-
Need help
My husband has just been diagnosed as having T1 lowgrade bladder cancer. Solitary 3 cm tumor removed a week ago. Now what? I read most t1’s are high grade… What is the treatment for low grade? I am terrified. We have a skilled surgeon/uro/oncologist, but, he is not probiding us with any information until next visit on Jan 23rd. Will they insist on repeating the resection, or bcg tratments or both? I am sick with worry. Please help. My husband is 57 and in good general health, until now.
-
12 Replies
-
Hi,
I recently had a tumor removed from the ureter and had a stent. I was really fretting about it coming out, but it was a piece of cake. I didn`t even realize it was out until doc told me I was done. Tell your husband not to worry!
Regards, Griz
-
Hudsongrl, yes I would have some pain in the lower back on the side where the stent was. Sometimes it would seem that once I finished going to the bathroom, the pain would be better. The pain though was nothing that was intolerable just you knew it was there at times.
Joey
-
Welcome to the site Hudsongrl
As you can see from the responses here, there is a wealth of experience here and a genuine willingness to help. Consider their information to be accurate, but we are not medical Dr.s. But that doesn’t deminish the support and technical information they give.We have all “been there” and we came here just like you; scared to death, adn looking for answers. Welcome.
Oh…. and most important….. Anything goes here. Any question. Any concern. Any Fears…….. All are Ok here. I came here looking for answers “After” I went through the full surgery treatment. I was looking for some form of relief. Found it here.
Good Luck and don’t panic. There will be a fight to fight, but, in the end, the two of you will get through this just fine. Maybe even better than before.
Just work through it as a team.
Sincerely
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Thank you Joey, encouraging about the stent removal. Did you have any pain with the stents in? My husband complained the first couple days of low back pain on the side the stent was in. But, the last few days he has felt much better.
Linda
Hello,, yes I plan to get and keep copies of everything, including path report. I started a folder with all our “papers”. This is so important if you ever switch doctors, move etc.
Thanks for the warm welcome to the group. I can see there is lots of good info here!
Linda
Hudsongr, I also had a stent placed in the ureter on two occassions. The pain associated with the removal was minimal and over very quickly.
Joey
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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
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!
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
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
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
