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Long journey with multiple cancers, the latest is bladder stage IV
My husband has had 3 major cancers over the past 8+ years. Non-functional neuroendocrine of the pancreas, with a removal of the tail 1/3 of pancreas and spleen out as well; at the same time he was found to have prostate cancer. We opted for the radical prostate surgery since he had 2 major cancers at the same time. There was a problem with removing the prostate as it “stuck” to the rectum so after recovering for a couple months he had full radiation treatments as well to the pelvic area. They also stitched the urine catheter to the urethra during the surgery so it didn’t come out as it was supposed to after 10 days. Back to surgery to remove that. I say all this as it has compounded the decisions we are now faced with. 9 months after the prostate surgery, there was spread to the lungs with 13 nodules in 4 lobes. He has been on Lupron shots for the past 7 years. Last October he was found to have urothealial bladder cancer stage 4, as it has spread to the pelvic lymphs. The tumor in the bladder blocked the opening to the ureter from the right kidney so it wasn’t draining and the kidney got blocked so a stent was placed. He completed a series of 6 high dose chemotherapy in January which has resulted in renal failure – currently at 25 % kidney function. He has had difficulty with emptying his bladder from a narrowing that occurred from the catheter that got stitched in so the neo bladder will not be an option and leaking continuously.
They need to MRI’s now without dye to protect the kidneys so they are hoping to determine if the bladder cancer is gone and if so they want to do a complete removal of bladder, lymphs, and rectum (due to the previous problem with the prostate and the rectum and that he had the radiation as well and adhesions/scar tissue. A very invasion and complicated surgery in a couple months. So ileal conduit and colostomy are planned. IF the bladder cancer doesn’t come back before. A full body PET scan is now being considered to clear him for surgery. Everything I’ve read and from the specialist we saw recently there is still a better than 50% chance that even if he has the radical surgery that it will come back. Differing opinions from oncologists as to whether immunotherapy would be an option and risks and benefits. Kidney function will worsen with Ileal conduit and will speed up his need for dialysis.
I’m at a loss as to how to support him. One day he wants to move forward, the next he say’s “I know it’s back somewhere”. He refuses to talk with anyone and even as a nurse I’m at a loss. Any thoughts or advice I’d love to hear from anyone. Really, who gets 3 different major cancers, with two of them at Stage IV. -
6 Replies
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Cynthia,
Thanks for your insights. I know there won’t be answers but sometimes I just need to vent. Talking with family members they just don’t understand everything that is going on. I know he’s not all that unique but geez. Last two days he’s been in bed. Retching phlem. Not eating or drinking which is not going to be good for blood work next week. I don’t know if it’s just a bug or if something is going on. He doesn’t believe in mental health care. I do see a counselor once a month now, it was more often earlier this year. Thanks for listening.
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Friends are worth more than gold sometimes. And you can never have to many.
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 SocietyThank you very much that is nice to hear!
Kind of like I think you are what you eat, you are what you think…
I think there are 2 things that helped me, thinking positive thoughts and a gin & tonic baby…. :side:My husband ( and dad) both told me I should had been a lawyer for I can argue God off the cross.
I heeded that advice and recently passed the LSAT’s and was accepted into 2 law schools at age 63! LOL.If I can do it, anyone can. :) Why not…
Direct your focus and energy into getting well and thoughts of your future.Live, laugh and love.
Each of us is given but one pass through life. No retakes. No repeats.
Henry David Thoreau was one of American early classic writers. He penned On Walden Pond in 1854. He moved out of busy Boston to live on Walden Pond in a small cabin for two years. He explained “ I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. “
So, make a covenant –
To live well. Be good to yourself, your family and others. Be big in behavior, not small. Think mature, not immature. Take the long view, not shortsighted. Keep your head about you. To dig deep for comprehension, not prater at the surface. Participate thickly, not thinly. Consider carefully Abraham Lincoln’s thought that “in the end, it’s not the years in your life that count. It’s the life in your years.” Or roll Oscar Wilde’s thought around during the day: “To live is the rarest thing in the world. Most people exist, that is all.” It is not at all necessary to do or have grand things to live well. All you must have is freedom and accuracy of perception and appreciation. Celebrate how great life is. The world is a beautiful place to be. Colorful. Stimulating. Interesting. With ample curiosities to keep busy for a lifetime, each thing leading to another.
To laugh often. Laughter cures the soul. It removes masks. Humanizes. Laughter heals many rifts, bridges many gaps. It builds memories. Laughter is universal among peoples. Laughter makes you live longer. Laughter makes friends, builds memories. Laughter vanquishes demons and warms your soul.
To love greatly. Love is the most generous gift given us. Love makes all else possible. Absent love, the world would yield merely a life which was poor, nasty, brutish and short, to borrow from Thomas Hobbes. To love greatly means to love unselfishly, for the sake of others as well as yourself. To love things beyond yourself, beyond your personal interests. Love gives back two fold. Love improves others. Love improves the giver.
Arleeny1,
Really like your optimistic way of looking at life. We need to be busy living not busy thinking of things that we have no control.
Appreciate folks from this forum, like Cynthia, you and others providing encourage words and insightful messages!
Tanya, I am so sorry all you and your husband have been through and are going through. Welcome to our forum and community. We like you know that there are not always easy answers, and above all what are the right answers? Your husband’s medical situation is incredibly complex making a difficult situation even more difficult.
It sounds like your husband is depressed, I am sure that is not revelation to you at all. Have you talked to his doctors about an antidepressant it could help? If you look at my signature at the bottom you will see I have had an interesting journey. What is listed there is just the high points not the day to day infections, biopsies, tests and other surgery’s. So I know how hard it is sometimes to keep getting up and knocked back down. Depression is I think a reasonable response it seems sometimes. The problem is if it becomes chronic and effects recovery and desire to move forward.
In most cases you could talk to him about what he wants but if he has withdrawn from you that is not an option. But the truth of the matter from my expericance has been that once you get al the information from your doctors your way forward will become much more clear. At that point maybe with solid facts your husband will feel more like looking at his options and talking.
You are between a rock and a hard spot, your only wish to is to help, your frustration must be off the chart. I have been on both sides of the patient caregiver situation so I have insight into both sides. The truth of the matter is that sometimes all we can do is love them and be there for them. Make sure that palliative care is in place and keep trying as hard as that is sometimes.
I hope you are taking care of yourself, long term stress is not our friend. Know we are here if you need to talk we may not have the answers but we care. Please keep us updated.
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 SocietyThis is coming from my heart.
Your husband thinks it is there because it has been so many times and that is the mental mode he is in.
I have been there.Not with BC, but, with Non Hodgkins Lymphoma. I can explain this way.
In 98, at age 43, I was told I had it. I actually have 2 different kinds. I am here for a friend with BC.
I had chemo and surgeries, and what not. Then, it came back again the next year.In 98, it was found in my right ear, making that ear deaf, my neck, under both arms,
my heart, and the nodes outside my heart, my spleen, and, my left thigh.That was 98.
Year later it was all back.
The next year, it was back. Essentially, in all place, but, new added place. This time went from a stage 2 to a stage 4. I had nodules in both lungs.
And, it switched legs, lol, this time in my left. And, down the front of both arms. I had multiple surgeries and always as usual more chemo. I couldn’t do rads for it was everywhere.It came back six times. The last time, all the same places but, was basically, last year found in my eyes.
That was very disturbing. Always on either the ankle or thigh. I was always a stage 4 from there on in.I was in remission for 11 years before it came back last year.
But, after the third time, my husband would watch me feeling for lumps and bumps on my arms, or legs, my whole body, and he said, ” honey, you can’t do that. You will drive yourself nuts… quit feeling for it every morning.”
And, I did.
I always had differing opinions, and I always got a second or third opinion out of the network, i was basically in. Leaving fresh eyes to look at PET/CTS and tests. Then, I would ask my first one, whom I am still with today, what he thought after all the opinions laid in front of him. So, I chose to go with him as always.
Decisions are not easy. But, once like your husband and I have walked that long walk, we have that thought in our heads, ” it is still there” and it takes a long time to move forward from that. I thank God, I had the husband I had, ( he died in 2005 service related he was only 49) for he helped me realize, I couldn’t live fully thinking that or feeling for those lumps and bumps.
Decisions are tough to make. I feel for you both with all my heart. I truly feel your pain. I had stents in my kidneys for stones, and so many surgeries, my days of posing for Play boy are truly over, lol. Maybe, more like the Road Map of America. lol.
I know I am my oncologists Poster Child. And, he already told I am beating the odds. And,i truly believe it is because I have missions in life.
One, I lost everyone mom and dad, 6 uncles, and 2 aunts, 2 cousins all from cancer. Yet, and, thankfully, since, I got 2 wonderful grown sons, that my genetic testing came back perfect. The geneticist had a great sense of humor telling me, ” if you didn’t have cancer and RA, you would be healthy as a horse!” I have no bad genes, or mutated ones either… go figure.
I am glad for this for my sons and my little grandsons.
My other mission? LOL. the rellies I am left with I want to live to be 102 to piss them, off. lol.
I believe you have to think positive. My husband taught me that. And, even though, I was always the one whom was right, he was on this one… :)
Keep your chin up. God Bless.
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