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Ta High Grade – Questions
Hello everyone,
I have been reading this board off and on for the last few months and have appreciated the knowledgeable commentary. Now, I find that I have several questions myself.
My husband was diagnosed with superficial BC (Ta) in September with a single, low grade “mushroom” tumor of about 3.3 cm. He had it removed and then went through his 6 BCG treatments with relatively mild symptoms. In the middle of December, the urologist went in for the Poke & Peek and unfortunately, there was another tumor – but smaller this time (I don’t know what size – but considerably smaller than the first). Even though there was another tumor, he did also say that the BCG “appeared” to be working. A second TUR was scheduled for January 30th. He took out the second tumor and apparently thought it was low grade again, as did we. Unfortunately, it came back as a high grade tumor. The urologist did not say that it was significantly larger than he expected going in, so I assume that it was still pretty small. Before the tumor came back as high grade, he wanted to wait until the 3 month check to see if additional BCG was needed. Now, he wants to do another series right away. However, he did say that this does not significantly change the situation for my husband.
Obviously, I am more scared than before! From what I have read (and I did quite a bit of reading), if you have low grade tumors, then your recurrances are generally low grade as well. I did not see much information on the Ta, high grade treatment and outlook – other than the brief mention of it as still being optimally treated with BCG.
I am filled with questions, of course – most of which can not be answered by anyone – but I was wondering if anyone else out there could give me an idea of the prognosis for this type of situation, what we should be concerned about or watching for, etc. Also, if anyone else has been through this, or knows someone else who has – ANY information would be helpful! It just seems so unusual to progress to a high grade so soon, even a small one…..
And also, whether or not I should be as scared as I am! :-[
Thank you!
Susan -
11 Replies
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Thanks, Wendy. :) It is interesting to hear that Dr. O’Donnell said that. <> Do you know if he does long distance consulting? If so, is it difficult to get an appointment (and one that is soon)?
Sure he does long distance consulting and would be much more able to help if he knew the complete history. Here’s some links:
You can track O’Donnell via the U of Iowa site:
http://www.uihealthcare.com/depts/med/urology/urologymds/odonnell.htmlWebcafe’s info on him
http://blcwebcafe.org/board/m-odonnell.aspand our page about his treatments with interferon+BCG:
http://blcwebcafe.org/interferon.aspIf you let him know I’ve already wrote him about your husband good chance he will get back to you promptly. He’s a good one to get a second opinion from.
Best,
Wendy -
I need to add I was supose to have 6 treatment on interferon but only did 4 due to what may have been areaction. It still worked. Don
Hanging in there!
Wow, Don. That’s wonderful! And it’s really encouraging to hear for me as well.
I hope that your 3 month check goes well.
Susan
I did not have any success with 6 treatments of BCG, Still had T-1 and still had high grade insitu. That uro was wanted my organs, I got with a cancer center that uro used interferon and 10 percent BCG for a complete clear of tumers and high grade insitu. I go in for my 3 month check march 13, They will have alook and see how it is doing. Thses past 3 months of freedom have been greta. Don
Hanging in there!
Thanks, Wendy. :) It is interesting to hear that Dr. O’Donnell said that. After reading what everyone has said about a second opinion, I am planning on starting by talking with my husband’s doctor directly (I have not had a full conversation with him myself) and with the friend of a friend who is a cancer specialist. Depending on what they have to say, perhaps it may be good to have Dr. O’Donnell take a look at his case. Do you know if he does long distance consulting? If so, is it difficult to get an appointment (and one that is soon)?
I really appreciate you – and everyone else – going out of their way to consider our BC issues. It is reassuring to have some feedback!
Susan
Hi Susan,
I was confused after reading your message so I asked Dr. O’Donnell his opinion of the situation, he replied he would treat with BCG+interferon.
BCG did not live up to its reputation in your husband’s case, I would think. Although Dr. Lamm says it can take up to 6 months to do it’s full job…
O’Donnell’s rx could be worth asking about. There is more info on this here:
http://blcwebcafe.org/interferon.aspSecond opinions at this point couldn’t hurt.
All the best,
Wendy
Susan from what I read I would most definitely get a second opinion here. I saw a urologist 1/6 and was told I had a rather large tumor on my bladder and he just told me different options I had. I was not one bit satisfied with this urologist not that he hit me with a bomb just something about his nature in speaking with me. When I got home I called my primary and I told him I wanted to see another urologist which he also agreed and I live in Pa. close to Phila and I told him I wanted to go to the Univ of Penna Hospital which has a great reputation. So he referred me to Dr. Wein who is a urologist/oncologist. The first urologist I did not even want to go the hospital he wanted to my TURBT at just because it is just an ordinary hospital and I was seeking the best possible care I could get under the circumstances. This has been the best decision I ever made and my wife was right there with me she is an LPN. My tumor is invassive and got into the muscle so tomorrow 1/13 I am scheduled to find out my treament so I am a tad on the nervous side though trying to focus positive. My point here is by getting a second opinion and the way things turned out my decision now has placed me in the hands of a great hospital and an excellent Dr. with a team that is prepared to handle all cases of bladder cancer. I Wish You Luck, Joe
Susan,
You are welcome. :)
There was one very large tumor and a smaller one growing beside it on my first TUR. I did not have BCG’s in the intermediate time between TUR’s. My doctor said that he expected to find residual tumor when he went back in because he said, “It’s very hard to get it all”. Anyway, he wanted me to understand that what he found the 2nd go-round was not a new tumor, but was left over. He seemed to think that it was important that I understand the difference.
I guess my next question would be, “What are the credentials of your husband’s doctor”. If he is a general Urologist who specializes in Prostates, but treats bladder cancer patients, then I would urge you to get a 2nd opinion from a Bladder Cancer Specialist. Maybe there is a Teaching Hospital somewhere close by where you could get a referral. If your husband’s Doctor is a Bladder Cancer Specialist, then I’m not sure that I wouldn’t get a Second Opinion anyway.
I’m not trying to tell you to be scared. I guess I’m just urging you to cover all your bases.
Very best regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Rosemary,
I asked him the same question (of course at the time not knowing about the high grade of the 2nd tumor) and he said because he would have expected there to be multiple tumors or large tumors, if it wasn’t working – at least that was my understanding.In your case, did you have multiple tumors the first time and then multiple tumors the second time? Also, did you have BCG in between your TURs?
Do you think that going through the BCG again after the removal of the second, high grade tumor – and then getting another poke and peek is unwise? That seems to be the course that he is advocating right now. I just don’t know how worried I should be – and I don’t want to scare my husband any more than he already is.
Thank you so much for your support!
Susan
Susan,
My doctor did a 2nd TUR six weeks after the first one to look for residual tumor, as my initial tumor had been very large. The first pathology was hip-hip-hooray! Ta G1, you can’t get much better. But 6 weeks later it seems that there was a different story in there. I bumped up to mostly all Ta G1, but some high grade focal areas of T1 G3. T1 G3 is not really anything to play around with. Because of my age (I’m 54) my Doctor was pretty freaked and sent me to the best authority in our State for a biopsy and to get a good sampling of muscle tissue. It turned out to be a clean biopsy and now, it is one year later, and I have not had recurrance. (Getting ready of my 10th BCG treatment)
I guess I would like to say to you that size does not really indicate a prognosis in Bladder Cancer. And I’m a little curious as to why your Doctor says that the BCG’s seem to be working, when there is recurrance? What is he basing his statement on?
Do not feel shy about getting a 2nd opinion. My suggestion would be to find, not just a Urologist, but a Urologist who specializes in Bladder Cancer. I think you would feel better all the way around.
Good luck and warmest regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Susan
It’s tough to have to adjust from a low grade diagnosis to a high grade. You are entitled to feel uneasy but I think the thing to take comfort from is that whatever the outcome of the disease process for your husband, the fact that it’s been detected at an early stage gives him a wider choice of treatment options and a decent prognosis. As long as he’s keeping his appointments then most docs should be keeping a close enough eye on things that they shouldn’t get out of hand. There are never any guarantees but it sounds like you are on top of it. Even if it doesn’t feel like it. There’s lots of people here and out there who’ve had the same or worse diagnosis as your hubby and are living good lives many many years later. Me included!
I elected to have my bladder removed but only after the appearance of CIS with a G3 tumour and its resistance to BCG. I had over 10 years of G2 Ta recurrent tumour prior to this. What is the actual grade of your husbands tumour?
I think you’ll find lots of people here and elsewhere who have been through/are going through what you and your husband are experiencing.
It’s totally normal to feel scared at this point! I certainly found though that knowledge was power and this site is excellent for both topping up your knowledge and sharing fears, frustrations and experiences.
All the best, really don’t lose heart
Regs
Tim
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