Transitional And Squamous Cell Bladder C

Hi, does anyone have information or experience with this?  My husband was diagnosed 7/31/07. He is white, 60 years old, ex-smoker, classic profile. We have completed 2 of 4 chemotherapy treatments with cisplatin/gemzar. The urologist removed 6.5 ounces of the tumor to alleviate the blockage from the bladder to the uretha in August. The right kidney is still blocked and a nephrostemy tube empties urine from that organ. The bladder will be removed after the 4th chemo. The diagnosis is "invasive and aggressive" and the staging will be established after after the chemo is completed.  

Any information or resources would be greatly appreciated.

My Dad was diagnosed with an aggressive type bladder/urothelial
cancer early 2007. Unfortunately, the diagnosis was too late and he
passed away in March of '07. I currently do volunteer work with teh
Bladder Cancer Advocacy Network. THeir website is www.bcan.org. You can
find very informative stuff on that site. In addition,
www.blcwebcafe.org is a site which I found quite helpful while going
through the battle with my Dad. It was helpful to be able to chat with
others going through the same thing. Since my Dad's fight was soo short
lived (he actually contacted sepsis, probably from the catheter which
was in place for 5+ months), I really can't help with any information
myself regarding chemo, etc. I do wish your husband and you and your
family the best. Please know that there are people out here who are
saying prayers for you all. God bless.

Kathie 

I had a radical systectomy April 29 2,004. I was 57 at the time. in my case thank G_D it was not invasive and it looks like it was caught on time.

I live in Texas but had it done at USC Norris Cancer Center in Los Angeles with Dr. Donald Skinner and his team. This is what they do and they are great at it.

Before my surgery I had BCG treatments that did not appear to help much. It has been almost 4 years now and everything seems to be fine.

I wish you all the best especially on this Thanksgiving Day. If I can help in any way please let me know and I'll gladly try

Thank you for writing. May I ask, was there lymph node involvement; were they removed? It's great to hear that you found an expert physician; that's what I'm reading in the research, that the treatment outcomes are highly dependent on the expertise of the medical team. Fortunately we found an excellent urologist and oncologist team. We have not talked much about the squamous cell cancer which scares me.  As much as I want to ask questions, it's critical that my husband sets the tone for the discussions.  Anyway, thank you again for writing and a hope you had a fine Thanksgiving too.

On 11/22/2007 elikapeka wrote:

Thank you for writing. May I ask, was there lymph node involvement; were they removed? It's great to hear that you found an expert physician; that's what I'm reading in the research, that the treatment outcomes are highly dependent on the expertise of the medical team. Fortunately we found an excellent urologist and oncologist team. We have not talked much about the squamous cell cancer which scares me.  As much as I want to ask questions, it's critical that my husband sets the tone for the discussions.  Anyway, thank you again for writing and a hope you had a fine Thanksgiving too.

 

 

In my case there was no lymph node involvement, all the nodes taken out during the surgery where clean. Ask questions, don't be afraid to. Good Doctor's do not mind and if they did I would be concerned. Doctor's can talk to you about statistics, percentages, possibilities, alternatives, etc but you as the patient or the pateint's family should ask the human, concerned, scared questions that need answets. When I met with Dr. Skinner  did so with my wife, one of my daughter's and my brother. Our meeting lasted hours before I decided how to proceed. I do not regret my choice.

Good luck. Know that there is light at the end of the tunnel and that wtih good Doctor's, faith and prayer the chances of having a long life with excellent quality of life are there.

 

Let me know if I can helo

 

On 11/21/2007 elikapeka wrote:

Hi, does anyone have information or experience with this?  My husband was diagnosed 7/31/07. He is white, 60 years old, ex-smoker, classic profile. We have completed 2 of 4 chemotherapy treatments with cisplatin/gemzar. The urologist removed 6.5 ounces of the tumor to alleviate the blockage from the bladder to the uretha in August. The right kidney is still blocked and a nephrostemy tube empties urine from that organ. The bladder will be removed after the 4th chemo. The diagnosis is "invasive and aggressive" and the staging will be established after after the chemo is completed.  

Any information or resources would be greatly appreciated.

Hi, I just read your message. Sorry to hear your husband found out so late about his condition. I have bladder cancer. I have two kinds and one had high grade cells and the other one had low grade cells.I found out June 7, 2007., while my husband was in rehab from his cancer surgery.I had great fortune to find a good doctor at Shanes in Gainesville Florida. He saw me and did surgery the next day. My bladder was full of cancer but it had a small base and hadn't invaded the muscle wall yet. Dr Algood cut it all out and I have been taking BCG treatments since. I am on my my second set of BCG and it has really bothered me with side effects. He said not many people can handle this treatment plan for 6 years. Looks like I will be one of them. He is lowering my dose on Wednesday to see if I do better with it.I don't know what the future will bring but I feel like one of the lucky ones to find out early. I had blood in my urine and had it tested and was referred to an urologist. It is really scary to have cancer, I feel like my life may be over and then maybe not. The unknown is very depressing.

I sure hope things go well for you. I understand the caregiver part because I am my husbands caregiver. He had his left pelvis removed with bone cancer and we are dealing with that. Some days I feel like, where is my care giver. I will pray for your husband and family. Best of luck

On 11/26/2007 Larue6 wrote:

 

On 11/21/2007 elikapeka wrote:

Hi, does anyone have information or experience with this?  My husband was diagnosed 7/31/07. He is white, 60 years old, ex-smoker, classic profile. We have completed 2 of 4 chemotherapy treatments with cisplatin/gemzar. The urologist removed 6.5 ounces of the tumor to alleviate the blockage from the bladder to the uretha in August. The right kidney is still blocked and a nephrostemy tube empties urine from that organ. The bladder will be removed after the 4th chemo. The diagnosis is "invasive and aggressive" and the staging will be established after after the chemo is completed.  

Any information or resources would be greatly appreciated.

Hi, I just read your message. Sorry to hear your husband found out so late about his condition. I have bladder cancer. I have two kinds and one had high grade cells and the other one had low grade cells.I found out June 7, 2007., while my husband was in rehab from his cancer surgery.I had great fortune to find a good doctor at Shanes in Gainesville Florida. He saw me and did surgery the next day. My bladder was full of cancer but it had a small base and hadn't invaded the muscle wall yet. Dr Algood cut it all out and I have been taking BCG treatments since. I am on my my second set of BCG and it has really bothered me with side effects. He said not many people can handle this treatment plan for 6 years. Looks like I will be one of them. He is lowering my dose on Wednesday to see if I do better with it.I don't know what the future will bring but I feel like one of the lucky ones to find out early. I had blood in my urine and had it tested and was referred to an urologist. It is really scary to have cancer, I feel like my life may be over and then maybe not. The unknown is very depressing.

I sure hope things go well for you. I understand the caregiver part because I am my husbands caregiver. He had his left pelvis removed with bone cancer and we are dealing with that. Some days I feel like, where is my care giver. I will pray for your husband and family. Best of luck

It's a relief to connect with someone else in this cancer life.  Thank you for writing. Are you two able to care for yourselves and for each other? Did you loose your bladder or do you still have it? Do any alternative treatments help with the bcg side effects, like acupuncture? I don't know anything about bcg.  This is a freaky time because he was so sick for months, started chemo, and after the 2nd treatment he was doing so well that his oncologist let him travel across the country before the next chemo. I think we will learn a lot more when we meet with his new urologist in 3 weeks.  The meeting will either be really good or not.
Are you alone in caregiving for your husband?  Sorry to be asking so many questions. Prayers for you and your husband.

On 11/27/2007 elikapeka wrote:

 

On 11/26/2007 Larue6 wrote:

 

On 11/21/2007 elikapeka wrote:

Hi, does anyone have information or experience with this?  My husband was diagnosed 7/31/07. He is white, 60 years old, ex-smoker, classic profile. We have completed 2 of 4 chemotherapy treatments with cisplatin/gemzar. The urologist removed 6.5 ounces of the tumor to alleviate the blockage from the bladder to the uretha in August. The right kidney is still blocked and a nephrostemy tube empties urine from that organ. The bladder will be removed after the 4th chemo. The diagnosis is "invasive and aggressive" and the staging will be established after after the chemo is completed.  

Any information or resources would be greatly appreciated.

Hi, I just read your message. Sorry to hear your husband found out so late about his condition. I have bladder cancer. I have two kinds and one had high grade cells and the other one had low grade cells.I found out June 7, 2007., while my husband was in rehab from his cancer surgery.I had great fortune to find a good doctor at Shanes in Gainesville Florida. He saw me and did surgery the next day. My bladder was full of cancer but it had a small base and hadn't invaded the muscle wall yet. Dr Algood cut it all out and I have been taking BCG treatments since. I am on my my second set of BCG and it has really bothered me with side effects. He said not many people can handle this treatment plan for 6 years. Looks like I will be one of them. He is lowering my dose on Wednesday to see if I do better with it.I don't know what the future will bring but I feel like one of the lucky ones to find out early. I had blood in my urine and had it tested and was referred to an urologist. It is really scary to have cancer, I feel like my life may be over and then maybe not. The unknown is very depressing.

I sure hope things go well for you. I understand the caregiver part because I am my husbands caregiver. He had his left pelvis removed with bone cancer and we are dealing with that. Some days I feel like, where is my care giver. I will pray for your husband and family. Best of luck

It's a relief to connect with someone else in this cancer life.  Thank you for writing. Are you two able to care for yourselves and for each other? Did you loose your bladder or do you still have it? Do any alternative treatments help with the bcg side effects, like acupuncture? I don't know anything about bcg.  This is a freaky time because he was so sick for months, started chemo, and after the 2nd treatment he was doing so well that his oncologist let him travel across the country before the next chemo. I think we will learn a lot more when we meet with his new urologist in 3 weeks.  The meeting will either be really good or not.
Are you alone in caregiving for your husband?  Sorry to be asking so many questions. Prayers for you and your husband.

Hi,  I am more capable to care for him, he needs crutches to get around. and can't do anything. We have worked on him dressing himself and showering alone.

 I have not lost my bladder at this point. Doctor has not mentioned it yet. So far all the cancer seems to be gone. The treatments, BCG, is a live bacteria that causes TB. Seems it works by making the ammune system  work to kill the bacteria and the cancer cells. I have it inserted in the bladder with a cathier, hold it for 2 hours and then urinate it out.I have to use bleach in toilet for 24 hours to kill the bacteria, and keep it off my skin. Scary huh? Then the side effects start. I pass bllod and have pains and a urgentcy to go 24/7 and severe pain when I go.

This next 3 weeks must be the longest in your life .I have a hard time waiting for the unknown. I will keep you in my thoughts and prayers.Let me know what the new urologist tells you. Is he a oncologist too? You have to be strong for your husband. I know that is very hard to do. But don't hold back any questions to the doctor. You need to get your thoughts together to understand whats going on too.

Take care

 

Hi,

Somehow your message back to me was deleted. Pls reply back. I got good and bad news last week. I am doing fine ,but my husband's chrondrosarcoma in his pelvis has spread to his lungs. Two spots; one in each lung.He is getting surgery Dec 13 to remove them. This is not good. This cancer is very aggressive and this has changed our life AGAIN!!!! You just can't make plans when you have cancer. CANCER loves to take control. How much longer do you have to wait for your new Doctor appt? Best wihes, Keep praying