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Yesterday, I was clinically staged at 3B. During the TURBT they found the tumor extended to the outer bladder wall. The doc believes there is a good chance it has metastasized and if that is the case he advised I have 6 to 12 months to live.
My question is how much I tell others. My immediate family knows but as I am still not certain about my prognosis should I tell my other family, friends and coworkers? How do I know how much they are comfortable knowing? I do not want to make this harder on them than it has to be but I also don’t want them upset if they find out I have been holding back info.
Any words of wisdom? My dx has caused so much pain for others as it is I want to make the best possible decision. Thanks very much in advance for your reply.
Sophie’s Mom:
There is no correct answer to your question, I’m afraid. First of all, don’t let a doc tell you how long you might live because even with all their knowledge, it is a guess at best. You could get hit by a truck tomorrow just the same as anyone else. The fact is you are alive today and today is the only guarantee. Tomorrow is a wish for everyone of us, but only some will get it. In addition, even if the cancer has metastasized there may be chemo treatments that could slow or stop the progression for a time. There may also be clinical trials for which you might qualify. All worth exploring. Never give up. Live while you’re alive. Live with cancer, don’t be dying of it.If you are an open person, willing to share real facts with your friends and family, they will appreciate knowing (I assume they are all adults and capable of processing info you give them) and being able to encourage and support you as you encourage and support them. People quickly let you know how much they are comfortable knowing by the questions they ask (or do not ask). Some want little info. Others are truly interested and want as much as you feel you can share. Personally, I never want my condition to be the white elephant in the room and have shared as much as anyone wants to know. In my family, we have learned to joke about it and laugh a lot. It is a great stress reliever and we truly do not spend much time worrying about what might happen in the shorter rather than longer term.
You may wonder if I have any credibility. I have recently found out I have stage 4 metastasized bladder cancer, non-curable, treatable as long as my body responds to the chemo I am currently on. Tumours are in my lungs, behind my liver, in my peritoneum as well as the initial tumours that caused the initial concern. How long have I got? Today! And I’m having a good day. Hope you do too!
Greg
I fully agree with Greg, he is quite an inspiration. I strongly suggest you print Greg reply and read it 3 times a day. I am somewhat surprised at the doctors comments. Is he a family doctor or an Oncologist?. Forget what was, accept what is and plan for tomorrow!.
When dealing with aggressive tumors, quite a few parts can be removed along with the cancer. In my case I am a male parts are different but the goal is the Same Of course, chemo and or radiation will be required. My bladder cancer was a. Stage 3 and very aggressive on the wall of the bladder. Post surgery lab reports confirmed cancer in the prostate, bladder of course and 4 of the 21 lymph nodes. But everything is removed!!. I took 3 months of chemo prior to surgery and I am presently taking radiation for 5 weeks to kill the remaining cancer cells. I am in the. Ottawa area and I deal with a very good health care team.
With treatments and surgery, cancer can be beaten. TO QUOTE GREG LIVE WITH CANCER DO NOT DIE WITH IT!.
As always, Greg is an inspiration, and his statement “living with cancer, not dying from cancer” is our mantra as well.
With my husband’s permission, I sent a weekly email update to all family and friends regarding treatments, responses, and generally how he was feeling. This eliminated the “elephant in the room” for us.
It made getting together with friends and family much simpler and easier. Everyone had the facts and knew what to expect, also realizing that we were being transparent, so, no question was “too much”.No one, including physicians, can predict the future!
Ieva
Sophie’s Mom
Looks like you are going through a challenging time, take it one day at a time and stay positive!
Regarding your question about “how much to communicate to others”. If I understand your circumstances correctly, I believe your current prognosis is a bit unique because it’s still to be determined. I am sure your doctor will want to do further scans and tests to confirm if your cancer has metastasized or not! I am all for openness and keeping close family and friends updated, but I suggest you may want to wait until your final prognosis is in (which I am sure will be in the very near future), before saying your cancer has metastasized and any possible results thereof, just my thoughts, hope it helps.
I wish you the best of luck in the days and weeks ahead.
Glenn
Thank you to all who replied and especially to Greg. Greg, your advice was invaluable! It truly helped me turn a new page and put things in perspective. I went from being very scared that I would die to very happy that I have today. Got out of bed. Went outside. Took a walk in the ravine and enjoyed the beautiful autumn weather. Visited with friends and took my cue from them which allowed me to have an open conversation Went for dinner with my parents and generally got on with the joy of being alive. Your words changed my focus for the better and I am truly grateful.
One of the reasons the doc believes my cancer may have metasized is the amount of pain I am experiencing (I also have a large volume of blood consistently in my urine and many blood clots among other things). Has anyone else had experience with pain? Does it correlate with stage? Any tips on good management? I am on meds but they never seem to keep up with the pain. And having consistent pain doesn’t allow me to “forget” the cancer for even a moment.
Living for today.
Melinda
Melinda, good for you. In my nearly seven years with this disease at various stages I have found that my perspective changes everything for me. And completely confuses and exasperates the folks around me who think I should be dragging around in a blue funk all the time. Some don’t think I take it seriously enough. They have not been where I have been to see that I do take this very seriously, but choose to laugh when I can. I have two sons still at home, both in their twenties, both of whom I am very proud, and I want them to see how to handle crises when they come along, as they do for everyone of us, though different crises for different people. They should not need to suffer the misery of my foul mood when it is within my ability at the moment at least to decide to enjoy today and get on with living. When the time comes for them to remember me, I hope it is with a smile, not with a frown and regret. We talk openly about what may come in the months or years to come and I am trying to get everything in order so that when I pass to glory they do not have a confusing mess to try to clean up. I’ve already written my own obit! Found it quite fun, actually. I did not put in the dates and times!!!!! Also have written down an “asset inventory” which I would recommend everyone do. It is basically a list of what you own, your bank accounts, your investments, your retirement income sources, your accountant’s name, your lawyer’s name, where everything is so that those who pick up the pieces do not miss anything. It’s good to have one of those no matter what your medical situation.
Have a great day!
Greg
Melinda
There is so much good advice on this website. Listen to the people who have been on this journey.
I decided not to listen to my first doctor, and decided to battle the odds. I take extremely good care of myself, I am grateful for every day that I wake up on “this side” of the grass.
I try to remember that each day is to be lived to the fullest – to see the big picture – that I’m alive and I have gifts & talents that I should share each day with the people in my life, that I have a purpose on this planet and each day I work towards that purpose.
I remember to also see the little things – the color of the leaves as they turn, the sound of laughter, the smell of flowers, the smile of a friend, enjoying a joke with my family.I am not a statistic, I have beaten the odds. No one knows the number of our days, only we can determine the quality of each one of the ones we are given.
You have gotten some excellent advice Melinda so I will only add my welcome to the site no one wants to belong to but we’re hear anytime you need a cheering up.
FloHi Melinda,
I thought I would answer the portion of your question relating to pain. Greg has you covered on the positive vibes 🙂
My husband, Mike, had an immense amount of pain with his bladder cancer. He, too, took pain meds of every sort but they couldn’t keep the pain at bay for any length of time.
I am not a doctor and I don’t know if you would be a candidate or not, but you could certainly discuss with your uro.
Because Mike’s cancer had metastasized to the pelvic bone and was inoperable, the Pain Management docs in Ottawa put an “intrathecal catheter” or what they also call an implanted epidural in Mike’s back (done by an anaesthesiologist). It is another surgery (although Mike did well with it). It is somewhat similar to an epidural given to a woman in labour except that it stays implanted in the back and has a pump that delivers pain medication directly to the pelvic area. The bonus gift was twofold. 1) because he received medication consistently, they were able to keep the pain at bay and 2) his head was clear – none of that “stoned” feeling you get with the pain meds.
Like I said, might be worth a discussion with your uro in case it might help with your pain. Mike said it made a world of difference for him.
If you need/want more info, don’t hesitate to send me a message.
Monique
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