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August 18, 2016 at 4:23 pm #8415Liz WebbParticipant
Hi my name is Liz, this is so new, I have only know for 3 days… After 29 agonizing days I finally received my diagnosis of aggressive bladder cancer. So I am told next step is to have a second scope to determine if the cancer remained surface. I am hoping this group can provide, information and support
August 18, 2016 at 8:46 pm #20891Jack MoonKeymasterHi Liz
Welcome to the group no one wants to have to join. We are all here for you, answer any question you may have, share our experiences and have some fun at times. It important that you get a copy of your pathology report, which will indicate, the type of bladder cancer, stage, and grade. It is extremely helpful in researching your diagnosis. When diagnosed with high grade bladder cancer it is normal practice these days to have a 2nd Turbt to insure all the tumors were removed, and insure their is muscle in the biopsies taken. Once this is complete then a treatment plan can be developed by your Urologist.
Be careful what you read on the internet, alot of false information, and alot of information that does not apply to your diagnosis. Major Cancer hospitals have great information regarding bladder cancer. On our home page read the articles “facing bladder cancer” and download the booklet regarding Non-Muscle Invasive Bladder Cancer.
Like I said we are here for you, personally I have been cancer free since 2007 after being diagnosed in 2005. Still get checked once a year due to the high recurrence rate of bladder cancer. Stay positive and be proactive.
All the best,
JackAugust 18, 2016 at 10:37 pm #20894Nick01ParticipantHi Liz
That is the procedure I’m into my third surgery for the year . After the 1st It was determined I had a high grade tumor my Dr. went in to take a 2nd look 2 weeks later
after biopsy report negative did not touch the muscle did 6 weeks of BCG . 2 months later did a cystoscopy tumor was again present BCG did not work.
Now waiting for my third biopsy report if it touched the muscle must remove bladder
for a neobladder. Stay positive I’m new to this forum the people here give great support remember your not alone.Nick
August 19, 2016 at 4:06 pm #20895DDepParticipantHello Liz
I am sorry to hear that you have been diagnosed with Bladder Cancer.
It is fortunate that you have reached out and joined this forum. Many of us have found this site very helpful.It was a little over one year ago that I found myself in a very similar situation that you are right now.
Like many of us who were just told the news, we feel stress, worry, fear of the unknown, sadness, confusion … all these things.
It is a very difficult time. I found the most difficult period to endure was the time between being first told, up to the time a treatment plan was decided and implemented. Not knowing what I definitely had, or what lay before me, really wore me down. It is a time-period, unfortunately, all of us had to go through. You are not alone or unique in this.As stated by Jack Moon, your Pathology reports are most important and you should get and keep copies of those reports. Bladder Cancer treatment in particular, can be long process. It would be good to have records of your pathology and thence treatment.
It is a difficult time … I know. But it does get better when you get a better idea of your treatment. Bladder Cancer is highly treatable as many on this forum can attest.
Here are some things I found useful to help me cope during the worst of times:
1) Unless you have some formal education in Medicine, Micro-biology, Pharmacology, Organic Chemistry etc. : Do not spend a lot of time doing internet searches to understand your situation. It only leads to more questions, more confusion and in turn, more stress.
2) Talk to family, friends, be open about how you feel – I found just talking about it got it off my chest and was stress relieving.
3) Do your favourite hobbies and/or work where you can quickly finish something. It takes the mind away from “racing” and gives a gratifying sense of accomplishment.
4) Take long walks with a loved one … and talk
5) Watch some good, light-hearted, easy to laugh-at, comedy movies
6) Don’t hold back the tears if you need to cry
7) If you find yourself unable to sleep or cope … see your family doctor. During this difficult time of “not knowing”, I had to take some pills to help me sleep at night
8) If you smoke – STOP SMOKING !Finally, hey, and just to help out on the “lingo”: When some of us say “scope” we take that to mean a Cystoscopy. Cystoscopy is what the Urologist does with a cysto-“scope” to actually look into a bladder to see what is going on.
A TransUrethral Resection for Baldder Tumor (commonly called TURBT) is what is usually done in a Hospital to remove the Tumor and send it to Pathology. Pathology then looks at the very small cells of the Tumor to determine what type of Tumor it is.Taking an educated guess, I think you probably had a Cystoscopy, thence a TURBT and now have been told your Pathology result.
Many of us have had a second, follow-up TURBT just to be sure. When I asked my Urologist why I was getting a second TURBT, he said, “It is standard practice now”. It sounds like you are getting that second TURBT just to confirm what they found on the first one.I had my second TURBT on August 25 – as I said, about one year ago.
Life is worth living and it does get better.
Praying for all the best.
DDep
P.S. I just read your other post on “Wait times”. Forgive me if I wrote anything here repetitious or that you were already aware of.
August 22, 2016 at 5:39 pm #20897Farm-BoyParticipantHi Liz,
Both Jack and DDep have good advice already.
Surfing the internet simply created more and more worry when I was first diagnosed 3 years ago. I started looking at “meat charts” with percentages and thinking the worst, but reality is until you have all of the information, this website and the advice of very experienced people is some of the best intelligence out there.
I slowed down a little before my surgery and I spent a couple days with each my 4 sons (and my wife) and did some quality time together. One wanted to go fishing, another surfing, etc and frankly it was things I should have done before anyway.
But this has been a good reminder for me to stop and smell the roses a little more.
As it turned out, I only needed shallow surgery on the bladder wall and so I still have my bladder, 6 weeks of BCG and then 3 month checkups for a couple years and am now into 6 month checkups and hopefully moving to annual checkups in one more year.
Your friends and loved ones and family are all there for you so reach out to them. And enjoy them !! Don’t spend all the time on what if’s, laugh and drink wine too.
Good luck !
August 23, 2016 at 10:26 pm #20906Rick BParticipantHi Liz,
We are sorry to hear about your diagnosis but glad you reached out. You have received great advice from many folks already. I share your agony in that the waiting is terrible. I found talking about it with friends and family really helped…don’t let it eat your up inside. You should use this form too to ask questions, don’t worry about weather the question is appropriate or not…just ask. Keep the conversations going as they tend to fend off awful thoughts. As others mentioned, caution on what you read on the internet. The net is a great source of info but it is best to let the experts explain your diagnosis and the best next steps.
You probably know this but it is important to remind yourself, and repeat out loud, that BC is treatable and that the success rate is extremely high. I do not know who your Urologist is but if he/she is associated with a large cancer care center that would be best. If not, and you want to be referred, most Uro’s would not hold up such a request and in fact BCC may be able to help you with notable names in the GTA.
I was diagnosis mid 2012 and have been cancer free since mid 2013. I see my URO every 6 months now (was every 3 months) which is normal. I may graduate to annual in time but I’m very happy to be checked frequently because early detection is key to a successful outcome.
Best wishes to you…stay positive…stay strong…
God Bless.
Rick
August 24, 2016 at 2:40 pm #20908marysueParticipantHi Liz:
Welcome to the group that no one wants to belong to. I can’t add much to what has already been said but just to say that I get the anxiety. I too, was going totally nuts in the beginning. The shock of the diagnosis is enormous and makes your mind spin in circles. It will feel a little better once all the results are in and you know what direction this journey will take. Try not to do too much research. Stick to what you need to know for your particular situation. It will only increase your mental stress if you spend hours on the Internet and you may read stuff that is scary but doesn’t apply to you. But that being said, don’t hesitate to post questions or concerns. We are here for you.
Please take care of yourself and let us know how it goes. In the meantime…prayers, positive thoughts coming your way….((((((HUGS)))))
September 7, 2016 at 3:20 pm #20957ValParticipantHI Liz
So sorry to hear about your diagnosis. Make sure you get a copy of your pathology, it is yours. You will be able to ask more intelligent questions and understand the language better.
You are getting some great advice in this stream, so I don’t have much to add except you are not alone. We have all been on that scary journey. Come back often and post your progress. This place is the best for getting good advice and a smile.
If the cancer hasn’t progressed into the muscle wall then make sure you get BCG treatments. They are definitely great for helping get rid of bc cells before they grow into tumors.
Take care of yourself,December 5, 2016 at 7:08 pm #21218RuthParticipantI too am a new participant in this group of very strong people. Even though my situation was just detected as a mass and now waiting to hear about setting up my scope with the urologist, I am trying to take it slowly and one day at a time. I must admit that sometimes that fear factor rears its ugly head and I start to have a bit of a panic attack but then work through it. It is really had as I live alone and the group support is really needed for me. I must say since my journey started last week, I am so impressed with the strength of each member and the stories I have read thus far. Especially how each of you are dealing with it.
I plan to spend a lot of time in the website for your support and extremely intelligent comments.
Thankyou
RDecember 5, 2016 at 7:09 pm #21219RuthParticipantHi Liz
It sounds like we both found out about our situations recently. I am here for you!December 5, 2016 at 8:20 pm #21220DDepParticipantHello Ruth,
I have read your other posts. I am sorry to read that you may have Bladder Cancer.
May I suggest that you scroll-up and read what I posted to Liz?
I found the period when a large mass was detected until the pathology to be the most difficult.
After urinating with blood my GP sent me to Ultrasound. A large “mass” 3cm X 4.5 cm was detected.Owing to the asymptomatic (no pain, no obvious issues) blood in my urine, my GP told me the results and said it “probably was cancer”.
I felt my whole body go numb. My eyes teared-up. I put my hands to my face. Those 6 letters are a very difficult combination to hear.
He set up an appointment with a Urologist. There was much he said to prepare me … but I have learned much, together with this forum, on this journey.One thing I can write, (and I have a reputation for quoting references but I won’t in this case) – Size or the “mass” to a large extent only matters for Risk of Recurrence and also to a lesser extent, Progression. The “T” category and “Grade” are more important than “size”.
So, there will only be an answer to the situation AFTER the Pathology report is provided. The Pathology report is most important.In my case, despite the large mass, I am being treated with immunotherapy and continuing with a new normal life. I have been 16 months cancer free. (Notice how “Time Cancer Free”, is counted by many of us !!)
As I wrote above to Liz, the waiting and not knowing was the most troubling. I did the things I suggested in that post. And once again, I did need to take medication to help me sleep.
There are quite a number of active women (marysue, Marie 1, Lorraine aka “Shelties”, cheryl9 …) on this forum that provide wonderful help and advice. I am sure you will get to know their names in short order.
Finally, and it bares repeating, Bladder Cancer is highly treatable as many on this forum can attest.
Take care … it is a tough time we know … and we all go through it.
God Bless
DDep
December 5, 2016 at 10:12 pm #21223RuthParticipantDear DDep
I read your response after dropping off my urine cytology at the lab. I guess that will take a week or so. Tomorrow begins the followup with the doctor to confirm whether the Urologist he has recommended now waits for the cytology results. Hard to know the process but life does go on. I plan on making a nice dinner and enjoying some movies on TV.
Thank you again for making me feel better today.
HugsDecember 5, 2016 at 11:01 pm #21224marysueParticipantHi Ruth:
Welcome to the club that no one wants to belong to. I’m a 8, almost 9 year veteran of BC being clear for going on 7 years after two TURBTs (tumour removal surgeries) and 21 BCG immunotherapy treatments. Feel free to contact me either by posting on the site or through private message if you want another female to talk to.
When I was first diagnosed, I felt so alone because Bladder Cancer Canada wasn’t up and running yet and I didn’t know a single soul that was dealing with bladder cancer. I somehow thought that I had a rare disease and that I was on my own. It was through this site that I discovered other women dealing with BC and it was such a relief. Having the guys to chat with is fun but it was really nice to unload with another woman too. We gals have to stick together.
Waiting for results is the hardest part. I found that keeping busy was the best way to cope. Since I was diagnosed in the summer/fall we decided to do short out of town trips to favourite spots. I also gardened like a fiend and lost myself in several really good novels pre-surgery. These activities distracted me from thinking too much about all the “what ifs”. We’ll help you through it. Stay in touch. ((((HUGS))))
December 5, 2016 at 11:55 pm #21225RuthParticipantI can’t tell you how much your message made me feel better today. After reading, I thought…geez…maybe it is as bad as I think there is still a goo chance of surviving this and being happy with life. Were the immunotherapy treatments really difficult? I’m curious what the physicial symptoms were. It seems to be the way the medical field is dealing with this type of cancer. Do you still have regular checkups every year?
Wished you lived closer MarysueDecember 6, 2016 at 5:14 pm #21228marysueParticipantHi Ruth:
The waiting for the results of tests, biopsies is the hardest part of this journey. The mental uncertainty and not knowing what the future holds can be stressful and really scary as our minds tend to think the worst case scenarios. Been there, done that twice.
Whether your journey will include BCG immunotherapy treatments or something else obviously remains to be seen depending on the test results. To answer your questions; I do still go for an annual cystoscopy checkup with the understanding from my urologist that I will contact him sooner if I think anything is amiss. Since the cancer I had both times was high grade – meaning aggressive, you can bet that I wouldn’t mess around. I told him that no news from me means good news.
As for side effects from BCG, they really vary from person to person and there is no way of telling “how bad” it will get for anyone. You just have to go through it to find out. If side effects get severe, some people have the dosage reduced or their schedule changed or in extreme cases, cancel treatments altogether. This of course is in discussion with their doctor.
For the majority of people side effects generally feel like you’ve got a pretty good dose of the flu. Fever, chills and muscle/joint pain are common along with fatigue. Some people do experience bladder irritation/inflammation and pass blood after a treatment. Some people feel very few side effects. Side effects do tend to be cumulative, meaning they get stronger with the more treatments that you have.
Me? I did have quite the gamut of side effects (I could write a book on it) but mostly the flu symptoms of fever, headache, muscle/joint pain and fatigue. My bladder survived with little effect. I did have a little bit of bleeding with the last few treatments. In my case, my urologist did reduce the BCG dosage for the last 4 treatments so I could finish the number of treatments that he wanted me to complete. Side effects are supposed to subside in 24-48 hours but may last for 72. If they don’t or you are feeling extremely lousy, it is best to check with your doctor or clinic before having the next one to make sure that it is okay to proceed.
I know that this may sound a bit scary since you are new to this, but it is doable. You just have to be prepared to slow down your schedule for a bit. The first time I was a stay at home parent so once I got the kids out the door to school, I could just do whatever I wanted. The second time I was working part time, but my supervisor was really good in adjusting my schedule. I needed the treatment day off followed by two consecutive days so I could just rest and recover. I cut back on volunteering and kid chauffeuring for several weeks, just to give myself time.
No matter what your journey will be, I tell all BC patients – look after yourself. Delegate, reschedule – do whatever it takes to give yourself time to deal with this. I got my hubby to take over as much of the chauffeuring as he could, and arranged carpools. Anything I was volunteering for I told them to look after it as I was going to be out of commission for awhile. If you slow down and give yourself the necessary time to deal with BC, it will help lower the stress level which in turn helps you heal and recover faster. I didn’t fight the fatigue. I took it as a sign that my body needed to rest to heal and actually started to enjoy the excuse to take a nap or snuggle down with a quilt, and enjoy a cup of herb tea and a movie or good book. I hope this information helps. Let me know if you have any questions. All the best. ((((HUGS))))
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