Newly Diagnosed

[Sophie’s Mom]

Hello everyone. I am at the early stages in the diagnosis process (which seems to take FOREVER). What I know is that I have bladder cancer, it is invasive, I will lose my bladder, and I will have chemo. Just waiting for the results of the TURBT to determine if the chemo will be pre or post surgery and the stage, etc.

At 46 years old it is quite a shock. You go into emergency with pain and blood in your urine and within a couple of days (after CT and cystoscopy) you learn you have a cancer you had never even heard of.

Since my initial diagnosis on August 19 it has been a rollercoaster. The questions and fears that roll through my mind seem never ending. I imagine others can relate.

I would really appreciate hearing from the voices of experience, especially about pain management, helping your loved ones cope and experience with bladder replacement.

Thanks very much in advance.

[Michele_Z]

Hi Sophie’s Mom
I know exactly how you feel and I’m happy to help you in any way I can. I was diagnosed with high grade invasive bladder cancer when I was 49. It too was like a blink of an eye and my whole world changed. I’m two and a half years out from my chemo and a radical cystectomy, now cancer free. We have top notch cancer care at the Cross and skilled urologists too. I live just outside of Edmonton and work in the city so let me know if/when you might want to talk.

There is lots of support and experience within BCC. Please feel free to lean on us for whatever you need. We are here to help very step of the way!
Michele

[marysue]

Hi Sophie’s Mom!

Welcome but sorry that you have need of us. While I was fortunate not to have to have my bladder removed I can relate to the shock and fear of the experience. I too, had never heard of bladder cancer prior to my diagnosis. The fear, anxiety etc. that one feels can only be fully understood by someone else that has been there. Know that your feelings are totally normal. Feel free to stay connected and ask all the questions you can think of. There are many in addition to Michele that have made this very brave journey and I’m sure can be of assistance.

I’m not sure from the post where you are from but if it is in Edmonton or Calgary I suggest that you seek additional cancer support from Wellspring. It is a major support centre for folks with any type of cancer. Programs and support are open to patients and their families and loved ones free of charge. Donations are gratefully accepted though as this organization depends on donations and receives no government assistance. I run my Calgary support group from the Calgary location and have taken part in many of the programs. They along with all the support I’ve gotten from Bladder Cancer Canada was what got me through the process.

Also, if you haven’t already noticed there is a link on the homepage for extra information on bladder cancer. Best wishes and please stay in touch.

[EddieM]

Hi Sophie’s Mom,

Those results do take some time don’t they when you are looking for answers. I was diagnosed last year just prior to my 40th birthday. To date I’ve had a single TURBT and installation of chemo but have managed to keep it at bay thus far, with the exception of a further diagnosis of CPPS (Chronic Pelvic Pain Syndrome). My first (hoping only) tumour was a low grade Ta stage. I’ve been one of the “lucky” ones but I can relate to the racing mind in the early days. You have an outstanding support system here with some really great people and even better means of gaining info.

Please venture through the site and read as much as you can. Call our number if you need to chat and know you are among friends.

Ed

[Rick B]

Hi Sophie’s Mom,

I was diagnosed 2 1/2 yrs ago…a couple of months post retirement. Mine was not invasive but I had 2 situations (a low grade Ta and CIS)…the latter high risk and concerning. I’ve been cancer free now for over a year thanks to the great medical staff, facilities and treatments we have here in Canada. During the first 12 months a had recurrences so the concerned heightened. One thing I’ve learned from the wonderful people you’ll get to meet here at BCC is that they’ve seen/experienced most everything.

The anxiety you are experience is normal…I recall going through some very tough patches the first year and the comments, encourgement and advice I got on this site really helped. I found that searching a lot on the internet was somewhat helpful but often created anxious moments because I didn’t fully understand the reseach results, which by the way, were from all over the globe….I caution not to try and diagnose yourself. Use what you find to creat questions and conversation topics when to meet with your medical team or for discussion in this forum.

As others before my posting have said, please keep in touch and I encourage you to take advantage of the offers from those who have reached out from your area. They are ambassadors and can be so much help during this most difficult time. Please keep this in mind…you will get through this and find many many great years ahead…we have all found strengh when adjusting to the new norm…as will you!

Take care, keep in touch and may God Bless.

Rick

[Val]

Hello Sophie’s Mom

You are young to be diagnosed with bladder cancer. I was like you when I was diagnosed at 50 – “you can get cancer there?”

Since my diagnosis I have relied upon the people in this group to support me. Having bladder cancer is a very lonely journey. Hardly anyone knows about this cancer, there’s so few people who understand what you are going thru.

There is someone here who has the same experiences. While our journeys are all different, collectively there is usually someone here who can help you.

What you are experiencing emotionally is normal – scared, anxious. The waiting and not knowing is the worst. I found that the medical staff were throwing around terms that I didn’t know – almost like they were speaking a foreign language. Ask lots of questions. Sometimes you won’t know what to ask, so ask here and then go prepared with our advice & questions to your next appointment.

I also echo Mary Sue’s advice to visit Wellspring. While, they didn’t have any specific to bladder cancer & I was the only bladder cancer patient there at the time, they still understand what I was feeling & could help me with some of my questions & concerns.

It is scary, but you are not alone. Saying some extra prayers for you!

Valerie in Calgary

[Babs]

Hi Sophie’s Mom
I am so sorry you are facing this health challenge. I remember those early days 2 1/2 years ago after learning I had a tumor when terror was my constant companion. Initially I couldn’t even bring myself to say the word Cancer. The waiting seems interminable and then things seem to be happening way too quickly. There are a myriad of emotions that need to be heard. Each of us find a way to get through this journey and you will, too. By reaching out on this site, you are accessing support from others who have walked in your shoes. It is a lonely journey as Val said, but you don’t have to walk it alone. There is support here in Edmonton. Unfortunately our Wellspring isn’t completed yet but we are offering a Bladder Cancer Support Group monthly at the Canadian Cancer Society Office. It’s a chance to talk with others who have firsthand knowledge of what you’re facing. The next meeting is Oct 28th @ 7 pm. If you’d like one-on-one connection, there are people like Michele you can speak to. I know for myself it was so reassuring to learn about a female bladder cancer survivor who was leading an active life. I was desperate for info but scared myself with info I found on the Internet. So heed Rick’s caution. The BCAN pamphlet “Bladder Cancer Basics for the Newly Diagnosed” that you can download from the “Facing Bladder Cancer” tab at the top of the page is an excellent resource.
Know we are only a phone call or post away. Take care.
Bette

[Dawn]

Hi,
Very sorry about your diagnosis. You have come to the right place for support.

I just read Michelle’s post and encourage you to talk with her. She was an incredible support to me when I was preparing for the removal of my bladder and I know she is there if I need her.

I was 47 when diagnosed and had my bladder removed and now have an orthotopic neobladder. I am 1.5 years cancer free. Please do not hesitate to reach out to me if you have any questions.

Bladder Cancer Canada will align you with the right people to help.

Thinking of you!
Dawn

[Mollygolly]

Hi Sophie’s Mom.

I was 45 when I was officially diagnosed. Never saw blood in my urine but was found microscopically on a routine u/a/ I had urinary urgency and frequency. Probably why I did not receive a prompt diagnosis because of those symptoms. I was prescribed pills for my “overactive bladder” – yeah right! Sometimes you have to be your own advocate. Well, I guess I did and that saved my life.

I am 2 years out from my RC. I was not muscle invasive. I am assuming you are because of the chemo? I was T1G3 with lots of CIS and ultimately BCG failure.

When I was first diagnosed my head was spinning just trying to process all the information. We have all been there. I can honestly say that life without a bladder is good. I know that may be hard to believe right now as it was for me when I started my journey. But here I am and I do basically everything I did before – probably more now. I really did not have many problems after my surgery. I don’t recall being in a lot of pain. They give you medication to control that for the first few days. After 3 days post op – they took me off the morphine pump which was fine because I didn’t need it. I am thankful that I had an excellent surgeon. If you have any questions, please contact me. I would be more than happy to answer any questions you may have.

[stumblegirl14]

Welcome Sophie’s Mom. I was also one of the ones completely in the dark when I was diagnosed with bladder cancer having no idea anyone could get this let alone women. While waiting for my first turbt I lucked out and discovered this site that was so helpful with information and removed a lot of my fears and helped me be optimistic about the outcome. Luckily (or so I like to think) I was diagnosed with low stage bladder cancer. I wish you all the best with your surgery and recovery. Stay in touch.
Flo

[Gord]

Dear Sophie’s Mom, quick response here as I see you are getting some good responses from others. My symptoms appeared two years ago last week. Same story as you, turned out to be Stage 2 muscle invasive bladder cancer. Big shock at 52, having been a non smoker and never worked with chemicals, and in good health otherwise. Went through chemo in winter 2013, and lost my bladder in June 2013. I am now the proud owner of a neo bladder, which 15 months post surgery I am glad to say is working very well, and I am cancer free to boot!. All that to say that the road ahead will be long, and (very) challenging at times, but there is good hope that at the end of it all, life will return to a (new) normal. So glad you found BCC, this site and the people associated with it were of tremendous help and encouragement during my journey, just being able to ask anything at all, and hearing about other people’s experiences, helped me to frame my own expectations, fears, hopes and possible outcomes. Stay in touch. My thoughts and prayers are with you as you start the journey.

[Sophie’s Mom]

Thank you everyone for your kind and informative replies. I have been dealing with pain issues thus my late response. Today I was clinically staged at 3B. The cancer is right against the bladder wall. That coupled with other symptoms is suggestive of possible metastasis. I will be seeing a chemo doc within a week. My gynecological oncologist is recommending neoadjuvant chemo before surgery but as this is outside standard protocols I may or may not be approved. Surgery of course either after, or if I am not approved, before chemo.

I was wondering if anyone had advice they could share either regarding this stage of cancer or with the chemo. Also, if anyone has had success at pain management I would welcome the details as I am having a doozy of a time with consistent pain control.

So glad I found this site. It can feel very isolating having this diagnosis.

[millize]

Hi Sophie’s Mom
You have alot going on right now, being organized and having someone help you with this would be great.When l was told l had cancer it was aready in the muscle wall of my bladder, an RC was recommended with neoadjuvant cemo pre surgery. With my situation l didn’t have much pain.This cemo is done intuvinusly over a two day period. and every two weeks depending on how your body handles it.I didn’t have much trouble with the effects from the cemo.
Everybodies cancer journey can be so different, keep this in mind. I got a book at the dallor store and made a log book.I had all my doctors name and numbers , the cards taped inside I had sections for questions , how l was feeling , what l was eating, appointments.And most importantly for me WHAT WAS SAID AT MY APPOINTMENTS WITH THE DIFFERENT DOCTORS, my dauther was my helper.This is a long journey full of uncertainty, reach for faith, believe in hope and know you are loved.like you I was scared , the uncertainty was the hardest to deal with.l am 17 months cancer free.l have a bag and have ajusted to my new normal.My prayers are with you.(hugs)

[Rick B]

Hi Sophie’s Mom…

I cannot offer any advice on the staging you mentioned but do say that everything I read about the various Bladder Cancer situations would indicate there is hope if it is caught early and treated agressively. From postings I’ve seen from others in the Edmonton Area it would appear you are in good hands relative to medical expertise and facilities which is #1 Priority.

As mentioned by others earlier, tracting your progress and getting regular feedback from your Urologists’ is important. Staying positive for the best outcome, keeping in touch with us on BC Web-Site and having faith there is a better outcome through the journey are all critical pieces to keep moving on.

Wishing you the very best, prayers and thoughts are with you…may God Bless!

Rick

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