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Hi. My name is Ken. I am 53. I am in excellent health. I have never smoked. I have never worked with toxic chemicals. I was a heavy drinker but I gave that up completely 4 years ago. I walk with my dog every day for over an hour and I lift weights several times per week.
At my physical in February I had white and red blood cells in my urine (I have never seen a drop to this day or had any pain what so ever). My GP had me get an ultrasound. They found a spot on my bladder. That led to a cystoscopy a couple of weeks ago in which 2 tumors were found. The Urologist said he thought one was about the size of a golf ball and one was the size of a marble.
I am scheduled to have them removed on July 23rd. I am getting a general anesthetic for the procedure.
I have read, and I think the urologist confirmed, that it is 90% likely that it is cancer.
I have many questions.
Was this caught early? I want to believe it has been as I had no visible blood in my urine and still don’t. I notice that the Bladder Cancer Walk advertisement on TV says something about seeing red and needing to see your doctor.
Is there anything to be learned about the golf ball size of the tumour? Is there anything to be learned about there being another small tumour?
What will the next procedure be like? How long will it take to shake off the general? How long will it hurt to urinate? How much will it hurt?
What kind of cancer do I have? Is it aggressive? Do I have to wait for the pathology to understand what I have?
Any help will be greatly appreciated.
Hi Ken:
Welcome to Bladder Cancer Canada, the site that nobody wishes they had to belong to.
You’ve asked some very valid and important questions. I will try to answer them for you. Firstly, as for the causes of bladder cancer as mentioned the most common are smoking and chemical exposure but some people get it without knowing the real reason why. There is research being done into all kinds of areas – genetics, possible exposure to second hand smoke, the person’s body ability to eliminate toxins just to name a few. Dr Eric Hydman, one of the urologists here in Calgary is leading the charge on a lot of this study.
As for knowing whether it was caught early and to confirm if it is indeed cancer that will be answered when the pathology results come back after your surgery. That process takes 1-2 weeks. The waiting is hard but you can breathe a bit at that point knowing that the cancer is out or at the very least slowed down for the time being assuming that it is cancer. You are correct in that the majority of bladder tumours are malignant. Tumours vary in size, type and shape. The most common is urolethial carcinoma which looks like little pieces of pink coral or cauliflower when you see them on the screen. The second most common are flat lesions called carcinoma insitu. It is not unusual to have a mix of the two types. I did.
Any followup treatments/procedures/tests etc. will be decided once your uro has the pathology results back. The best diagnosis a bladder cancer patient can hear is “low grade, non-muscle invasive” meaning that it was caught early and it a slow growing less aggressive type of cancer. The more advanced stage is referred to as muscle invasive meaning that it has invaded into the muscle wall of the bladder and obviously is much more serious. It will be the upcoming surgery that will determine this important part. The fancy medical term for this surgery is TURBT or Trans-urethral resection of bladder tumour.
As for the TURBT surgery, as mentioned you will be given a general anesetic and be totally asleep for the whole thing. While asleep you will be positioned in stirrups and the uro will insert a scope similar to the cysto that has a little metal loop for cutting and cauterizing the tumours out. Your bladder will be filled with a sterile solution during this procedure much like during a cysto. If you have been given a general you won’t feel anything or know what is happening. When done you will be moved to a recovery room and when you wake up you will most likely have an IV in your arm or hand and a catheter in your urethra. The catheter will be left in for a few hours or up to a few days depending on your situation. They will advise you at that time. If you are at the Rockyview like I was, when ready they will transport you back to Day Surgery where you will remain for several hours for observation or even overnight depending on what your doctor has ordered. It would be a good idea to find this out ahead of time. The surgery can take 1-2 hours or a bit longer depending on what they have to do but it is usually a very straight forward procedure. If ordered, after a time the nurse will remove the catheter and then you will have to start drinking like a fish – water and clear fluids that is, and be able to go well before they will release you. In some cases a patient is sent home with a catheter in and asked to return a few days later to have it removed. You will have to ask ahead of time to find out what is the plan for you. This part may not be decided until after your surgery.
As for how long the anesetic will take to wear off,it will depend. I’ve had several surgeries – not all bladder related and have found that I wake up, am alert for a bit, then I go back to sleep for a awhile and when I wake up the second time I’m definitely more myself. Some people are nauseous or have headaches. The nurse can help you with that if it happens. Unfortunately if this is your first time getting a general you won’t know how it will go until you do it. You will need assistance getting home regardless after surgery. They won’t let you go unless you have another adult with you just to make sure that you will be okay. You will be helped up and starting to take short walks as soon as you are reasonably coherent. It might hurt a little in the beginning but it does feel good to finally sit up and move around.
AS for the anesetic procedure, the anesetic dr will come before the surgery to see you, usually when you are on the gurney in the hallway and ask when you last ate, drank and look into your mouth and ask what teeth are real, false etc. He does this because they will insert an airway tube into your mouth while you are asleep and needs to be aware of what has happened to your mouth. You will be given a drug via the IV and/or oxygen mask to knock you out before the airway tube goes in so you won’t feel that part. The tube is removed before they start to bring you out of the anesetic. If you are really freaky at this time don’t hesitate to tell them. They are really good.
While you have the catheter in you will see blood in your urine. The important thing that I learned here was the clarity of the urine. In my case my urine was pink – obviously had blood in it but was very clear which according to the nurse is a good sign meaning that you’re not bleeding too much and won’t have too much of an issue with clots that can affect your ability to pee. They will be watching this closely and advise you at that time. As soon as you are able, start drinking lots of water or clear fluids – this dilutes the urine and helps heal the bladder faster. You will most likely want to eat lightly for the first few hours after surgery. Also, don’t let yourself get constipated as this will really hurt. Take laxatives if needed. The bowels are often slow after an anesetic. It may take a day or two to have a complete movement. I will continue this in a second post.
Hi Ken, continued post here from Susan…
As for recovery it will take 2-6 weeks. You will have some blood in your urine and maybe a few clots here and there. As mentioned, drinking lots of water and taking short walks as soon as you are able is key to faster healing. Don’t do any heavy lifting, house cleaning either. The wounds in the bladder are open wounds and take time to heal over.
If you are working, the date to go back will depend on how you are feeling and the type of work that you do. Obviously if you have a physical job you will need to take more time off or change over to less strenuous activities for a bit. Same for sex if you are in a relationship – ask your doctor’s advice first.
You may feel tired for a little while after. Rest as needed and don’t attempt too much. You will be given followup instructions before leaving the hospital. If the bleeding increases drink more water and rest more, it’s usually a sign that you’re doing too much too soon but of course check with your doctor on this one.
As a last thing check under our link for important reading – we have information the there about bladder cancer. You can download it for free. We also have new patient booklets out that I can forward to you if you are interested.
Lastly, here in Calgary – I cofacilitate a support group. We will be restarting meetings on Wednesday September 9th.
If you are interested in talking to me or Ben my cofounder let us know and we’ll be in touch. I hope that I’ve answered your questions. Take care and let us know how it goes. (((((HUGS))))))
Hi ..
I have just joined BCCan and I am new to the forum.
I am from Ottawa. Thank-you MarySue, for the information on what I am to expect with the TURBT and the hospital stay.
Thanks for the information, help and advice.
DDep
Hi DDep,
The restless sleep and constant thought in the back of my mind was unsettling for me as well. That unknown was definitely the hard part. I feel for you my friend.
I was initially showing signs in February of 2013. After some antibiotic cycles (3 in total) they figured out something else was wrong. I had an ultrasound in late April that shows a little “stowaway”, as I like to call it. It was just under 3 cm in size and was just over one of my ureters channels (openings into the bladder). After going through pretty much all that MarySue covered in June (two days after my 40th birthday), two weeks later I received my pathology. It came back as low grade Ta stage. Other than the single installation of mitomycin C right after my surgery I have been all clear for 2 years. Next follow up is in 6 days.
Just like yours, mine looked like pink cauliflower or as I called it “my coral reef” (aka stowaway). I too did not have a stalk but not all tumors are the same as you know. The pathology report will cover it all.
I hope this helps in some way. The wonderful people on this forum have all experienced varied versions of BC. No matter the case, you have found a great place for information, support and understanding!
Ed
Thanks Ed.
Good luck on your follow-up.
Thanks for the information – I am grateful to share experiences.
Good to hear that an approx. 3cm tumor could be Ta low grade. Like yours, my Urologist had to “look under” the tumor to see a healthy ureter (from kidney). It was then that he mentioned that he could not find the “stalk”.
Can you give me any more thoughts on time for recovery from the TURBT?
How did you deal with the worry and all those emotions?
Gratefully,
DDep.
My pleasure DDep,
In my case I was unable to workout at the gym (I am an active guy) for one month due to the wound being an open one within the interior of the bladder. So it was a great excuse to take it easy (not something I’m good at). I experienced very little issues post surgery other than a tiny amount of bleeding and a clot or two when I urinated with a burning sensation, but that cleared up after a few days. I would say that the one thing that I found an issue was the Percocets they gave for pain made me feel sick (and if I’m to be frank…a little gassy). I didn’t even need them because I had next to no pain over all, even in the first few days.
The emotional from my standpoint was something I looked at as a means of expanding my abilities and views. I’m a worrier by nature and all I found helpful was looking at the whole new experience as a journey of self discovery and knowledge. I learned as much as I could about BC, what was involved, experiences of others and the wonderful doctors, nurses and staff at the hospital. That was my outlet, plus doing things I loved to do.
Wish I could give you a great way of handling it, but it basically comes down to time, perseverance and enjoying the things you like.
Ed
Hi DDep:
Welcome to Bladder Cancer Canada, the site that noone wishes they had to belong to but that being said we all are here to guide and support each other.
As for recovery time from a TURBT it varies from person to person but most find 2-4 weeks. Docs generally advise no heavy lifting or heavy house or yard work for at least a month. If you have a desk job you may find that you can return to work quite soon after. I strongly suggest that you consult with your doctor on this one.
I had several tumours the first time. I wasn’t working then but had to take it easy for about a month. The second time was a single tumour and was working part time retail then. I took three weeks off and I worked reduced hours for the first two weeks back and then was able to ramp it up a bit.
To cope with all the uncertainty and stress I just found keeping busy worked. I also took time to do things that I enjoy – hobbies etc. While waiting for the test results of the first TURBT I went out of town for a quick trip just to get away and take my mind off it for a bit. I relaxed by Lake Okanogan in BC and the sunshine and water was great.
I also used the time to learn about bladder cancer, alternative medicine, alternative living beliefs and just generally did a lot of soul searching about who I was and how I got to the place I was at. I learned to forgive, let go of a lot of stuff, set new personal boundaries. It was a journey that is still on-going today. I feel that I’ve become a new and better, stronger person. I wish that I could have learned what I have without doing cancer but it is what it is.
When I was doing a surgery or BCG treatments I treated myself to something small as a reward for getting through another stage of the journey. I’m down to annual cystos now and still take that as a “me” day and do something special for myself to celebrate another year of cancer free.
It is normal to have what is often referred to as the “roller coaster of emotions”. The journey often has a lot of ups and downs and it takes time to get to that place of acceptance that life has dealt you these cards and you have to learn how to play the hand you’ve got.
Stay with us my friend, we will help you along the way.
Hi Ken and DDEP
Sorry you both could have bladder cancer, only the pathology report will give the definite answer. I recommend you both get a copy of the report from your Urologist. Marysue and Ed have answered many of your questions so I will not repeat.
I was diagnosed in 2005 with 1 5cm tumor and 2 small Tumors. My stage was 0 or just on the wall of the bladder and my grades were 1 and 11. The staging system back then was low, med and high. So I was low to med. Because of the size of the one tumor, plus having multiple tumors, my Uro recommended BCG treatments. I did have 2 very small recurrences during treatments, but I have been all clear since 2007 and only have to have a cysto once per year.
I live a very normal life and am more concerned with the state of my golf game than bladder cancer.(lol)
As for the stress we all go through is normal, because of the unknown, which in both your cases is the stage you are both at. I really have no recommendations for reducing the stress and worrying. I still worry every year at cysto time and I have been all clear for 8 years.
I wish you both all the best going forward and please keep us posted on your journey. We are very good listeners and in many cases can share our experiences which could be similar to yours.
Best regards,
JackHi DDep:
Some uros automatically prescribe antibiotics with a cysto (my first one did) as a preventative but many do not now (my second doesn’t) due to the way our bodies and bugs build up resistance to the antibiotics. However that being said it is something I suggest you bring up with your uro for next time. I take cranberry pills every day – the more expensive ones with D Mannose in it and drink cranberry juice several days before and after a cysto plus a ton of water. I’ve had mild infections a couple of times but managed to thwart it with the cranberry.
As for the hematuria, you may have had it before but it wasn’t visible and maybe there wasn’t any as mentioned at your physical. I’ve had BC twice and had gross hematuria both times.
AS mentioned this is the toughest part waiting for the TURBT and then the results. I too, had the shock of my life when I peed blood the first time. Being female I obviously sit to pee and it was when I turned to flush that I saw the blood. I just froze. I thought at first it was the benign cyst in my left kidney that may have gone AWOL but I soon found out otherwise. Hang in there, we’re sending positive vibes your way for a good outcome “low grade-non invasive”
Hi Ken & DDep,
Sorry to hear you may have BC however as Jack already mentioned, the path reports will be more definitive.
I was diagnosed June 2012 and after 2 recurrences/20 BCG treatments over a period of 12 months, I have been cancer free for 2 years. I was on 3 month cysto follow-up until my last in April and I’m now on 6 month. I will be on Bladder Cancer Watch for the rest of my life. Better it it be caught early I say…
The word cancer scared the living daylights out of me…I became very withdrawn and every ache and pain was probably another cancer somewhere for me to worry about…you have probably experienced/are experiencing the same. I was in a mess and in a real bad place for a short time…BCC really helped me through most of it. There is no one way to deal with the stress this brings on. Typically, we each find an inner strength to accept what we have and importantly find a way to live each day. As Marysue mentioned, waiting for the results and the time til next Uro visit, etc. is the toughest part.
If you are dealing with BC, then you should gain confidence in the fact that the survival rate is high and that we have some of the greatest medical facilitates available to us to help deal with it. My Uro has really been a great help with spending time explaining my situation, providing options, etc. Most important, he is thorough, was quick getting me to surgery (TURBT) and had a plan to deal with it.
Last but certainly not least, you have BCC to lean on and ask, ask, ask…the people on this site have gone through or are going through what you are right now.
I wish you both the very best outcome…please keep us in the loop…stay in touch.
Rick
A lot of mental stress can affect the body physically. Those aches and pains are most likely related to that. Once you get the diagnosis and know what you are dealing with then that should improve some.
As a side note, for me prior to my last cysto this past March, I started having episodes of loss of bladder control. I was thinking that just maybe BC was coming back to haunt me for a third time. However, the exam was clear (Thank God) and when I mentioned it to my uro he immediately asked me what was going on in my life. I told him of all the stress I was under at the time and he told me that was most likely the culprit so I knew then I had to do something to lessen my stress level which I did and I’ve been 95% fine since with only a couple of minor accidents. Tena and Poise pads have become a new BFF that I now wear if I’m going out for a very long time. I also get a lot of leg and back muscle ache when upset and stressed. For me I take a couple of extra strength Tylenol which relaxes the muscles and I’ve found I can sleep better too. I only do this when I really need it though.
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