First Cystoscopy after first TURPT. Smalls tumors Back. Need help and advice

6 years 2 months ago #54654 by Jack R
Catreader,

With 2 TURBTs, you should have 2 pathology reports, and have received a report stating the grade and stage of your cancer. I suspect that you have had a MRI or CT to look for any extension of the bladder cancer.

Grade and stage will define how agressive and how advanced your cancer is currently, and help forulate a plan treatment.

As Sara Anne mentioned, started early, BCG is an entry treatment for bladder cancer - there are a number of more agressive treatments. When started early, BCG has an outstanding track record of controlling or resolving bladder cancer. Unfortunately, sometimes it is necessary to move on to other treatments.

It is always good to focus on general health - diet, exercise, lifestyle when dealing with cancer. Personal choice changes, such as you mention, while lacking any level of documented effectiveness, can be continued with your doctor's agreement. Eliminating sugar and flour is a personal choice. Curcumin has been recommended by some, without any convincing evidence, but see what your doc says about it. CBD oil has been pushed by those who profit from the sale, as a cure for a huge range of ailments; ask your doctor about CBDs, and try to find good research that supports CBD use in bladder cancer - I find no such evidence in my 2 1/2 years of research.

BCG is clearly the way to start, when it is recommended. Even as good the liklihood or success, it is not 100% - I have moved on to chemo, as have others.

Bottom line - only the conventional treatments offer real hope of BC cure or control. Add anything you like, with your doctor's approval, and give yourself the best chance of beating your BC.

Best,
Jack

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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6 years 2 months ago #54653 by sara.anne
BCG can be life-saving for non-invasive high grade or recurring bladder cancer. It is not a "big deal" like the usual chemotherapy and 99% of us go through it with minimal disruption of our lives. Many of the "treatments" you have noted have no scientific reasoning or research behind them; at the best they would do nothing and at the worst they either interfere with treatments that are known to be effective or, if used instead of something like BCG, would result in eventual loss of the bladder or worse.

Cancers, such as bladder cancer, have been growing for many many years before they become manifest. Something (genetics, exposure to irritants, a minor disruption in a cell cycle) caused the cells of the bladder lining to become unstable and eventually develop into cancer. IF diet were effective against the cancer, it would have to have been applied 20-30 or more years ago. I have seen no evidence that flour or sugar have any relation to bladder cancer.

Please do not throw away your chance for a full recovery by rejecting something that has been proven to be effective for pie in the sky.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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6 years 2 months ago #54640 by catreader
I was diagnosed in early Sept with BC, TURBT on Nov 15.T1 grade .6 weeks later followed up with another surgery on Jan 10...to check for some particles that might have been missed during the first TURBT...they found more and are suggesting BCG...I'm disinclined to start the allopathic approach...anyone else trying to get the body to stop allowing the tumor to grow. I started no sugar, no flour of any kind, CBD oil and Curcumin...

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6 years 2 months ago #54576 by exsequor
Thanks you two. I'll be praying for you, too Joanne. The only positive about us both sharing this experiences is the prayers and insight we can share. Besides that, I am sorry we both have to share this.

This is scary because of the uncertain. I'm not certain what their plan is, but I think future pathology dictates their path at this point.

My mind is back more at ease and at peace, just like before. Hope you're doing well. And thank you Alan for the solid advice, as usual. You're right on, as usual, as well.

My TURB is on the 23rd I believe so let's see how this all goes!

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)
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6 years 2 months ago #54575 by Joanne2
This just happened to me as well. It is like I went back to the beginning. The good thing for both of us is that the BC is low grade and it was found. I feel the same way you do though. It's scary. I am 46. I just had my second resect and 3 small tumors removed. I start 3 instillations of BCG next month. I agree the 3 month checks are the key. I do wish there was something we could do, say cut back on sugar or red meat, etc.. to slow a recurrence for happening. There is definitely a powerless feeling. Keep up the good fight that we are all unfortunately fighting together. I wish you luck and will be praying for you.
Joanne

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6 years 2 months ago - 6 years 2 months ago #54574 by Alan
Exsequor,

The nasty item about bladder cancer is the re-occurence probability is pretty high. The good news is yours is rated low grade and there have been many on this board with similar DX. Thus the continual cystoscopy visits every 3 months which is normal and a TURB if anything is found. Should these continue coming back your URO will probably suggest BCG but, for now I'd let him do the guiding and whatever pathology reports dictate any next step.

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.

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