new to BCC

[jen129]

Hi, I’m Jen, I’m 49 and in Feb 2016 I was diagnosed with bladder cancer. I had between 10 and 12 small tumors removed and a month later had another TURBT and the results from that were great! I have to start my BCG treatments in 2 weeks time and I’m looking for information and personal experiences to learn from.
It was so frightening to hear the words you have cancer and 2 months later I’m still trying to deal with it. I have been off work since February and don’t really want to go back until I have completed my BCG treatments and had my TURBT which is booked at the end of June. Just wondering is this a view that others have taken as I am constantly exhausted and still have the feeling of a bladder infection.
I just read about a guys experience with a BCG treatment and it sounded horrific. My urologist and family doctor and nurses have all been wonderful on every visit and I hope this doesn’t change.
Thanks for listening
Jen

[marysue]

Hi Jen:

Welcome to Bladder Cancer Canada and the site that no one wishes they had to belong to. I’m sorry to learn that you’ve joined our club but you’ve come to a great place. This site was a life saver for me in 2010.

Yes it is scary to hear “you have cancer”. We automatically assume the worst. However non-invasive bladder cancer is survivable and treatable. That being said it still takes time to get your head around what is happening. Been there done that. Connecting with others like on this site really helps because you realize you aren’t alone.

I’ve had bladder cancer twice – 2008 and 2010 and have had two TURBTS (scope surgery to remove the tumours) and 21 BCG treatments. Reactions to BCG treatments vary from person to person and yeah that guy that posted had a horrible time but he is the exception not the norm. The majority of us find the catheterization doable but sometimes we are tender in the urethra still in between treatments and if that happens discussion with clinic staff is all that is required. I was and was able to get the nurse to at the very least lubricate the catheter with the anesthetic gel so it would slide in easier. Deep breathing before and during the insertion really helps get it in faster and easier. If you have a good hospital staff and it sounds like you do then it should be very doable.

Side effects from treatment is generally fatigue with flu like symptoms of low fever, headache and chills that last 24-48 hours. Some people experience bladder irritation and strong urges to go. All of this subsides once treatment is over. My side effects were on the heavy side but I just took it easy and relied on rest, lots of fluids and Tylenol. Some people have little or no side effects.

I’ve been off work and worked part time through treatments. If you can afford to take the time off while doing treatments you will most likely benefit from that but if not affordable then I suggest for sure taking the day of treatment off as you can’t use a public toilet for several hours after treatment and possibly 1-2 days following days depending on how you feel. Unfortunately you won’t know side effects until you are into it. If you have a flexible work schedule take advantage of it.

Last thing, if the irritation persists get checked for a bladder infection prior to starting BCG. If you do have an infection that will have to be treated with antibiotics which will kill the BCG making the treatment useless if they were taken at the same time. You need to be clear of infection first.

If you have any further questions don’t hesitate to post or private message me. Take care and let us know how it goes. (((((HUGS)))))

[DDep]

Hello Jen,

I am sorry to hear about your diagnosis.
I am sure I reacted like most when I first head those heart stopping, shocking and saddenning 6 letters.
BUT … Now that I am dealing with it – I am very positive. Bladder Cancer is highly treatable!

I was diagosed with Non Muscle Invasive Bladder Cancer (NMIBC) in July 2015. I had a very difficult emotional time with it until after my second TURBT Pathology Report. My Urologist thought it was possibly more invasive at the time – I am grateful that it turned out for the better. That was a lesson – the Pathology Report is key. I made sure I got copies of my post TURBT Pathology reports.
My first suggestion is that I strongly recommend you do the same and get copies of your Pathology reports. Also, make sure your Family Doctor gets the copies as well.

I have had 3 TURBTs. Fortunately the 2nd and 3rd were benign and for something other than BC. On reflection, I am fortunate my Urologist was very thorough in this regard.

I have completed 12 BCG treatments (6 induction, 3 at 3 months and 3 at 6 months). I find getting the instillation of BCG to be very straightforward. I know each of the three Nurses at TOH (The Ottawa Hospital) that do the installations routinely. They are wonderful people. (BTW They were with us on the BCC walk back in the Fall of 2015.)

For BCG treatment: You should get a pamphlet or booklet on what you need to know or follow for the treatment. Just to highlight some additional things though …The Bladder is to be emptied before going into the Hospital Clinic. At the Clinic, the BCG instillation procedure uses a thin flexible catheter with gel. It is put though the Urethra to the Bladder. They allow any remaining urine to drain from your Bladder (there will be some) before instilling the BCG. They look for ANY visible blood in the urine in this drainage to ensure they did not cause any cuts or tears when putting the catheter in. If there is blood, BCG should NOT be instilled until things heal up. This is to ensure that BCG, an attenuated Tubuculosis Bacillus, does not cause a systemic infection by entering through any broken tissue. The very sad and concerning episode you read on this forum highlights that the proper procedure was not followed.
I always ask the attending Nurse whether she sees any blood in the drainage. She always assures me that it looks good and clear.
So, my Second recommendation: Politely ask if the urine is clear.
After this, the medical professional will then slowly instill the BCG through the catheter into your bladder. The BCG should be held in the bladder for 2 hours. Drink lots of water to flush out the BCG after the 2 hours.

Everyone reacts to BCG differently. As well, the symptoms may change with the instillations. Most people get dysuria (burning when urinating), frequency, urgency, chills, for up to 24-48 hours after the 2 hour “hold time”. Some people also get Gross Hematuria (visible blood in urine), slight fever and influenza (flu) like symptoms during this period as well.
My third recommendation: Take your temperature during this period. Any high fever for over 24 hours should be followed up with the Urologist.
My BCG side-effects were pretty mild during the first 6 inductions. I wondered whether it was working at all! I went to work and continued with my daily routines.
However, I get the full set of side-effects after my maintenace treatments. So now, I have to take the full day off when I get BCG maintenance. I had some blood in my urine as a side-effect for about 6 hours after the 2 hour BCG hold. I let my Urologist know about this. He said that as long as there is no fever, it is a normal side-effect. All my side-effects tend to go away after 12 hours post “hold”.
But, the most noticable long term (a few months) side-effect that lingers is the constant feeling of tiredness (fatigue) This does gradually pass – but it does slow me down.

I know I may have written quite a bit here … maybe its the mood I’m in. Hope you are still with me. Because here are my final thoughts.

NMIBC highly treatable and even fully curable! If you can take time off work etc. That is great.
For me, I go on living my life as it is. No point dwelling on NMIBC. Life is just too important to dwell on it.
It takes more worry and damaging stress to think negative thoughts. It is healthier to put this trial of life in context and be positive. So … Continue to LIVE! Life is good!

My final recommendation(s)
If you smoke … Quit.
Take Vitamins A, E and Lactobacillus Casei daily
(Ref: http://blcwebcafe.org/content/view/103/113/lang,english/
The article contains a wealth of information for NMIBC. As far as the Vitamins go … Look at the “Guidelines” section at the end of the article, 5th bullet from the bottom.)

One more time: NMIBC highly treatable and even fully curable!

We are here to help … just ask

God Bless

DDep

[mr.claude]

Hi Jen,

Sorry to hear about your diagnosis. DDep summed it up quite well.

Keep positive thoughts, and in my case…DO NOT RESEARCH ONLINE TOO MUCH!!! That was the most depressing thing I did when I had to swallow the heavy pill known as cancer. Watch lots of comedies and keep being positive. Also talking about it has helped me. And this forum has lots of great info.

BCG is pretty straight-forward. I’ve only had my initial treatments back in late November/early December, and my Uro assures me that in my case, every 6 months for maintenance for 3 years is sufficient…Overall, the entire procedure took about 10 minutes with a slight discomfort for about 15 seconds, and I was able to walk the 1km home afterwards.

When it comes time for your scope a few weeks after your BCGs, drink lots of water a week before and after with some cranberry capsules to avoid possible UTIs.

Take care,

Claude

[jen129]

Thankyou all for the info, its been a great help. It is a comfort to talk to others that know what its like to go through this.
How about the fatigue? Does the tiredness go away, because I cant shake it. I also have b12 injections, which I have been having for a couple of years now and it doesn’t seem to make any difference lately. The weather is warming up slowly so some nice little walks are on the cards!
Once again thanks for the replies
Jen

[marysue]

Hi Jen:

Yes, the fatigue from treatments does go away after a bit. For me it took a few weeks to really feel more myself and then I would have bouts of fatigue here and there for another few months but to a much lesser degree and they got fewer and fewer as time went on. It wasn’t impossible to do things, I just had to give myself more time and rest more. As mentioned everyone is different in any side effects they have from BCG.

As for the B12 shots…if you have other health issues I strongly recommend that you make sure that your uro and the clinic are fully aware of any other health issues and medications that you take including vitamins and supplements before you proceed with treatments. They need to be aware so that they can make sure that the BCG wouldn’t conflict with any of them and in that case you may be told to change the dose or stop taking the other meds for a specific period of time. They are the best judge of that.

[mr.claude]

Hi Jen,

Like MarySue said, the fatigue does go away. In my case, I had an over-abundance of energy, and would go out and shovel like a madman this past winter, now I’m back to fatigue but I think it’s more related to work…I don’t ever recall needing 12 hours of sleep a day (weekends rock for that), but like I said, I blame work.

I’m a firm believer that your body will tell you what you need….if you need a nap – take it!! Just listen to your body, and keep a positive attitude!!!

Claude

[Colleen1]

Hi Jen,

Sorry to hear you are on this journey. I was also 49 when I was diagnosed a year ago. I had one tumor which was removed in my first Turbt. I was pretty stressed about the C word too, it was such a big shock. I’m not a smoker, and try to live a healthy lifestyle. My second cysto showed 8-10 small tumors. I found that one harder to deal with. I was so sure it would be gone. I knew chances were high that it would come back eventually but didn’t expect it after 3 months. Each time I have gone back for a scope they have found more. I have now had 4 Turbts in 12 months and I’m going for another scope next week. I have had 2 instillations of Mitomycin but I have not had the BCG. As uncomfortable as the treatments sound, I think that is the best option. I have been asking my doctor about it, but he hasn’t been on board. If there are more tumors this time, I will be asking for a second opinion.
As hard as it is to go through, I feel a sense of peace knowing that we are being checked on every 3 months. I feel that if there is anything it will be caught early on, with the best chance of good results. I own my own business so have only been able to take a few days off with each surgery. I find keeping busy keeps my mind off the places it sometimes wants to go.
Wishing you all the best with the BCG treatments. And when your energy returns, try and keep busy doing something you love.
Colleen

[Marie 1]

Hi Colleen, nice to see you back on the forum.

Thank you for your private message congratulating me on my recent “all clear”. I am having difficulty sending private messages, as it is only allowing me a few characters.

I will be thinking of you next week and praying for an “all clear”.

Take care and God Bless
Marie

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