Just \"diagnosed\" yesterday - 37 and very scared

12 years 1 month ago - 12 years 1 month ago #41509 by warrentug
Your post are almost word for word what I wrote four months ago...no matter what you have done in your life hearing you have cancer is the biggest thing you have had to deal with to date! No wonder it is hard to get a handle on...it's not a matter of being strong or brave, after awhile you realize it isn't the end and that you can deal with it...that and, well, it becomes old news. You will get there, really.

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12 years 1 month ago #41508 by mmc
Yep, you are obsessing. Talk to your doc about something to help you cope. It's not helping you in the least and it likely is hurting you.

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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12 years 1 month ago #41507 by JD37
This is all so overwhelming...I feel sick just thinking and talking about it. Not to mention the prospects of having some of the types you mentioned and then needing a second one of these procedures after the first, if needed. I know I am obsessing on all the "what ifs" at this point, but I just don't have any other coping mechanism from which to draw right now.

I'm just so profoundly sad and afraid. I'm sorry I'm not yet as strong as all of you, but I do hope to get there, regardless of what results I receive.

The prospect of having to tend to this forever (be it checkups, treatments, etc.) is just so defeating to me...it makes me feel as though I have already lost the life I had and now have to start all over.

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12 years 1 month ago #41501 by mmc
"Just scrape off"???

You can ask him to do that if you want. My urologist tried that the first cysto that I got and I'm pretty sure my nose just barely missed the ceiling!

My doc wanted to get me in the following week after my cysto but I had a business trip planned to the Philippines for two weeks so we pushed it out three weeks. It made no difference.

As Sara Anne said, when they remove it they need to get good margins all around. They also (if it turns out to be bladder cancer) should do a 2nd TURB 4-8 weeks after the first to be absolutely sure of good margins. It is FREQUENTLY under-staged which is why it is standard procedure to get the 2nd one. I'd suggest getting the 2nd one done by a top bladder cancer doc at an NCI center.

If the first TURB shows no cancer, then you're done. No 2nd TURB required.

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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12 years 1 month ago #41496 by JD37
I thank you. I just want to believe that I can live my normal life again and have no reason to think that I will have to "hope" to be here in 5, 10, 20 years. I know there's always something that can get any of us at any time, but knowing that something is inside of me that WILL do that if left there is unquestionably horrifying. At the recommendation of someone of the bladder cancer cognoscenti, I do plan on seeking out another analysis and hopefully a new sense of hope. Once again, I know I must seem rather odd with my doomsday dramatism, but I am still in pure denial that I even have to think and type such phrasing.

I will keep pushing through though and hope that the outcome is a good one. Guess that's all I can do right now.

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12 years 1 month ago #41490 by sara.anne
I will try to answer the question in your last paragraph here as to why they just don't "scrape it off" during cystoscopy. There are two reasons for doing a biopsy under anesthesia. First, of course, is that IF it is a small low grade polyp, it can be removed. But second, and very important, is that when the urologist removes it, he will try to take not only the polyp tissue but a good sample of the surrounding tissue. This will be sent to a pathologist who will carefully examine this under a microscope and determine if it IS cancerous, what type it might be (high grade, low grade). and if it has grown into the underlying muscle. This information will be of the greatest importance in determining the course of any further treatment.

It is not uncommon, and in fact some think it is very important, to repeat this procedure in a month or so to be sure that the biopsy got all the tissue and that the diagnosis is correct.

A word about nerves........I came home from my first biopsy "knowing what I was going to die of." Well, it didn't turn out that way :lol: I did have a second biopsy, and the second one showed that I had CIS also, which is high grade and required BCG treatments. As I went through this, both my urologist and my internist suggested that I was "depressed" and that I should consider treatment for this. I declined...don't I have the RIGHT to be upset with such a diagnosis?

Now, three years later, I am doing great. Got through the BCG treatments with minimal issues, and have my three-year checkup next week.

Best of luck to you....as you see there are a lot of use here who have been where you are and made it through.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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The following user(s) said Thank You: JMack

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