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Scared
I’m trying to deal with getting the news they say I’m a stage 2 but want to do the neo procedure but I’m so scared about the pain after surg. I’m 60 but very active and still working in nursing but some how it does not help being a nurse it seems worse to me. I thought I was so healthy and did not take one medication. I’m having surg in 10 days at IU with Dr. Knoh which they say is good but everything is going so fast. Can some one tell me what the post op will be like especially the first 5 days.
(Carolyn, I moved your post to a whole new thread–Zachary) -
15 Replies
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Having come thru surgery 6 weeks ago, I agree with Zach, that the finite pain was easier to deal with than the imagined pain and was actually very managable. I was allgeric to the pain med and the first night I itched like crazy…it was worse than the pain. Luckily it was straighted out the next day. My nurse at Hopkins kept on saying “there are no martyrs on this floor” encouraging me to use the pain button as often as needed. I stopped after 2 – 4 days as my bowel functions became more important to me than the minimal pain. I was worried that I was going to come home on the 3 hour drive doubled over in pain and that was not the case at all as I had no pain at that point. The real problem was my leg bag overflowing and wetting my pants…something I never anticipated…and no big deal.
Again that was me and everyone experiences life differently.
Good Luck!
Mike
Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23
Carolyn,
My heart goes out to you…I was dx’ed last March, had my TURB done, spend the next 6-8 weeks doing research, getting a 2nd and 3d opinion, all doctors agreed that I needed 3-4 months of chemo and then have the bladder removed…my cancer was into the muscle but just barely…I asked if they would consider a “partial” RC but none of the doctors would even consider that idea due to the fact that BC so often returns. So I looked at my options and of course wanted to lean towards the neobladder…in my area I could only find one doctor who did neobladders on women and there were only 7…and when I called to talk with them, all had to cath themselves…in fact, that is what they were told to expect. Like Pat, I wasn’t willing to go that route. I got my Indina Pouch late in July. I thought I would be repulsed by the idea of a stoma but from the very first time I saw it, I had a sense of loving it which is really strange because I have never been in love with my own body before…anyway, mine is located not in the belly button but nearby and I lovingly call it “Rosebud”. The first time the nurse showed me how to cath, it
all seemed very natural to me…like it was meant to be.I was 56 and never had a serious illness of any kind and not used to being a patient. It was very tough…the chemo and then the surgery…then the adjustment to peeing in a new way and taking care of “Rosebud”. I’ve had my struggles and thank goodness for the wonderful folks on this forum…they have helped me alot, especially Pat and Holly…anyway, here I am almost five months later and doing quite well…I still have to empty every 2-3 hrs. during the day but at night I can make it six hours which is better than most who have their orginial bladders.
So guess what I most want to share with you is the idea that you are and will continue to be challenged but you can decide to be a warrior and win this battle. We never know how strong we are until faced with such adversity. And we can ajust as need be. You will feel better when you have a plan in place…its the decision making process that is the worst…and then we wonder if we have made the right decision…take the time to research and then be satisfied that you are making the best decision based on what you know. I will keep you in my prayers. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Hello Carolyn, I am 66 years old and I had my sugery March 2, 2007. I got the Indiana Pouch in Memorial Sloane Kettering with Dr. Bochner. After the surgery I was not a very happy patient. My daughter kept telling the nurses my mother is really nice. I hurt and everybody knew it. My surgery was 9 hours, I also had a hysterectomy. I was in the hospital for twelve days. I am doing good. I saw my doctor Wednesday and he is very happy with me and his work. I haven’t gotten infections. I use my telephone as my timer which alarms me every 4-5 hours during day and 5-6 hours during the night. My stoma in in my bellybutton. Everyday I think less about it, I feel sorry for myself sometimes but I look around and some people have it much worse. I come on to the forum and read what others are saying which helps me. If you would like to speak to me by telephone I would be happy to call you (I have unlimited calling plan). I cried and grieved for my bladder also. Be gentle with yourself. Ellen
trying to learn how to take one day at a time.
RC March 2, 2007
Memorial Sloane Kettering Hospital
Hi Carolyn , I can relate to your concerns. I am recently diagnosed and seeing specialist doc for first appointment on Thursday. I have done lots of research and have devised a list of questions. I have waited several weeks for this appointment and my fear of the unknown provokes anxiety, irrational thoughts and periods of depression.
I felt very lucky to find this forum, its a great place. Others make you feel very welcome and offer reassurance and will not gloss over any details. It offers a huge resource of information for both practical and emotional support.
I know that I have to make decisions about choice for type of bladder replacement. I have found your posts very interesting and the replies have been informative for me.
Carolyn I want to wish you well for your pending surgery. It will be so helpful for me and others facing surgery if you would be kind enough to keep us updated. I to am very scared and like you I am crying a lot and totally understand where you are at right now. I hope you are feeling better after the support that has been offered to you from this wonderful family!
Maria xx
Carolyn, it *is* a rotten choice to have to make. There is definitely no getting around that fact. Right now, though, it’s the hand you’ve been dealt, and it’s time to get clarity about your situation.
If it’s important to you, ask your doctor about the possibility of bladder-sparing procedures. Ask to talk with other women who have gone through something similar. Not just by email or a forum, but voice-to-voice over the phone. Maybe even in person. I can’t imagine anything more comforting then meeting someone who has not only gone through what you’re going through, but has come out on the other side. I’ve been fortunate enough to talk with a couple of men here over the phone, and I could literally–and I do mean literally–hear the tension and fear in their voices almost vanish by the end of the call. Sometimes just talking with someone is all it takes.
Write down every one of your questions and concerns for your next doctor visit. If you think you might be too upset to ask them, bring along a friend or family member. That way you’ll know exactly what to expect and what’s expected of you.
You wrote that nothing can be worse than this waiting. Actually, I think there is something worse, and that’s waiting with the fearful uncertainty that comes from unasked and unanswered questions. I think you’ll find that when you get your questions answered and a plan for your treatment and progress, the fear moves into the background like a shadow moves away from light.
Mark Twain said that when he got up, the first thing he did was read the obituaries, and if he didn’t find himself there, he got dressed and went to work. It’s up to you, now, to get dressed and go to work. Your job is to get knowledgeable, to get treated, and to get better.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
You’ll be hooked up to a morphine pump, with a ” give me more ” button.
If need be, they can always give you a shot of Demerol or something extra.You are gonna be sore, no doubt for a few days.
So take the pain meds, ask for them…do not suffer.
It’s not worth it.In fact, the worst part is not eating for days, as your intestines have to heal, if you are getting an illeal neobladder reconstruction. It’s not the surgery pain, it;’s the tube in your nose removing anything in your stomach, like saliva.
They do not want anything getting into your intestines.
That was the worst part…although I did lose 37 pounds in about 10 days.
Not quite the best diet plan, but there’s a positive for you!Be extra nice to the nurses, you’ll need them to advocate for you a few times.
PS: They like chocolate.Carolyn,
Here’s a great big (((HUG))). And yes, it really sucks to have to choose between urinary diversions, but doing nothing or waiting too long with a stage 2 will only get worse. We’re here and we been where you are.
I had a neobladder done in Mayo’s Minnesota this past March. I was so freaked out that they were taking out my bladder and making a new one from my bowels – and even getting a robot involved. Blew my mind and scared me silly. I did it all on a rather quick time frame and still was stage 3 N0MX at RC. If I had to do it all over again….I would still RC/neobladder only I would have done it quicker
My surgery was 3.5 hours and done with DaVinci….I am the 1st successful female neobladder done with robotics out of Mayo’s. I have 100% daytime continence, and about 99% at night. Smirnoff Ice or Cosmopolitans can reduce that :) LOL I have never had to cath :) I thank God for that – I agree with Patricia here.
As a hospice nurse I am sure you have most compassionately cared for plenty of folks loosing their battle. No doubt those vivid memories are close at hand. Hard as it may be, you really need to keep your eye on winning your fight.And you can – stage 2 is pretty decent and doesn’t always require chemo if I understand it right. This, my friend, is doable :) In less than a year – you could be back to “normal” and living life quite nicely. Focus on winning :)
Hysterectomy is no picnic…I went into surgical menopause at 37 so I know. I couldn’t do HRT as I am a breast cancer survivor, but maybe you can. Instead of PMSing these days – I just get to be “haglike” as I like to call it :) Again – you will get past this too :)
I was told I was a candidate for a neo because my cancer was all in the dome – no where else. My other parts – ureters and urethra all looked good. They did bladder neck biopsies at the 2nd TUR to be sure. Odd as it was – post op they told me I had a 3rd ureter – have 2 on the right side. They hooked them both up to the neobladder! They also discovered I had a rare cancer – urachal (belly button) boring into my bladder. Glad I never considered sparing methods with all that happened with me.
I had a drain on my left side, a bag catching my 2 kidney stents on the right side, the incision down the middle, and a catheter between my legs. No other abdominal tubes – not sure if I was normal tho ??? Keep in mind they are all out in 3-4 weeks when all is healed up. They aren’t all forever.
Not sure what I can tell you that will be helpful, but you can ask me anything. I just want to encourage you to forge ahead and get that bladder out at stage 2. Mine was stage 3 with undetermined mets. Tomarrow I head back to Mayo’s for my 9 month check up…and I am focussing on winning too :)
God Bless, Holly
PS I may not be online again til Friday, but I will be back!I know it seems like you’re picking the best of the worst choices but those of us that have been through this kind of think our choices are great. Right now bladder sparring chemo and radiation is a really tough road to travel and then you may still
fail and have to have the surgery…read Cynthias corner on the main page…She was part of the trial at Mass General…its pretty grueling. I don’t know what makes a woman a good candidate for a neo….I was the same grade as you are and healthy otherwise and in great shape but nevertheless i still have a shorter urethra than a man. I was also told i was a good candidate for the neo. I did a ton of research on it and that was 5 yrs ago and success rates with women were somewhat dismal…i decided that if i had to cath i wasn’t going to do it where i couldn’t see where i was going and taking into consideration crummy bathrooms and i absolutely cannot stand a catheter in an area where there are other nerves if you know what i mean….so my pick was the Indiana Pouch with my stoma at my navel which is easy access and no nerves going into the pouch. It was a very tough decision and i agonized over it but now 5 yrs out i’m completely comfortable with it. My stomach is flat and looks perfectly normal as my stoma looks like a bellybutton…scars are gone…you wouldn’t have any idea i had surgery today.
Length of surgery depends solely on the physician…some have it down to 3 l/2 hrs …others take 5 to 9 hrs. Ask Dr. Koch. He really should be able to give you some success stories with women and the neobladder…someone you can talk to.
Holly had a very successful neobladder done by the DaVinci robot at Mayo. There are others who have had them on this site and the biggest problem seems to be hypercontinence.
I’ve never had an UTI with the Indiana…i also never reuse a catheter. I’m very fortunate in that my insurance covers all my supplies.
Read over the different types of diversions on the main page.
We’ve all been where you are right now…there is a light at the end of the tunnel….Pat
Thank you all for your kind words. I just cannot stop crying over the whole situation as I’m sure all of you did. It is just life changing. I worked as a hospice nurse and have put on the Relay for Life for the last 12 years and know that I’m lucky that I have a chance for a cure. But somehow it does not help me cope right now. Dr koch looked at the path report and feels it is stage 2 just inside the muscle. He said of cource we will know more after the lymph nodes are studied to see if it is a later stage. He thinks I wil be a good canidate for a neo. I asked him how may women he has done and he never really gave me a number except to say very few are good candidates. He quoted me a 90% success rate with some incontinence at night. He wants to try for a neo with a hysterectomy at the same time. The more I read the worse I feel about it.Not one doctor has wanted to try doing something to keep my bladder. My thoughts… they rarely do radial mastectomy anymore so this seems so severe. I know bladder cancer has a high return rate. What about infection? What if it doesn’t work? Would the pouch be better? It is like picking the best of the worse choices. Dr.Koch stated the majority of patients that come in are in much worse health and he does not recommend the neo but he thinks I will be a good canidate. If any women has had a neo bladder how long did the operation last and what was your experience like. Did you have to have supepubic cath also with the foley after surg? Nothing can be worse then this waiting.
Holly,
Happy Anniversay and many, many more! ;D
SallyHi Carolyn,
I think we all were pretty scared as we faced radical cysectomy and diversion. I was 42 and a newly wed just 11 months ago when I was diagnosed. I had the RC(radical cysectomy) and neobladder in March. Turned out I was stage 3 so I also did 4 rounds of chemo. It was not easy, but I got thru it just like you will.
I am glad that I did, too…..today my hubby and I celebrated our 1st annaversary :)
God Bless, Holly
Carolyn, the the pain, I assure you, is both finite and manageable. The apprehension, on the other hand, can keep you up at night for weeks and dominate your thoughts.
It’s interesting that once the pain is real, as opposed to anticipatory, it can be dealt with. I’m not going to tell you that I didn’t go through pain after my RC, because I certainly did. But I found that real pain–at least in my case–wasn’t as bad as the anticipatory pain I’d worried about. And I could handle it. It finally had a face and an actual sensation. When it finally appeared I knew it had limits and that I could tolerate it, deal with it, and beat it.
Charles M. Schulz, the creator of Peanuts, said “I have a new philosophy. I’m only going to dread one day at a time.” I laughed when I read it, but it’s actually pretty good advice.
By the way, the pain didn’t last nearly as long as I thought it would.
I’m going to leave the neobladder/Indiana pouch decision to you and your doctor, but I’ll echo what Patricia said–you’re in great hands at a terrific facility. If you have the chance to talk to some other women, as Pat suggested, I think many of your fears will be, if not put to rest, at least put into perspective.
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 SteinHi Carolyn…did you mean Dr. Koch at Indiana U?….He’s the main man there…invented the Indiana Pouch. Just wondering did you ask Dr. Koch how many neobladders he’s done on women? If so have him give you a contact list of his successes so you can talk with them. I understand why you want a neo…i think we all did but when you look at the stats its not always successful with women as we have a shorter urethra and its much more difficult to hook up. But if Dr. Koch has this surgery perfected go for it.
We have a section on the main page on different diversions…you might want to read that.
As far as the surgery and recovery…its highly individual. The first day the roughest but you’ll have a morphine pump to get you thru it and each day is a little better. They will have you up and walking by day 2 and will encourage you to do it on a regular basis as they want to wake up your bowels. With the neo or the indiana Pouch they take substantial intestine so you will not get any food until your bowels wake up and believe me you won’t care. You just have to put this in perspective…it gets better with each day and your strength will be debilitated for a while but it comes back. You’re in an excellent facility which is the main thing with this surgery.
Any other concerns or questions we’ll be happy to answer……….PatCarolyn,
You can start your own thread, go to new topic, then write your story, we will all answer you rather than having you on someone elses thread, its okay you did that , give us any important info, so we can help. theres quite a few here that went to Indiana U, if thats where your going,,Pat a senior member is the best to talk to you as she had hers at about your age , but she has an Indiana Pouch, did they offer that,,? STAGE 2, MUSCLE invasive, yes??. IT HELPS TO KNOW ALL THIS STUFF…..GingerCarolyn,
Yes nurses are sometimes there worst best friend. Can you give us some details on your situation, how it started, date , info on your path report.
The first five days are a little rough, but you have pain med’s as needed, and you will be walking the second day after surgery. You will be eating jello and liquids at first, maybe for 2 to 3 days,,,day 3 you will have real food, maybe, but a good chance, I realized being scared didn’t help anything,, of course my husband had the surgery, but guess what he said the worry was worse than the surgery, and he means that..they keep you very comfortable. What are you doing for a deversion??
pLEASE FILL US IN , WE ARE ALL FAMILY HERE, READY TO HELP YOU OUT!!!!GingerSign In to reply.
