11 months 6 days ago - 11 months 6 days ago#57889by Jack R
Welcome to the forum. I think most of us got a bit squirrely when first diagnosed. Things are likely not as bleak as they may first seem.
The VA is a good place to be treated for bladder cancer - IF it is bladder cancer. The VA routinely rejects claims for disability based on bladder cancer, but they do a great job of treating it.
Half of my crew has passed, with a variety of cancers. I'd rather have bladder than bone, lung or brain cancer - by comparison, bladder takes less of a toll on quality of life. A whole lot less.
It will be at least a couple of weeks before you really have an idea where things stand. At the minimum, you need a pathology report on a bladder biopsy - and maybe a bit more of a work up before the doc presents a plan.
Immune therapy - aka BCG (Bacillus Calmette-Guérin) really is highly effective for the majority of early BC. (But not for all of us) And BCG does not destroy quality of life. Been there; many people on this board have (or will).
Chemo effect on quality varies. But to my experience over the past 5 years, is easier on bladder peeps than on those with cancers that have already slammed their quality of life. The worst part of chemo was being weak and tired - but that passed after each round of chemo ended. We all react differently.
Bottom line - It's WAY too early to think of not treating - IF it is bladder cancer. Find out what ya got, what the docs have to offer, and how well you will be supported during treatment. You remain in charge.
Don't let anyone skimp on offering options just because you are disabled. Some Doc may look at you, as I have been looked at, and all s/he can see is the disability - and they lower their expectations. I'm guessing you know full well how the VA system works - you have to keep asking for options that address YOUR needs.
Let us know what the Docs say. Maybe it's not cancer, or they give you a Grade and Stage. Lots of good people here who can describe how the medical system has worked for them, and offer thoughts on whay you might expect next.
Hang in there, it is just one more bump in the road.
What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back...
If by immunotherapy your doctor is discussing BCG as Alan suggested, there is no doubt in my mind. I had it...it was like going to the dentist every time (I am dento-phobic!) and no big deal. I am now 11 years and still bladder-cancer free. It was certainly very doable and nothing like traditional chemotherapy.
IF your doctor was discussing some of the newer immunological treatments for many kinds of cancer, including advanced bladder cancer, I suspect I would be more than willing to give them a try. Look up "Keytruda" for example.
Best of luck to you..you may be surprised!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Welcome. Thanks for your service. I too have had several friends with ailments that I believe are AO related. Sad that our government in some cases had no idea but, in many there had to be suspicions. Anyway, nothing can change the past.
Directly to your thoughts! You have a lot to live for! BCG is not always a cakewalk but, I can assure you it is a LOT better than the systemic chemo other cancer patients endure. A few have bad reactions and complications but, most of us get through this. You don't lose your hair, most don't have nausea nor do we bark at the moon (a little humor injected). Most do have irritation, such as peeing razor blades for a day or two after installation, urgency, frequency, many have fatigue. For me a few weeks after my regimen it is no only a distant memory. There are MANY on this board years later leading happy, and productive lives. My experience is that it has made me stronger and more effective in life.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Had a sonogram about 3 wks ago where in it showed something (?..A growth?). I am a VA patient and 100% disabled for mental condition. Got sent to Urologist and tomorrow I am going to get a cystoscopy as well as a CT w/ contrast. Certainly not looking forward to it but have faced and lived thru much scarier things. Since I have been involved in 3 long term care of buds I served with dying from what ever type of cancer caused by Agent Orange disease and several friends but not involved with their care. AO seems to manifest itself in so many kinds of cancer it like a roulette wheel as to what kind of cancer you get but also like the roulette wheel, if you stick around long enough you're going to lose anyway.
My experience with these guys has been exhausting as to long term care and some of the guys refused treatment and died sooner but painfully...well...all of them died painfully. My dad died in 1959,when I was a boy, of leukemia that I believe was due to radiation exposure while in the army during WWII. There was no treatment then. My buds who had chemo had, IMO, ruined what time they had left..life was prolonged and miserable. It made me real hard over about chemo and I will not take it. It was suggested to me, by Dr. reading sonogram, that he was pretty sure it was cancer but 'scope and CT would confirm. He suggested to me immunotherapy.
Having read up on it and reading some what here, side effects aren't much if any different to chemo, so I would like to know the diff if any of you can advise me.
I'm 75 and had a life most men wouldn't even think about let alone dream. Quit making friends yrs. ago cuz the attrition rate of losing them hurts too much and I just don't want to get involved. Recently married to a lady I do indeed love but we also made a deal. Since I have no one in my life, She is to help me die and she gets all my stuff and $$$. We've had a yr. and it's been good but I have so many health issues in the past couple of yrs that this cancer issue is just another thing...IBS, CAD, Bundle branch block, CHF, suddenly full blown diabetes and now insulin dependent, GERD, and a few other physical things and all kinds of drugs to treat these various things, PTSD, sometimes severe and apparently bi-polar...that catchy little trendy phrase to boot. I'm just tired of it all and don't want to stress my wife out in a long term care position. I may be putting the cart before the horse since I will know nothing definitive until tomorrow.
All that said, I'm wondering the diff between chemo and Immuno or just no treatment at all. I feel pretty good tho I always am in some kind of pain, say about 3-4 everyday and, naturally limited because of age et al. I never expected to make it past 20 but, some how, here I am.
I would very much appreciate your collective advise about chemo, immuno and no treatment. Like if no treatment how long, roughly, do I have until my quality of life becomes nonexistent. The Drs. etc are all great cheerleaders telling me bladder cancer is very treatable but due to my experiences "very treatable" does not mean successful. For me, I learned long ago that hope is cruel but that it also is a human condition. Considering all my ailments, what would be the point of hope in the 1st place and at 75, about 55 yrs. more than I expected why would I even torture myself with hope? In a few weeks, my wife will qualify for about half my disability compensation. That, along with the value of my assets and S.S. and Medicare will ensure she will not be eating cat food in her old age...she's 20 yrs younger than me and I have encouraged her to seek out another partner after I'm gone...or maybe even before that. I just want to die at home and with my wife and not die in some facility alone. Man plans, God laughs..