No surgery

4 years 8 months ago #57760 by madscout
Replied by madscout on topic No surgery
Thank you for your comments on your situation, I am in a similar place I have 2 more chemo treatments and will have my tests June 26th and Dr visit the next day, I will let you know what happens if the treatments worked and what the Dr recommends. I have spoken to 2 people who have had their bladder and prostate removed, 1 with a Stoma,bag, ans 1 with a neo bladder. Both are doing O K but have some problems with leakage and in continence
and bladder infections.

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4 years 8 months ago #57740 by wpl
Replied by wpl on topic No surgery

Thanks so much for the detailed and totally honest reply. You're right on all points made and they're good ones. I am apparently also beating the odds big time with chemo because just got the CT scan results today and the tumor is nowhere to be seen and there are no swollen or inflamed lymph nodes (and I've gone through the whole process with minimal side effects).

But my oncologist looked at me like I was crazy when I asked about no surgery … as he said it's why we're doing what we're doing and with it being metastatic already (small nodule on my lung which has shrunk for 13 to 10 mm) he feels there is too much risk not to take this opportunity to go in take the kidney. My right kidney is apparently pretty done in so don't think I'll have much choice.

Still weighing the options. I've had amazing family support and if I didn't know I had cancer could honestly say I'm in the best physical shape in the past 30 years. And that is just a note for anybody going into chemo … do all possible to eat clean and get fit. Targeted supplements if you can afford them or Go Fund me if you can't. Pays huge dividends!

Again truly appreciate the reply … it cleared up several questions and is great guidance.

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4 years 8 months ago #57690 by Jack R
Replied by Jack R on topic No surgery
Yes, some of have gone through pre-RC chemo (Cisplatin and Gemzar) then put the RC on hold. Whether we have been successful or not is yet to be determined. The VA has been supportive of my decision, and that of two others I have met. The option for RC still exists for me (us) - However none of us are metastatic.

It is real hard to compare treatment options by looking at a small group. Each of us has unique factors that are too important to dismiss in the small group. Either we are in good shape or not, have larger or smaller risk factors, and family histories are different, etc.

When we choose a course of action today, we have, at best, a statistical chance of knowing our tomorrow - based on years of medical studies involving thousands of individuals and a variety of treatments.

You and I both have bladder cancer.

My REAL issue of concern is my recent kidney cancer; I lost one kidney 50 years ago. My focus is on the one remaining kidney - I don't want to wind up with zero kidneys. For me, pre-RC chemo turned the kidney issue around - to the amazement and surprise of my doctors. So, I am in a better place than prior to chemo, and willing to stay her as long as possible. Not all my docs agree with my decision, but they are supportive - at least for now.

You describe lymph node metastasizes. From here, it seems you have a different big issue than me. There are lots of people in this forum who have been where you are - and there are many long term success stories. I suspect most people posting here who dealt with stage 4 bladder cancer have focused on the metastases and surrendered their bladder, as per the "gold standard" (I hate that term) of treatment.

All the statistics in the world, all the studies, all the recommended cures, potions and snake oils, and lifestyle changes fail to apply to any single individual.

In the end, it is an individual decision - what do I THINK is most likely (and acceptable) course of treatment to allow me to deal with my cancer and continue on with life. I have made a decision I am comfortable with, reserving the option to change my mind as time goes on.

I hope you can find a encouraging course of action, and a care team, that will provide you with life, comfort and peace.


6/2015 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
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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4 years 8 months ago #57685 by wpl
Replied by wpl on topic No surgery
Thanks for the reply. Started on a clean diet and exercise when they discovered the tumor. Since the diagnosis have worked with an integrative oncologist on supplements, including CBD and THC, to minimize the chemo side effects. So far so good ... Blood levels and kidney function is better than before the tumor was found.

All the western doctors recommend surgery... Standard practice. But know the chance of recurrence is high so just trying to see if anyone has successfully opted out of surgery.

Believe from all I've been told I'm already beating the odds. Know it's very unlikely I can kill the tumor but I know where it is and it's currently not an issue. Can't hike a steep climb without taking a few breaks... Other than that no symptoms. Seems like cutting into it might be the riskier option.

My brother had a rare soft cell in his thigh. 6 months after surgery it was in his lungs and he passed 3 months later. Probably skewing my thinking a bit!

As for your question I am 66 and live in Las Vegas. Have dropped 30 pounds and am the best physical shape in years. Even with chemo have been able to walk or bike 2 to 6 miles a day. Kinda looking at surgery as a higher risk but it will be an outside the box approach.

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4 years 8 months ago #57671 by Cynthia
Replied by Cynthia on topic No surgery
I have been through the same chemo regime + one and lost a kidney. Mine was contained and the kidney was a surgical complication, that was ten years ago.
As for surgery bladder cancer that has shown itself to be aggressive has a high rate of recurrence. If you have so many questions a second opinion may help clarify the situation. There are many places in the USA that offer excellent blc programs. If you let us know your state we might have some suggestions.
As for complimentary therapies, some are helpful some not so much. Never do anything without running it by your medical team. It could have impacts a lay person would never think of. Clean water, clean food, clean air, a balanced diet, relaxation, appropriate exercise to name a few are probably worth more than all the opinions on the internet.
I know it is easy to look at the statistics and lose heart but you know nothing about the type of care or lack of it, or their condition prior, or or or all the people they counted. Gather information and make informed decisions then stack the deck in your favor in every way you can.

Please keep us informed.

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
The following user(s) said Thank You: wpl

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4 years 8 months ago #57667 by sara.anne
Replied by sara.anne on topic No surgery
This is a difficult decision and a very personal one. I guess the statistics say that having surgery improves your chances over not having it but you need to decide your own opinion of the odds.

While a healthy diet is always a good idea, and a healthy body is something on your side when fighting any disease, it is highly unlikely that diet can reverse cancer. Whatever caused the cells in your kidney to go rogue probably happened decades ago. These changes happen all the time and our body fights them off (the immune system, again.) Sometimes some cells escape the body's defense system and cancer results. MOST of the time we will never know what started the problem with a few exceptions (smoking, for one.)

Wishing you the best whatever you decide

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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