Has anyone refused treatment after being diagnosed?

@kjr11 every state has at least one national cancer clinic, frequently affiliated with a university affiliated teaching hospital. These clinics are typically not more expensive than any other state hospital.

@deidre77
Beautifully said, Barbara!
Thank you.

@dks2500 I refuse to go into medical debt to feed the system. Over 42% of patients fully deplete their personal savings and nearly 30% incur major debt within two years of a diagnosis.

@deidre77 With all due respect, I did not ask for advice, if I had, I would have titled the subject: "So, what do you all think about refusing traditional bladder cancer treatment?" (I do not say that in a snarky way.) I merely posed a simple question, told my story, hoping I would not be harshly judged (and admonished that I was 'playing with fire!')

To answer your question regarding insurance -- I am on Medicare and have very limited extra money to feed the medical system. But that is not my primary reason for not opting for bladder removal and years of futile ongoing treatment.

Not to be defensive, but I did not make this decision blindly in a vacuum. (In response to your comment: 'A healthy dose of knowledge about both body and illness goes a long way in clarifying our beliefs'.) Instead of rushing into a medical situation I felt pressured to make back in June, I have spent the past 4 months not only healing my body, but researching my options, choosing what I feel most comfortable with, reading up on current findings and alternative cancer solutions. In general, keeping an open mind and making informed decisions. That's not to say, I won't change my mind in the near future.

I'm not discouraging anyone to make the same decisions I've made so far, nor am I giving medical advice, or shaming people for their decisions. Far from it. That is not why I'm on this forum right now. I'm not even asking for support, but it is appreciated. My curious mind was just wondering if there were others experiencing anything similar to mine. But thank you for your gentle response, Barbara. You seem like a kind person.

@kjr11 Although brief and to the point, my comment reflected my concern for your approach and for your health as mentioned by others. Not a criticism, as you were so quick to jump to.
All the time you are vacillating, your cancer, already into the bladder wall, is growing.
I can fully understand your efforts to look at alternative treatments as I did 10 years ago when I was diagnosed with prostate cancer. My approach was to study the scientific literature and statistical outcomes and get opinions from oncologists both here and overseas, but I did not look at diet or homeopathy. It would have been too late for a change in diet and I have no faith in homeopathy for something as serious as cancer. In the end, I settled on the original treatment recommendation of radiation and it was successful. My PSA remains at <0.1.
As I have mentioned previously, back in 2023 I had one gush of blood while urinating, then nothing more. I consulted a urologist who had treated my prostate, who suggested it was from radiation cystitis from the prostate treatment years earlier, but he had better make sure by cystoscopy. Stupidly, I did not go back, then a year later, almost to the day, I had a gush of blood, so went back to the urologist who diagnosed cancer. After that I went to a cancer center for a second opinion and TURBT. The rest is history and I’m in the 4-weekly maintenance gem/doce treatment. So far so good.
Good luck with whichever route you take.

So happy that you’re feeling good. I think it’s important that you do what you think is right for yourself unfortunately there are things that are beyond our control. I wish you the very best and can appreciate your good attitude. I hope things go well with you, I’m in a position with mine is spreading. I’ve had four procedures so far. Nothing seems to be working all the best to you, my friend. I think your decisions are personal, unfortunately so the consequences for many but I hope that you continue to do well.

Everyone here has been through the trauma of being diagnosed with cancer, and understands the stress you are going through and has no wish to add to that. To answer your question more directly, I had TURBT on advice of my urologist within days of being diagnosed, but biopsy and visual examination made it clear the cancer was already invasive and I was told in no uncertain terms that I should put my affairs in order, and have immediate radical treatment or my outlook was poor.
So I had a radical cystectomy as soon as I had recovered from TURBT, within 3 weeks because my urologist - quite rightly - said the clock was ticking and time mattered. I was advised by him not to have chemo, as at the time as it had a poor track record, and none of his previous chemo patients had survived chemo . I understand chemo for BC is now much improved, and standard treatment supported by most urologists and oncologists.
But rapid and radical action by my brilliant surgeon/ urologist proved to be enough and I have now survived more than 28 years. The surgery and recovery, and some of the side effects was no picnic, but I thank God and my surgeon for it, and the rapid reaction, every day
So treatment choice matters, time matters, and the individual urologist matters. I am not a urologist, so take real informed advice, but knowing your cancer is already muscle wall invasive, may mean TURBT is already not the best option.
But whatever, don’t procrastinate, because there are no guarantees, but time really does matter.

@mikf Thank you for telling your story.

Yes, getting a cancer diagnosis was a bit stressful for the first few weeks, until I slowed down and really processed it. Until I made the decision to forgo having the TURBT surgery and accepting it, I really was not able to focus on first healing my body the very best I could. That was something I could control. That included stopping smoking, changing my diet, etc. I was extremely disciplined (still am). And the best part-- I stopped being stressed out! I know there is a very strong mind-body connection. High stress, hopelessness, and severe depression can negatively affect overall well-being, adherence to care, and quality of life.

I'm 65, single, retired and happy and content with my lifestyle. I've lived a good life. I also have the support of (most of) the people in my life that matter to me. This is my journey, and my choice to do this on my terms.

Good luck with your journey.

I’m sure that everyone here fully respects that you are entitled to make your own decision, and I am happy to hear you are at peace with that. However, your original post did say that you were still considering your treatment options, and that inferred some uncertainty on your part.
There is a great deal of evidence that healthy lifestyle changes can be extremely helpful in helping your body to tolerate the very severe treatments typically used for bladder and some other cancers. However, that should not be confused with thinking that they have any effect on reversing or slowing the cancer itself, because there is no evidence of that. Only advanced medical treatments and/ or surgery have that effect.
Provided you made your decision based on these facts, I believe that everyone here wishes you well.
Best wishes.

@kjr11 As fellow patients we all hope that you can find success in treating your cancer. We share our experiences with hope that they can benefit others. You are actively researching and working on your method of controlling your disease. I have done and continue to follow up with complementary treatments which may or may not have helped my survival of metastatic SCC of head and neck for 14 years. I have also followed the medical advice of my team at Mayo Clinic first and foremost. My husband is the bladder cancer survivor...so far so good.
I have a couple of interesting books to suggest as you are researching... How Not to be My Patient by Ed Creagan MD, a palliative care physician at Mayo Clinic. He describes all the lifestyle changes to support your health. I love this book.
Also Radical Remissions by Kelly Turner. It inspires one with hope when we are delving for answers.
I hope you can see that these other patients are also just sharing their advice and experiences. While some may sound like lectures, the intent is not to direct your decisions, but to share their education in cancer treatment. Please join us in helping others by sharing your experience.