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Jumped a forum -new ailment-need info

jane283
Posts: 36
Joined: Feb 2013

 

My father has had colorectal cancer 6 years ago and is now free of disease. :)

Now for the problems:

Due to the radiations given to his colon,6 years ago,his ureters & bladder have taken a hit and his kidneys bloated with urine.Only one of his kidneys is functional now as the blocked ureters caused hydronephrosis to the kidney and one died.Frown

The doctors suggested a nephrostomy with a pouch on the outside.He already has a bag for his colon cancer by the way.

If the bladder and ureters are all damaged,what options do we have.

 

I have read about NeoBladder from this forum so far.Any info shared will be helpful to atleast ask the doctors if the second ostomy can be substituted with any other procedure.

 

Advance thanks!

Jane

 

 

ktgibson10@gmail.com's picture
ktgibson10@gmail.com
Posts: 7
Joined: Oct 2014

Jane,

After my mom was diagnosed I found a book on amazon that explains treatments,  surgical procedures, and a lot of information. It gave me and my family the ability to go into doctors appointments feeling prepared.  The book is called 101 questions about bladder cancer.  

I hope your dad is okay

jane283
Posts: 36
Joined: Feb 2013

Thank you for taking time to reply,what is teh book called?

 

We are yet to take a decision on what surgery to go for next,if its going to be PCN or stents that will have to eb changed.

Kaleena's picture
Kaleena
Posts: 1404
Joined: Nov 2009

Hi Jane

sorry to hear about your husband's problem.   I am currently experiencing loss of kidney function but was able to save the kidney by having a stent placed.   I had endometrial cancer and as a result of radiation in 2006 I developed hydroureternephrosis this year.   At first the uroligist indicated to wait because i didnt have any symptoms however within four months my left kidney shrunk.    I ended up getting a stent.   The stent has to be replaced every 3 months so that means out patient surgery every three months.   They indicated to me the possibility of a ureter bypass surgery.    This would cut the ureter near the blockage and re insert it in the bladder. 

So for now i will just deal with the stent thing.   

how is your husband doing?    How are you?

my best to you both

Kathy

flyerette65
Posts: 50
Joined: Oct 2014

Hi Kaleena,

I too had endometrial cancer (USPC)  and now have been having heavy bleeding from either kidneys or bladder.  Will find out more tomorrow when I see the radiologist.  I declined radiation because of all the side effects.  I do not want "a bag". I actually would prefer death!

Kaleena's picture
Kaleena
Posts: 1404
Joined: Nov 2009

Hi Flyerette:

How did your appointment go?   The only radiation I had was 3 brachytherapies.   There are so many things that can cause bleeding.   Prior to my getting a stent, it seemed that no one was concerned with the symptoms I was having although I felt like I was dying.    It is amazing that now after the stent how bad I really was feeling.  I kept going from doctor to doctor to find out what was going on to no avail.   Even the original urologist said I wasn't experiencing symptoms that concerned him and then four months later my kidney shrinks.   

Take all the information in that you can.   Ask many questions and let them know all of your symptoms no matter how small.

My best to you.

 

Kathy

flyerette65
Posts: 50
Joined: Oct 2014

Hi Kaleena,

Before I went to the urologists, my oncologist called with the results of my urinalysis, no infection, almost straight blood in the specimen, very little urine.  The urologist wants to do another CT scan and then a cystoscopic exam under anesthesia.  He said if we did an "in office" cystoscopy and he found something that I would then have to have a repeat cystoscopy under anesthesia.  I said let's do the cystoscopy with anesthesia. I'm waiting for the scheduler to clear it with my insurer.  Doc wants me to have the procedure before Christmas, I would prefer to wait until after Christmas, lots to do plus my mom turns 94 on December 22 and I was wanting to have a party for her.  Thank you for asking. Have a good evening.

 

Kaleena's picture
Kaleena
Posts: 1404
Joined: Nov 2009

Hi Flyerette:

It seems that I always pass my tests but things still aren't right.   I had gone to the urologist who said I was experiencing any real symptoms and then four months later my kidney had already shrunk from 10.5 to 8.4 and I had some loss of my left kidney.

I know what you mean about doing the stuff before Christmas.   My mom just turned 81.  She was still pretty active and driving herself.  However, Tuesday she was in a motor vehicle accident.   She didn't want to go to the hospital, but she appeared to be dazed so we had her checked out anyway.   Ended up with a bruize and swelling on her knee.   Her car may be totalled though.

Did you decide to have the CT done?   Since I have a stent, I have to go every 3 months and have it replaced and they also check stuff.   I really don't like having to go under anesthesia every three months but at this point there is nothing I can do.  It will help protect the kidney.   The only other option I have is to have major extensive surgery to remove the 6 cm soft tissue mass and also to have a by-pass ureter surgery which could have risks of colostomy and loss of leg function due to nerve damage.   Not ready for that option.

I am with you on just going straight for the cystoscopy under anesthesia.  Why have the possibility of two procedures.   

Anyway, I wish your mom a very Happy Birthday and a Merry Christmas.

 

flyerette65
Posts: 50
Joined: Oct 2014

Hi Kaleena,

I had my CT scan today and Wednesday I'm having the cystoscopy under anesthesia.  I decided I'm just so nervous about it all that I shouldn't wait because I would be a total basket case in three more weeks.  The CT scan didn't show any blockage, but, of course, the technicians don't tell you anything.  My husband of two years and I are legally separated. We've been separated for about 6 weeks because I didn't make him happy.  He doesn't realize that he's responsible for his own happiness. I called him 4 days ago to tell him about everything that was going on but I haven't heard back from him.  For a "christian" he's not being too christian to me. How can a "christian" man stand before God, take the wedding vows and then change his mind? He's been married 4 times and all marriages have ended in divorce.  I just got taken in by his attention.  The fact that I was coming off chemo, bald and fat and sick and someone was saying all the right things really turned my head.  Normally I'm very cynical but cancer weakened everything about me, temporarily anyway. And I was even dating two other men at the time and I dropped both of them for him.  What an idiot I was!  Right now I just want someone to hold me and tell me everything's going to be all right. They told me today that I have a higher risk of bladder cancer because of chemo treatments.  How come no one mentioned that to me BEFORE I did chemo?  I don't remember reading anything about increased risk of other cancers with regards to chemo.  If this turns out to be cancer would I still go to my Gyn/oncologist or would I have to find another oncologist?  I'm feeling very unloved and blue tonight.  I know God, my family and my friends love me but that's really not eough.  I was widowed for 16 years before I remarried. I just want and need someone to love me and to take care of me  once in awhile(for a change).

 

 

Kaleena's picture
Kaleena
Posts: 1404
Joined: Nov 2009

Dear Flyerette:

You are right that he is responsible for his own happiness.   However, don't you ever feel bad about your decisions that you have made.   It is all a learning experience.  Some parts of which are not good, and I can tell from your post that you will definitely continue to be loved by your family and friends.  Your ex on the otherhand, will continue to spiral down.  Sometimes we feel bad when someone takes advantage of us at our weakest point in our lives.   The best thing for you is to keep your head up (even if you feel like crying) and walk proud and be happy.   Find at least one thing you are happy about and keep that thought in your mind.  You are special.   Let go of all the negativity and negative thinking people that you can.

I am glad you got your CT done.   I know how that can work on your mind and drive you absolutely crazy.  Yes, chemo and radiation can cause other cancers.  Its in the very very fine print.  However, most doctors don't say that because at the time that they are treating you its the least they are worried about.  But it should be told to patients so that us as patients can make clearer decisions.   You will probably have to go to both.    Currently I am seeing a gynecologist/oncologist and a urologist.   They kind of work together even though they are at different hopsitals and locations.

Good news about no blockages though.   Praying for the same for your procedure on Wednesday.  Let me know.

 

flyerette65
Posts: 50
Joined: Oct 2014

Hi Kaleena,

Well I am high on drugs right now from having the cystoscopy this morning.  He biopsied 3 tumors and I should know something next week.  He also said the lining on the back wall of my bladder is very thick and he doesn't know why. He came in to talk to me both before and after the procedure.  All the nurses were personable and emphathetic and that means a lot when you're surrounded by medical staff who act like they are concerned about your well being.  You are right about my soon to be ex husband.  I know he feels guilty about his behavior because he told me I could stay on his medical insurance until all my issues were resolved, he just has no heart.  He will continue to spiral downward until he just burns out and that is not my problem.  I just read Dr. James Dodson's book Love must be tough or something like that and in his book he basically says the same things you did in your message. Walk tall, be pround, don't be a groveling woman, let him have his freedom sometimes that brings them back to their senses.  I'm going to get off now I need another nap! Hope you're doing well! Thank you for your uplifting words.

 

Kaleena's picture
Kaleena
Posts: 1404
Joined: Nov 2009

Hi Flyerette!

I hope everything is going well for you and you have recovered well from your cystoscopy.   Have you heard anything yet?   I was out of town and also dealing with some family matters so I am just getting back on the boards

Thinking of you

HalBo's picture
HalBo
Posts: 23
Joined: Feb 2015

...wishing you the best Flyerette. We're not all like that. May God keep you in His care.

HalBo

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