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5 things I wish I knew at dx?

9 years 5 months ago #26647 by britt
Thanks for everone being here. I was sitting there just drifting off in thought this morning about how this board is my only tie to my Cancer,
I hope this doesnt offend anyone but I have to say it feels as if none of its real. After all the other issues that have been sidetracking me I am at such a complete loss. First and foremost, cancer is a priority issue. its a word we are terrfied of from when we first hear of it. I havent even had a chance to accept that I have it. My diagnoises was such a suprise. I went in for what i thought was a routine test and was told i was staying 3 days to recover from a cncer procedure. Then I end up with a dr who totaly washes his hands of me after just telling me he would be taking care of me and all is well!. Then the VA pulls me in house and after being shunted back and forth I find myself in physical shape that will not allow me to procede with even being further examined for a return of my cancer at tis time.

I hank you all. I stop by nearly everday and read what all have to share and offer and thank you for
What was said is just so true. We are not alone. Different degrees and and treatments, but the same cause for us to band together.

I hope I didnt post this inappropriatley here. reading the last post really touched me
I have to remember that this is real
britt

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9 years 5 months ago #26646 by Moonerj
My Uro gave me 1 instillation Mitomycin after right after my 2 & 3rd Turbt. But not after the initial Turbt.

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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9 years 5 months ago #26644 by pemquid
Everyone has pretty much covered what I would have liked to know, but I'm adding a couple more somewhat specific ones, that could perhaps be incorporated in the content of more general questions:

How do you interpret pathology reports? When I did on-line research when first diagnosed, I read about grading and staging, but the pathology report from my first TURBT did not at all use that language so I had no idea what it meant. Also, in the path reports there is a major difference between "muscle tissue is not identified" (i.e., uro did not go deep enough to get a muscle sample)and a statement that cancer cells are not identified in the muscle tissue (i.e., it's not muscle-invasive). How about publishing some typical path reports with "translations" that convey to readers how the reports relate to grades and stages, and to expected outcomes?

Regarding treatment, if a single dose of Mitomycin C now seems to be highly recommended after TURBT, why do many uros still not use it (mine included)? (After my second TURBT, 2 years after my first, I had done some research so asked about Mitomycin and was told they only used it for patients who couldn't tolerate BCG.)

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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9 years 5 months ago #26642 by Rockyiss
I wish I would have been told after the uro took a look and relized I had cancer that I probaly had cancer. There were five tumors. He told me I had polpys don't worry hed take then out and test them. If I would have had a clue it was cancer I would have gone right away to John Hopkins. to have the tumors out. Instead my local uro did it and didn't get any muscle,
oh well such is life Rocky

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9 years 5 months ago #26634 by mmc
Here are the 5 things I wish I knew at diagnosis time (and tried to find out about when I was first diagnosed) that I think all newly diagnosed people should know:

1. You are not alone! While we're sorry you had to join our club, we've been through what you are going through now and are here to help you.

2. Bladder cancer is NOT a death sentence! Bladder cancer caught at early stages (non-invasive) is very treatable. Actually, invasive bladder cancer is very treatable as well as long as it is caught before it spreads outside the bladder. However, it is extremely important that you treat this aggressively. Do not spend months contemplating options as time is cancer’s friend much more than your friend right now.

3. Treatments for non-invasive bladder cancer are very different from other cancers you have heard about. Even if your doctor suggests BCG (immunotherapy) or chemotherapy, it is instilled directly into your bladder (not into your blood stream) so it does not cause the hair loss, bone marrow damage, and other side effects that other types of chemotherapy have.

4. Second opinions from major cancer centers that deal specifically with bladder cancer are very important. You want somebody treating you and/or recommending a treatment plan that deals with bladder cancer every day. If your doctor has a problem with you getting a second opinion, drop him/her like a rock because it is an indicator that they are not such a good doctor. It doesn’t mean you don’t like your doctor, it means you want the highest chance of survival and this is borne out by the statistics. More experience equals better outcomes.

5. Keep notes. This is a stressful time and your memory of discussions with doctors can be spotty. Research shows it is very low. Keep a journal or log book of your visits, your questions, doctor’s answers, your medications, treatments, symptoms, etc. All of this will help you immensely during your treatment. A pocket tape recorder is OK also. Having a loved one accompany you on visits is also a good thing but should not be a substitute for detailed notes. Get copies of your records from your doctor for every test and every visit. Read them and ask questions about them and be sure they are accurate.

5 1/2. You are NOT alone! Search this site in the information area and read the information two or three times. Take notes when the articles raise questions that you want to ask your doctor. Search through our Forum section and ask us questions. There is nothing about bladder cancer that you can ask that is too personal.


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 5 months ago #26632 by Nix
1. Know that Superfical Bladder Cancer is not minor because of the word Superfical.
2. Know that BC runs in my family - my brother was Dx'd two years before me. He has a neo-bladder because by the time he was Dx'd it was stage 4 CIS. Because of his history, the first day I saw blood in my urine I RAN to the doctor - so after lots of BCG, so far, I have my own bladder.
3. Know what BCG Cystitis is and find a doctor that listens to you when you explain what is going on in your body. Took the Uro 3 1/2 wks to agree I have BCG Cystitis.
4. Know that this site gives great advice and caring people respond. :)

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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