First Consult

11 years 3 months ago - 11 years 1 month ago #42226 by henneke
Replied by henneke on topic First Consult
H so sorry to hear about your brother!!!!! I am stage 4 bladder cancer with metastasis to the brain diagnosed 7-31-2010. They found my brain tumor first because I went to er because I thought I had a stroke. The neurosurgeon already told my husband that it was not a brain tumor and that it came from somewhere else. She did more scans and mris. She actually saved my life because of her removing my brain tumor everyone else seemed to care more. At the hospital I saw a urologist who set an appointment to see him on thursday that week. The clerk in the hospital forgot to make the appoinment. We where meeting with the oncologist before we were going to the urologist and it took longer at the oncologist so we tried to call the urology office the let them know we were late and they said we did not even have an appointment. Wow that was a blow and you feel desparate. The oncologist referred us to another urologist. That was a blessing. At first this urologist talked to us that we had all kinds of options and he seemed very optamistic. Then he looked inside my bladder. I guess what he saw made him feel different because now my options became like the best outcome would be if I might be able to keep my bladder. We would do a turbt first and then follow with chemo and radiation. He removed 95 % of my bladder tumor. then I had 8 weekly chemo treatments (cisplatin) and 8 weeks of daily radiation to my bladder. After my 6th week I had to stop all treatments for 2 weeks because I had an infection. It could only be treated with gentimyicin. Has same side effects as the cisplatin so had to stop those. I had to take a full 7 days of gentimyecin thru my port. My husband was shown how to administer it. So then i finished my 2 more weeks of the chemo and radiation. The oncologist did not even want to discuss remission. I had my last treatment Jan 10 2011. I had my next petscan in may and I was CANCERFREE!!!!!!! The urologist checked my bladder showed scarring and irritation from radiation (really looked bright red and burned) but NO CANCER!!!! Just to make sure he did a microscopic urine test and it came back all clear!!!!!! SO NEVER GIVE UP!!!!!!!!!!!
I did make changes in my life style. Stopped smoking, drink at least 2 bottles of water (never drank water before) and I eat blueberries every daY!!!!!!!!!!! if not 2 or 3 times a day. I even eat them in my salad. I eat blackberries too if they have them. I eat cucumber in a vinegar/oil/salt/pepper/sugar dressing with every dinner. My oncologist is now so positive for me that instead of my usual 6 months petscan I am only getting a ct scan!!!! She even said I was in remission and she would have never ever believed this possible. My urologist calls me his "remarkable woman" and is just thrilled for me. So please Have your brother hang in there ask your friends for their prayers and start eating blueberries!!!!!!
I do embroidery digitizing and I was unable to this before I was diagnosed but since then I have digitized a beautifull embroidery design of the horse of my neurosurgeon and I also digitized a picture of my urologist into an embroidery design from his college days when he was a pitcher for Fresno State. Your family will be in my prayers and I will ask my guardian Angel to help you as good as he helped me!!!!!!! Still cancerfree and enjoying myself!!!!!!!!God Bless you all!!!!!

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11 years 4 months ago #42052 by quinlanm
Replied by quinlanm on topic First Consult
Hi! My husband also has metastatic bladder cancer to the spine. He has gone through 10 rounds of MVAC and recently started Gemzar. Radiation was never mentioned as an option for him. I've asked a couple of times and was told that it wouldn't do any good. (I wonder if that is the oncologist speaking.) I feel badly for you and your brother and understand what you are going through. It's tough. Has your brother pursued a second opinion? How has the Gemzar been for him?
Anyway, you are not alone in this journey. I hope we can talk. and I hope the results for your brother are good!

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11 years 6 months ago #41583 by DougG
Replied by DougG on topic First Consult
I am glad that you are there for your brother. God bless you!

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11 years 6 months ago #41572 by dtpoet
Replied by dtpoet on topic First Consult
Thanks everyone. I have to have that discussion with my brother. I think that he thought, like most, that the doctor gives you all the information; the good, the bad, and the ugly. I can see where my brother wouldn't want to know, but then again, I feel like I have to make him aware that he has to ask if he wants to know.

@Sarah - Unfortunately, the urologist may not be his favorite person at the moment. He is pretty much the only gig in town. About 6 months ago, my brother had a stay in the hospital and extensive test. The result was that his bladder was hyperextended, due to a lifetime of diabetes insipitus and 15 years of type II diabetes. It was not functioning and therefore a foley cathedar was put in. Three weeks before he was admitted again to the hospital with the back pain that led him to his current state, the foley cathedar was replaced by a superpubic cathedar. It is bothering my brother that the urologist did not mention or see any sign of cancer. I'm sure there may be a sound medical explanation for that.

He is starting on his 15 rounds of radiation today. He has an appointment for a 2nd opinion at a highly regarded institution, but he couldn't get an appointment until around april 12th. That works out because that will be about the time the radiation ends.

Thank you all very much. It was eating at me that we only heard the "good" and not the "bad" or the "ugly". I understand now what needs to be done to get that information while fully understanding that it is ultimately my brother's decision if he wants to know.

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11 years 6 months ago - 11 years 6 months ago #41569 by mmc
Replied by mmc on topic First Consult
If it has already metastasized to his spine it is T4G3M1.
That means it has spread and is high grade and has metastasized. I'm not sure how important the N value is in the staging and grading in his case. That's the one that says how many lymph nodes it has spread to. If it is in the bone it is highly likely to be in the lymphatic system.

It's not good news when it has already gone to the bone. It could be why the doctor did not bother with grade and stage because it is already as bad as it gets.

However, that doesn't mean that there is no point in getting a second opinion on the treatment plan. You are right that prognosis is not good once it has gotten to the bones. However, there may be clinical trials or something available. He should ask his doctor everything he wants to know. Keep in mind that may differ from what you want to know. You could ask your brother to ask some questions but it comes down to what he wants to ask. Give your brother a list. He should bring a list of questions the next time he goes and take notes. If you are the one going with him it helps to have someone else take the notes on the answers.

So sorry to hear about your brother.


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 6 months ago #41567 by sara.anne
Replied by sara.anne on topic First Consult
I am very sorry that you are here. But do hope that you can find some answers.

Many physicians sort of tailor their discussions to what they feel the patient wants to know. Some of us make it clear that we want to be in charge of our treatment and our conditions and we seek out doctors who appreciate this. Other patients do not want to know "too much" and, therefore, doctors do not give them too much information.

If your brother wants more information, he should make it clear to the doctors. He should make a list of questions to take with him; it is also a very good idea to have someone go with him, since it is difficult to stay focused and a second pair of ears is very useful.

For myself, I want to know EVERYTHING the urologist knows about my condition; I ask for, and get, copies of all pathology and other test reports. IF a doctor were resistant to providing these, he/she would not remain my doctor.

Depending on where your brother is being treated, it might be a good idea for him to get a second opinion at a center with specific expertise in the treatment of bladder cancer. If you let us know where he is located, we can make some suggestions. Or, on our Home Page, click on the "Help" tab...there is another tab that says "Researched Resources" on that and there is a geographical list of such places.

Of course, it is up to your brother as to whether he wished to take this advice. But you can certainly serve as an advocate and adviser to him.

Best wishes to you all.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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