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Meeting on Monday with team. Help!

9 years 6 months ago #31983 by Betsy Mae
Where about in The UK are you? I'm UK based too - Stockport.

Betsy Mae

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9 years 6 months ago #31975 by Patricia
Barny...2 weeks is nothing to get the correct diagnosis. If you can get in with Royal Marsden do it. Meanwhile see what the present team has in mind and how ever you do it in the UK get ahold of the pathology reports and the discharge summary from the hospital. Its very easy to do here in the US..we just call the hospital and sign for them. I do not know protocol in the UK. And if you can get the slides which we also can do here do it. Royal Marsden will want to see everything.
You need to find out if any muscle tissue was in the original tumor pathology. As for the solid tumor?? Maybe CIS which is always high grade but treatable but really needs to be watched.
Take notes....Pat

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9 years 6 months ago #31974 by Barney
Hi Mike

Thanks for your input.

Can't get hold of the second turbt report yet but will keep trying, also have made contact with Royal Marsden Hospital for second opinion but they say could be 2 weeks for appt which i feel at the moment, time is of the essence.

Thanks again and will be in touch.

Barney

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9 years 6 months ago #31962 by mmc
Barney,

Unless there was some problem during the first TURBT, they should have removed both tumors. A follow up TURBT is usually (or at least should be) done around 6 weeks after.

What you describe sounds like two first TURBTs. One for each tumor. That would be strange so it may be that things just were not explained well. Your friend should get the surgical doctor notes and the pathology reports for each TURBT that was done.

G2 is basically just the measure of the aggressiveness. Ta is non-invasive and just on the inner lining of the bladder.
You didn't specify the stage for the second TURBT so it's hard to say anything until you know more.

A second TURBT is USUALLY to go the same site as the first and take more tissue in that same site to be sure they got it all. The pathology report should also indicate if they got clear margins all around the tumor or not.

If that is not the case, then your friend will need another TURBT to go back to two sites of the tumors and get more tissue and be sure to get clear margins.

The mytomicin is to prevent seeding of the cancer cells due to the surgery.

However, if the second TURBT comes back with more than a Ta staging, they may already have treatment in mind so it's a matter of waiting to be sure.

If she is not being seen by one of your top bladder cancer docs, then she should try to do that. It makes a big difference with regard to outcomes. Study after study confirms this. Another thing to do is get confirmation of the pathology by asking for that to be sent to a top cancer hospital in the UK for a second opinion. Seems that pathology is a bit of an art as well as a science and the top cancer hospitals tend to have better pathologists.

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 6 months ago #31960 by Barney
Hi Diane

Thanks for your reply.

To explain why first turbt incomplete, two sorts of tumour where found at the cyto, one was seaweed like, and the other a solid type tumour. The hospitals explanation was that my friends body couldnt take the impact of all being taken at once so i think they just removed the seaweed type one.

Thanks again.

Barney

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9 years 6 months ago #31959 by Flamenco.
Hi Barney,
You have come to the right place for help and information. You will probably have a time lag before replies come in as you are in the Uk, although there are some members there. I am sure you will get the help you need. When you say that the first TURB was incomplete I presume that means either that they did not get clear margins, or that the sample examined by the pathologists did not contain muscle ( which would show how far the tumour had grown into the bladder wall). That could account for a staging of Ta which was understaged. But they did the right thing by carrying out a second TURB.Until Monday you will not know presumably whether the staging is now different from the original diagnosis, or whether they want to offer a different course of treatment. My sister in the UK (I am in Spain) has recently been diagnosed with cancer, and I will say she seems to have had several meetings with her team with regard to treatment, I do believe the NHS is doing more now to keep patients well informed as to treatment options, so perhaps the meeting is just to keep your friend "in the loop".
I am sure others more knowledgable than myself will put you on the right road as to which questions to ask. You are doing things the right way by accompanying your friend to the meeting and preparing your questions in advance.
All the best,
Diane

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