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RE: My husband is having much pain- others?
Hello, my darling husband Mick (age 61) was diagnosed with bladder cancer last Friday via MRI. A urinalysis 3 days prior showed microscopic blood in his urine. The tumor is 4.5 cm large- yet we won’t get staging and high/low status until after cysto/biopsies. He’s going into Johns Hopkins (we’re so grateful!) this Friday for the cysto.
Mick is experiencing EXTREME pain all the time (level 7 to 9). Pain started 10 days ago at a level 3 or 4 only with urination and increased daily and became fairly constant (in between urinating, during urinating etc.) Doc says no pain meds until after the CYSTO. My question: Have others on this forum had this level of pain prior to getting their staging?. Can this pain still mean my sweet dude is in early stages- or has the train left the station and we are off to advanced cancer?
Like everyone with initial cancer diagnosis- we are in shock. The absolutely odd thing is that my husband is lean, eats a pristine nutrient-based diet, has been taking antioxidants for a decade, exercises a lot, doesn’t smoke, and drinks alcohol with moderation. He gets a physical each year, yet didn’t get a urinalysis and the urologist suspects he’s had this cancer about 1 year due to its large size. Mick had no symptoms at all until 10 days ago. His factor is likely family history of cancer (although not bladder cancer). His dad died of pancreatic cancer at age 43 and his dad’s folks died of cancer at 61 and 62. We are sad and scared…and this pain level has us pretty freaked out. Any words to share with us?
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11 Replies
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Jayne
I must get this straight.
You are NOT thinking of using natural means as the only plan of action are you?
You are still going to have the bladder removed aren’t you?I have nothing against natural forms of care, but, as you can see, clean living didn’t stop the cancer from coming and I am one of those survivors of bladder removal that is still around six years after surgery. A survivor as they say.
You are getting great advice from Johns Hopkins and they know their stuff.
If you are still on track with them for Radical Systectomy then my work is done here.I know this is all a big shock, and you are just trying to put things in perspective, but I assure you the journey is worth the fight.
Thanks for being here and best of luck to you both. I feel for you both.
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]
Hello Lelly- first off, I am sorry you were diagnosed with a rare bladder cancer. Sadly, so was Mick. He has carcinosarcoma. It is the rarest of the rare- and quite agressive. That said, like you, we remain optomistic. We are doing the traditional and the eastern route. Our motto? All faith, no fear. I wish you and all the folk on this site much good health!
I just read this thread this morning and feel compelled to share my experience. Your words about your children hit home with me. I have three children, all grown, and three beautiful grand boys with my first granddaughter due next month. They are the loves of my life and what pains me the most is having to share this news with them. It’s easy to imagine the worst. I was very recently diagnosed with a rare type of bladder cancer also – adenocarcinoma – after noticing blood in my urine. Unlike your husband, I have no pain and hope that you’ll discover that his is nerve related. This journey has been awful and wonderful at the same time. I am scared and sad, as are you and your husband, but overwhelmed at the love and support that has been pouring my way. My career, teaching, is a passion that has consumed my life the past few years and the cancer is helping me step back and gain a more balanced perspective. While taking a (hopefully short) respite from work, I’ve had the opportunity to spend more time with family and friends. In addition, I’ve been taking up some pastimes that I’ve always wanted to get to but didn’t have the time. Each day, I look at the good things that are coming my way and trust that for everything there is a time and reason. I will keep you and your husband in my thoughts as we venture this period concurrently.
Here’s hoping that you will find comfort in this time of trial. My heart goes for you and your whole family.
Hugs & prayers,
rakz
Hi all. Thanks for your helpful posts. It made the week of waiting better knowing there were caring folk out there! We got some tough news on Wednesday. Mick was diagnosed with a very rare bladder cancer called Carcinosarcoma. We had hoped for better news- but are working hard to make lemonade from the little lemons. We know it is muscle invasive- but will receive exact staging on Tuesday morning when we meet with his surgeon. Mick will have his bladder and prostrate removed soon-likely next month after he heals from the TURBT.
We have so many people holding us close to their hearts. So many people praying, dropping by food, coming over to cheer us up, joking and laughing to help us keep our load light, watching our dogs when we needed to be at the hospital, talking to our kids to cheer them on, shoveling our snow- wow! The world is so good.
Mick and I discovered this book called “Radical Remission” last night. I downloaded on my Nook and stayed up most the night reading. We are going to follow the 9 suggested steps with aims of reversing this cancer. (organic foods, meditation, joy-filled living etc.) It is a rare one indeed- just 1-3% of the folks get this neoplasm. Mick decided this diagnosis, nor its projected prognosis will define him. I like that! We are walking on this journey side by side. Something inside of me is confident my guy can get full remission. 25 years ago he walked fire- yep, blazing hot coals and his mind over matter resulted in no injury. My strong, solid, grounded, funny, kind and loving guy and I are going to walk coals toward radical remission. People do recover. People do beat the odds. I wish all of you well in your journey and am sending you special thoughts to beat the odds. Blessings, Jannie
Hello Jannie,
I am very sorry to hear about Mick.
When I discovered I had something wrong,there was Blood in Urine,first.
Then PAIN,discomfort. Dr. gave me antibiotics it subsided a bit,then pain came back.
Took a almost month to figure out it was cancer.I never really smoked or had cancer in my family.
But I did work with Arsenic contaminated metals in the 80’s into 1998. Ended up one of my coworkers got it too.
I don’t know what to say except you both are in my thoughts.
Radical Cystectomy
Massachusetts General Hospital
Nov. 6,2009
Jannie,
In regards to your husbands pain it may be similar to the pain I was having for over a year before I was diagnosed with CIS. I was being treated for OAB for over 3 years and in the last year and a half I had severe urethral pain at times and my urologist kept saying it was a possible prudendal nerve issue.
IT WAS NOT!!! my bladder was so irritated and covered with CIS that when I sat for long periods of time the pressure of the pelvic floor was pushing on my very damaged bladder causing the pain. I’m in remission now and have NO pain
Best wishes and good luck
It is unusual that pain is caused by the initial tumour,although it can affect nearby nerves as Sara Anne said. I believe the majorityof people who are diagnosed had no idea they had a problem, until something showed up on a scan, they had visible blood in the urine, or something showed up on a urine simple check.
I would certainly ask your doctor if he can prescribe something that does not go in contra of the forthcoming op. What I would reccommend in the meantime is that he increase his liquid intake- it could be an infection, which would be helped by more “flushing”, but also I have found from my own experience that becoming even slightly dehydrated has a negative effect on my waterworks as regards discomfort.I read that cancers develop over decades, not one year. But that does not matter. Only the stage and the grade matter. My cancer was present on a ct scan a year ago, but was missed. They told me that it still small now.
Thanks for the prompt reply Sara Ann- so appreciated. I just haven’t read many folks say they were having so much pain early on. We’d love it if the pain stemmed from a nerve being pressed. That would be so lovely!
This forum is a Godsend! I meant to write CT scan- not MRI. Mick is actually having the CYSTO this Friday as my husband was seeing a local urologist until we connected with Hopkins. I imagine next steps will be the TURB, as he is not going to be put under this Friday. Hope the TURB happens soon. Like everyone, the waiting game is maddening!
I am relieved to hear that this level of pain does not necessarily mean advanced stages. Mick is tough about the pain- he’s hanging in there.
Talk about Baptism by fire. I’m clocking in 6 to 8 hours a day reading. Then each evening my husband and I go over the key information as best we can. I learned a lot from reading the forums on this site. You folks rock!
We are embracing the “no fear, just faith and good docs” mantra. We are keeping upbeat and positive. Still, breathing is hard (I sometimes realize I was holding my breath without notice!). We have 7 kids who adore their dad, (me too!) and today is our wedding anniversary. So, lots of good blessings in our lives. Again, thanks Sara Ann. I found your post comforting.
So sorry to hear about your husband’s problems, Jannie. It is important to remember that while smoking and a few specialized environmental factors are thought to lead to bladder cancer, for most cases we will never know what started it.
I assume that your husband is having a TURB (trnsurethral biopsy) at Hopkins? This is a biopsy done under general anesthesia and samples are taken to send for pathology analysis for an accurate diagnosis. Most of the pain relievers have anti-coagulant properties and I am pretty sure that the uro doesn’t want bleeding problems during the procedure. Hopkins is an excellent place for him to be treated.
Pain is not an indicator of the seriousness of the cancer. It is more likely that the tumor is near a nerve which is responding with pain. Hope he can hang in there until Friday. Perhaps he should consult with the doctor again if the pain becomes too much to bear and the doctor can come up with an alternative that does not affect coagulation.
Will be keeping really good thought for you both.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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