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The map of the journey

9 years 6 months ago - 9 years 3 months ago #28469 by mmc
I updated the map to include additional information about Stage 3 or 4 without known mets.

I also managed to get an image of this uploaded in the "Newly Diagnosed" blog section.

The first enttry in this thread has the link to the most recent version. I finally figured out how to eliminate older versions and keep it up to date.

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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9 years 6 months ago - 9 years 3 months ago #28463 by mmc
InTransition,

Thanks and YES, I really do want feedback.

It sounds like that course of treatment assumes that there actually is some mets. If the idea is to wipe out any micro mets prior to the surgery then it would stand to reason that they think there is a high probability of mets that they just can't see.

So, I'm not sure if it should be invasive/Y, mets/N or mets/Y.
Maybe I need to change the metastatic box to Metastatic found or presumed?" or something like that.


Let me think about that a bit and try to figure out a way.

If I get into T2/T3 versus T4, that could be one way (maybe).
I was stage 2 but I think Stage 3 is probably the same treatment path. However, it could be that a stage of T3 that is almost to the point of T4 along with T4 would go the chemo first then RC route.

I don't understand enough about that route so maybe if you could educate me more it would help me figure out how to expand the path.

Thanks again for the comments. I'm hoping for more so I can consolidate the feedback and then try to figure out how to incorporate it.

<updated the map to incorporate feedback>

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 6 months ago #28462 by inTransition
Mike:

Such a helpful visual! There is so much info packed into this flowchart.

I am taking you at your word you want feedback. I believe some attention needs to be paid to the section: Invasive? (Yes) Metatastic? (No).

This is where I dropped into the bladder cancer picture quite suddenly last March.

My urologist would have treated it exactly as you diagrammed above. I went for a second opinion at MD Anderson and they concurred with my urologist diagnosis, but rather than moving directly to a RC, I had 4 courses of MVAC chemotherapy over a period of eight weeks, followed by a recovery time of 5 weeks and then my RC. Of course I was doing my own research and that is a typical course of action, although sometimes the RC is done first followed up by chemotherapy, often as the planned next step, sometimes depending on the results of the pathology.

The idea behind doing the chemo first is to try to wipe out any micromets in ones system. Sometimes the bladder tumor shrinks as well, (even at times "disappears") but that isn't the goal of the chemo - it is to prevent eventual metastasis.

intransition

Diagnosed Stage 3 March 09.
RC August 09 at MD Anderson, TX
Ileal Conduit (Bag Lady)
Age 52

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9 years 6 months ago #28460 by sara.anne
Mike, this is GREAT!! I would like to see it posted somewhere other than buried in the Forum...I don't think it is "medical advice"....just plain common sense.

SA

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

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9 years 6 months ago - 9 years 3 months ago #28420 by mmc
If you can't open pdf files, you can get the pdf reader free from Adobe at: http://get.adobe.com/reader/


Regards,
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
Attachments:

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9 years 6 months ago - 7 years 1 month ago #28419 by mmc
I am somewhat of a process oriented guy so I put together a flow chart of the Bladder Cancer Journey.

This is not intended to be the be-all-end-all but is only a draft of a guide to the path for treatment that I feel has the highest statistical probably of the best outcomes.

There are lots of details that are not included as I tried to keep this at a higher level but I am hoping that it will be helpful to those with bladder cancer.

For example, I don't mention things such as <strong><em>"do as much research as you can as soon as you are diagnosed", nor do I specify every possible test your doctor may order, etc.</em></strong>

I've tried to stick with generally accepted "gold standards" of treatment but of course there will be a little bit of my own personal opinion mixed in. I'm of the general philosophy of "better safe than sorry" and that may be reflected in the diagram.

Edited this post to include the link to the latest version:

<strong>Here is a link to the map: http://en.wikipedia.org/wiki/File:Bladder_Cancer_Treatment_Guide_v4.png

You can print it out and use it for discussions with your doctor(s) about your treatment.

In addition to the map, ASK QUESTIONS. This Forum (American Bladder Cancer Society) is a discussion/support forum of people who have "been there, done that". We are here to help others who are dealing with (or helping someone else to deal with) bladder cancer.

Mike

Here is a doc file of the flowchart:

File Attachment:

File Name: Bladder_Ca...0112.doc
File Size:177 KB


<strong>PS: As always, I am not a doctor and this should not be construed as medical advice. It is my personal opinion based on my experience as a bladder cancer patient and survivor, the opinions of other bladder cancer survivors and caregivers, and research I have done.

<em>You are your own best advocate and have the obligation to question anyone who gives you advice, including your doctors</em>.</strong>

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
Attachments:

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