Need help

11 years 3 months ago - 11 years 3 months ago #43853 by CatherineH
Replied by CatherineH on topic Need help
Hello... A belated welcome! I am glad to hear that your situation is not as dire as you were lead to believe and so sorry for your excessive worry. Not that ANY diagnosis would not make us crazy because it is a scary place to find yourself. As you've read from the replies here, treatment and followup are very effective, especially for Ta. And the fact that you were able to speak to your doctor on a weekend is very commendable... not all doctors make themselves that available.

When you go to your next appointment, ask for a copy of your husband's path report for your own records. And, anytime there are labs/tests/etc., ask for copies of those. Some hospitals have online access for their patients so ask about that. Mine doesn't post pathology reports (I assume due to the sensitivity of the information) but most other records are available for me to login to view (CT scan reports, routine labs, etc.) which is very convenient since my doctor is 300 miles away.

Also, if you don't already, take a notebook with any questions you have had since your last appointment ready. It will help to get the most out of your visit with your urologist.

Again, welcome to our forum. I am glad you have found us to be helpful. I know how much the kindness and support I received here helped me during those first very scary months, and still three years later.

My best to you both!

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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11 years 3 months ago #43852 by mmc
Replied by mmc on topic Need help
Ta is MUCH better.
Consider reporting the assistant to the doctor. That's a bad mistake to give someone inaccurate data like that. Lots of panic and angst was associated with that incorrect info.

Good news though!

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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11 years 3 months ago #43845 by Hudsongrl
Replied by Hudsongrl on topic Need help
Thank you for your responses. Apparently the physicians asst. gave us incorrect info. Husband is low grade Ta. We spoke to oncologist/urologist this weekend for clarification. See him on Jan. 23 rd. for followup. Hubby has a ureter stent that has to be removed. How painful is this procedure?

We are at Northwestern Hospital in Chicago. Excellent reputation and excellent doctor. We originally saw a local uro who diagnosed him and then moved on to Northwestern for surgery and follow up. Happy with our choice.

Again, thank you for Support!

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11 years 3 months ago #43844 by Joey
Replied by Joey on topic Need help
Hudsongrl, I was dx December 2007, low grade with a 4 cm tumor. I did have one recurrence 5 months later ( CIS) however since then I have had 30 BCG treatments and have been cancer free for the past 4 1/2 years. I now visit my oncologist/urologist every 6 months and if I am clear again in June, I will move to once a year.

Joey

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11 years 3 months ago - 11 years 3 months ago #43841 by DougG
Replied by DougG on topic Need help
Hudsongrl,

I too am a caregiver. Mike has given you good advice. I do remember that it seemed like forever before that 1st appointment after surgery. Is your husband recovering well from his surgery? My husband was diagnosed in 2001, has had 6 TURBs, mitamyacin, BCG and has been cancer free the last 4 years. There is hope! Take a deep breath and continue on with your life. We do have a chat room on this site at 8 PM EST on Sundays. Join us and ask any questions you may have or ask them here on the forum.

Anita

Anita
Forum Moderator
Caregiver

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11 years 3 months ago #43836 by mmc
Replied by mmc on topic Need help
Usually low grade is discovered when it is T0 but not always. I would suggest that he go to top bladder cancer doc. Don't panic as he is not in an urgent situation at this point. Low grade is certainly a lot better news than high grade but T1 is certainly not to be ignored.

Likely, he will get BCG treatments even. Though it is low grade. Also, get ready for a regular visit to the urologist for many years to come. It may even be a watchful waiting and no BCG.

Either of those two treatment paths can be done by his local urologist but I highly recommend a second opinion by a top bladder cancer specialist. Always better to either figure out if a more aggressive treatment protocol is needed or not based on the specialist evaluation.

Also the second TURB is highly recommended to be sure it is not under staged as that happens very often with bladder cancer.

I had high grade T2 and I'm cancer free for over 4 years now. Don't have my original bladder anymore but my new one is doing fine.

Your husband will be fine as long as he takes this seriously and follows up diligently and sees a specialist focused in bladder cancer.

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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