Joining the club Muscle Invasive Bladder Cancer

[Gloria]

Hi everyone, my name is Gloria, I’m 60 years old and have been diagnosed with muscle invasive bladder cancer. I had a turbt on December 19th and met with my urologist on January 10th and was told that the pathology report indicated that my tumor was muscle invasive and that I would have to have an RC. This turned my whole world upside down and I nearly passed out in the waiting room. I’m an active and otherwise healthy, nonsmoking 60 year old. Beside all the stress, I’m trying to remain positive. I have a great family and very supportive friends. I’m feeling quite anxious as I’m having a pet scan on February 2nd to see if the cancer has spread. I have a knot in my stomach that grows throughout the day into the evening. I live in Edmonton – are there other Edmontonians that are going through the same turmoil? I would love to hear from you and what choice you are making regarding diversion – I’m going to choose the neobladder route but would like to hear from those who have chosen this option and if they are happy with it. I want to remain active, travel etc.

[marysue]

Hi Gloria:

Welcome to Bladder Cancer Canada but sorry to learn that you have need of us. I always tell people this is the club that nobody wishes they had to belong to but it is a good place to get help.

If you want to connect with other folks in Edmonton, they have a support group. Just click on the link “Facing Bladder Cancer” on the Home page and then the link for patient support groups and send the coordinator Bette an email. She’ll be able to tell you where and when the next meeting is. I believe they have relocated from the location that is listed.

As another alternative, if you want to talk to a patient that has had an RC you can phone the toll free number and leave a message. They will match you up with someone and you can get much needed information. It does help to talk to someone especially if you need to make choices about the type of urinary diversion you will get.

If you haven’t done so already you can also download the patient booklet on muscle invasive bladder cancer to get some information as well.

I’m sorry that I can’t help you with that too much as I thankfully didn’t have to go down that road since I was diagnosed with an earlier stage of this disease. However, that being said it was still a scary thing to go through. Staying positive helps a lot, but there are times that fear will run high. This journey can have many twists and turns so the more people you have in your corner the better. You will probably hear from others on this site pretty soon.

It can be frustrating trying to figure out how and why we got this disease. It took me a while and in my case I came to the conclusion it was chemical exposure from cigarettes. I grew up in a house full of smokers and was in a workplace full of smoke but didn’t smoke myself and also had a lot of local exposure to pesticides and dyed my hair for many years. Did that cause it? Maybe, maybe not. Sometimes there aren’t any clear answers and it takes time to get your head around it.

Please stay in touch and let us know how it goes. Good luck with the PET scan. We will pray for good news.

[Gloria]

Thanks MarySue for your reply. It means a lot to have people to talk to who are going through similar experiences. Yes emotions run very high. I feel like I’m on a roller coaster for sure. I have thought about how I got this disease and who knows. I grew up on a farm so perhaps there were pesticides. I also have dyed my hair for years? There are chemicals in the air we breath and I suppose some of us are more susceptible than others.

I will remain positive and want to get back to a life where I’m not stresses every day so prayers are very welcome. I will keep folks updated on my pet scan and meeting with my urologist.

Gloria

[DDep]

Hello Gloria,

I am sorry to hear that you have been diagnosed with Bladder Cancer.

MarySue has given some good advice (as she always does) for additional support.

It is a difficult time to go through without doubt. I think all of us have been there.
It was particularly difficult from the time I was told I had a tumor until a treatment plan was laid out before me.
Reaching out and talking about it with family, friends and support groups (such as on this site) helps.
Take long walks
Doing hobbies or activities that gave a sense of accomplishment helped me.
During the “darkest time” I could not sleep. I lost 10kg of weight. I got help from my family Doctor. … some pills to help me sleep.

On my 59th birthday, during a cystoscopy it was confirmed that I had a cancerous tumor.
Like you, I never smoked, physically active, did not work with chemicals …. I sit at a desk in an “office” job.
Why I got Bladder Cancer, I just don’t know. Perhaps it was genetic ? A significant percentage of Bladder Cancer cases are not environment related.
My cancer was at an earlier stage than what you describe … emotionally difficult nevertheless.

What I have learned is that Bladder Cancer is highly treatable and life is worthwhile living.

God Bless

DDep

[Gloria]

Thanks that is great advice. I continue to take long walks in the river valley daily and keep busy on errands, hobbies and family. I find the nights the worst and have been taking adivan when I can’t sleep. Once I meet with my surgeon on February 6th he should b able to lay out a treatment plan. I believe he mentioned chemo for three months and then surgery.

It is a nasty disease but my surgeon did tell me that he can fix it and give me another 25 years so I need to work thru the darkness and look forward to spending many years with my loved ones. And continue to do all the things I love such as gardening, cooking and travelling.

I must admit that losing my bladder and learning to use a new one scares me. If anyone has gone thru this surgery recently I would live to hear from you.

Gloria

[rock2013]

Hello, do your research, ask lots of questions. Neobladder, Ileal conduit (External bag) Indiana pouch. There are pros and cons for the 3 of them. in my case a 72 year old male from Ottawa area, I chose Illeal conduit. a 5 hours and 20 minutes surgery, Neobladder takes longer. I took 4 months of chemo prior to surgery and 5 weeks of radiation post surgery. My cancer was stage 3 and muscle invasive and aggressive. Bladder, prostate and 21 lymph nodes were removed. That was 26 May 2014. It took a considerable amount of time to get used to the external bag. I have a surgical hernia. I am still alive and well all SCANS are negative for tumors. So far so good, I am positive, life is good, Best of luck

[Ruth]

Hi Gloria

I am fairly new here but I must say that the wonderful and knowledgement people here have helped me tremendously. I am scheduled on Feb 9th for my TURBT. Not looking forward to it but from what I understand from my surgeon he felt very positive we are catching this early. The pathology will give me much more info so my wait continues there.
Please keep positive on your journey and know that you are not alone. Since joining our group at the end of 2016, I have come to realize that we ( female age 66, working for years at an office desk and non smoker as well) might never know why the BC showed up but more importantly, it is being dealt with and our doctors in Canada are the very best in dealing with this.

Big hug!

[Babs]

Hi Gloria
You have gotten some good advice already and it appears you are doing everything right to deal with the anxiety. I can remember the terror that would overwhelm me often as I waited for surgery and a definitive diagnosis. I found within myself a strength I didn’t know I had. It also sounds like you have good support.
I am one of the fortunate ones with noninvasive bladder cancer but I can help you connect with an Edmonton volunteer who has had a neobladder for over 4 years. She will be able to answer your questions and is living proof life can be good after Bladder removal.
We have a great bunch of survivors in Edmonton who have walked this journey. We hold a monthly support group. I will private message you with my contact info. Please reply and I will give you more info and arrange for you to talk with the woman with the neo bladder
I look forward to speaking with you.
Bette

[Gloria]

Hi everyone;

Yesterday I got the results of my pet scan. While they weren’t the results I was anticipating, the good new is that the cancer has not spread to my organs but it showed up on a few lymph nodes in my pelvic area. My surgeon says they will do a more aggressive chemo before surgery and hopefully I will respond well. I’m waiting for a call from the Cross Cancer to meet with he oncologist.

I’m grateful that the cancer did not spread beyond the pelvic lymph nodes but none the less still anxious. Has anyone experienced this and can you tell me your experience with chemo before surgery. So glad I have this group to reach out to.
Bette – I still will call you but my emotions are pretty high at the moment.

Gloria

[SJay]

Hi Gloria

I had neoadjuvant chemo (before surgery) about a year ago. They gave me a combo of Cisplatin and Gemcitabine with a lot of saline for 12 sessions in a pattern of week 1, week 2 and then skip a week. In my case after 2 months a CT showed the tumour shrinking. Pathology report after my RC detected no cancer cells in the bladder, prostate or lymph nodes, so that worked pretty well. You take some anti-nausea drugs before each session. The dexamethasone is a steroid and gave me something of an appetite. I gained 5 pounds. I was often quite chilled and got a sore arm during the treatment. Warm blankets and putting the intravenous by my elbow instead of the back of my hand seemed to help a bit. Fatigue and side effects such as numbness seemed to peak 4-5 days after each treatment. RC is scheduled 6 weeks or more after completing chemo to give your body time to recover and build strength.

Hope all goes well for you.

Stephen

[Gloria]

Hi Stephen

I just got a call so will be meeting with the oncologist this Thursday to go over my treatment plan. Sounds like chemo isn’t fun but I hear that surgery is more successful with it. The fact that I have some lymph nodes that came up positive makes me anxious to stop them from further spreading. Were you able to exercise to keep up your strength during chemo? Gaining weight would be good for me since I’m already down 5 lbs from the anxiety and stress.

I appreciate you sharing your experience with me.

Gloria

[SJay]

Hi Gloria

I don’t think exercising to keep your strength up during chemo would work. It just makes you more fatigued. I did ski a bit on my off weeks, but only for a couple of hours and with lots of breaks. I also walked a fair bit. Usually I’m very active but the chemo really slows you down. I’d say just do those things that lift your spirits, and only do as much as you feel comfortable doing.

Stephen

[Gloria]

Thanks Stephen, that makes sense. I like to walk everyday in the river valley so I will continue to do that when I can. The fresh air and woods make me forget this disease even if it’s only an hour. Every little bit helps.

Take care,

Gloria

[GerryW]

Hi, Gloria
I’m 65 years old and was diagnosed with T2a mibc and prostate cancer back in 2015. I had 3 months of the same neoadjuvant chemo as Stephen that Fall. I ran into constipation after the beginning of each chemo cycle. Turns out it was caused by the antinausea medication ‘Emend’. Everyone reacts to it differently, so it might not affect you. My solution was Senekot-s starting a day before chemo for up to 4 days plus plenty of water and fibre in my diet. My white blood cell count would drop as expected during treatment. Medication is available to accelerate wbc growth but I chose to pass on it resulting in a couple of treatment delays. In the end, my course of chemo did have the desired effect.
I found my chemo experience good thanks to family and reassuring staff who provided excellent care and support.

Best Wishes
Gerry

Kingston and the 1000 Islands

[Gloria]

Hi Stephen and Gerry

Looks like I’m getting the same chemo cocktail as Stephen. Just wondering if either of you lost your hair as a side affect? I have been told about numbness in fingers and toes as well as ringinging in the ears. Did either of you experience these side affects?

Gerry – I’m glad to hear that your chemo experience was a good one. My hope is that my body responds to the chemo and makes me viable for surgery.

Thanks for the wishes,

Gloria

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