[wendy]

Hi Zach and Heidi,

Well… that’s not the news we would like to hear from you.

Can you remind me of the chemos you’ve had already, that was pre-op, right?

You have done your homework, gone to the best doctors and had great care and advice, it just shows that there is no guarantee but we knew that. That’s the first thing we’re told when we agree to surgery etc.

That said, my father was given six weeks at his initial diagnosis of lymphoma, mets to lungs, but got another 18 months. I hear stories of cancers that go into spontaneous remission; I hear that some people survive 5+ yrs without any treatment.

If miracles can happen (and I think they do), let it please happen to you and Heidi.

Hugs,
Wendy
PS I dedicate a song to you and us all…on You Tube:
http://tinyurl.com/69fzcm …or the You tube link:
http://www.youtube.com/my_videos_edit2?ns=1&video_id=2tY3lTJJLYw&next=%2Fmy_videos2%3Fpi%3D0%26ps%3D20%26sf%3Dadded%26sa%3D0%26sq%3D%26dm%3D1

[wendy]

Hi Leigh,

Uhm…there is no stage 5, cancer is staged from I-IV. There are different stagings used depending on what type cancer it is. For example, breast cancer will stage a woman at II even with (minumal) nodal spread. Bladder cancer is much stricter and stages a person at IV with any nodal spread, even a single node that’s been removed. But that doesn’t portend a death sentence, although it could if a person had not received treatment.

Your doctor said you have no metastasis, meaning distant mets which would be stage IV big time. He used the word regional, and it’s true, the spread was minimal, to regional nodes and they were removed. This whole situation is much more treatable than if it were distant nodes, or a vital organ. You’ve done every treatment called for in this situation, are in good health and have the odds in your favor.

5 yrs 20 percent may not sound great…but all things are relative once cancer has been diagnosed and these stats, though not perfect, could be much much worse. There’s a saying that “2 will get you 5”, and “5 will get you 10” and so on. It’s the truth..the longer we survive, the longer we survive.

Take care,
wendy

[wendy]

[quote author=Melisa link=topic=2492.msg18241#msg18241 date=1214146918]
Wendy – yes getting my father to change doctors or at least get a second opinion will be (has been) a challenge and with the surgery scheduled for this coming Wednesday it will probably be impossible. My stepmom did tell me last Thursday that my dad did not necessarily care for the surgeon scheduled to do the surgery (she liked him but he did not.) To me – it is more important that HE like the doctor. I will be bringing that up this evening.
I do have an additional question. How long was it for you all between the recommendation to have the RC and actually having the procedure?
[/quote]

Hi Melisa,

Ok, so you can’t change doctors now…but I really hope that your father is scheduled as an early surgery and not the last surgery of the day. That is why my aunt was left with a swollen node, the doctor was too tired and forgot to turn her over and operate there as well, it was his last surgery, late in the day on a Friday, he was on his feet since 6:00AM, very common. I would go so far as to say if your father is late on the schedule to demand a postponement. If the surgeon does relatively few cystectomies he can at least take his time and not be exhausted during the operation.

There has been a lot of discussion between experts about the wait between diagnosis and surgery; until recently the rule of thumb was no longer than 90 days. Recently I read that a ceiling of 45 days should be striven for.

Wishing you and your family all the best,
Wendy

[wendy]

[quote author=Melisa link=topic=2492.msg18196#msg18196 date=1214062378]
4- There was mention that if the cancer has spread, they will do radiation in the operating room. Has anyone experienced this or heard of this being done?

[/quote]

Dear Melisa,
I also haven’t heard of this. I wondered if the doctor meant treating the prostate? Sometimes radiation seeds are implanted, and perhaps this happens at surgery but I’m not sure. Prostate involvement is extremely common with bladder cancer.

Considering the progression from superficial to invasive, I understand you wanting your father to have the best experts on the case. I would feel the same way, but I have experienced myself that it can be impossible to get a person to switch drs if they are comfortable with them. My aunt paid the price of going to a regular hospital and having an inexperienced surgeon do a total colostomy but forgot to remove a swollen node. She’d had pre-op chemo and radiation, and much chemo post op as well but the protocols were bizarre- I tried to say it but nobody wanted me to. She paid a high price.

I agree with others who’ve said try to get your father to a cancer center with the state of the art diagnostics and treatment options…second opinions are also quite normal, routine even and the dr. shouldn’t mind at all.

Your father is young, I know men much older with many other health issues get cystectomies and do fine after. His general health sounds ok, though a history of stroke is always a risk. However, cancer is also a health risk!

Your father is so lucky to have your love and understanding, I”m sure he appreciates it even if he’s the silent type.

Take care,
wendy

[wendy]

Dear Leigh,

Um…yes. Node involvement stages a person at IV. But…these nodes were removed.

People who have nodal involvement can also go into long remission, I know a few who have, are still cancer free 8+ years later.

Michael had extensive tumor and many nodes, was very ill from the start. You are in great shape and not showing any signs of cancer.

I’m sorry you got shocked like this.

You’ll be alright!

[wendy]

For the record we have a few pages on the subject of “surviving hospitalization”, mostly geared towards cystectomy patients, and mostly created by them as well!
Wendy

Hospital Survival Guide:
http://blcwebcafe.org/content/view/165/176/lang,english/

Post-op survival guide
http://blcwebcafe.org/content/view/166/178/lang,english/

Post-op tips
http://blcwebcafe.org/content/view/168/180/lang,english/

Hospitalization for cystectomy, Nurse Sharon:
http://blcwebcafe.org/content/view/134/145/lang,english/
http://blcwebcafe.org/content/view/168/180/lang,english/

[wendy]

[quote author=Rosemary link=topic=2313.msg17018#msg17018 date=1211368318]
Dear Tahoe,

I get the feeling that even the Urologists are bouncing back and forth between the two grading systems (hard to change) If you have T1, G1 Bladder Cancer, then I’m guessing (based on my own Dx) that this bumps you up to a Stage 2.
[/quote]

The new grading system is about grading, not staging. Instead of grades I-III or I-IV uros are being encouraged to grade tumors either high grade or low grade. This doesn’t effect the stage. A T1,G1 tumor would be stage one, T2 stage 2 etc. The risk of a T1,grade 1 would be intermediate/high because T1 has already invaded the beginning of the lining but the grade is non-aggressive (this is a rather rare dx, however), but T2 has definitely invaded the lining and gone into the muscle. Muscle invasive is another story requiring much more aggressive treatment like cystectomy or chemo-radiation.

So…I don’t think either Rosemary or Tahoe are dealing with stage T2 as this is not treated with BCG (though sometimes mito gets used with TURs even before cystectomy- but Mito is not side effect free and if my bladder was going to go anyway I doubt i’d agree to it).

There is extensive info about pathology here from one of the world’s leading experts on the subject:
http://blcwebcafe.org/content/view/148/159/lang,english/#path

[wendy]

Hi,

I answered your blog message with some info I received from Dr. Schoenberg from John Hopkins, he said that this could be a rare reaction to the Mitomycin, but since nobody can diagnose a bladder over the web…suggested you make an appointment there to see him.

Take care, and I hope things get better very quickly.
Wendy

[wendy]

Hi,

Low grade, non invasive? BCG could be overkill. If your pathology is Ta, grade 1, singel tumor less than 3-4cm, you could be just fine waiting 3 months. And also migght be lucky to have no evidence of residual disease. If not, it is not a life threatening move to wait 3 months.

All the best,
Wendy

[wendy]

[quote author=Rosemary link=topic=2313.msg17018#msg17018 date=1211368318]
When I read the post where you described your understanding of the Doctor’s Dx, I mentally processed this as being Stage 2 Bladder Cancer. (I am Stage 2).
[/quote]

Huh? I thought you were T1. Have I missed something, did your cancer progress? I hope not!

From what Tahoe is saying she is also stage T1, Rosemary are you mistaking this with the ‘grade’?

T2 blc is not treated with BCG, which is only for Ta high grade and T1 and/or CIS. It doesn’t reach the muscle itself so muscle invasive blc (t2 – T4) is handled very differently.

I think this is a typo or misunderstanding?
Wendy

[wendy]

Hi Mark,
I’m sorry about your father’s diagnosis. Whether or not to remove the bladder in the face of bone mets is a controversial issue, and much would depend on the doctor’s choice and the general health of your father, but in my experience chemo is given instead of surgery in case of spread. Stage IV bladder cancer is not curable but is not an immediate death sentence either. There are many issues to consider, a lot of which are covered in WebCafe’s metastatic pages that Pat linked to.

I wish you and your family well,
Wendy

[wendy]

Sheesh, I’m sorry to hear a big tumor was found, and I wish you and your family well in the coming time. Glad your father is healing so quickly after what must have been a no-fun surgery, no fun at all.

Take care of yourself,
Wendy

[wendy]

Hi Rick,

Sorry to hear about the worrisome cytology. Why not ask for another type of urine test, such as the FISH test? There are quite a number of other urine marker tests these days that can be used along with cytology. Sometimes urine marker tests are confounded post-RC but a good pathologist should know how to read it correctly-experience is key, so I hope the report is from MDAnderson or some other great lab.

All the best,
Wendy

[wendy]

I’m sorry for making you feel as if you did something wrong, please accept my apologies. You are just discussing your situation and responding to an honest question! I guess I worry too much sometimes and of course you’re correct that even the greatest clinician can be remiss when it comes to communication. That is not what you need at this time, you really need some answers.

I’m afraid all I have are questions at this point. If not pathology or test has shown involvement, as Zach said, why put your father through a second surgery so soon.

I hope you get the chance to directly confront the surgeon for a satisfying explanation. Each case is different, perhaps there is a particular reason. If not, it’s within your family’s rights to question this advice..right up until you can make a well informed decision yourselves.
Take care and let us know how it goes.
Wendy

[wendy]

[quote author=banxs link=topic=2154.msg16112#msg16112 date=1209134677]
Hi Wendy. The reason for the 4 week cycto follow up was because it was already 4 months since my initial surgery. The good news was that the cytology and FISH tests were negative for cancer cells. A biopsy showed some atypical cells that the pathology report indicated fall short of a dx of CIS/severe dysplasia. As I may need to have a stent put in because of a ureter being blocked either by scar tissue or inflammation from the BCG, my doctor is going to do another biopsy this time a little deaper to be on the safe side. Visually he could not see any recurrence. I appreciate your insight to everyone’s questions. I will then have 3 more BCG treatments.
Thanks Joe
[/quote]

Hi Joe,

This makes perfect sense from what I have read and heard over years of listening to BCG warriors. Getting the 3 maintenance treatments is recommended now in all guidelines for high grade or T1, or Cis. A good biopsy is essential- to be safe.

Sorry about the blockage in the ureter, and I hope it goes away with no trouble. Not visualizing any recurrence is very good!

Where are you going for treatment? Some cancer centers in the US are trialing ‘photodynamic diagnosis’, where the uro inserts a fluorescent dye in the bladder, lets it sit, following which the cancer much better visualized than with regular cystoscopy using white light can. If you can get access to this new tool (phase III trials, approved in Europesince ’05) I’d say go for it!
http://blcwebcafe.org/content/view/93/103/lang,english/
Wishing you all the best,
Wendy