5 things I wish I knew (invasive)

14 years 8 months ago #26787 by mmc
Replied by mmc on topic 5 things I wish I knew (invasive)
Tula,

We are also here for support. Now that the chemo center support is not there, we will be.

You can always send us messages or post to the forum. Hope we can help!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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14 years 8 months ago #26786 by Cynthia
Replied by Cynthia on topic 5 things I wish I knew (invasive)
Tula,
Welcome to our family. The things you are dealing with are not new subjects here you will find that you share much with many of us. The time after you finish treatment is a very hard one it leaves you feeling cut off, left adrift and for many as if they are waiting for the other shoe to drop.
Working with statistics this is probably harder on you than many but…..you are not a statistic. When you look at stark numbers there is much left unsaid what was the median age, the general health before diagnosis, if they had adequate care, refused care? Again you are not a statistic you are uniquely you.

You asked what do you do how do you handle all of this. The same way you have been handling it one step at a time. I know this sounds impossible now but time will work wonders and it does take time to get to the place that your life and mind is no longer centered on your blc. It will always be a part of you now but the day will come that you will realize you have found your new normal. Once diagnosed with cancer we now know that life can change in a minute, that was true before but we just didn’t realize it as firmly as we do now. None of us can predict the future but we can live our days as the gift we know them to be now. I am five years out now and can honestly tell you that I enjoy life now more than before blc because I truly value every day.

What this site is all about is forming community and providing support. Sharing our thoughts, worries, our laughter and tears and I hope you become part of that, it can help more than you might imagine.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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14 years 8 months ago #26773 by nstone
Replied by nstone on topic 5 things I wish I knew (invasive)
I had an ileal condiut done 9/30/08. Chemo for 12 weeks and now I am going to have to have a CAT scan every 6 mos. Oh joy at having to go through that, the axiety of waiting to see if the cancer is back. I want to be cancer free! I feel the same way you do. I want to be cancer FREE! I work in a cancer registry so I'm looking at cancer cases all day long. It really gets to me some days. I worry about my kids and how long I will be around. This is a very tough peroid for me because the chemo is over so my support from the cancer center is gone. I have not told too many co-workers my diagnosis and I can not talk about this with my family. I don't want to worry them. I feel good and I try to keep a good attitude. What does a person do???????????

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14 years 8 months ago #26674 by GKLINE
Replied by GKLINE on topic 5 things I wish I knew (invasive)
I wish I knew the following:

I wish I was told that my State of mind would greatly affect my recovery. Nothing was said about "keeping my spirits up" I was just lucky that I reacted to the downward spiral of my roomates, and said "I'm NOT going to be like that!"

I wish someone had talked to my wife and I about the stresses on the caregiver. The need to be strong when when they just want to roll up into a ball and shut the whole thing away. It was only months later, when I came home from work that my wife said she felt it hit her that day and she couldn't stop crying. I can't believe I couldn't see this.

I wish I had never tried to keep the bladder cancer a secret. The stories that circulated early on were far worse than the real story. When I finally came out with it, I couldn't believe the outpouring of compassion from even the most remote friends. Also, don't be put off by friends and family who Can't handle the situation. You will be surprised by the ability of some casual friends who really come to your side!

If you are like me, You will be cursed with Fernando Lamas line, "It is better to Look Good Then to Feel Good". I would get comments like, "You look so good you must have had the EASY kind of cancer" I would like to know what EASY cancer is. I guess we live in a society where looks are everything, but on days where I really feel lousey, I'd kinda like to look a little lousey. But, on the other hand, I didn't want to freak out my visitors. So, I'll try like hell to look better than I feel.

In two weeks I'd like to hear the words....CURED. I would love to be Cured. I hate cancer (I'll never give it the respect of giving it a Capitol Letter!) and want it banished from my body. I know it has a way of sneaking back....But I want it out! Gone! Banished!Kaput! I'd just kind of like to be Cured. But that is not going to happen...We'll just keep Checking and watching and waiting.

I would like to think this site would be on every bladder cancer Doctors tongue. "Before you go crazy, go here. The people on this site are in the same boat as you and they can help":) :)

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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14 years 8 months ago #26636 by mmc
Replied by mmc on topic 5 things I wish I knew (invasive)
My five things about invasive bladder cancer are really more about Radical Cystectomy. The reason for that is that when I was diagnosed with "invasive" (meaning the cancer has gone through the protective inner lining and spread into the muscle of the bladder), it was return of cancer for me. I origingally had non-invasive. Because I knew there was a chance that my bladder cancer would come back, I did a lot of research in order to be prepared for whatever action I needed to take.

My list is more about men, given that's my personal experience, but some parts pertain to both.

1. Radical Cystectomy is the Gold Standard of treatment for muscle invasive bladder cancer. It gives you the highest chance of survival over other treatments for muscle invasive (stage 2 and stage 3) bladder cancer. While you may think that losing your bladder is a terrible thing, those of us who have had the surgery are here to assure you that it not such a bad thing. If the cancer is in the muscle of the bladder, you want it out as soon as possible. The sooner it is out, the higher the probability that the cancer will be gone for good.

2. There are three primary types of diversion techniques. Neobladder is when a segment of your intestine is used to make a new bladder that is hooked up to your original plumbing. This is closest thing to what you have now. Indiana pouch is when a segment of your intestine is used to make a new bladder but a pathway is made through your navel (hidden) or a bit off to the side and you use a tube (catheter) to drain it. The third alternative is an ileal conduit where no pouch is created and your ureters are connected to small segment of intestine that is used to create a stoma that you connect an external bag. Research the options to make your preference but given what the doctor finds, you may not really have a choice once surgery is underway. Give your doctor your first, second, and third preference but be prepared. The good news is that a very high majority of people are very happy with the diversion they have. There are pros and cons to each.

3. Men will have their prostate removed at the same time as the bladder because there is an extremely high probability of cancer cells getting to the prostate from the bladder. There is a nerve sparing technique that can be done (ask for it) that improves the chance of regaining erectile function. Regaining function can take from six months to three years, so you may want to plan activities prior to the surgery with the knowledge that it will be awhile after the surgery.

4. After the surgery, you will have drain tubes and catheters. You will be on pain meds and you will most likely just want to rest. Do not succumb to this feeling. It is imperative that you walk at least twice in the morning, twice more in the afternoon, and twice more in the evening. Walking is critical to getting your intestines to wake back up start functioning normally again after surgery. Have a loved one make you walk when you don’t feel it. The sooner you are walking and the more you are able to do it, the sooner you will get out of the hospital.

5. If you get a neobladder, it takes time to learn how to use it. Do kegel exercises prior to surgery and after you get out of the hospital. Search the site for the word “kegel” to learn more about what that is. You will be using your pelvic floor muscles to empty your neobladder and to gain control. It takes some time to regain daytime continence (couple of months) and a bit longer for nighttime continence after you get your catheter removed. Don’t get frustrated, just keep doing the exercises. When you first get the catheter out, you will have no control. Use pads, made specifically for men, as they help. At night, you will want to use the pads in addition to the Depends (or other brands) type underwear for extra absorbency. There are also external catheters for men that can be used at night. These are called condom catheters and can be purchased online or specialty pharmacies.

BONUS: If you have had prior problems with enlarged prostate, you are going to find not having the bladder and prostate to be wonderful. You won’t have to get up as often at night and you won’t have to go so often during the day either.

"T" equals Stage.




CIS – very early, high grade, cancer cells are detected only in the innermost layer of the bladder lining
Ta – the cancer is just in the innermost layer of the bladder lining
T1 – the cancer has started to grow into the connective tissue beneath the bladder lining
T2 – the cancer has grown through the connective tissue into the muscle
T2a – the cancer has grown into the superficial muscle
T2b – the cancer has grown into the deeper muscle
T3 – the cancer has grown through the muscle into the fat layer
T3a – the cancer in the fat layer can only be seen under a microscope (microscopic invasion)
T3b – the cancer in the fat layer can be seen on tests, or felt by your doctor during an examination under anaesthetic (macroscopic invasion)
T4 – the cancer has spread outside the bladder
T4a – the cancer has spread to the prostate, womb or vagina
T4b – the cancer has spread to the wall of the pelvis or abdomen

For more information about stage and grade, see: www.cancerhelp.org.uk/help/default.asp?page=2703

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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14 years 8 months ago #26615 by Patricia
Replied by Patricia on topic 5 things I wish I knew (invasive)
1. HUH..Bladder Cancer? Never heard of it...Wish i knew that rusty colored urine is a sign of blood and not the result of something i drank. Wish when my GYN said i had microscopic blood in my urine that he would have suggested a urologist as i didn't think anything about it. Wish my internist who i mentioned it to had thought to refer me and didn't. Wish i had been a little smarter.

2. Wish i'd known how highly specialized this cancer is and that just any local uro is not qualified to treat you. Wish my brain cells had kicked in before my first TURB and found out my tiny little tumor was actually T2 Grade 2 arising out of CIS. Did my research on Top Cancer Centers and Top Uro/surgeons and got in at Memorial Sloan within 9 days of first TURB and was told my sample was not good enough and second TURB in order by top doc.
Second TURB got all the margins the first uro did not get and all the tumor.
All of this was just a lucky guess....and one that saved my life.

Most of you know the rest of my journey which involved consulting with 7 top surgeons in the bladder cancer field. I had done my research on diversions and knew what i wanted not what the doctor wanted to give me.
Dr. Schoenberg is the one who referred me to web/cafe at the time but then it was only blogs..no forum...but i did have 2 people who mentored me..Karen Greene and Wendy Sheridan and it so helped to have someone to bounce things off of.

Pat

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