Question about life after Bladder Cancer

[Az]

Hi Everyone,

I have a quick question. I had my first experience with bladder cancer last year and am still to have some booster BCGs every 6 months for the next 3 years. Almost one year has passed since I had my cancer removed. And by the way, my last cysto showed an all clear on Jan. 4.

Anyhow, that’s just a quick history. I guess my question is in regards to life after you’ve had bladder cancer. I expected that after everything was said and done that my life would go back to normal, minus all of the dr’s visits and follow-up BCG treatments. I guess I’m beginning to realize that my body is not the same as it used to be. So, I was wondering if the experience was the same for everyone else.

On Sunday night, I started this flu bug. It really knocked me down. On Tuesday at the hospital the dr said I had a bladder infection (probably side effect from the cysto) with the flu bug. I have never had anything knock me down for so long in my life. I was so upset with my body! I’m just now starting to keep down food… 72 hours later… I’m not hungry, but I haven’t eaten in days, so I try to eat, yet I fear getting sick again…

Anyhow, my quick question that seems to be a chapter later is: Is it normal after bladder cancer to have a flu bug knock you down this long?

[DDep]

Hi Az

I don’t know what my body will be like after all of the BCG rounds. I would be interested in hearing from others who have the BCG treatments behind them as well.

Nevertheless, I know that I will have to have my Bladder monitored for recurrence the rest of my life. That is certainly a change.

Influenza, commonly called the flu, is a viral infection (I have had training in Microbiology). It is spread by aspiration (coughs, sneezes etc.).
Most people misname Rhinovirus, the common cold, as being the flu. Stomach flu is an unrelated gastrointestinal infection and is also unrelated to Influenza.
The body reacts differently depending on its ability to deal with the specific influenza virus. The Influenza virus mutates and changes. Each of us react differently to the virus. However, symptoms include: Fever (38 C), Headache, Chills, Loss of appetite, Nausea, Vomiting, Sore Joints. These symptoms last for at least 3 days and can continue for up to 9 or 10 days. The thing to watch for is a “secondary bacterial infection” that can follow as a result of the influenza virus doing its normal damaging of the protective epithelial cell layer in the respiratory system.
Sounds like you had a bout of influenza.
I have had influenza over the years. My worst bout of influenza was years ago when I was 20 years old. All the classic symptoms and I was laid-up in bed for a full week.
The bummer is that there is little that can be done to treat it. Antibiotics are only given if one gets a seconday bacterial infection – such as pneumonia (pneumococus bacillus).

Now about UTI (Urinary Tract Infection). I got a UTI following my first Cystoscopy. I was told by the Doctor at the time that it is not uncommon to get a UTI after a Cysto. So I asked for advice on this forum on how to avoid it. For example: drinking lots of water for 48 hours immediately after the cysto and taking concentrated Cranberry pills.

Anyway …
Sounds to me, on the surface of it, that you have or had, classic Influenza and a post Cysto UTI.
It is good you went to the hospital because systemic BCG infection mimics Influenza symptoms.
I also would be curious to know if there are any life changes for those that finish 3 years of BCG.

HTH (Hope This Helps)

God Bless

DDep

[Az]

Thanks for your reply Ddep. I agree with you about my getting the influenza. I’ve never been hit this hard and could barely do anything for the last 3 days. I guess bladder cancer or not, if you are going to catch a virus it will knock you down. I guess I just needed an excuse to be knocked down for this long… I suppose I need to give my body more patience.

Thanks for sharing your expertise. IDH (it did help)

[Jack Moon]

Hi Az

First of all congrats on the all clear on the 4th. BCG seems to be doing the job of stopping any recurrences of occurring. I did not experience influenza during the period of my treatments from 2005 to 2009. I did experience several UTI’s during that same period, to the point of my Uro sending me to an infection specialist. The infection specialist advised me after several tests, that I was not completely emptying my bladder, which he believed had been caused by so many BCG treatments. He recommended I begin taking cranberry supplements which he thought may help which they did as I have not had an infection since 2009 and I continue to take the supplement even today 7 years later. My situation could be an isolated case, but I have spoken with many survivors over the years and some also have told me that the cranberry did reduce the number of UTI’s they were having.
I hope the influenza and UTI soon passes and you can get back to normal and celebrate your all clear.
All the best,
Jack

[cheryl9]

Hello Az

I have always prided myself on not getting sick (flu, cold) so last month when I got a cold it was quite an experience. The exhaustion levels were crazy including the 10 days prior to the onset of symptoms (colds incubate and fester for 10 days before symptoms show up). This was followed by a UTI (after cysto). Surprised me how much it knocked me down.

General consensus of what I have heard: you will tire out a lot faster and take any illness harder for a while after BC. One person I know claims he is just starting to get over the exhaustion and easily tiring 7 years after last cysto. He is also in his 70s so I assume this can be part of it.

Considering BCG is to fire up the immune system, the immune system has to get its “energy” from somewhere. Thus, the body spends a lot more resources fighting BC and the side effect is less resources available to fight other things and less energy for anything else. At least this is my take on it.

Best thing is prevention: anyone that walks into my house with a cold gets read the riot act about cleanliness, hand washing, protocol for coughing and sneezing; get enough sleep; consume lots of fruit and veggies to build immune system; take multi-vitamin, vitamins A, D, E and lacto bacillicus (yogurt); get at least 10 minutes of sunlight a day; exercise; love and laugh.

Hate yogurt? Try the Greek varieties.

Take care

[cheryl9]

Hello again

Regarding cranberries: I strongly believe in their benefit. I added cranberries to my daily diet soon after BC diagnosis. I just had my first UTI after 21 BCG treatments, 7 cystos, 3 surgeries. I believe the UTI got a handle on things because I got run down.

I consume real cranberries every day. 1/4 cup. I buy them during their season (Thanksgiving, Christmas) and freeze them. Add them to my morning cereal each day. I also consume blueberries, cherries and raspberries every day. Frozen ones for most of the year.

Take care

[marysue]

Hi Az!

You have posted a very good question. I had 21 BCG treatments between October 2008 and January 2012. I have not needed further treatments and am down to annual cystos – next one is coming up March 17th. I have been fortunate to have remained clear since my last TURBT in September 2010.

I had heavy duty side effects from BCG and found for the short term afterwards I was a bit vunerable to viral bugs but as time went on I have found the positive side is that I don’t get as sick any more. I believe the BCG boosted my immune system sky high. Now since then I have added a lot to my diet and I’m convinced that helps as well. I take in addition to a multivitamin, a good probiotic and Vitamin D. Vitamin D has been reported to boost the immune system as well as help the effectiveness of BCG. Immune strength begins in the gut surprisingly enough and I found that the probiotic plus a short course of digestive enzymes has straightened out my long standing issue with constipation. Once that was resolved I noticed I had more energy, clearer skin and finally got rid of the mind fog- chemo brain effect and can actually remember and keep track of stuff. My journey coincided with the onset of menopause which thanks to BCG was tougher than average to get through. The BCG made the night sweats/hot flashes very severe but because of doing treatments both my GP and uro said I had to ride it out as BCG wouldn’t go well with HRT which I didn’t want to resort to anyhow. After all that being said and done I’m much stronger and healthier than I was in my forties and early 50’s. I’m going on 58.

I do notice that I have to pace myself more but that is a good excuse to take care of myself and actually say no to stuff that is asked of me. I don’t see it as a bad thing. Life for me now is full and busy. The BCG journey was really tough but I’m glad I perservered and saved my bladder. I now look at the journey from a “post” perspective that it was just one of many events in my life, one that I learned a lot from. As for cystos – yeah, I still get the heebies a week or so before mostly because I hate stuff being done “down there” more than actually fearing a return of the cancer. On those days, I give myself a “me” day. I truly believe what I do to take care of myself gives me the added boost to the treatments and the knowledge that I’ve done everything possible to give myself the best shot at living a healthy life. The post journey consists of an annual checkup, and now giving back and helping others get through where I was. What motivates me is the fact I had to handle most of it alone and don’t want others to have to do that. Finding something new to give me purpose gave me the better mindset which is also key to recovery. If you are constantly in a negative depressed state that does affect your immune system – been there, done that. Vitamin D by the way is a good antidepressant. That is why it is called the sunshine vitamin. Anyhow that is my food for thought for the day.

[KIOWA]

Well life is never normal I guess but for sure bladder cancer becomes part of your life. You can never turn your back on it. My first one was when I I was about 40 something or other. I was clear for almost 18 years and had cystos every year at the insistance of my urologist. Good thing, it cam back, but a different type. So back to treatment. It keppt coming back till I had Valstar infusions. I have been clear for about 5 years. My doc said I have to have 6 moths cystos for the rest of my life. That;s fine with me. I still have my bladder and my life. So bladder cancer is just another part of my life. But as I said, I still have my bladder and my life. Seriously, keep up with the cystos forever. I cannot tell you how important that is.

Kiowa

[DDep]

Kiowa,

I thank-you for sharing your history with BC and life with it.
Everything I have read indicates that for NMIBC there is really no 100% cure. At best there can only be a delay or lowered risk for recurrence and progression.

One example: “Compared with TUR alone in patients with Ta and T1 lesions, treatment with BCG delayed progression to muscle-invasive and/or metastatic disease, improved bladder preservation, and decreased the risk of death from bladder cancer. New evidence is showing that maintenance therapy as defined in Dr. Lamm’s protocol has reportedly further lowered risk of recurrence.” (Ref. http://blcwebcafe.org/content/view/103/113/lang,english/ )

I found the the word “delayed” in this quoted example quite striking. They did not use the words eliminated, cured, cancer-free or anything equivalent. Effectively the best that can be hoped for, in general, after being treated with the best therapy so far (i.e. BCG) is a delay or lowered risk for recurrence and progression. The delay can be quite some time – true enough. In time, we hope there will be a better “cure”.

Once again, thank-you for underscoring by your example, that we can never really “turn or backs” on Bladder Cancer for the rest of our lives. Getting at least annual regular cystoscopies is a good thing. BTW, An acquaintance of mine, diagnosed with Low Risk BC and on annual Cystos, wishes he still had semi-annual Cystos rather than annuals. He would rather it be caught as early as possible.

I am still interested, like Az to know from personal experiences, what the local and systemic (i.e. to the bladder and whole body) aftereffects of extended BCG treatment.

God Bless

DDep

[cheryl9]

Hello DDep

I think you are reading too much into the report. Usually, with these types of research, they are comparing cases where there was actually progression and death. They do not include cases where there wasn’t progression and/or death. This means they are not saying everyone that gets BCG will eventually progress and die.

My grandfather had BC at about the time BCG was coming on board thus I don’t know if he received BCG or not. He died from old age. Not BC. Two of my great aunts had BC before BCG. Both died from other causes and those causes were not related to cancer (one was hit by a car, the other died from contaminated water in Thunder Bay).

Anyway, DDep, how are your stress levels right now?

Take care

[marysue]

I had NMIBC twice and have been cancer free for over 6 years. I don’t think about re-occurrence. I’m down to annual cystos and am content with that. My uro also refuses to declare anyone cured or cancer free. My mindset is different. While I know that the risk is there however small I don’t believe that I will die from this disease. When I heard that the 5 year survival rate was something like 95% for non-invasive BC I knew the odds were in my favour. I’ve never been one to focus on statistics – they give me headaches. To me it is pointless to worry about it. I do a lot to take care of myself which I believe gives added insurance against reoccurrence and that is all I can do. I also told it where to go when going in for my last TURBT. I truly believe mindset has a lot to do with your health.

As for long term side effects from BCG…yeah I’ve had a few. I haven’t checked them out with my doc to confirm but I suspect that BCG was behind my digestion getting screwed up. I’ve used probiotics, a herbal stool softener and digestive enzymes to help with that. I had hearing loss prior to BCG but it got worse after treatments. Chemo is known to have an effect on hearing but BCG? not sure. However, that being said it could be a cause. I had periods of brain fog or chemo brain for over a year. It is just in the past year or so that I’ve felt my brain “come alive” again. I also had bouts of unexplained fatigue for over a year as well. But I got to keep my bladder and for me that was the best part. I still hope that they come up with something better than BCG in the future though. Something with fewer side effects.

[DDep]

Thanks for the posts Cheryl and Marysue.

Marysue, thank-you for the input on life “after” BCG. I found fatigue lingered for some time after my Induction. Although I have less fatigue now some time after induction but even after my first round of maintenance nevertheless.

About the disease itself, I feel exactly the same way as Marysue. “While I know that the risk is there however small I don’t believe that I will die from this disease.” and “To me it is pointless to worry about it.” Like Kiowa said, I also do not believe I will ever be able to “turn my back” on it. I only cited one example of text – there is no point in listing all the others. It is sufficient to point out that I will need annual Cystos the rest of my life because the risk will still be there – There really is no 100% cure. It is really just a question of delay for recurrence/progression – BUT that delay can be very long indeed ! – 18 years. Or, as in the case of Margaret Thatcher, who had BC, I may succumb to something else.

Statistics by on their very nature are dated and based on treatments used years ago. Example: EORTC risk tables, in large measure, do not incorporate the results of BCG treated patients. BCG induction and SWOG maintenance is still not widely used for appropriate patients. Moreover, even today, according to a Sloan (US) study around 80% of TURBT NMIBC patients do not get Post-op Mitomycin-C treatment let along any follow-up Chemo or Immunotherapy. More can be done to improve survival rates for all who have BC no matter what the stage or grade (per another post).

My stress levels are low. I am in good spirits overall – other than the normal day to day life trials we all face. Had a great day cross-country skiing yesterday.

God Bless

DDep

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