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Again and again and again
In November 2012, my husband started having blood in his urine. Local doctors treated him for two whole months with antibiotics, insisting that he just had a urinary tact infection. Finally a blood clot blocked his ureter and put him in such extreme pain (it was so scary!) that they finally did scans that found things that didn’t belong in his left kidney. After a cystoscopy, the doctor recommended that the kidney be removed ASAP. So, in late February 2013 – on my husband’s birthday – his kidney, ureter, and bladder cuff were removed. About two months into recovering from the surgery, blood in urine returned. Two weeks later, a cystoscopy found many tumors in his bladder, which was clear before. These were scraped out and two weeks later husband began six weeks of BCG treatment. Two weeks after the last BCG, a new cystoscopy found new tumors. This was yesterday. Oh my goodness….I am freaking out!
My husband has absolutely no risk factors for bladder cancer other than being male and in his late 50’s. He has never smoked, he exercises every day, we eat well (except too much ice cream)….. Why, why why???
We go back to see the doctor the week after next to see what his options are. The doctor is concerned about how fast the cancer keeps coming back. I guess I don’t really have a question other than to see if any of you have ever had such fast reoccurring cancer and to get any information/experience you have that might help us wrap our minds around what is happening.
Thanks!
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18 Replies
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My husband’s radiological oncologist (is that what they’re called??) is also the director of our hospice house. I’ll be sure to ask his advice when we meet with him again next week.
Thanks so much! -
I would give them a call and see what they have to say about your situation. It is best to have them lined up than finding your selves in need and have to start then.
Please keep us updated we are here.
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
Thanks for your reply. I would never have thought about palliative care. We have a brand new hospice center in our small town. I don’t know if they serve people so early in their treatment. However, since my husband’s pain is not improving it might be good to explore.
That is a hard question to answer it depends on a lot of factors. Some chemo regimes will cause a lot of fatigue others not as much. The same goes for side effects such as nausea and some people experience more brain fog than others. It probably will come down to a combination of what your husband feels he can do and what the doctor wants him to do. Please remember that chemo lowers your resistance to germs as a whole and there may be times the doctor wants him to not so much be a hermit but to reduce exposure.
We are so sorry to hear his bladder cancer has spread I hope you are finding ways to manage his pain well. Many people do not like to think of Hospice care as palliative care but it is. It is a good idea to talk to your doctors about it as it can be a great help to have a support group ready to help as needed.
I know that this did not help much but keep us updated and know we are here.
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
Unfortunately, the cancer spread to my husband’s hip bone and lymph system. His hip actually fractured because of the cancer, so he is in a great deal of pain and can only walk…very slowly…with a walker. He is currently receiving radiation on his hip and once the radiation is complete, he will begin chemotherapy. All of the doctors insist that the pain will decrease and the hip will heal with the radiation, but we aren’t seeing much improvement as of yet.
It is hard to stay optimistic and I am absolutely exhausted and heartbroken. Seeing my strong, vibrant, extremely independent husband like this just breaks my heart. The fact that he depends on me for so much is really hard on him, though I don’t mind at all.
Now for a question….just how debilitating is chemo? Will he be bedridden? Work is what keeps him sane, even if he is able to work only a few hours a day. Will he be able to keep going in to work for the eight weeks he is in treatment?
Sorry you are having problems. Chemo is doable and we will be here to help if you need us. First get a solid diagnosis and if needed what kind of chemo they will use. Crossing my fingers that you don’t need that kind of advice. Please let us know what you find out.
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
Hello again,
My husband had his bladder, ureter, and prostate removed shortly after I first posted two years ago. All of his check-ups have been excellent, with no signs that the cancer has returned. Since the surgery he has had problems with debilitating chills and he had a hernia with the intestines poking out by his stoma, otherwise his recovery has been good.
About three weeks ago he got infected with Rocky Mountain Spotted Fever (damned ticks!), which was quickly and effectively treated with antibiotics. Shortly after he was done with the medication, he started having pain in his hips and back, and this morning he vomited after two bites of breakfast. We figured that the RMSF was back, so he went to his family practitioner for help. Blood tests found no evidence of infection, so they did a CT scan which showed enlarged lymph nodes in his torso. The MD thinks that this might be evidence that the bladder cancer metasticized. I am hoping that they are enlarged due to the infection even though it is completely gone. His MD is going to consult with Dr. Chang at Vanderbilt, but she feels pretty sure that it is time to see an oncologist.
I assume that chemotherapy is what happens next, if indeed the cancer has returned. Any words of wisdom about chemo and what to expect?
Hello again,
Thank you for your sensitivity. It was very thoughtful of you to consider how it would affect me by posting. For the most part I am very positive, but I do find that if I read too much it does indeed begin to affect me adversely.
The thing is–I don’t feel sick. So it’s easy to just keep on keeping on. But I have become very careful about how much I take on, being sure I am resting and NOT STRESSING.
Yes, I have read quite widely about negative emotions and how they affect our health. It’s funny how you could read and think that all is well….until something like this happens and then you have to sit back and really have a look at your life, your relationships and your feelings, etc. It’s been a whole new eye-opener, believe me.
I have finally gotten part of my story up on my blog. I thought I was posting in my “biography” but it just went directly to the blog. It’s only Part 1–so far I’ve written only up until my “big” surgery (my nephro-ureterectomy). I haven’t gotten to the bladder cancer part. Soon.
I just had #3 BCG yesterday. So far I’ve been handling it pretty good. Yes, I know all the stories about how it gets worse. The worst so far for me has just been the fatigue. I woke up with a headache last night but not sure if it was the BCG or something else. These things are so subjective.
Anyway….yes, let’s keep in touch. I am praying for your husband. God is able–even when all else fails!
Is your husband on any alternative treatments to help out? Nutritionally?
He seriously might want to set aside the ice-cream for a while….and all sugar. It’s hard–but he can do it.I’ll keep you posted as to my progress with the BCG. I finish the induction phase on July 31st and then need to wait 6 weeks before my cystoscopy. It seems like in the U.S. they check about 2 weeks later. I mentioned that to my urologist, but he said here they wait 6 weeks. Then my maintenance phase would begin another 6 weeks after that (3 months after Induction BCG).
Past my bedtime. Talk soon.
Teresa
Radical Laproscopic Nephro-Ureterectomy: 05/18/12
TURBT: 01/14/13 (dx: CIS, high grade)
TURBT: 05/28/13 (dx: pT1, papillary urothelial carcinoma, & high grade & CIS)
BCG: Induction Phase completed: 07/31/13
Hi Teresa!
I read your post last week and wanted to reply given that my husband’s experience seems so similar. But, I was afraid that I would be discouraging to you so I chose not to write. I am so glad that you read my post and responded. Let’s just hope that you have more success with the BCG treatment than he did.
I know of a good amount of research that shows that holding in negative emotions increases vulnerability to cancer. If you are constantly caring for others and never letting them know that they are asking for too much and that you feel frustrated or angry about that, it just might have been one factor in making you vulnerable to developing cancer. But, who knows?
I would love to hear more about your history. It looks like you have been living with this for a while longer than we have, so any information would be a help to me.
Thanks so much for responding!
Greetings from Canada!
Your message interested me…..I just posted last week asking if anyone else had kidney cancer BEFORE bladder cancer. That’s my story too.
My journey began a year before your husband’s….in Nov. 2011 and now I am in the middle of BCG treatments for bladder cancer. I too have been a very healthy individual with no known risk factors. My first urologist kind of scratched his head and said “you just don’t fit the profile!” I was only 55 when I was first diagnosed, female, non-smoker, went to the gym, very active, ate very healthy AND I’m in the natural health and wellness field.I have since discovered, like we all know….no one is immune. I went to an Integrative Cancer Centre last year (Naturopaths who work with oncology patients and their doctors), and I was saying how I didn’t understand how this could happen…..I was doing all the right things. My naturopath responded by saying “Because of the nature of our clinic (naturopaths) probably 95% of our patients say the same thing!”
There are SO many factors involved. I have come to recognize that stress is probably the biggest issue for me. I was just living with stress all the time. That is the one area I have tried to work on big time! Learning to set boundaries, learning to say “no” to people (even family), etc.
My diagnosis is also “invasive” and “high grade”. But I am looking forward to being not only a survivor but a THRIVER!!! Believe me, I know your fear….esp. like you said, with only one remaining kidney. Stay positive!
Be encouraged! You are not alone!
If you would like to know more of my story I would be glad to share it–just didn’t want to bore you. I did begin to write my “history” on my profile, but I don’t see it posted yet.Looking to hear good news!
Sending hugs and prayers too!
Teresa
Radical Laproscopic Nephro-Ureterectomy: 05/18/12
TURBT: 01/14/13 (dx: CIS, high grade)
TURBT: 05/28/13 (dx: pT1, papillary urothelial carcinoma, & high grade & CIS)
BCG: Induction Phase completed: 07/31/13
Thanks George!
We are both dreading and looking forward to meeting with Dr. Chang next week. I’ve been doing a lot of Internet research and found an excellent article from Stanford University that has a small discussion about bladder cancer that is noninvasive yet very aggressive, which is what it seems like my husband has. The article helped to make me feel less hopeless about the situation, though it looks like my husband might have to have his bladder removed, which is a true nightmare to even think about. I am so amazed by the upbeat spirit of everyone on this site. You guys make something as crazy as having your bladder removed seem downright doable, which is exactly what we need to see! :-)
RD
I had to chime in and give you a pat on the back (virtually) and say hello from another survivor. Your husband will join us.
My wife and I found that we made a great team beating cancer, and you and your husband sound like a good team too.
I know what a blow the news must have given you. But you are troopers, and I can already see that you are bouncing back from being floored initially.
You are in the right hands, at the right hospital, with the right Dr.
Trust them…… Take charge of yourself and your husband’s health. Ask any question that comes to mind….. And don’t take any fuzzy answers.
Good Luck
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
What a great idea to brung your dogs with you! We have to hire a cat sitter for us every time we go down the Nashville.
I think that in another day or two, after the shock wears off, we will be back to our normal optimistic selves. And, thanks for pointing out that removing the bladder might actually keep the cancer from going into the kidney. I hadn’t thought about it that way. Thanks!
You guys are great….I can have these conversations with anyone else. Thanks all!
You have to BELIEVE that you will win the battle. It is understandable that he has been shaken by this latest news. It will take a bit of time to process what that may mean. Then he, you, and Dr. Chang can get about the business of doing what is needed to get him well again!
It’s very scary to contemplate. It may mean he will undergo a radical cystectomy, but it would also mean that the source of the cancer will be out of his body which may prevent the cancer from getting to his remaining kidney. Try to look forward to the best possible outcome for any given scenario. That’s not easy but you are right… you have to stop letting your mind go to the dark side of bc.
I hear you on the hotel stock. I always stay at Comfort Inn Downtown because they allow pets and have ground floor rooms with outside access. I always have to take my two dogs and my sisters go with me to “dog sit” while I’m at my appointments.
I will be thinking about the two of you. Keep us posted…
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Thanks Catherine!
We are thinking that we should buy stock in Hampton Inns since we stay at the one just a few blocks from Vanderbilt so often. :-)
I try to stay upbeat and optimistic but yesterday was such a blow. My husband actually looks a bit defeated today, which I have not seen in him through any of the other experiences – even when having his kidney removed. It is so unlike him. But, like you said, we will pull together and fight through this. I just hope that we actually end up winning the battle. It is especially scary since he has only one kidney left, so if his bladder is removed and then the cancer hits his remaining kidney……
Gotta stop going there. Sigh…
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