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Recently Diagnosed

1 year 2 months ago - 1 year 2 months ago #54053 by MrsD
Well, we're finally getting this show on the road. I have a CT scan this coming Tuesday and my first BCG treatment next Friday, 9/29. I'll be scouring the threads for everything on BCG treatments (there appears to be a lot!). I'm nervous about side effects as it seems they are varied from one person to the next. I'm feeling good, anxious - but good. The waiting has been the hardest part. I'm so glad this forum is here. I'll post my updates just in case there's someone else who is trying to get a feel of what to expect. Lisa

ETA - If anyone has any helpful tips, I'd sure appreciate it.

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1 year 3 months ago #53966 by Alan
Lisa,

At this time I would turn everything over to MD Anderson. If more biopsies are needed, the turn around will be quicker. Plus they may have something "new" as they are cutting edge. Keep us posted.

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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1 year 3 months ago #53965 by Jack R
Mrs. D

Waiting for answers is perhaps the hardest part of dealing with bladder cancer. There is a lot of waiting, and it does not end - there is always the next test or follow-up appointment, for years to come. There is enough time spent waiting to tie yourself into knots with worry and worst-case scenarios. Don't do that to yourself. We all start out doing it, until we adjust to the routine.

MRI or CT scans are likely to be taken before additional biopsies. Those scans look beyond the bladder for possible extension. Cystoscopy is a quick and easy way to keep track of non-invasive bladder cancer in a physician's office, and to monitor the effectiveness of treatments such as BCG.

It is not at all uncommon that a cystoscopic exam - the visual inspection by a doctor - to have unclear results; it can be hard to tell cancer from inflammation of the bladder. That uncertainty has led to multiple biopsies for me. After a while, you get used to such occurrences (seemingly setbacks) as being part of the treatment regime, not something to cause stress and worry.

Since the current doctor has already indicated that he would send you to MD Anderson for any treatment, you MIGHT want to call Anderson now (you can self refer) and explain that Anderson is performing a second opinion of your biopsy, and you will be refereed shortly. The link below describes self-referrals and includes links to forms and telephone numbers where you can talk with intake counselors.

Shortly you will have a much much better idea where you are, and what lies ahead. Hold onto the assumption that you have early stage bladder cancer, and that you will have treatment options. If anyone trys tells you different, make them explain why. Don't accept a poor diagnosis without strong evidence.

You and your husband will do fine. Keep us posted on your progress.

Best
Jack

https://www.mdanderson.org/patients-family/diagnosis-treatment/a-new-diagnosis.html

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 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 T0
The following user(s) said Thank You: MrsD

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1 year 3 months ago #53964 by MrsD
Thank you all for your replies. They give me great comfort and hope. I'm in Houston, so you can imagine how hectic things have been (we're fine), but tonight I'm going to read the links you provided. I also never thought of starting a diary - what a smart thing to do. Thank you for that advice.

I guess my fear is that because they only took two little biopsies, that when they go back in for biopsies...one will come out invasive. But as my husband says, I need to stop projecting. It's hard with so much time on my hands waiting for the second opinion from MD Andersons. My appointment with my urologist is for September 8 - and that's when he'll let me know if MD's agrees with the local pathologist's report. He said that I would need more biopsies, but I'm wondering if I shouldn't let MD's do that. I'll just arm myself with lots of questions in my cancer diary. I'd be lying if I said I haven't let my mind wander to the "this is all a big mistake" realm. MD's is definitely where we're going; I took my mother there daily many years ago. They are the best.

And yes - the urologist said 2-4 years life expectancy without treatment. It's scary to think I could have gone on and on being treated for interstitial cystitis if I hadn't told the urologist that I really wanted biopsies - although he agreed, it was not originally his idea.

Again, thanks for the uplifting words and kindness. This site has given me so much information. Lisa

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1 year 3 months ago #53951 by Jack R
Mrs D

Of course you and your husband are overwhelmed. Out of the blue you receive a cancer diagnosis, and suddenly the world turns upside down. It will straighten out shortly - so hang in there. DO NOT over think this, and do not accept any single source from the internet as having the answers.

Additional tests will refine the cancer diagnosis and better define the possible courses of treatment. Unless you have had tests other than the biopsies it is too soon to state the true stage and grade. It is fair to say, that based on what IS known so far, non-muscle invasive with Cancer in situ, that it is High Grade (CIS is always high grade). Subject to change with more information, you would be at "Stage 0is" - this is reducing the report verbiage to a summary code. This is a good place to be at this point.

Two sites below may offer some useful information. The first described the "generic options in dealing with bladder cancer" - the actual options depend on individual circumstances and care team practices. The second website explains how a pathology report is turned into a stage and grade rating. Again, stage and grade are subject to change.

Diagnosis and Treatment of Non-Muscle Invasive Bladder Cancer:
AUA/SUO Joint Guideline, by the American Urology Association
AUA/SUO Joint Guideline: Published 2016
https://www.auanet.org/guidelines/non-muscle-invasive-bladder-cancer-(aua/suo-joint-guideline-2016)

Bladder cancer Grades and Stages are explained at:
http://www.cancer.net/cancer-types/bladder-cancer/stages-and-grades/trackback

I am 29 months into the battle against CIS. There are a number of options, again depending on specifics. The gold standard is to remove the bladder (RC) before the CIS goes invasive, an option that is presented to me at every 3 month checkup and treatment series. BCG was not the magic bullet for me, so I have moved on to those other options. You will have options too.

You and your husband both have a cancer, just as my wife and I do. It takes a team, working together, to get through this. Both of you are affected by the cancer.

You mention the doctor saying "2 to 4 years". I HOPE s/he explained that was a "possible" time for CIS to progress, not a statement of life expectancy.. Consider the following about CIS -
"The mean interval from the time of diagnosis to cancer progression was 5 years", and
"Actuarial progression free, cancer specific, and all-cause survival rates were 63%, 79%, and 55%, respectively, at 10 years". [1999 stats]
"Survival of patients with carcinoma in situ of the urinary bladder."
Source: https://www.ncbi.nlm.nih.gov/pubmed/10357420

ALWAYS make your care team explain their comments completely. Always discuss every concern, problem, discomfort and fear with the care team - it is part of their job to get you comfortably through the treatment.

May I go out on a limb and make two suggestions:

If you can move your care to MD Anderson, or other Center of Excellence, do so.

Make a list of all the drugs you have been prescribed so far in your bladder journey, the strengths, the daily doses, the date started and stopped ,the understood reason for each drug, the effect of the drug and the reason for stopping each drug.

That drug list, updated, will become part of the cancer diary you will keep documenting all your tests, reports, and success as you beat this cancer. Share that information with your care team.

Stay positive. You and your husband will beat this cancer. Life for both of you will change a bit due to treatment, but you will get through this.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 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 T0
The following user(s) said Thank You: MrsD

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1 year 3 months ago - 1 year 3 months ago #53948 by Alan
Mrs. D I hope you are dry. What a mess you have in Harvey. I live in New Braunfels so we are not nearly as bad off. As you live in Houston it is a no brainer to see MD Anderson. The bladder cancer department is world class as you are aware. Also, you can self refer most of the time to them. Also, you are not alone in the fight. You mentioned a "supportive husband" which is important! Plus, there are many "listening" ears on this forum! Ask away anytime on any subject.

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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