded to chemo with cisplatin and etoposide. The goal was to do six rounds but after only three, his blood counts were too low so they stopped the chemo. He then went for daily radiation (MOnday thru Friday) for six weeks. He was fatigued going thru chemo but recovered well. I thank God he has done this well. Last year through Thanksgiving and Christmas I was very "down" and it was an awful time for our family. However, I realize we are not "out of the woods yet" but we are far better off than I thought we would be. So, hang in there. I realize with a baby it is even more difficult for you but stay strong and keep positive. There are plenty of good books out there. My husband would not join a support group but he did keep a journal. I wish you and your husband the best. Marilyn

Bladder Cancer Support Group on Web.

by MaryJane_M on Thu Sep 22, 2005 12:00 AM

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This message is to the 28 year old who has bladder cancer and is on chemo and all people who have bladder cancer. Join the bladder cancer support group by sending an e-mail to: BLADDER-CANCER-CAFE@LISTSERV.ACOR.ORG You would not believe how many people have so much information and research on bladder cancer. I belong to the group. I have a neo-bladder. My surgery was done on July 3, 2001. I feel great. I never had chemo because the cancer was not muscle invasive. I had clear margins and there was no cancer in the lymp nodes. The bladder had to be remove because the cancer was very aggressive. I had stage 2 of 3.

Small Cell Bladder Cancer

by Pault on Thu Sep 22, 2005 12:00 AM

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My husband was diagnosed in May, 2005 with small cell bladder cancer. He also has had chmeo: taxol, oral etoposide, and carboplatin. This was supposed to be 4 founds but he was only able to take three, since the pet/ct came back showing a slight growth in the pelvis. We bagan daily radiation and weekly chemo of cisplatin and he is just finishing this 6 week regimen. Now we are doing our scans again and beginning a new round of chemo--which we are not yet sure about. Who was your doctor at Cleveland Clinic. I would like our oncologist to consult with him. The more these doctors talk and share information, the better it is for the patients. Our oncologist has spoke to doctors at Sloan Ketting, MDAnderson, USC and Tennessee--and everyone has a different opinion. PLEASE REPLY WITH HIS NAME ASAP SO WE CAN PERHAPS HAVE HIS INPUT INTO OUR NEXT REGIMEN. Much Thanks, Waiting for a quick reply, Eva

Bladder Cancer

by Henrietta on Thu Sep 22, 2005 12:00 AM

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Your note suggested a bladder cancer support group.....but there was no email or web address. Can this be available to us patients? In the 11 months since my diagnosis with bl cr Stage 2, following surgery, and continuing chemo , (about to begin the 4th couse of BCG/Interferon A), I've been in a cancer support group but have not ever talked with another bladder cancer patient, except thru this message site.

Small Cell Bladder Cancer

by Pault on Fri Sep 23, 2005 12:00 AM

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Dear Miatri, I read the story you wrote about your husband and I believe my husband is going through the same thing he did. You said you went to the Cleveland Clinic. Which doctor did you see? Since this is so rare and so few doctors have seen cases of this our oncologist would like to speak to doctors who have treated small cell of the bladder. Please let us know THE NAME OF THE ONCOLOGIST YOU ARE SEEING AT CLEVELAND CLINIC asap because we have some serious issues we need to deal with now. Thank you, Eva

my Husbands Bladder Cancer

by Steph2005 on Mon Sep 26, 2005 12:00 AM

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Hi Wendie, Thank you for your response regarding my husband. We have gone for a second opinion. We live in Louisville, KY and the prognosis we received here was not good. We decided to go to Indiana University to the Chief of Urology for a second opinion. The prognosis there was much better. They are confident that my husband will be able to have a bladder built or an internal bag. Here in Louisville, they could only offer him the external bag. Also, in Indianapolis, they will be able to do a "nerve sparing" operation, which will help to save the nerves in that area, which are necessary for sexual function. We asked our Louisville doctor about the "nerve sparing" surgey and he did not think my husband was a candidate. As it turns out, the doctors in Indy have been performing that type of surgery for 15 years! Also, the oncologist we meet with in Indianapolis treated Lance Armstrong, a new role model in our life. The doctor in Indy recommended 2 rounds of chemo then a ct scan to ensure it is shrinking the tumor. If is is shrinking, 2 more rounds of chemo, then removing the bladder. We just completed the second round of chemo and he had the ct scan on Friday. I am happy to report that the ct scan showed "significant improvement" so we will continue with 2 more rounds. We are receiveing the chemo here in Louisville, but under the direction of the Indy doctor; just for convenience. I really appreciate all of your advice. I am currectly reading Lance Armstrong's book. He is a true inspiration to us and we are utilizing all of the resourses available on his website as well. I will look into getting the Love, Medicine & Miracles book. It sounds very inspirational. We are exercising a bit. We have a 6 month old little boy and he is a true joy in our life. We usually take him on a short walk, at least around the block, once a day. I know our little boy gives my husband hope and determination. My husband has handled this horrible disease with so much grace and dignity. He has not once complained about anything. I am encouraging him to share his feelings with me, as I know he must have a million emotions inside. I continue to tell him that he doesn't need to be stong or brave for me, that we can cry together when we need to. I just hope he is not bottling up his emotions. Thanks again for your words of wisdom. I hope you see this response, it has taken me quite a while to get back here. I would personally email you, however, you email address was removed due to their tems of service. Thanks, Steph

Husbands Cancer

by Steph2005 on Tue Sep 27, 2005 12:00 AM

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Hi Rose, Thank you for sharing your story with me. It is encouraging to know that people fight & win this battle. My husband is strong and determined. We have been lucky to learn that his cancer is also contained to the bladder and that the chemo is working, as the size of the tumor is shrinking. How was your husband's recovery from the surgery? I imagine it is pretty taxing. Any info you can share would be greatly appreciated. I feel I have more control over my life when I know what to expect. Thanks again, Steph
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