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T1-G3 New treatment Gemzar Questions

3 months 4 weeks ago - 3 months 4 weeks ago #57997 by swarmy2007
Again, Thank you Jack for taking time to guide me. I am going over article in link and as with others, will bookmark then for return reads. I guess the 1 thing I am good at in this is asking questions and U sir have been the provider of the most helpful, intelligent and pointed replies yet. Ur links been spot on. Good day sir and good luck ur journey.

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4 months 6 hours ago - 3 months 4 weeks ago #57986 by Jack R
SWArmy

You asked the magic question - to which all of us would like to know THE answer. How long can we try to control bladder cancer before turning to a radical cystectomy in hopes of removing all of the cancer ?

Bottom line seems to be there is no real answer. There are some suggestions from the experts in the field. In the earlier consensus study, Dr. Lamm suggested that there is a window of about 2 years from initial diagnosis to try other treatments, when BCG failed to do the job. Then it is time to seriously consider an RC, to prevent progression from superficial to invasive and metastatic bladder cancer.

Other considerations can be important. Some individuals are not good candidates for the RC surgery. It also matters the type of BC - high grade, low grade, papillary or CIS.

Being both a poor candidate for an RC and having CIS, I can look to an earlier article from Lamm where he discusses the options, and timing of the decision for a select group. Unfortunately, he winds up describing two possible outcomes, and fails to find a way to sort people by outcome. The article, however, offers insight to making the RC decisions with less that full knowledge for this particular group of individuals.

A summary and link to the full article are found at:
https://www.ncbi.nlm.nih.gov/pubmed/8573479
There are some surprises in the article.

If we look at a large number of reputable Consensus Documents, there is general agreement that delay in moving to an RC can be a BIG mistake when early treatments fail.

On the positive side, there are increasingly good reports on the newer drugs, such as Keytruda, in treating bladder cancer, when all else fails.

Each of us, individually, want the best outcome for ourselves. There is no strong consideration for, nor guidance about, all of our unique situations other than our treating care teams.

Best
Jack

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 , round 3
Begin year 4 with cis
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4 months 10 hours ago #57983 by swarmy2007
Your links will be read closely. U have taken a lot ur time to educate me and it's appreciated. Thx

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4 months 13 hours ago - 4 months 13 hours ago #57982 by Alan
SWARMY

Of course the answer to your question is depends and at the risk of confusing the issue further I dusted off one of my 11 year old bookmarks when I was contemplating possible need for the RC. While it does not directly name a time frame I remember the suggestion was 3,4 or 5 months max waiting to make a decision on stage 1 BC on a few I read back then (still trying to find that bookmark). Who knows how long it would take to go to stage 2 or 3?

See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792453/

Also, somewhat on topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2684254/

These are now "old" articles with techniques, screening and techniques being more advanced. Plus, they are simply small studies and everyones situation is different.

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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4 months 22 hours ago #57974 by swarmy2007
Thx Jack.... my VA hospital told me it would be 3-5 months before even get a Urology appointment. I've learned this area VA hospital does decent work if can ever get appointments and Mission act and other band aides haven't worked well at all. Seems my Oncologist who is running show now has made his mind up.... busy man with like zero time to speak to me on concerns. Knowing this and doing 2nd out of 6 Gemzar later today I've a question I have never had answered...… any idea how long it takes for a non-invasive high grade tumor to become invasive and then how long before spreads to other areas? Like a question with out possible answers for all different but doctors got me thinking it's a short term time span yet no prognosis dates. Just trying to figure out if have time to really seek another option or will my delay cause things to worsen beyond R/c. Thanks and have good day.

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4 months 1 day ago #57973 by Jack R
SWArmy,

I understand the desire to be treated as an individual and medicine's tendency to treat unins the "local standard of care procedures". Once we are declared a BCG failure, the RC the "gold standard" is recommended the best choice. Just some of us have other issues we think need to be considered, and we have to accept responsibility if id a Doc agrees and trys something other than an RC.

I'm surprised that the VA has been an issue. VA offers excellent care if you are near a major VA center, in my opinion - but I have two other insurance options - disabled firefighter and Medicare.

Being referred to the department head at a major cancer has been a mixed bag for me. After a 2 hour interview with intake - where I was asked every question I had already answered on multi pages of forms, the big guy came in and started describing what would be done. Not so much as a hello, or a chance for me to ask or offer anything. End of THAT . "Center of Excellence" university hospital. Second try. first meeting with a lower level Doc, at another highly recommended center went much better - the doc had time to talk and understand MY feelings and concerns about treatment possibilities. In about 6 weeks it will be time to decide what happens next,.

I hope you have an opportunity to obtain an additional opinion (or two) if you so desire. There is a list of NIH Cancer Centers of Excellence / Comprehensive Cancer Centers - perhaps one is near you. link below.

https://www.cancer.gov/research/nci-role/cancer-centers

I called and talked to a few centers on the list. They were helpful, I live in the middle of nowhere, so anywhere requires travelling.

Since you have done your reading, likely you have noticed that there are a number treatment possibilities after BCG failure ( Dr. Lamm discusses what is actual failure in the earlier article) and each one helps just a tiny % of people. Searching for what might help, before the cancer becomes muscle invasive, seems to be an unpopular option to many doctors.

Finding the right balance between trying options and moving to the RC is tough on us all.

Best,
Jack

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 , round 3
Begin year 4 with cis
The following user(s) said Thank You: swarmy2007

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