First post. Looking for info about bladder cancer and low carb/Ketogenic diet

3 years 1 month ago #59975 by October28
Hello and sorry to hear about all the challenges.

90 minutes before BCG I take 1 mg Ativan to relax me + 1000 mg Tylenol for pain.
This has greatly improved my tolerance of the procedure and the pain after.

Immediately upon return home I take the AZO described by RJake1 below. Available over the counter. As a prescription your Uro can give you Pyridium. Your primary care MD or a therapist will prescribe Ativan or Valium for these difficult procedures.

If your doctor denies you this kind of relief then drop the doctor and threaten to report him for cruelty. Then act on it. URO's are not noted for their charm and compassion. Still you can do better through your health plan or a directory of hospitals. You deserve peace of mind as you approach all procedures.

Good luck,

Michael H.

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3 years 1 month ago #59970 by RJake1
I've found that AOZ and Ibuprofen help with the post-BCG discomfort. I take 2 AOZ (now available over the counter or online) as soon as I get home from the Dr office. I take the Ibuprofen a bit later.

The ride is still rough. Discomfort lasts about 8 hours for me and then I'm tired the next day, but the AOZ and Ibuprofen really helped me get though it. Compared to when I didn't take it there's a huge difference.

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3 years 1 month ago #59964 by joea73
I am glad to know someone who had proton therapy for prostate cancer.
Have they ruled out a possibility that the bladder cancer could be the result of the proton therapy?
I am aware of the difference between radiation therapy and proton therapy
in such that the radiation goes through the body but the proton will not. A urologist told in a prostate support group that he was surprised to see two patients in one week who developed bladder cancer because of
radiation therapy on their prostates. A few studies I read indicate that the risk of secondary cancer by proton therapy is less than Intensity-modulated radiation therapy (IMRT) but does not say the risk is zero. An expert in the risk of ionizing radiation says it would take years or even decades to develop cancer from ionization radiation, which proton therapy is also included, I am just wondering as it may affect your decision of changing the diet in an attempt to mitigate the risk of future occurrence of cancer.

Pain from BCG therapy.

Below is the link to the discussion between two well-known pioneers of BCG treatment for bladder cancer.
The video was made in 2014 so it does not talk about more recent treatment but it covers all basics including
the management of side effects.

Ketogenic diet

First, even a doctor who endorses the Ketogenic diet states that for cancer, it is for supplementary, not alternative
to the standard care which you have been receiving for the treatment.

Division of Cancer Epidemiology & Genetics of National Cancer Institute showed a slide for Major Causes of Cancer in the UK/US. It listed Smoking 20%, Diet 10%, Obesity 6%, Alcohol 5%, Infections 3%, Physical Inactivity 1%, Post Menopausal Hormones 0.5%, Medical Radiation 1-3% . Diet 10% is a high number, so it makes sense to review our eating habits. One of the studies which support the number is based upon a random study done in Brazil with 169 patients who were diagnosed with colon cancers compared to 101 people who had no previous cancer or family cancer history. The result shows that fish, vegetables, fruits, and whole grains did not increase the risk of cancer but beef, chicken, and especially port had increased the risk of cancer. This is just one study so we need to look at other studies to understand animal meat-based diet seems to have increased cancer risk.

Ketogenic diet's main goal is to reduce carbohydrate intake extremely, thus reducing the normal energy production by mitochondria which mainly uses glucose, then uses Ketosis which our body uses our fat
when energy from using glucose becomes insufficient for maintaining our body functions.

Below are the comparisons of protein, carbohydrate, and fat intake under normal, low carbo, and ketogenic diets.

-Normal diet 30% protein, 40% carbohydrate, and 30% fat.
-Low carbo 40% protein, 10% carbohydrate, and 50% fat
-Ketogenic 20% protein, 5% carbohydrate, and 75% fat

Though the ketogenic diet has shown some efficacy for epilepsy, there are no large studies to find out its effect and side effects of human cancers. So, at this stage, it sounds risky to bet the whole thing on the ketogenic.

Normal diet evenly protein, carbohydrate, and fat evenly. And that's what our body expects.
I do not know the long term consequences when we consume nutritions differently from our body expects.

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3 years 1 month ago - 3 years 1 month ago #59953 by sara.anne
Hello! I'll tell you what I always say about diet. A good balanced healthy diet is ALWAYS a good thing. But I seriously doubt that any limiting diet will do anything for bladder cancer. Whatever caused the cancer started a long time ago, long before there were any symptoms or signs. Something caused the cells in the bladder lining to become "unstable" and to become malignant. It appears to be the immune system that we need to stimulate to reject these cells. I understand the terror of multiple cancer diagnoses....I have had breast cancer, bladder cancer, and malignant melanoma and am still here!!

Stimulating the immune system is the function of BCG, as I am sure you know. (I assume that the "treatments" you had were BCG?) When side effects start to mount up, and this usually means that the BCG is working, it is possible to reduce the dose of BCG down to as low as 10% of the initial dose. By the time I finished my maintenance treatments I was down to 1/3. This is something to discuss seriously with your urologist. IF you decide that you cannot do any more, you at least have had a good shot at it!

As for docs in the St. Louis area, I do not personally know of any but Barnes Hospital has an excellent reputation in urology.

Sara Anne

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

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3 years 2 months ago #59951 by Flytoboat
Anyone here have any experience with the Ketogenic diet and bladder cancer? I know some cancers are inhibited by low carb/high fat diets. At 64 years, this is my third cancer diagnosis and trying a lifestyle change. Had prostate cancer 10 years ago with successful proton therapy treatment. June of 2019 had lung cancer, surgery removed the tumor and left upper lobe with no further treatment required. Diagnosed with bladder cancer October 2019 and have completed 12 treatments altogether. The last treatment was so painful I am not inclined to continue. My doc won’t give me anything that helps the pain. It was 8 hours of extreme torture. Any thoughts or suggestions appreciated. Also any Urologist or oncologist recommendations in the St Louis, MO area?
Thanks, Don

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