I went to the uro/oncologists yesterday to try to find out what this growth on my uretha was, He told me it was a tumor and was positive it was cancer, I have to go in tomorrow for a pet scan and I am scared, I have already had cancer twice, colon and rectal from fap, I just started seeing this tumor in novemeber, i have had 2 cts scans since and none of them showed signs of cancer, He said if this is just right in the bladder then it is curable, I am just scared that it could be all threw me now, also i had alot of radiation to that area with my rectum and was wondering, i have tons of scar tissue down there , could this be a desmoid tumor? anyone else on here ever had bladder cancer? if you have any information for me please let me know, i am really scared and just confused.
Replies sorted oldest to newest
I am so sorry Becky,
There are no words, only compassion and some virtual hand-holding if that helps any...this is just so wrong, you have been through enough...my thoughts and prayers and I hope that this has a swift and easy resolution...
Hugs
Sharon
There are no words, only compassion and some virtual hand-holding if that helps any...this is just so wrong, you have been through enough...my thoughts and prayers and I hope that this has a swift and easy resolution...
Hugs
Sharon
I'm so sorry you're going through this. It must be very scary, indeed. Hopefully your doctor is absolutely correct and it's totally curable.
kathy
kathy
I've known people with bladder cancer and it was treated successfully without extensive surgery, but they did not have FAP. So the real question I suppose is whether this is a new primary cancer, or from FAP cancer cells (which would make sense due to the proximity of your prior surgery). The typing and staging would determine what comes next, and as you know, the PET scan will show if there are other tumors in your body.
I am not 100% sure, but my understanding of desmoids is that they are generally intra-abdominal, not within organs. It is quite rare, but there are a few cases reported of urinary tract desmoids. Most of the bladder associated cases I saw in the literature, were bladder invasion by an intra-abdominal desmoid.
What a blow this must be to have this new challenge. I am so sorry you are having to deal with this. It sounds like your oncologist has a positive take on this, so hang onto that. Good luck with the PET scan and I hope it gives you good news. You deserve some!
Take care,
Jan
I am not 100% sure, but my understanding of desmoids is that they are generally intra-abdominal, not within organs. It is quite rare, but there are a few cases reported of urinary tract desmoids. Most of the bladder associated cases I saw in the literature, were bladder invasion by an intra-abdominal desmoid.
What a blow this must be to have this new challenge. I am so sorry you are having to deal with this. It sounds like your oncologist has a positive take on this, so hang onto that. Good luck with the PET scan and I hope it gives you good news. You deserve some!
Take care,
Jan
well i will let you al know the results, lets pray that this is caught early enough,i am so afraid, i dont want to leave my babies yet, i want to live so much and i just pray that god has that in his plans. ty fpr the support,
Keeping you in my prayers think positive and I know that's a hard thing to do(:
I too will keep you in my prayers. As much as we all have to go through dealing with our colons and rectum and so forth and now this is sprung on you. You were a fighter once and prevailed, you will do it again 
.
Stay as strong as you can, and when you can't be strong allow others to be strong for you.
Heidi
.Stay as strong as you can, and when you can't be strong allow others to be strong for you.
Heidi
Becky,
First off, breath! Breath and let it go to God.
Second, you know (or should know) that those of us blessed with FAP are more prone to cancer than the "average" person.
I don't like that a doctor says something so definitive without firsthand knowledge, it may be a benign tumor of some kind that we are all prone to getting. So don't think of it as a death sentence at all, it may be benign.
Thirdly, I doubt this is a desmoid tumor. Desmoids usually are centralized elsewhere and then reach out and "wrap around" and choke out organs, arteries, etc.... they are not in fact, typically, located on an organ so to speak. It is possible, not probable.
I will say this too, bladder cancer is curable if caught early enough, you just have to go thru the tests, etc... to find out the extent and find out if it actually IS bladder cancer first. I know that's probably not what you want to hear, but, I'm telling you straight.
Hang in there, there are lots of us on your side supporting you. Chin up!
First off, breath! Breath and let it go to God.
Second, you know (or should know) that those of us blessed with FAP are more prone to cancer than the "average" person.
I don't like that a doctor says something so definitive without firsthand knowledge, it may be a benign tumor of some kind that we are all prone to getting. So don't think of it as a death sentence at all, it may be benign.
Thirdly, I doubt this is a desmoid tumor. Desmoids usually are centralized elsewhere and then reach out and "wrap around" and choke out organs, arteries, etc.... they are not in fact, typically, located on an organ so to speak. It is possible, not probable.
I will say this too, bladder cancer is curable if caught early enough, you just have to go thru the tests, etc... to find out the extent and find out if it actually IS bladder cancer first. I know that's probably not what you want to hear, but, I'm telling you straight.
Hang in there, there are lots of us on your side supporting you. Chin up!
ty all, i had my pet scan done and the results were reoccuring rectal cancer, and it has spread, im not sure yet where it has spread and i will know more on tuesday, i go to see my oncologists then, i am very afraid and not sure what to even think right now. i just wanted to let you guys know the results, I am looking into cancer centers in my area cause i am not going to give up and die, i want to live and i hope that wherever it did spread can be treated with chemo or whatever treatment, i have 3 kids and my 5 yr old girl my 7 yrold boy and my 15 yr old girl, i cannot leave them yet, please keep me in your prayers and when i know more tuesday i will keep you all informed. ty for all the help, many hugs
Oh Becky..........keep me/us posted.
Don't ever, ever quit fighting.......don't give in, don't ever give up. You got this.
Sending you positive thoughts and prayers.
Don't ever, ever quit fighting.......don't give in, don't ever give up. You got this.
Sending you positive thoughts and prayers.
Becky, I will keep you in my thoughts and prayers for sure. You have a lot of folks pulling for you. And a lot us are right here in the Shenandoah Valley of Virginia.
PS: Becky, don't forget The University of Virginia Medical Center in C'ville. It's a world-class med center. Insist on the best treatment. And get another opinion. Please.
Becky you are in my thoughts and prayers. You can do this.
Becky, you are in my daily prayers. So sorry you have to face this. Keep strong and know we are all pulling for you. HUGS!!!
I am so very sorry for the bad news and will keep you in my healing thoughts. Just so you know, my sister-in-law had cancer twice, the last time was given a less than 5% chance of surviving, and she is now thriving after 20 years. There are many success stories out there!
Becky, so sorry about this news. Definitely the opposite of what you were hoping for. The fact that you want to fight this will help, as attitude does make a difference on the overall outcome.
I will keep you and your family in my thoughts and prayers, and send positive energy to you too. It looks like you have a good handle on how to proceed next, taking the bull by the horns. Stay strong!
Jan
I will keep you and your family in my thoughts and prayers, and send positive energy to you too. It looks like you have a good handle on how to proceed next, taking the bull by the horns. Stay strong!
Jan
All of my prayers and positive thoughts for you Becky...I hope that this too will pass and that you will be able to look back on it as a bad episode in a long and happy life with your family...
Sharon
Sharon
becky. wishing you strength for the fight. we are all praying for you and your children. stay tough and strong.
liz.
liz.
I am sooo sorry, Becky! My prayers go with you in this terrible and difficult time. I can't imagine how you must be feeling. There is an extensive history of FAP on my father's side of the family, so I know a little something about it, and this was one of the reasons I had to have a colectomy. I am thinking of you, sending all the healing I can muster, and may you be surrounded with everything you need for support for you and your family.
Susan
Susan
Becky, I just tear up reading about what you have been through. You have such a strong will and that goes such a long way. I am praying for you and your family. God bless.
I hope you have found out all you need to know by now and have a treatment plan. Not knowing adds to the stress of it all.
I pray all will be fixed and that you'll have the joy of raising your children and grandchildren!
You have a great attitude, keep it up.
I pray all will be fixed and that you'll have the joy of raising your children and grandchildren!
You have a great attitude, keep it up.