Recently Diagnosed

3 years 8 months ago #53944 by MrsD
Recently Diagnosed was created by MrsD
First, I want to say how grateful I am to have found this forum. I’ve been reading as much as I can when I can. I am 58, in Houston, Texas and newly diagnosed.

A couple of years ago, I began having short and intermittent “flares” of frequency (not always with results) and pain. These flares only lasted 2-4 hours, once every 2-3 months. I thought I had a fallen bladder and I ignored it. When I wasn’t in a flare, I wasn’t thinking about it. Somewhere along the line they became more frequent and in the fall of last year, I went to see a urologist. Urinalysis/culture clear – no UTI. The doctor started me on Osphena to help thicken the bladder wall and Vesicare for frequency. The Vesicare didn’t help at all and neither did the Myberitriq he prescribed after that. In November 2016 he did a cystoscopy and said that I had a very “angry” bladder. We discussed Interstitial Cystitis. My symptoms fit this to a tee. Since there’s no known cause or cure for IC, there wasn’t a whole lot he could do other than try to treat the symptoms. He started me on Hydroxyzine and told me to continue the Osphena. The flares went back to being intermittent. Flash forward to this past July – I had a major flare that lasted days. Doctor did another cystoscopy – “pissed off” bladder. I was so depressed and fatigued from the constant 24/7 pain - we agreed that it was time for biopsies. I had the biopsies on August 9; he told my husband that although he didn’t see signs of cancer, just an extremely inflamed bladder, we needed to wait for the results.

We went back a week later for the biopsy report, and I just knew something wasn’t right before he even walked into the room. Sure enough, the pathology reported one sample as “urothelial carcinoma in situ, negative for invasion, muscularis propia absent.” The second sample was “suspicious for high grade urothelial carcinoma.” The overall “microscopic description” was “sections show urothelial mucosa with a somewhat nodular appearance covered by urothelium with carcinoma in situ with local pagetoid spread. The underlying chronic inflammation may be responsible for the nodultar/polypod appearance on the cystoscopy. Muscular proparis is absent. Negative for invasion.” The doctor said he was sending the samples down to MD Anderson’s for a second opinion and that after that I would need more in depth biopsies. I am not looking forward to this is I experienced a lot of pain after the first biopsy. Doc had prescribed Urogesic Blue and Uribel – the Uribel helped a lot. I have an appointment on September 8 to hear that second opinion. Three weeks to let my mind wander as well as google every single word in the report. I came across this site, and am very thankful.

So…I don’t really have as much information as I would like, no staging or grading. With only two samples taken, surely there could be more areas of carcinoma and maybe those will show its invasive. I don’t know. I did ask him what treatments were available and he said removal of the bladder or BCG treatments but he would refer me down to MD’s. I learned that high grade means aggressive and when I asked how aggressive he said “2 to 4 years.” My heart broke for my husband who was speechless and stunned. I felt like I wanted to shield him from this unexpected diagnoses, like I had let him down or something. This feeling was and still is to some extent overwhelming. Of course, my husband is extremely supportive, but I’m very much aware that even though I will need support, this is a journey that I kind of have to travel on my own. I’m not sure if that makes sense. Anyway, thanks for letting me ramble. I plan on keeping up with this forum and reading some of the older posts. Lisa

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3 years 8 months ago #53946 by sara.anne
Replied by sara.anne on topic Recently Diagnosed
Sorry to hear your story. However, take a deep breath and try to relax a bit. First CIS is always considered high grade. However unless it has spread into the other layers of the bladder it is very treatable . I was diagnosed with CIS almost nine years ago and was treated with BCG and have had no reoccurrences and I'm doing great! Unless yours has spread and the biopsy report does not indicate this BCG would be the treatment of choice and you should do fine .

There is a lot of information here on the forum about both CIS and BCG . Just use the search function at the top of the page . In addition if you go to our homepage there are links to all kinds of information and discussion about both these topics .

If your urologist does not seem sure which treatment options are available to you I would strongly suggest that you get a second opinion in a place that treats a lot of bladder cancer. Now is the time to really attack this and get rid of it .

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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3 years 8 months ago #53947 by Arleeny1
Replied by Arleeny1 on topic Recently Diagnosed
I do not have BC. But, I have been there when I was told in 98, I had 5 years.
WELL, my friend, I wish I had made a bet on it, and a REALLY big one, for that was how many years ago?
and, I had to treat the NHL (lymphoma) several times, but, I am in remission baby...

I feel whomever, told you that, jumped the gun. All the facts are not there.
EVEN so, do not put stock into what I call foolishness.

Ask anyone here, yours is treatable.
DO not lose hope.
And, let your husband support you in everyway possible.
Mine would make me a " tiny cup of tea" and, that tiny cup of tea meant the world to me.

I am probably right now, as pissed off as your bladder, lol

Keep your chin up!

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3 years 8 months ago - 3 years 8 months ago #53948 by Alan
Replied by Alan on topic Recently Diagnosed
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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3 years 8 months ago #53951 by Jack R
Replied by Jack R on topic Recently Diagnosed
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


Bladder cancer Grades and Stages are explained at:
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: 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

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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3 years 8 months ago #53964 by MrsD
Replied by MrsD on topic Recently Diagnosed
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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