Riding the Cancer Roller Coaster

[PeterL]

Shocked, Depressed, Fearful, Thankful, Joyful… repeat over and over. This seems to be the new ride I seem to be on and can’t get off! I am 53 and was happily living a “normal” life until one day in November after playing a hockey game I noticed blood in my urine. My family doctor ordered a battery of tests and very shortly after completing them, I get phone messages from my family doctor and urologist booking immediate appointments. My ultrasound revealed a mass on my bladder that needs to be checked out… could be something but it could be nothing I’m told.

Next was the dreaded Cystoscopy…. I’m in total shock as the doctor confirmed I have bladder cancer and he’s recommending TURBT as the next step. Then there’s the waiting for this procedure to take place in December while my mind and emotions are going into overdrive. Thankfully my wife is a Psychologist so she was able to walk me off the cliff of despair on several occasions.

Fast forward to my follow up meeting with my Urologist in January to go over the biopsy results where I get mixed news. Good news was I had very early stage non invasive cancer. Not so good news is I have high grade papillary urothelial carcinoma. Doctor recommends 6 rounds of BCG starting next week over the next 2 months.

So… here I am deciding to join this forum as I have appreciated reading experiences of others going through the same journey. The posts on going through the Cystoscopy and TURBT was bang on… I loved the humour in these posts as I could definitely relate! Hopefully I can repay what others have done for me in anything that I may contribute.

This has been a real testing of my faith producing perseverance that I will need to get through this journey. Thanks in advance to all on this forum… you are my new family!

[Saldcorn]

I guess the first thing I want to tell you is that for me, the waiting was the worst. Right after my TURBT, I knew it would be a cystectomy, but I didn’t know when or many other details. My surgeon clearly didn’t want me to have chemo, but my oncologist did. I took the srgeon’s advice because that meant I would have the surgery much sooner. It might or might not have been the best decision, but all ended up well. I had the surgery last September and am now the proud (?) owner of a neobladder and there is no sign of any cancer anywhere. I’m doing very well with continence.
I guess I just want to say that I found the anticipation worse than the reality. There was frustration and annoyance, but hey… I’m here to tell you about. Hang in there, and remember that by joining this group, you have more support than you could ever dream of.
All best,
Sue

[Jack Moon]

Hi Peter

Sorry you have had to join our club. We have all gone through what you have experienced so far. I was diagnosed in 2005, had 2 small recurrences and several BCG treatments including BCG maintenance treatments. Good news is that I have been cancer free since 2007. If you have any questions or concerns regarding your upcoming BCG treatments, many of us here are happy to share our experiences.
Welcome to our family, BCG = Bladder Cancer Gone.
Jack

[PeterL]

Hi Sue, it’s interesting you mentioned you have both a surgeon and oncologist. I have only one specialist (urologist). Is it just titles or should I consult an oncologist as well?

[PeterL]

Thanks Jack for your encouraging reply. Really glad to hear about your positive results!

[SJay]

Hi Peter

A surgical oncologist deals with the TURBs, BCG and cystoscopies.
A medical oncologist deals with chemotherapy. This is not usually required for NMIBC. I was referred to the medical oncologist by the surgical oncologist when it was decided I needed my bladder removed. Neoadjuvant (before surgery) chemotherapy completely eliminated the tumour.
A radiological oncologist deals with radiation treatment. Not sure when this option is required.

Hope that helps.
Stephen

[PeterL]

Thanks Stephen, yes that helps.

[marysue]

Hi Peter:

Welcome to Bladder Cancer Canada but sorry that you have need of us. I always say this is the club that no one wants to belong to but that being said, I hope that you will find us helpful.

The bladder cancer journey as you mentioned is nothing short of an emotional roller coaster. Like others have mentioned I too, also found the waiting for test results, test dates the most stressful Once I had my diagnosis and knew the path I was on, it helped some. However, for me the roller coaster started again when I experienced a minor recurrence in 2010. It is difficult to get the process done and then have to start it all over again. BUT…it was this group that made all the difference for me. By talking to others, I realized that the recurrence was annoying but relatively minor in the grand scheme of things. Once I understood that, my mind calmed down some.

I hope that you will get good news. All the best and let us know how it goes. ((((HUGS))))

[Ruth]

Hi Peter
Welcome to our family.
I, too, am new to this (blood in urine in Nov, scope, and just had my TURBT) a couple of days ago. It went well and very little discomfort. The wait begins for the results of the pathology so I will keep myself busy for the next two weeks.

It definitely is a roller coaster but know that you have a great support system here. They sure know their stuff and it has helped me tremendously.

Keep strong and positive. I thank my lucky stars every day that we live in a country with a good health care system.

Hugs

[Gloria]

Hi Peter and Ruth

I just want to wish both of you the best as you go through your journey wi the rest of us. This forum is now my new family as well. It is so good to be able to chat with folks who have gone through or are going through this roller coaster ride. It certainly tests your faith and stength.

Let’s keep positive as we tackle what lies ahead.

Gloria

[DDep]

Hello PeterL and Ruth

Ruth, I found it to be a difficult emotional time …. The time between being first diagnosed, then pathology and until the treatment plan was laid out before me. The stressful “dark times” were most difficult while waiting for the pathology report.
We all have gone through this period.
I does get easier!
Take long walks. Talk to family and friends.
I found doing hobbies and work around the house that gave me a sense of accomplishment to be most theraputic.

Peter, I am sorry to hear that you have been diagnosed with Bladder Cancer. It is fortunate that it was caught early at before it was invasive.
I was diagnosed with a single large 3.5cm x 4cm TaLG tumor in August 2015.
I have had 3 TURBTs because my Urologist was very “thorough” with me. He thought that my condition was worse than it was.
I am assessed as having “intermediate risk NMIBC”
I am being treated with BCG in accordance with the SWOG (South West Oncology Group/ Dr. Lamm) treatment protocol.
I have completed my first year of treatment and will be having my 18 month maintenance BCG sometime in March/April.
The good news is that I have been cancer free since after my first TURBT.

BCG is the standard of care for treating high and intemediate risk NMIBC according to CUA (Canadian Urological Association).
The success rate with BCG is very good.

I pray for the best success and positive days on your journies.

God Bless,

DDep

[PeterL]

Thanks MarySue, Ruth, Gloria, and DDep for your words of encouragement. I sincerely appreciate it! My first BCG treatment is scheduled tomorrow morning and I am ready to kick Cancer’s butt.

[GerryW]

Just to let you know that me and others are here for you. The great news is that you got an early diagnosis that qualified for BCG treatment. I can’t say enough for our great healthcare system and support services. All my best.
G

Kingston and the 1000 Islands

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