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Hi my name is Terry , and I’m new to the site. I have Bladder Cancer , and been through 8 rounds of chemo.Pre and post turbs. Need one last CT-scan still to come.I Thought I had made my decision, on a neo-badder and now I seem to be second guessing myself.I have looked at the options and post-op info.I guess my brave face through all this so far is now turn a little chicken !!!!!!. On Feb.19 I have my final surgical consult, family will be there.
Hi Greg Neely we last spoke on the phone early Jan.Posted By Zina
Hi Terry. Welcome to this site, although I am sorry for the circumstances. Your post will most likely be moved to start its own thread. You will find lots of information from our members, because chances are that regardless of your situation, someone here has been through it. Which decision are you are second guessing – I assume it is the type of diversion you will get after your bladder is removed? Do you need more information on the various types of diversions? We can offer you details on what it is like to live with each type. What I will also say is that regardless of the type of diversion, you will adjust to it, and over time, life will return to almost normal. The key thing to keep in mind is that your goal is to beat the cancer, even if you have to make some lifestyle adjustments to do it. Please let us know how we can help. That’s what we are here for.Hi again Terry. Each of the types of diversions has its own positives and negatives and there is no single “best” way for everyone. There are three most commonly performed diversions, the ileal conduit (external pouch), Indiana Pouch (internal pouch) and neobladder (internal newly constructed bladder).
As I see it (I have the neo), the ileal conduit demands bags, the IP demands catheters and the neo demands pads or diapers (at least for awhile). All work well in eliminating urine. The neo and IP surgeries take longer and are more involved, but eliminate the ned for the external appliance. However, the external appliance is not even visible under clothing and many who have it swim and live life to the full just the same. So also with the others.
The doctor will have a preference for you in all likelihood, based on your medical history. But you have to live with the results.
I can tell you that of all the people I have spoken with who have one or another of these diversions, everyone is content with what they have. You make the best of it and adjust accordingly just as Zina mentioned. She and I have different diversion types and our chairman has a different one again and we are all content. None is perfect. None is the same as it was. None is a choice you wish you had to make. But rest assured, whatever you and your uro choose in your case, you’ll get rid of the cancer and learn to live a “new normal” with your new diversion.
Being brave does not mean not being a little terrified. It means being terrified and moving ahead with what needs to be done anyway. Even chickens can be brave – I know, i am one.
GregHi Greg, and, Zina thankyou I guess this just part of the hole process.
Like everyone else I’m just tring to find that place were life is as normal
as it once was.My family and friends ask how they can help, so I’m
getting them to come to the website.I feel they to must become more
Knowledgeable .My hope is that they will join the site and share their
concerns and fears as well.You are right the goal is CURE, and I will
ajust.Terry, I had this very same decision to make several months ago. After much research, deliberations and my doctor advising that I was a candidate for a neo, I choose to go with a new neo-bladder. I’m still fairly young and the results of having a neo seemed to be the type of diversion closest to normal, i.e. most likely no external appliances required, urinate through your urethra (same as before). I’m 3 ½ months post surgery and so far I am very happy with my decision.
Whatever type of diversion you choose, you will learn to make it work for you and you will adjust to your new life. Good luck with your decision!
Glenn
Thanks Glenn
I’m 57 which l hope is not considered old . I’m thinking
Aslo that the Neo option is the best!. To live as normal as possible is
very important. Did you have many complications, how were the post-op
Ajustments.Did you have any chemoTerry: I think everyone has some complications ranging from constipation, pain, infection, incontinence, fatigue, lack of appetite, drastic weight loss, hernias, incisions that don’t heal well, ED, etc. Few get them all, but most get some, it seems. I had infection, constipation, fatigue, incontinence, ED, weight loss, lack of appetite. But one thing I do not have: cancer! The recovery was challenging, without a doubt. Some do better than others more quickly. Others have lingering effects. And long term there are body image concerns and quality of life concerns as well as recurrence concerns. Cancer is multi-faceted disease and can affect a lot more than the physical changes. But life gets back to a new normal and can be wonderful. Mine is two years, 2 months and one week after surgery!!
GregTerry, in my books being in your 50’s is still young – “Old enough to know better and young enough to keep trying”.
I decided to have chemo (after listening to the advice from my doctor) before surgery (neoadjuvant chemo). The type of chemotherapy treatment I had for my bladder cancer is called “MVAC”. It’s a pretty strong mix of chemicals I received in 4 cycles over a three month period. It can have side effects and the accumulative effect, at least in my case, really hit me hard, i.e. tiredness, fatigue, nausea, etc. Each person’s reaction is different. They say some people experience few side effects while others experience more. Information on chemotherapy treatment can easily be researched on the internet for those that are interested.
Greg lists many of the possible complications above. I experienced constipation, incontinence, weight loss and fatigue. Anyone undergoing these type of operations should be prepared for the possibility of having some complications, again each person is effected differently. Each aspect of treatment may have different complications, chemo, type of diversion and even surgery itself, some complications more serious than others. Unfortunately I experienced more serious complications as a result of the neoadjuvant chemo and surgery, pulmonary embolism and deep vein thrombosis, the latter of which I am currently being treated for. Anyone going through bladder cancer treatment should speak to their specialists about possible complications and make their own decisions.
Post operation adjustments depend on the type of diversion chosen, length of your stay in hospital and resulting complications. For me so far, adjusting post-op has come in stages;
Hospital stay – mine was for 3 weeks, I experienced surgical incision dehiscence (separation) and had to undergo a second surgery, lots of new tubes and bags to deal with, it was a pretty rough time overall, nursing staff was great.
First 6 weeks at home – follow up doctor visits, tubes and bags come off, regular home visits by nurse, constipation still a problem, lots of short walks about, lots of kegel exercises, started gaining strength.
After a few months – feel great, eating normally, walking about 3-5 klm a day, still dealing with some fatigue and incontinence (dry days, wet nights!). Overall life is returning to close to normal.
I’m looking forward to my follow up CT Scan which is coming up soon and anticipate positive results!
Glenn
I’v finished chemo, and had my post chemo biopsys.The cancer has not
spend, but has not responded as well as was hoped.My cancer is high
grade.Chemo finished end of January, Decided on Neo-bladder but
RC isn’t untill the end of April 25. This seems to far out after chemo.
What is the time frame, for surgery after chemo.I feel this probably isn’t
good.Atl this piont in time l feel great, l’m working out in the gym, and
It’s hard to believe l have cancer.Becauce the surgery is so far out l would like to go back to work, and Not think about this to muchHi Terry, I can certainly understand why you want the surgery sooner rather than later. I couldn’t stand the though of the cancer being inside me one second longer than necessary. It is my understanding that waiting 2 months is not unusual from the end of chemo to the RC date. In fact, that is exactly how long I had between my chemo and RC. The chemo takes quite a toll on the body and even though it sounds like you feel well, I think its not a bad idea to get even stronger before the RC. The recovery from the RC can be very slow and frustrating, so think of this as your time to enjoy yourself before the hard work begins. If are really anxious about the wait time, have a talk with your doctor.
I’m back to work today.This is good thing, l have something else to
think about for awhile! Zina thankyou, there is so much info out there
It’s difficult to know the truth sometimes.I feel good , l work out at the
gym five days a week.I sometimes can’t believe l have cancer. My
goal is tobe as healthy as l can before my RC.Maybe this is the best
thing for me, l guess it just gives me a better chanceTerry, even though I haven’t had to have my bladder removed I just want to wish you well in your upcoming surgery. Don’t hesitate to stay in touch. The folks here that have been down the road you’re on will be able to give you lots of really good advice. Take care.
Hello Terry,
So sorry to hear why you found us.
People like Zina & Greg will be able to give you advice from the point of view of people who’ve already been there.
I think getting healthy for your RC is a great goal.
Come back here and tell us how you are feeling, how you are progressing and we’ll give you whatever support we can.
Best of luck on the operation!
(PS I went to university at Waterloo, I have very fond memories of that beautiful area.)Well my rc will be april 18. Only 11 weeks after chemo. I’m now at the acceptance
Stage, that my new normal will be different.Health wise all is farely good.However
I sence my high grade cancer is now on the march.I have not had much pain, or ill feelings until this past week.It’s a fuzzy, tingly kind of tired feeling with a very sore lower back.Yet there are days l feel l could run a 25k marathon. I still weight train
and kick box for cardio and work fulltime.Over the past 9 months l use this to help
stay my course REACH FOR FAITH, BELIEVE IN HOPE and KNOW YOUR LOVEDTerry:
I’d advise the doc of the sore lower back. Could be a lot of different things, but might be worth calling the office and advising them. Sometimes if the bladder is not emptying there can be reflux back into the kidneys and that can cause a sore back.Does the fuzzy feeling always happen after your cat has sat on your shoulder? Cat hair up your nose will cause a fuzzy feeling (OK, bad humour!).
All the best on the 18th. Did you and your surgeon decide on a diversion? Just remember that the early days after surgery are challenging, but don’t get discouraged. Take advantage of the community nurses who come to your home (or should) and keep in touch with us. Walk lots and eat little bits at a time in the early days. Ensure your “constitution” is functioning properly and stay on top of that (bowels). Keep an eye out for infection (chills, fever, pain) and get treated if it happens (it is quite common, it seems). Pamper yourself, but be diligent about getting up and dressed and doing something every day. That will help physically and mentally even if it is a walk to the end of the driveway and back.
Greg
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