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Good Morning Everyone:
My name is Patti and I have had 5 surgeries for bladder cancer. My first surgery was Jan. 18, 2016 and my fifth was April 4, 2017. Had one round of BCG after my first surgery, but the tumours kept reoccurring. After my fifth surgery had another round of BCG with the cancer drug Interferon. Going for another cystoscope on Aug. 21. The cancer is high grade, aggressive and had a different urologist and surgeon for my fifth surgery. Has anyone experienced these reoccurrences and what additional treatments did you receive?
Thank-you
Hi Patti
Welcome to Bladder Cancer Canada discussion forum. Sorry you have had so many recurrences. I was diagnosed in 2005 had 3 tumors removed followed by 6 BCG treatments. Had a small recurrence and 6 more weekly treatment. Again a small recurrence followed by 6 more treatments, 1 instillation of mitomycin C, and 12 maintenance treatments. I have been cancer free since 2007 and now just have annual check-ups. I encountered no real side effects during my 1st 12 treatments, but that changed starting with the 13th to 30th treatments. Side effects were burning, urgency, fatigue, and bladder spasms and all were a nuisance but also manageable.
Hopefully the BCG and interferon will stop your recurrences, as I do know many survivors where the treatments did do the job. I do recommend if you do not have, a copy of your original and latest pathology report which will show the type of bladder cancer you have and the depth of the tumors. This is away for you to check to insure you are receiving the recommended treatments for your bladder cancer.
I wish you all the best going forward and please do not hesitate and asking the group any further questions you may have.
Best regards,
JackHi Patti:
Welcome to Bladder Cancer Canada and sorry that you have need of us. 5 TURBTS and BCG treatments is a lot to go through in such a short time.
I have had non muscle invasive high grade bladder cancer twice – first in 2008 (several tumours) and a small recurrence of one tumour in 2010. I had a series of 6 BCG treatments after my first TURBT and 15 more BCGs ( a set of 6 and three sets of 3) after the second TURBT. I have been cancer free since September 2010. I believe that the extra BCG did the trick in my case.
Sometimes tumours do recur even during treatments. The exact reason why is not always known. Whether it is because of residual tumour remains that got missed during the TURBT surgery or there were still unseen tumours that didn’t get removed, we don’t know. For the majority of us with non muscle invasive bladder cancer, BCG treatments do work but it seems that it takes more time for them to be effective in some people. Some as in your case do receive Interferon as well. Side effects as Jack mentioned, can vary. I was one of those that had a lot of side effects and it wasn’t easy to power through but I’m glad that I did.
I second Jack’s suggestion in getting a copy of your pathology report to make sure that you understand your diagnosis and that you are receiving the correct treatment protocol. Hopefully this last round of BCG with the Interferon will do the trick and that the news on the 21st will be good. Best wishes for an “all clear” as we call a tumour free check up. Let us know how it goes. ((((HUGS))))
Thank-you Jack and Marysue for your responses and assistant. I checked the last pathology report and it states high grade papillary urothelial carcinoma with invasions into the subepithelial tissue.
Today was another cystoscope, and the surgical area that was treated with BCG and Interferon looks good, but more cancer. Will be scheduled for surgery #6.
Other than BCG and BCG with Interferon; do you know if they are still using radiation for bladder cancer? My bladder will not relinquish the cancer.
Hi Patti
Sorry about another recurrence. The link below gives information and studies regarding BCG failure. I would think that you and your Uro will discuss your options after your next Turbt and see what the pathology report shows in terms of stage and grade. They do still use radiation for bladder cancer but not normally for your stage which so far has been non-muscle invasive.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792453/
I will you all the best with your upcoming surgery,
JackHellp pmw
This is a long shot but worth it if it helps you. If you smoke, stop. Smoking is the #1 cause of bladder cancer and I actually know of people who couldn’t get rid of their bladder cancer after years of trying with surgery, mitomycin, BCG and whatever else the uro came up with. Once they quit smoking, bladder cancer gone.
Other things you could try that may help: drink lots of water to keep your bladder flushed and give less time for any cancer cells to take root; stay clear of chemicals and this includes where you work (second biggest cause of bladder cancer is jobs that involve chemicals such as leather making/tannery and includes hair dressers now); eat lots of fresh fruit and veggies for those phytochemicals; stop drinking alcohol (there is research that links alcohol to cancer); stop eating processed foods especially cold cuts/deli meats as the World Health Organization has officially listed these as cancer causing.
If you don’t smoke, keep up the fight. Your uro is staying on top of it and is working hard for you and that is a good thing.
Most of all, stop swinging from the rafters with stress. It takes up too much time and energy and just leaves you with bumps and bruises from hitting your head on the rafters. Let alone the slivers!
Take care
CherylHi Cheryl,
Thank-you for your reply. Never smoked a day in my life as I was highly allergic to tobacco. Tried to stay away from second hand smoke as much as I could, due to this allergy. I drink lots of water and green tea, and never worked in a chemical environment. Have not eaten processed meat in years and always maintained good eating habits, no processed foods. Very rarely drink, and maintain a positive outlook on life, keeping myself busy. My uro thinks it is because I am the second hand smoke generation, and the different levels of government started the non- stop smoking reguIations during my teenage years.
The hospital I have been attending is the Ottawa General and research is being done on stress and cancer. I am beginning to think it may be all that polluted air breathed in until the age of 12 from the steel mills in Hamilton, Ontario.
I have the attitude of keep on trucking and enjoy life to the fullest each day.
Regards,
Patti
Hi Patti:
I grew up in Grimsby near Hamilton and in addition to being near the steel mills, I swam in Lake Ontario, Erie and Huron as a kid. I was also exposed to a lot of pesticide spraying since I grew up in a fruit growing area and the farmers would spray willy-nilly (including DDT) even as we kids were riding by or through the orchards on our bikes. I got soaked with spray many times and no one thought anything of it. I broke out in strange rashes many times probably because of the exposure to the sprays but it was always put down to being a heat rash. Who knows what it actually did to my body.
As I have mentioned earlier in previous posts, I’ve never smoked but was around second hand smoke all of my childhood. Both my parents were heavy smokers and later my two brothers joined in so there were four smokers in a pre WW2 home that was less than a 1000 square feet in size. You can imagine what that was like. I remember the air being literally blue in the evening with all four smokers going at it. I would usually stay upstairs in my room with my window open and a rag under the bottom of my door to keep the smoke out. Most of my friend’s parents smoked so that often meant going from one smoky house to another. I had to endure smoking in the workplace for several years until it was finally banned.
Today, I try to eliminate as much chemical stuff in my life as possible by eating a decent diet, using natural personal care and cleaning products.
I also think that stress has something to do with getting cancer. For many years I was under extreme stress and also had a very negative mindset. After being diagnosed and getting through surgery and BCG treatments, I learned a lot about forgiveness and letting go. My stress levels went down immensely. Taking up yoga really helped too. I handle stresses much better now.
As a final note, I did hear one of the urologists speak at our Calgary patient meetings about some people having a slow system when it comes to eliminating toxins and that can possibly be a cause for cancer. That to me makes a lot of sense because as we know some people can smoke like chimneys and do all kinds of other cancer causing behaviours and not get sick and yet some of us that do all the right things still do. The colon and bladder are two repository sites for elimination and if there are serious toxins in our stools and urine, I can imagine that that would cause us some risk. I’m only speculating here, and voicing my thoughts. I’m not a doctor and have no proof of any of this. ((((HUGS))))
Hi MarySue,
Similar to you, I grew up in southern Ontario, Brantford, Dundas and Hamilton. I also swam in Lake Ontario and Lake Erie. At the age of 12 the family moved to Ottawa. I returned to Hamilton to attend McMaster University for an undergraduate degree. I have tried to maintain a healthy lifestyle, with good eating habits and regular exercise.
Besides my medical doctors, I also see a Doctor of Naturopathic medicine. This past week she gave me an interesting article on the chemical Tetrachloroethylene (perchloroethylene). These chemicals are used in drycleaning, textile manufacturing and vapour degreasing in metal cleaning operations. Cocentration of the chemicals have been detected in ambiant air and drinking water. And these chemicals contribute to bladder cancer.
You are right on the mark about stress and cancer. The Ottawa Hospital is doing research into stress and how it contributes to cancer. Surgery 6 is scheduled for Sept. 19 and I am happy it is happening fast. Thank-you for the information from the Calgary Urologists discussions. I will discuss this with my Naturopath and do some toxin cleansing.
Enjoy the rest of your weekend and thank-you for the hugs
Cheers,
Patti
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