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Doctor\'s Response and Heartbreaking!!

6 years 3 months ago #42975 by mmc
We are all rooting for you both!

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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6 years 3 months ago #42972 by jaxmad13
Mike,

Thanks for your response.

We go in tomorrow for treatment #2. For the most part treatment has gone well. He was sick on Sunday as he didn't take the anti-nausea but did after he was sick. His main problem now is constipation which he gets from pain and anti-nausea meds. We just need to figure out a regimen for him to follow and that will work for him.

He is on a cycle of two weeks on and one week off. His creatinine level is elevated so they are keeping an eye on his kidneys. Our next hurdle is that he has a training in October out of state and we need to figure out how we will do his chemo treatment at that time. I know he doesn't want to or can't miss this training so hopefully the doctors are understanding and work with him.

It has been a trying time and we have just started our journey and I think the hardest thing at this time is knowing this is something we will have to deal with probably for the rest of his life. All we can be is positive and know that he will beat this cancer.

Thanks for listening! :)

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6 years 3 months ago #42950 by mmc
Sorry to hear about the news but at least you now have it. T4 is the worst on the T scale. That means it has grown through the bladder and into surrounding tissue. The M (metastatis) scale is really worse one.
That has not been confirmed. Nowadays (just recently) NCCN updated the protocol to do chemo before the RC. Improves odds.

50/50 is just that. Might be and might not be. If odds were 90/10 against and he is in the 10% group then that is still %100 not having cancer. Odds and probabilities are a guide. You never know which side of the ratio he will land in.

If the doc said it has already spread to bones or lungs then your husband may not want to bother with a cystectomy.
He didn't say that though. These odds are a guide to help decide a path forward.

I looked at odds when deciding what I would do if my cancer came back. Odis's were in favor of trying alternate treatment (like more mitomycin) if I only had the CIS come back. I didn't care. I was going to take a very aggressive approach and get my bladder out anyway. As it turned out my bladder cancer recurrence was T2 anyway so the recommended treatment was removal. That was almost 4 years ago.

There is no gaurantee for any of us. A drunk driver could come crashing through your front door any minute.
Don't let the odds get you down. Just use them to discuss the treatment options. If there is more than 0% chance of survival, then go for it!

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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6 years 3 months ago #42940 by CatherineH
When I first came to the forum after spending months out there on my own reading dismal statistics for my type of BC, I was quickly reminded by a member here that statistics are just numbers. They also include the results of doctors who are not at the top of their field and at the bottom of the barrel (yes there are some), as well as outcomes for patients who might not have actively sought out or followed their recommended protocols, etc.

Telling you 50/50 is a pretty safe out for your doctor and is a very non-committal answer. That way he doesn't have to worry about raising false hopes nor is he predicting a more dire outcome. It lets him convey to you that it is a very serious situation you are dealing with and to prepare you for that.

At my first consult after the initial path report came back, he said "you might have to have your bladder out, you might not." In the end, I did not. The worrying and waiting is so difficult and I am glad you found us early in your process of getting through this.

BUT... there is no reason to think other than positively right now! We are your cheering section now and are thinking good thoughts right along with you!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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6 years 3 months ago - 6 years 3 months ago #42939 by Alan
<strong>sara.anne wrote:</strong>

I think that the doctor is being quite honest with you. It sounds as if you have a 50/50 chance, statistically.
HOWEVER and it is a big HOWEVER there is a lot more to it than statistics. The patient's attitude and will to fight this thing are very important, as is the will and strength of his support system, you!

This is a serious disease and you are doing everything you can to get the best outcome, starting with chemo.

Some doctors don't tell the patient everything; I am one of those who wants/needs to know exactly what is going on, so I respect a doctor who will tell me. You asked your questions, and he did not "blow you off" but answered them to the best of his knowledge.

We all wish you the very best, and are here for you.
We will be thinking the very best thoughts, and you should also. An optimistic attitude goes a long way now.

Sara Anne





Sara Anne gave a very good response. I too wanted my doctor to tell me up front. I'll never forget when the path report said G3 (high grade) he called my wife who is a nurse at the same hosptial that he sometimes has procedures done (she is maternity)to ask if she wanted to break the news. She said he is a big boy call him direct, which he did. Anyway, you go ahead and plan on being part of the 50% that beats this as I ditto the attitude part and it IS just a number. Read all you can about this, ask ANY question to this forum, someone will have a similar situation. And, perhaps a second opinion as many will say found with a leading hosppital that has a department that sub specializes in bladder cancer not just uroligical diseases.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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6 years 3 months ago - 6 years 3 months ago #42937 by danielle
I am so sorry that your Doctor's prognosis has knocked you for six..I know its all very scary

4 years ago my husband had High Grade Cancer in the bladder.He had 4 cycles of Gemzar/Carboplatin shrinking the tumour before radical surgery..)..(Removal of bladder, lymph nodes and prostate)... (Carboplatin was chosen rather than Cisplatin as it has been known for deafness to occur after treatment).

Everything was fine for about a year and then some cancerous cells showed up in the pelvic region and stomach...Again four cycles of Gemzar/Carbo..All clear was given.

Then six months later, dreadful pains in the rectum, (btw, he had passed a colonscopy examination two months previously and the all clear was given.)On the CT he had a few months earlier there looked like something suspicious that is why the Oncologist sent him for a colonscopy...

After a month of suffering those pains, (Doctor said it was most likely haemoroids) he went into hospital for a biopsy of the rectum...(He was now in really great pain.) It was found a huge tumour blocking the rectum...Getting him stable and ready for the operation took a further week and then he had to have a colostomy performed...

He now has one pouch for urine and another for his bowel movements...The pouch for urine has become his least worry and I can't tell you how much he is suffering with the BM pouch...

But, I have to say this, his moral is high and he manages to sit on the beach everyday.We live in Israel so hot weather most of the time..I am so lucky to have friends who give us a lot of support...

On the 26th its back for a CT, (as he has just finish another 4 cycles of Chemo) He spent a lot of time getting blood transfussions as the chemo brought his bloods down every treatment...Unfortunately the 30 radiation treatment he received last year for the stomach as effected the nerves in his feet and he now has difficult to walk. But again, he struggles, and doesn't give in.He went swimming last week...He is my HERO

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