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Urologist Diagnosed me with Bladder Cancer Today - 29 Year Old Male

1 year 2 months ago #54106 by LillianG
Congratulations!!! That's great news - non invasive, low-grade is the best diagnosis that you could ask for!

As far as getting a second opinion, just let your urologist know that you want your slides sent for a second opinion. I had mine sent to Johns Hopkins. You can fill out the paperwork and give it to your urologist. I know I felt a lot better knowing that Johns Hopkins agreed with the diagnosis I received from my local hospital. A proper diagnosis helps to ensure the correct treatment path.

Here's a link to Johns Hopkins site, where you can get more information and download the forms.
http://pathology.jhu.edu/department/services/secondopinion.cfm

Take care,
Lilliang

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.

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1 year 2 months ago #54081 by exsequor
Thanks for the warm welcome, Lillian! I was sorry to, but am adjusting to this reality, as I am sure that we all are and do adjust to this. I will certainly remember to relax as much as possible. Undo stress is never kind on us or our bodies.
So I got my pathology back Monday. Low grade ; non invasive. Which I am finding out is the best one could expect. However, as much as I am satisfied with these results, I am interested in getting second opinions.

Would I just call my current Urologist Office and tell them I'd like to send/pay for my slide to be sent off for a second opinion? Where do I decide which pathology to send for a second opinion? Do I do research, so as finding out which pathology department, say UCHealth Denver has, for example (as they are known to be the best in the state of CO).

Thank you again for the insight on this tough matter.

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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1 year 2 months ago #54074 by LillianG
Welcome, and I'm sorry that you are joining our little club. The first thing that you need to do is breathe. Try to relax. We've all been where you are, and we know that it's overwhelming. There's not much that you can do until you get the pathology report from the turbt. I'd recommend that you have your urologist send your slides off for a second opinion. I had mine sent to Johns Hopkins. Most insurance companies will cover the cost for the second opinion, but if not - the cost is only $250, and well worth the peace of mind.

Please keep us posted.

Take care of you,
Lilliang

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.

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1 year 2 months ago #54029 by exsequor
Seeryn69,

Thank you so much for sharing with me. I really needed to read that, and find someone on here who has gone through this walk already. Especially someone that started this walk at the same age as me.

I can't tell you how much your post helped take the edge off of some of anxieties and fears towards being able to continue to live a long, healthy, normal life.

You really reinforced in my head the key to keeping on top of this, and I have every intent to keep on top of this from here forward, so thank you.


If you'd like someone to talk to, I could really use it. And I'd love to know more about your experience between your first TURBT, your first pathology, and more about what lead to the cancer coming back the second time. You really do seem to be a wealth of insight about this, especially for those of us males that are younger. Thank you again for taking the time to post up here.

-Tim

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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1 year 2 months ago #54017 by Seeryn69
Hello friend,
My sympathies to you for having to go through this. I understand how you feel nearly entirely. I as well am a bladder cancer Patient, currently. This time is actually my third And hopefully final round with cancer. I was first diagnosed when I was 28 in 2009However I probably had acquired it in 2006 if not in 2002 Which was when I first showed symptoms of bladder cancer (The spotting in urine, small blood clots that looked like tiny strands of Red fabric . The second time I had it was 5 years ago. And now I was diagnosed with stage 2 Invasive bladder cancer as of late june of this year.
It is understandable that you maybe scared and very unsure of your situation right now. You can and I am almost certain will get through this. However you need to stay on top of everything. Do not let this slide do not let this go. I would hate to have you have to go through what I am currently going through due to my lack of persistence in staying on top of the cancer. Due to my inactivity and the fear of what could be And that I took no action until it was bad and I could not ignore it any longer, I now I'm having to have My bladder and my prostate removed and I am currently going through chemotherapy before the surgery . Both of my previous cancer bouts I had followed up afterwards only once . Had I Went to more follow-ups I would probably would not have to have my bladder taken out. In this I'm not trying to worry you or put more fear into you just the knowledge that if you let this go even after you get it removed then it can get worse . You Are Young and can bounce back from this easily and still live a very long happy life as long as you stay on top of this .
I myself am 37 years old now and after my surgery I feel I will still be able to live happily and this time I am not going to miss a single check up . I wish you the best my friend . If you would like to know more about my procedure either previous or currents feel free and let me know . I kind of feel like an old hand at this and if you have any questions I might be able to help answer them . Such as The CT scan and MRI may not have picked up on it because it may not have been large enough to have been seen due to it can appear to be regular cells which is why the test without the pigment was done and the Bladder scope was done as well. As I was reading your story I was thinking to myself as soon as they said kidney stone I thought scope test scope test scope test because at first they thought mine was a UTI then they thought it was possibly a kidney stone And then back to UTI before I had a scope test done and they saw that I had approximately 4 oz of tumor in my bladder the first time . 9 oz of tumor in my bladder were removed the second bout and this time there's too much to remove so they're taking the entire bladder .

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1 year 2 months ago #54013 by cltyxx
Hi there,

The uncertainty is tough for everyone! I have that similar experience after I got my 2nd pathology report. That was almost 2~3 months later since I was diagnosed. No matter how young and how strong you are, you just feel powerless before the illness.

I believe in living well everyday and enjoy it as much as you can. No need to overthink. One step at a time.

Good luck!

Diagnosed on 03/23/2017
TURBT#1 04/06/2017, Pathology report not conclusive
TURBT#2 05/26/2017, HG T1, No cancer found
BCG 6 treatments finished on 08/11/2017

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