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Hello Everyone I was diagonsed in July of this year with early stage bladder cancer. My Dr. has not told me of any numbers like you all use. I go back for my second look this month. I am a 49 year old male with alot of pride and no one to talk with. I am afraid and scare and don't know what to ask the dr. I feel like I am dying inside. Please help me.
Cancer Tylenol Surgery Pain Neobladder Incontinence Bladder cancer
Eudy, really sorry to have to meet you under these circumstances but I'm glad you found this group. If you were diagnosed in July you must certainly have undergone some test or procedures at this point. Maybe a little background on what's transpired since July would be helpful to those wanting to help. Have you consulted any other doctors for a second opinion? Bladder cancer, particularly early stage which you say describes yours, is highly treatable and many cases are cured completely. I'll answer any questions you may have to the best of my ability and wish you nothing but the best. Jon
Eudy,
There are a large number of people on this forum that have been where you are, have been every bit as scared, and did not know what to do or ask. I include myself in this group.
I am reposting a set of questions that may be of help:
You may already be past some of them. I am sure I found some of these questions online.
Treatment
• What treatment options do I have? What are the benefits of each treatment? What are the risks/side effects/negatives? How should I expect to feel during the treatment(s)? After? Will I have any physical limitations? Changes to my lifestyle?
o I want to do a side by side comparison. Do you have one or can you point me to one on the web or elsewhere?
o Chemo before or after surgery? If before, how quickly can I start?
o Are there different types of chemo? Is one best for my condition?
o What do you recommend? Why do you think this is the best treatment for me?
o What is the pain management plan? How much pain will I experience, and for how long?
o What is our plan to maintain my sexual function?
o What expectations should I have regarding incontinence?
Ongoing
• How often will I have to come for follow up appointments?
• What tests are there that will show if my cancer has come back?
• How likely is it that my cancer will come back or spread? What will happen if my cancer comes back or spread?
• How long will I need follow up? At what point can I consider myself cured?
• Will my diet need to be changed or modified? Will I need to take enzymes, vitamins, etc?
• How will my current lifestyle be changed? How will this affect my ability to work?
If you have questions that you would like to ask personally, please "friend" me and I will assist.
You are not alone, and will find this group to be a wonderful resource.
Rick
Eudy,
You want to ask the doc what grade and what stage your cancer is. Low grade cancers and cancers that have not invaded the bladder muscle are usually treated with immunotherpy. I would advise at this point you call your doc, get that information and based on what is it, decide if you want to get a second opinion. We will be here to answer your questions and help you through this.
Lynda
Eudy,
Welcome to Inspire. I think you have found just the place for you. There is so much information here. Be sure and click on the links in the box to the right particularly the one for the newly diagnosed. This help will help a lot.
When I first found out I had bladder cancer, I thought it was a death sentence. It is not but it does recur as much as 80 % of the time. You must always keep a watch on it and go for all your appointments. It is a treatable cancer particularly if it is low grade and non invasive which most of bladder cancer actually is.
I am also from NC, a couple hours west of you in Waynesville near Maggie Valley.
The best to you.
Nancy
Hi Eudy,
I too was diagnosed with early-stage non-invasive bladder cancer. In my case it was removed immediately and I've not needed any further treatment. I had six-monthly check-ups for the first two years, and am now on annual check-ups. However, every case is different, and it's important to gain as much information as you can. And I definitely relate to the fear of seeing my doctor again - every check-up brings up the fear of what he might tell me.
(I write this as someone who also doesn't have as much info about the others regarding numbers etc - however, if my tumour hadn't been removed, I would definitely want to know.)
The list of questions Rick has posted looks great, and I would just add that it's really helpful if you can take someone along with you - two sets of ears are much better than one, and the other person will take in things that you miss because you're anxious, or your mind has gone flitting off on some tangent because of something the doctor has said. If you can find the courage to ask someone to go with you, it would be valuable, and I'm sure it would bring you closer to the friend/family member you choose to ask.
Also, I'd encourage you not to be fearful of your doctor. If you find him/her intimidating, I'd encourage you to seek out a different doctor who you feel comfortable with and who you feel able to ask as many questions as you want to. Every question is valuable and should be listened to, even if it turns out that it's not relevant in your situation.
Take deep breaths and do nice things for yourself in the lead-up to your next consultation. Take things easy and treat yourself really well, in whatever form that takes: slacking off at work a bit, going for long walks, not pushing yourself so hard at the gym, watching some crap TV.
Do things you'd feel embarrassed about telling your friends! (Like watching some really lame DVD that you've secretly always wanted to see...) Treat yourself as you would a child who's ill, and give yourself a lot of pampering. You absolutely deserve it.
I've also found writing a journal really helps - just splurging out on paper all the things that are running through my mind, gets them out of my head, at least for a while.
Take care for now, Eudy, and I look forward to hearing how your visit to the doc goes.
Best wishes,
Nigel.
Eudy
You are in the right place. I will tell you what wise people told me when I was diagnosed 7 years ago.
1. Ask questions that matter to you to your doctor (s). Ask why this why that. Get knowledge of BC in all aspect. So that you can get a fair decision making process.
2. Do everything your doctors prescribe. Do not play doctor.
They are here to help you and they do.
3. Be a A+ patient. Humble and loving. Doctors will spend quality time with you. Find one that you like it help (But not required). Unfriendly doctor could be good too contrary to popular beliefs.
4. Be a great warrior have no fear.
5. Don't cross that bridge unless you have to.
6. If you don't it is time to trust in God. You can't walk thru this alone. Time to be real.
7. Count your blessings in life. Stay focused and positive.
8. if you get discouraged get some courage generating books, movies, friends or inner vision or something but DON'T waste your energy WHEN you need it the most to do what is required of you. Medical care take priority along with a good beer.
9. NO WHY ME. Not allowed according to the code of the warrior. This is just to destructive. OUT.
10. Have fun when not doing care. A must.
A note I is normal to react and be disoriented at first. I was so.
but for you it is an early detection. You will be alright.
Be well
EricAndre
Rick laid out a great list of questions to ask your Doc but here are two links that you might wanna view. Also I know you are scared no one wants to hear they have BC or any cancer for that matter, but be thankful they caught yours at an early stage. when I got diagnosed I was between a Stage 2 and 3 and my bladder needed to come out so I had no choice. GL, CrazYhorse
http://blcwebcafe.org
www.oncolink.com
Eudy -
My husband (who is 42) got diagnosed with muscle invasive bladder cancer in June. He just got his bladder removed 3 weeks ago. YES...we were shocked and scared to death.....he is a very healthly 42 year old and we went through all the emotions....how could this be happening to us. The doctors said if you want to live...your bladder has to come out. So there was not a lot to think about. We were just thankful it was in a place where they could take it out and build a new bladder. You found a great website.....these are people that are going through the same thing and can help you. Any questions...please ask. Good luck.
Stacey and David
Eudy,
I am so sorry for your fear, I believe we can all empathize. I am so gald you found us. The posts above have really said it all. I will pray for your Peace and for good news at your next check-up. Remember, knowledge is power! also, the fear of the unknown is sometimes worse than actually knowing. Please stay in touch and let us know how your follow up goes.
God Bless,
Stacy
Eudy, I felt the same way when I first got diagnosed. You are not alone. Read what all have told you..... keep us posted. many hugs
Eudy:
Sorry to meet under these circumstances - but glad you found a safe place to land. I remember when I was first diagnosed - several years ago - I wish I had known about this group!
All of the advice above is great - not much more to add except emphasize the importance of getting copies of all records. Many of the folks online are very knowledgeable but we need to know your specific situation to provide guidance.
Keep posting and we will help you each step of the way. You're not alone. I'll be praying for peace and great outcomes. You can beat this - Veronica
Eudy,
Now that you are here you will never have to face the beast alone again. You're now part of the army. Individually we all have fear but together we are fearless. We refuse to let bladder cancer define us.
Ask your doc everything that comes into your mind starting with the questions posted above. Keep copies of the records of all your treatments and pathology reports it gets confusing after a while. Stay positive, stay strong , stay relentless. You're going to do whatever it takes and you're going to beat it down.
Along with all of the above, we are just a phone call aways, always helps to hear someone on the other end, my husband lost his bladder at 66,,,,,he is good, he was stage 3,,, no chance for early stages,, the diagnosis is overwhelming I know, but....your life will remain as long as emotionally you can recover with our help,and keep things on a even keel,,,,we do everything we did before surgery,,you will not be loosing your bladder at the stage you are, if not muscle invasive,,,so welcome to our family,,,,
Ginger
Under your circumstances where you ahve not been told much, I would strongly urge a second opinion. Perhaps after this next cysto. You should be having cystos every 3 months, and removal of any tumor at a surgery. Pathology reports should be generated to measure the tumors risk, and dictate follow up care/
If you have invasive disease then you will want to see a urological oncologist to determine best course. I would want to see one anyway given the lack of information you are receiving.
The way to survive cancer is to know its characteristics, treatment options and to put your self in the most skilled hands.
All of us here have cancer, and many of us got second opinions which dramatically changed our care and outlook
Nancyn
Welcome, I am also newly diagnosed (Sept) like you. All good advice above. If you don't have someone to go with you to the doc appt., take a tape recorder. That way you can listen to it when you want and refer back to it if you need to. Also, I've found knowledge empowering. Other sites with good info are the American Cancer Society, National Institute of Health, Mayo Clinic.
This group has been a god-send for me. Just having a place to find info, vent, share hopes and fears, etc. with like-minded people is a relief.
Eudy,
Yes, fear is a BIG factor, especially at the beginning, which is where I still am. But you WILL get through this because you have reached out to this group and this group is an AMAZING bunch of people and we will help you every step of the way.
Please come and share your experiences and what your uro says and how you are feeling and vent when you need to and we will be here for you. I know because everyone has been here for me since last August, and this group won't let you down. -Jan
I too was recently diagnosed. I found out that I had Grade 2, non-invasive in April. My urologist did a TURB, which is a fancy name for cutting out and doing a laser type treatment around the area along with a biopsy. I had 2 different opinions on treatment after that. One urologist wanted to go straight to BCG treatments and another (at Dana Farber) wanted to just follow up every 3 months with a scope. I think every doctor has their opinion on how to handle this, but I think the important thing is to know exactly what Grade it is and be very vigilent with follow ups.
As for the emotional mess that happens, I can only say that it does get a little easier. It's a complete shock in the beginning, then you're up and down. Don't let it completely consume you. Easier said than done.
Having said that, I think it would be good to get your test results from your doctor and get a second opinion, possibly at a major cancer center. This may re-confirm what your other doc said, or it may make you leave him completely. Either way, you have some control over what's going on.
Wishing you all the best.
Eudy,
It is very upsetting to read your post. I wish we could do a group hug and relieve some of your fear and despair! You can no longer say you have no one to talk with, because you have all of us. And sometimes it is hard to shut us up when we do get going!
I had one-third of my bladder removed 15 years ago. My tumor was into the muscle and I was only 40 years old. I have had no post-op treatments and no recurrences or surgeries. (Of course, cystoscopy and cytology check-ups don't count!)
The only thing I wanted to add is that if your doctor is reluctant or too busy to answer your questions, you may want to consider another doctor. And the all-important SECOND OPINION from a specialist.
Feel free to post any questions or just vent if you need to. That's what we are here for!
Eudy, I live in Concord and had my Neo Bladder surgery at University in Charlotte a year ago. I would be glad to talk to you and answer any questions you may have.Who is your Uro?I would get a second opinion and save the bladder if possible.
Hi: I started down this road on January 21, 09. See my journal, it is about number 30 i the list you see when you tab on journals: "treating urethial papillary carcinoma..." Mine is low grade Ta, I have had 4 resections, and two series of BCG, and it keeps coming back--but has not progressed into muscle invasive. I start a new 6 week treatment series with Valstar on Nov. 9 because the BCG failed to stop the regrowth. My Dr. is conservative and wants to save my bladder, and that is what we are trying, but I know I would rather have it removed than be dead! I know what you mean about scared: you think your insides are being eaten up. Every twinge is scary. However, take a tylenol and manage the pain! Take walks, go shopping, do somethings to take your mind off the big problem. Keep all your appointments and pray for the best.
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