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Second Opionion before Bioposy

3 years 9 months ago #48440 by sara.anne
Yes, many of our members have had their pathology reviewed by mail at Johns Hopkins. If there are any questions, this is a good idea.

Sara Anne

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

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3 years 9 months ago #48435 by MadLove
Hello. My husband just had his first TURBT at Johns Hopkins today. I'll be posting about that separately. We live two hours away in a rural area and initially had the surgery scheduled at our local hospital. Forum contributors talk about the value of working with a urologist that performs lots of TURBT's. We scheduled an appointment at Hopkins to review the history including the cystoscopy report from our local urologist. The doctor worked in an unplanned cystoscopy during the same visit and we made the switch in doctors that day. I'm grateful for that advice to not only get a second opinion but get one from someone who specializes in bladder cancer.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...

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3 years 9 months ago #48434 by MHY
I am in the process of having my slides sent to Johns Hopkins for a second opinion since my first pathology reports states, "In specimen B there is marked cautery artifact. Due to this artifact, the possibility of superficial invasion into the lamina propria cannot be entirely excluded." AND my doctor's surgery notes state, "... a large patch of tissue that had some papillary frondiness to it, also kind of a velvety look of carcinoma in situ and even potentially deeper layers."

The Johns Hopkins Pathology website is http://pathology.jhu.edu/department/services/secondopinion.cfm

Good luck to you.

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3 years 9 months ago #48433 by the wife
Yes, thank you Sara Anne. You answered some of the questions that I had posted earlier...I should've read your post first! I would be interested to know the answer to the previous post regarding second opinion as well.

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3 years 9 months ago #48383 by MHY
Sara Anne,

Thank you for the clear and concise explanation for obtaining a second opinion. I will keep your words close at hand since this is a keeper.

Would you or anyone on this forum be able to suggest a second opinion for pathology? I remember reading someone's post here or elsewhere where they suggested Johns Hopkins as a second opinion.

Thank you.

M

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3 years 9 months ago #48381 by sara.anne
Sorry that you have to join our "club" but welcome anyway. I will try to answer some of your questions, and I am sure that others will chime in also.

First, you need to establish a relationship with your urologist, where you feel free to ask all the questions you feel you need to ask. I do understand that it is difficult to change around with the VA system, but you will be seeing him/her often for a long time, and if you feel that you are not being included in the discussions/planning it will not be good. You need to be assertive (not aggressive) since it is YOUR body and YOUR health.

The usual progression of events is that after a problem is identified with a cystoscopy (that is what you had..the doctor looks inside the bladder with a small camera) a surgical procedure, called a TURB (transurethral resection of the bladder) is scheduled. UNTIL THAT IS COMPLETED YOU CANNOT BE SURE EXACTLY WHAT IS GOING ON. Yes, it is probably cancer from what the doctor said, but no one can be sure.

The TURB is done as an outpatient procedure usually using general anesthesia. The urologist goes in, again with a camera. Since you will not feel any pain he can make a much more thorough examination and take samples of the suspicious places and remove any obvious tumors. These are sent to a pathologist for examination...which can take a week or so. ONLY AFTER THE REPORT COMES BACK FROM THE PATHOLOGIST WILL YOU, AND YOUR DOCTOR, know whether is is indeed cancer and if so, what kind it is. They may put a wash of mitomycin in your bladder after the TURB to destroy any cancerous cells that might have been left. I was able to return home after I woke from surgery. Males sometimes leave with a catheter which stays for a couple of days. You may have some discomfort, bleeding, and/or painful urination for a bit...or not.

Once the pathology report comes back and you have discussed the entire situation from the urologist you will have a better idea of what you are facing and what kind of treatments may be indicated. Often the cancer is found very early and is of a low grade, or slow developing kind. Treatment for that is usually a "watch and wait" and you return about every three months for a cystoscopy to be sure that it hasn't returned. If it is high grade, there are outpatient treatments such as BCG to treat it. If it has progressed into the bladder muscle or beyond, it is a whole different story, but it is much too early to think about that. It is at this point, when you have all the information from the TURB and the path report, that you will need to do some serious thinking about your further course. If you have full confidence in your doctor and have established a good working relationship, you may feel comfortable there...especially if the diagnosis is low grade. If, on the other hand, it is high grade or worse you may well want to seek other opinions. That would be the time.

I know that, although I have given you a lot of information, it is a lot to "swallow" at one gulp. Please ask us any questions you may have and we will try to explain. We are not doctors...just people like yourself who have been where you are now.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Rickeise

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