pelvic exenteration

 

On 7/8/2009 DebGrammy_4 wrote:

Her cancer is really aggressive. She says she can feel it growing. She is so scared and she is so skinny.

They said mine was aggressive too when it came back last August.  I wish your daughter the best and tell her to keep fighting, keep very positive.  I go to a really great support group here and that may be something she may want to join.  Most of the woman have ovarian cancer.  It's just great to hear other people's stories.  Let me know if you have any other questions.

Karen

My daughter went to the hospital and checked in, 3 hours later she checked back out and went home. She couldn't do it. She starts chemo tomorrow. Three days of chemo then three weeks off. They said it would be at least three cycles.

 

On 7/21/2009 DebGrammy_4 wrote:

My daughter went to the hospital and checked in, 3 hours later she checked back out and went home. She couldn't do it. She starts chemo tomorrow. Three days of chemo then three weeks off. They said it would be at least three cycles.

You are in NY right?  Did she go to Sloan?   So she decided to not have the pelvic exenteration.  I don't know where you live in NY but I think Sloan is suppose to be one of the best.

We live in Wisconsin.

 

On 7/30/2009 DebGrammy_4 wrote:

We live in Wisconsin.

Has she started chemo?  How is she doing with that?  I just wonder if it would be worth your while to get to Sloan in NY?  That would be the closest to you.

Karen

 

She started chemo last Wednesday-Friday. She is pretty nausiated and tired and angry that this has had to happen to her and she just wants to be her old self. We don't have enough money to travel anywhere except within the state of Winsconsin. Some days are better than others.

Hi!  I just ran across this site and I wanted to let you know that I had a pelvic exenteration 10 months ago due to recurrent cervical cancer.  I was diagosed with stage 2b cervical cancer in Dec'06.  Went through chemo and radiation, had a PET a couple months later and no cancer showed up.  10 months later I started spotting (a sign of recurrence) and a new tumor was growing right under my bladder.  The gyno oncologist here said it wasn't cancer, wouldn't even do a biopsy...he referred me to a urologist.  The urologist said he didn't know for sure what I had but it wasn't urological.  It was 2 months later before I found another gyno oncologist to see me (4 hours away) and by then the tumor grew 3x in size.  She said right off the bat during my exam that it was cancer and did a biopsy right there.  As soon as the results came back I went to set up my appointments with my chemo dr and the radiology oncologist that treated me the first time.  That took a couple more weeks to get marked and my treatment plan figured out.  She told me right from the start that she  didn't think that radiation would work for me since I just about had my  lifetime maximum limit from the first round of cancer.  She told me from the start that I would probably have to have the surgery but I insisted on the radiation because I just knew it would work.  Guess what....it didn't!  I was also told by more than one dr. that the chemo wouldn't save me from recurrent cancer but they wanted me to have it just in case... to help kill any cells that may have traveled elsewhere.  We waited a couple months and I had another scan.  There was still cancer activity and I was told that my only chance was the pelvic exenteration.  I had the frontal type where they had to take my urethra and my bladder.  They make a new bladder for me using parts of my small and large intestine. I have the Indianna pouch so I don't have to wear a bag. I have a small stoma that I insert a catheter in every 4 to 5 hours.  They also had to take tissue from my chest area to use for reconstruction.  Because of all of the radiation I had plus the surgery, I have scar tissue that is blocking my ureters so I have stints going through both of my kidneys.  There are tubes hanging out of my back that they use to work from.  I still have pain and I don't think I will ever be the same but without the surgery the cancer would have won.  That's my story.   I've learned that there are no guarantees with cancer and there is no right or wrong choice/decision when choosing how you want to try to treat it. You have to make the choice that you believe in and are comfortable with.  I wish your daughter luck and I pray things work out for her.  She needs all of the support she can get right now.  You mentioned that you live in Wisconsin....are you close to Chicago because they have great cancer centers and doctors there.  That's where I go.  If you or your daughter have any questions I would be happy to answer them.

We tried getting into cancer treatment centers of america but they don't take wisconsin state medicaid. I am so glad that you are still here to tell your story and will pray for you to be around for a long, long time.

I had the total pelvic exenteration surgery in Febuary 1998.  It saved my life, as they told me without it I would only live 6-18 months.  I had a second opinion and they said I needed the surgery also.  I have both the urostomy and colostomy and have learned to live with them and have had a good quality of life since the surgery.  I was 46 at the time of my surgery.   I was very scared in the beginning of how I would be able to cope with the changes but in time everything has worked out.  I hope your daughter will follow thru with what treatments her doctor is sugesting and also with the second opinion which is very important.  My Dr. is from  Albquerque NM. and I feel he is the best.  After 11 yrs. I am only now haveing some problems with chronic UTI's and may have to have stints put in to open up the uterers.  I have had some bowel obstructions but they were usually from eating the wrong foods and they resolved themselves.  A couple of times they were from the bowels twisting but they also resolved themselves and I have never had to have any other surgery other than to remove my gall bladder.  I realize that by this time your daugher has probably all ready made her decision one way or the other and I hope that all has gone well for you. I think that we should pray for guidence and do our part and then put it in God's hands and turst Him with the results, of course that is always easier said than done I know!!!...  Would lke to her how she is doing if possible.  God Bless,

I came across this when researching the info of TPE for my mom. This web has a good info too. http://www.inspire.com/groups/national-cervical-cancer-coali