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Sister has bladder cancer, need help and info

9 years 1 month ago #35340 by sara.anne
So sorry that you have to be here, but glad that you found our site and hope that we can offer some advice and support!

I would LOUDLY second Mike's recommendation that you get your sister to MSK as soon as possible. You are fortunate to be so close to one of the top bladder cancer sites in the country so that she can get the best possible care. This is a highly treatable disease in many cases IF you can get to a place that really knows the score on this disease.

Best of luck to you and your sister. She is lucky to have you as an advocate!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 1 month ago #35337 by mmc
Sorry to hear about your sister. Once you have the pathology report back, if it confirms bladder cancer, the next step is to get to Memorial Sloan-Kettering in New York. That's VERY close to you. People from all over the country go there to get treated for bladder cancer and it is one of the top places with the top most bladder cancer specialists in the world.

Your sister should get a copy of the surgeon's report (which should detail what he means by "other areas of involvement on the bladder". She should also get copies of ultrasound, CT, etc. They all belong to her and all she needs to do is sign a release.

If it is bladder cancer, the main question becomes what stage and grade. If it is fully contained on the inside wall of the bladder, there is a different protocol for treatment than if it penetrated the inner lining or into the muscle of the bladder.

Let us know what the results of the pathology report are as soon as you know.

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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9 years 1 month ago #35336 by Rockyiss
Hi , I am so sorry for what your sister is going thru right now. This site gives out so much info. if you just start reading you can really learn alot. Also there are different people on this site that are very helpful and they are on often on to answer questions.
They can answer all the questions you have and give you and your sister the support you will need.
I have had bladder cancer and the people here are very kind. I also know what it is to hear that someone you love has cancer, my husband had non hodgkins lymphoma and was very sick.
Life changes and it can get very scary ,but as you travel down this road with good people to help you it can get better and less scary. I am cancer free and so is my husband. God bless Rocky

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9 years 1 month ago - 9 years 1 month ago #35335 by jog1151
My sister went to her MD about a month for frequent urination. The Dr. ran some tests, initially she was diagnosed with mild diabetes. Dr. thought it might be a UTI, to be on the safe side, the Dr. wrote out a script for an ultrasound of the bladder.

Ultrasound revealed a large mass, that was on Monday. We went to see Urologist on Wednesday for a biopsy, which came back malignant.

Surgeon had her admitted to St. Barnabus in Livingston, NJ this past Saturday. Mass was removed, larger than expected, the size of a naval orange. We will not get the pathology report to determine the type/grade of tumor until Monday or Tuesday. The Surgeon said he does not like to rush pathologist, he wants a thorough and accurate report to determine the course of action.

In addition, her kidney funcions were off. Since he removed the mass, creatinine levels are improving. We are hopeful that the kidney issue will be temporary now that the mass has been removed.

The Surgeon. said that there were other areas of involvement on the bladder, but was reluctant to say much more until the patholody report comes back.

They are running some additional tests today, CT scan, etc to see if it has spread to other areas. Of course they are taking blood to monitor her creatinine levels to determine what action if any is needed for her kidneys.

I am at a loss, know little about bladder cancer. This has been a whirlwind this week. I have no answers, and truthfully am not sure what questions to even ask.

Since we are at the very beginning of the journey here, I would certainly appreciate any advice, input, etc in terms of what we should be asking, or how to proceed going forward.

Thank you.

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