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Confused, scared, to many decisions to make

10 years 7 months ago #15645 by mssmr
George -- Susan here. It is too late for me to have surgery to remove my bladder. When I read what Zachary posted appealing not to wait until there are no options, I thought of myself as an example of someone who did. I do not "blame" myself because at that point, I didn't know enough about bladder cancer to do anything but trust the Major Cancer Center treating me. I don't "blame" them either; they took a often-followed path. But the MVAC didn’t work, the tumor that remained after my turbt continued to grow. I believe that if I had learned about blcwebcafe.org in March 2007, I might have had an r/c then. The story of my journey until recently is on the story board, so I’ll just put it in a nutshell here: I have mets and after several months of feeling very well, I feel sick with a cough and an ache in my side this week. I know you can’t change the past, but can, perhaps, help others. Your decisions are your own to make, though, and I hope for you to have the best outcomes -- Susan

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10 years 7 months ago #15624 by GEO
I want to thank all of you who responded. I really appreciate all the good information you have passed along. I just need to digest the information and make a decision that I am comfortable with. I do have a million more questions to ask before I make a decision, but I'm not ready yet! I need to sort out what you all have told me so far. I have approximately 6 weeks till chemo is done and have to have a decision. Again, I thank everyone for all the valuable information.
Thanks so much,
George

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10 years 7 months ago #15618 by Zachary

I really don't know what this all means other than the Doc's are saying it is outside the bladder.


Get a notepad and bring it to your next appointment and ask your doctor exactly what he means. Don't leave until you're satisfied that you understand. Believe me, I've been there. Things are happening so fast and so many unfamiliar terms are being tossed around that it's easy to lose focus and lose track of exactly what is going on. When I was first diagnosed I honestly didn't hear a word the urologist said--the room was spinning and I had to lie down I was so close to passing out.

As an aside, as my wife and I were driving home from the clinic in a state of silent shock, a car ran a stop sign and nearly t-boned us. It's not always the things you think are going to kill you that actually do. At any moment, at any intersection, life may throw you a curveball you'll never see coming. This one--bladder cancer--is at least a curveball you can take a swing at.

In my mind I realize bladder removal is probably the best thing to do at this time to have the best chances of getting it all and hopefully not re-occuring. I am having a hard time accepting that. As I said before, I really don't want to go thru the surgury and recovery period and lifes changes afterwards. I read articles of people with other types of cancer being cured with chemo. Why can't this happen with bladder cancer?


Chemo isn't a magic bullet that kills cancer. It is a systemic solution that kills *all* fast-growing cells, including the lining of your stomach and your mouth. If you had enough chemo to kill all your invasive bladder cancer it would do an incredible amount of damage to your body. And it probably wouldn't kill all the cancer anyway. Again, ask your doctor if this is an option.

None of us wanted to have our bladders removed, but compared to the alternative it's a walk in the park. Karen's (momof4) husband is, sadly, an example of someone with bladder cancer that has spread to other organs and his bones. If he could talk with you, I'm sure he'd advise you to have the surgery (if that's what your doctors are recommending) while you still can.

Since we're the same age, you might remember the film they showed in Driver's Ed called Signal 30 . Signal 30 is the radio call-code police use to designate a traffic accident with fatalities, an accident there is no need to call the ambulance for. Please don't be a Signal 30 out of fear or confusion. If your bladder can be spared, terrific. But if not, there are people here who can help you through this with knowledge and support.

But please ask your doctors for options and opinions. If you aren't clear on something, don't walk out the door until you understand it.

Best wishes to you.

Zach

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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10 years 7 months ago #15607 by joeburg55
Hi, My name is Joe. I was diagnosed with invasive BC on my 52 birthday. It was grade 3 t2n0m0. It had not passed threw the bladder wall, but had invaded into the fatty tissue and was on its way into that area. I took the bladder sparing protcol for pretty much the same reasons you have stated. Its a hrad dicision to make. That is one of the options that is availible. The other options that are availible , but are not as pleasing im sure you have researched. I must repeat , that my cancer had not breached the wall however. If you have any questions you think i could answer for you pleasefeel free to ask. I am working on 1 year cancer free as of the end of May 08
joeburg55

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10 years 7 months ago #15584 by GEO
Thank you everyone for the fast response... I really appreciate it. I am at a major cancer center in the north east. I feel I have the top doctors available. No one will give me a definate stage. The pathology report is very unclear. Probably why the Uro and oncologist both immediately recommended bladder removal.
The ct scan report said... Anterior wall thickening and a linear area of hyperenhancement along the urothelial surface of the anterior bladder wall measures approximately 1.8 cm in length. An irregular interface of the serosal surface of the anterior bladder wall with the perivesical fat is also shown.
The pathology report said... invasive urothelial carcinoma, high grade.
the carcenoma extensively infiltrates the lamina propria.
the detrusor muscleis seen and is involved by he carcenoma.
angiolymphatic and perineural invasion is identified.
urothelial carcenoma in-situ (CIS) is identified, involving the von brunn's nests.

I really don't know what this all means other than the Doc's are saying it is outside the bladder.

In my mind I realize bladder removal is probably the best thing to do at this time to have the best chances of getting it all and hopefully not re-occuring. I am having a hard time accepting that. As I said before, I really don't want to go thru the surgury and recovery period and lifes changes afterwards. I read articles of people with other types of cancer being cured with chemo. Why can't this happen with bladder cancer?
Thanks again,
George

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10 years 7 months ago #15583 by momof4
Hi GEO,

I read your post and I know exactly the fear that you are having...My husband is 48 and his cancer was diagnosed last June. He did 3 rounds of different Chemos, but was not eligible for surgery because the cancer spread to his bones. His cancer is now metastatic, and there is no chance that he can beat this. In my humble opinion I would suggest getting a second opinion at a major cancer facility. There are fantastic hospitals all over the country. If you give me an idea as to what region you are in, I or some of the other members may be able to help you find a top Dr./ facility.

If the cancer is aggressive and has penetrated the wall of the bladder, the only option you really have is to have it removed. The chance of spread is so great that waiting is just too dangerous.

I also suggest the second opinion because if the cancer has already spread, you Do NOT want to get the surgery. I have seen it time and time again where a person has their bladder removed only to find that it had already spread. There is always a chance that it could spread anyway but your best bet is to have the chemo first to get any microscopic cancer under control before removal. I think your Dr is on track in that regard.

See if there is a PET Scan available to you. Also, when you have a CT Scan, or Bone Scan, those scans can also be viewed by another radiologist to see if something was missed, or you were possibly over or under staged.

You must be proactive, and aggressive with this cancer. It is a killer if you wait too long. Don't hold on to your bladder...it is only a body part. You are much more important to your family than an organ.

Best of luck to you,
Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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