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Confused, scared, to many decisions to make
I am a 51 year old male. I had been diagnosed with BC on Feb 2nd. As soon as I found out I wanted to get thru this as fast as possible. I went to the urogolist and he did a cystoscope and said I had a tumor. At that point he scheduled a biopsey and tried to remove the tumor at the same time. No luck… could not get it all. I’ve had ct scan which shows it is out side the bladder but does not appear to have spread to any other organs or lymph nodes. Had a bone scan which came back OK also.
Right away the Uro wanted to remove my bladder and then deal with whatever else he found upon going in. I got a little scared and went to an Oncologist and asked for his opinion. He had another pathologist read all the reports and consulted with other oncologists and recommended chemotherapy first and then get the bladder removed for obvious reasons. Everyone is telling me they can not tell how far it has spread till they do the surgury. Are their any other more definative tests that can be done to determine the stage before actually going in? I have read that usually in these situations it is usually under staged… I have started the chemo and have had 3 treatments. First one was cisplatin / gemzar. Second treatment was gemzar only. Went for the third treatment and could not get it because my blood counts were to low. Skipped that week and my off week and then went back and recieved the cisplatin / gemzar again. I have had absolutely no side effects at all. I’m actually feeling really good. I went to the oncologist and he reviewed everything and cut back the gemzar a little so I can get thru three treatments in a row hoping my blood count doesn’t fall low again.
Anyhow, I’m looking for a needle in a haystack when I say this. I do not want to lose my bladder. Especially at my age. I suggested to the Oncologist that being I am not having any side effects and if I can make it thru the three rounds of chemo without any real problems, can he give me three more to try and really kill it? Is that really a viable option or am I looking for that miracle that doesn’t exist? The Oncologist did say what I want to do is not the standard but he would scan me after finishing these first three rounds and then discuss the results. I am so fearful of the surgury and life afterwards I just don’t know what to do. Is it worth the risk not having the bladder removed? Is there any bladder sparing treatment out there?
HELP!
Thanks,
George -
11 Replies
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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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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 -
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
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
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
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.
George
I have to echo the above. I had my bladder removed Oct 06 and my life’s pretty good. I also vary my percentages but it’s absoloutely in the upper 90s. And I wouldn’t have believed it before I had the op either.
Tim
George, we’re exactly the same age. I was diagnosed with invasive BC almost two years ago, and had surgery at age 49.
If, indeed, yours is invasive, your search for the needle should stop and you should seriously consult with doctors at a major cancer center that sees lots of bladder cancer patients. Chemo will not “kill it”.
I’m gong to PM you my cell number, and please call me if I can help answer any real-time questions you have, or to allay any fears you might have. With my new bladder my life is 98 percent just as it was before surgery (the percentage changes every time I say this, so you might well find another thread where I said it was 99 percent, but you get the idea).
I am so fearful of the surgury and life afterwards I just don’t know what to do. Is it worth the risk not having the bladder removed?
May I be blunt? No way, no how, not even an option. If you have invasive bladder cancer and decide to fiddle while Rome burns, it will spread and spread and your options will then be nil. Right now you have time to nip it in the bud–waiting will give it an opportunity to leave your bladder and visit other organs that you really don’t want visited.
And when it’s all said and done, it’s not nearly as bad as you’re imagining it will be. That I can also guarantee.
Please call if I can help you.
Zach
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John SteinGeorge there should have been enough of a sample for a pathology report when you went in for your TURB…..ask to see that. If it truly is outside the bladder then you are at a high stage. My advise is to seek another opinion once you finish this round of chemo with a top uro/oncologist/surgeon at a top facility. Bladder preservation is probably not an option as they will not take anyone into that program above a Stage 2.
There are many men on this site younger and older than you who have a neobladder and are quite happy with the results.
Please let us know where you are and what the pathology says.
Pat
Hi George,
Where are you being treated? I want to start there if that is ok. Are you in the USA?
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.
George,
I have non-invasive Bladder Cancer so, I wont’ be a whole big help. There are lots of folks here who have been where you are at and will be able to give you some of their counsel.
I would like to ask you, however, if the Dr. gave you some sort of staging of your cancer from your biopsy. I think now they are using the terms of Stage I, II, III, or IV. I am Stage II.
Hang in there…..
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
