After RC Cancer Has Spread to Bones and Lungs

14 years 10 months ago #26256 by alsimons
Replied by alsimons on topic After RC Cancer Has Spread to Bones and Lungs
Doug;

Read you post about half an hour ago and it has taken me that long to try and find something to express my thoughts. I know this must be an extremely hard time for you and your family and I hope you can find some comfort from all the thoughts and prayers from your extended family on this site.

We will be keeping you and yours in our prayers

Al and Pat

Please Log in or Create an account to join the conversation.

14 years 10 months ago #26247 by mmc
Doug,

Just saw your message. I am so, so sorry to hear about the spread. Everything sounded so promising after your RC that I was very surprised to read about this awful news.

I can't imagine what you must be feeling and haven't been down this path so I really don't know what to advise.

My thoughts and prayers are with you.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

14 years 10 months ago #26241 by Julie
Doug, I'm sorry the cancer has spread so fast. Chemo or radiation may not stop the cancer but they may slow it down. And radiation is used for palliative reason on the cancer in the bone. Have you seen as oncologist as well as a urologist? If not get a referral to a urinary tract oncologist and perhaps as radiation oncologist. The decisions about what to do are all difficult. There is not much research on metastatic bladder cancer. I don't know if any clinical trials are addressing that. Both chemo and radiation can leave you very fatigued and with some difficult side effects. I think the benefit is measured in months.
My husband had radiation for palliative care when we found that the Bladder Cancer had gone into his ribs. He was not a candidate for chemo. He had that treatment in July and died in December last year.
No one gave us a time frame nor did we ask for one. We knew the outcome so we focused on living as much as we could. Julie

Volunteer Coordinator
ABLSC

Please Log in or Create an account to join the conversation.

14 years 10 months ago #26232 by bobmac2
Replied by bobmac2 on topic After RC Cancer Has Spread to Bones and Lungs
Doug- There were not any replies when I read your post & I must admit I was afraid of saying the wrong thing, so I held back until others had replied. You were very brave to post so quickly after getting your diagnosis. Whatever you decide to do, please know that you can come here anytime- someone will always answer your questions & allow you to vent. Your emotions must be so raw right now
This won't help but this exact same thing happened to my husband. He was assured that he would be cancer free so went ahead with a neo-bladder. 2 weeks later they found nodules in his lungs. He had Chemo which shrank the lung tumours for awhile, but now they are back as well as being in his spine & some spots on his liver. At this point they are trying to make him comfortable. We have arranged Palliative/Hospice care for when I can't look after him any longer.We don't know how soon that will be.
My best to you & your family. Pleae feel free to ask anything
Lorrie

Please Log in or Create an account to join the conversation.

14 years 10 months ago - 14 years 10 months ago #26231 by Cynthia
Replied by Cynthia on topic After RC Cancer Has Spread to Bones and Lungs
Doug,

I will not tell you I know how you feel because that could not be true. But I can tell you that you are in my heart and thoughts.

If faced with the news you heard yesterday no two people are going to have the same reaction. Mine would be to head for a clinical trial matching service. Now having said that there is a lot to consider when dealing with clinical trials. I would not be interested in phase one clinical trials that is the first phase and most never make it past that phase. A phase three trial would tell us that they have had some success and are moving forward with it. Also it it a blind trail that is blind using placebo's? I would not want to be one of the ones getting the placebo if my reason for doing the trail was either curative or life extension. Quality of life is a real consideration what are the side effects and will it be worth it in the long run? It is something that would have to be worth the risks so there would be a lot of questions to answer and a lot to consider. If a clinical trail is of interest to you here is a link to the American Cancer Society's clinical trail matching service web page.

www.cancer.org/docroot/ETO/content/ETO_6_1X_Clinical_Trials_Matching_Service.asp

If a clinical trail is not of interest then I would have a talk with my health care team about palliative care and the options open to you. Knowing what to expect and knowing your choices will help you make the decisions that are right for you.

Please remember that we are here for you and your loved ones you are a part of our family.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

Please Log in or Create an account to join the conversation.

14 years 10 months ago #26229 by Rockyiss
Replied by Rockyiss on topic After RC Cancer Has Spread to Bones and Lungs
Dear Doug, I just happened to come inside for a break and got on my computor for a minute, and I read your post. What you must be feeling has to be so overwelling. Their are others on here that are very good at knowing the medical stuff and I am sure they will be on soon. My husband is a minister and we will be praying for you and your family that you will find peace and strength as you figure all this out. love from Rocky

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne