How to confirm diagnosis & staging is accurate

15 years 4 weeks ago #1456 by deb
Hello new friends;

Thanks Wendy and Chris for additional information. I suppose I should back up a minute and tell you more about us (Goslins). My husband (Bruce) is a 54 y.o. super fit guy that was in total denial for almost 3 years that an occational bloody pee was something to worry about (for the uro that his primary MD wanted him to see after his first episode of hematuria was a struggling new doc and not someone to put your trust in). My hubby wanted the whole thing to just go away (did not want to see a guy he did not respect and did not want to spend money when we were in between insurance coverage). We were both the medical field years ago (before making our livings in high tech) and you would think that educated folks would not have been so fear based, but that was how it all began.

When my husband presented in the ER in late July he had gross hematuria, could not void and was immediately cath'd and a CT of the abdoment was done. A "neoplasm" was suspected in the bladder (6cm/4.5cm) and he also had spots on his adrenals and one spot on the liver. He was scoped the following Tuesday and the local Uro confirmed cancer and that it was outstirpping its blood supply and was necrosing. Bruce had a TURBT that Friday (7/28) and was given only IV and oral antibiotics post op for a uro infection caused by the frequent caths done prior to TURBT.

We pushed and pulled through docs that we know to get into see the UCSF Uro-Onc team the week following TURBT (taking all of the studies and Path along with us). The initial Permanent Sections showed a large papillary tumor Stage Ta-T1 with both low and high grade cells (no G rating was given and no nodes were checked). The slide readings were reaffirmed at UCSF and the spots on the adrenals and liver were said to be "nothing to worry about" (probably adenomas in the adrenals and fatty tissue in the liver). The UCSF Chief of Uro did a follow up random biopsy (baldder mapping) on 8/28 and follow-up path showed all clean in multiple biopsies of all sides of the bladder and again no muscle involvement at primary site.

So where are we today? Bruce got his first intravesical BCG treatment yesterday at UCSF and tolerated it well. Our docs there are going to talk with Lamm (who they know and respect highly) so that they can better understand his additional procedure of administering upper thigh percutaneous BCG with each intravesical treatment during the 6 week course and all maintenance infusions (the way Lamm now does it on all of his patients). Even though there are no big meta-data studies to prove that additional percutaneous BCG helps significantly we want to have it used because Lamm states that the percutanoeus BCG does help 90% of PPD negative patients covert to positive PPD at 12 weeks post start of treatment, which obviously helps the body respond to the therapy.

While at UCSF I asked the hard questions about micro mets and the doc said yep it can happen but we should not do more studies unless the BCG fails. I find that response hard to accept since failure in the local bladder treatment has nothing to do with cancer cells that may have already invaded another organ or are traveling around the circulatory system looking for a home. P.E.T. could be done but no insurance carrier will cover it for a Stage 1 disease unless tretment fails on the primary leasion site.

Do we pay our own bucks to have a P.E.T. or follow-up CT or MRI to let me get some comfort that we are not missing something...or should I take relaxation therapy and let the process move along with the pros running the treatment plan, knowing that it is rare for a Stage 1 BC to migrate? I just don't want to look back if my husband turns out to be the rare case of met and say I knew better.

Thanks for listening,
Deb :-/

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15 years 4 weeks ago #1455 by cta7978

There is a small risk of micro-metastasis with T1G3 tumors, the higher the stage (Ta, T1, T2, T3..) the higher the risk. I asked the same questions when I was diagnosed, as I understood it I had a 5-10% chance of micro-mets occuring from my tumor. I wanted to know whether I should go and do chemo based on that risk and was told that it would be overkill.

Basically you can tell what the risk of mico-metastasis is with T1G3 tumors from the percentage of people with radical cystectomies (RC) that had their pathology confirmed at T1G3 post-op. There are a small percentage of RC patients (with T1G3 tumors) that still end up developing mets even though the tumor (and entire bladder) were removed. This is due to the tumor shedding cells into the bloodstream prior to removal (via RC or TURB) as I understand it.

I think the numbers were 90-95% 5-year survival for RC with T1, 80-85% for RC with T2, ~65% for RC with T3, someone can correct me if I am wrong. These figures pretty much reflect the cancer metastatisis risk after tumor removal. (Of course if you do not have an RC, you also add risk of new/recurrant tumors invading and metasitsizing)

Of course these numbers are just statistics, if you have multiple large T1G3 tumors with profuse CIS you will have much higher risk than a solitary small T1G3 tumor, so it is often hard to quantify individual risk from the statistics.

Feel free to send me an e-mail as it looks like your husband has a similar diagnosis to mine, I'd be happy to answer any questions or compare treatment courses.

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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15 years 1 month ago #1454 by wendy
Deb wrote: >>My ongoing nagging concern is: Because this darned thing was around for 3+ years how can they be sure that the lymph or circulatory systems did not provide a pathway for cancer cells to spread elsewhere? <<

I'm not a medical professional but I have heard similar stories over the last 8 or so years. These tumors can grow slowly and get very big but still stay non-invasive. It's the most common form of bladder tumor, uros that are experienced can determine by looking whether it's high risk. The biopsies must include muscle in order to rule out invasion of the muscle. Biopsies show vascularization, if the tissue was heavily vascularised it would increase the risk of nodal involvement, but the doctors are clearly not worried about this.

It's not standard to do lymph node biopsies for bladder cancer, unless spread is supsected. Usually less invasive tests would come first. As to your other questions, are you sure your husband didn't get an xray, or IVP or other staging tests when first diagnosed? You should go back and check, and reassure yourself that standard staging procedures have been followed.

I hope your husband has an easy time and that BCG works its wonders for him.

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15 years 1 month ago #1444 by deb

I forgot to answer your other question? Was he offered any other treatments? After TURBT he got IV antibiotics for a bladder infection caused prior to surgery from multiple catheterizations due to UT blockage because of tumor size (6cmx4.5cm). He did not get any intravesical chemo post op. He begins Lamm's BCG protocol today at UCSF.

He did have a CT of abdomen when first diagnosed in ER after complete UT blockage happened in late July. CT showed the neoplasm in his bladder and spots on his adrenals and one small spot on the liver. Both uro groups we have seen say no big deal, probably adenomas in adrenal glands and probably fatty tumor in liver but nothing verified to date.

Thanks for being there,

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15 years 1 month ago #1443 by deb
Thanks Wendy and Lou for your quick come backs.

I did see the path reports, first from our local hospital where the TURBT was done and also talked to the Pathologist that did the work there as well as a second opinion read by UCSF. They said T1 with lots of low grade cells and a few high grade cells so they had to call it high grade. Gave no number to it like G3. It was also reviewed by UCSF, where we are now getting follow up treatment from the best of the best uro-onc team. Their path guys agreed with the first reading. A follow-up bladder mapping (random biopsy) was done by the UCSF team 1 month after the original TURBT was done in our local med center. The results of the random biopsy show no further cancer and that the muscle cells where the original tumor was resected were also clean.

My ongoing nagging concern is: Because this darned thing was around for 3+ years how can they be sure that the lymph or circulatory systems did not provide a pathway for cancer cells to spread elsewhere? Even though I understand that most authorities in the field think Stage 1 disease remains localized, why would they not do a lymph node biopsy, do labs for other organ disease (i.e. liver) and CT of abdomen and/or chest?

I'm just a Nervous Nelly that does not want to miss anything and then regret hat I did not advocate stronger for my hubby's holisitic care plan.

:) Deb

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15 years 1 month ago #1442 by rentanag
Replied by rentanag on topic How to confirm diagnosis & staging is accurate

As I was writing my post Wendy was writing hers, and I'm sure she's absolutly correct about what she writes or she wouldn't write it.  Chris might still be able to give you additional information on the subject as well.  Good Luck.


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