Homepage – Forum › Forums › Newly Diagnosed With Bladder Cancer › Reoccurrence
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Joe.
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September 13, 2021 at 11:57 am #41948
kait
Participant27 year old female diagnosed with non-invasive bladder cancer , just recently diagnosed with first reoccurrence at 29.
First time around treatment was TURBT followed by routine scopes.
However this time around treatment will be TURBT followed by BCG.
Shortly following my first TURBT I had an autoimmune flare up (have since been referred to a rheumatologist) I had never experienced this before and we believe it could have been the bodies natural reaction following the bodies traumas.
Has anyone experienced this type of chain reaction?
Am I receiving the best course of treatments?
Was never referred to an oncologist the first time around, is this normal?September 13, 2021 at 8:08 pm #41949Nightingale
KeymasterHi Kait,
Like you I was diagnosed with (low grade) non-invasive BC 11 years ago. Mine however came back 3 times within approx 6 to 8 months, and I remember my Urologist telling me after the 3rd recurrence that if it came back again, I would need to undergo the BCG treatment. Thankfully it did not…whew!
Out of curiosity, was yours low grade?
Your treatments sound reasonable, but as I am not a medical professional I will recommend you consult with your family doctor.
Let’s see if anyone else chimes in.
My best,
September 13, 2021 at 8:46 pm #41950marysue
ParticipantHi Kait:
Welcome to Bladder Cancer Canada but sorry that you have been diagnosed with BC and that you have experienced a recurrence. You are awfully young to be dealing with this kind of cancer.
First off, to let you know that bladder cancer unfortunately has a very high recurrence rate somewhere in the neighbourhood of 50-80%. Secondly, depending on the diagnosis (usually low grade non-muscle invasive bladder cancer) some urologists will take a “wait and see” approach rather than prescribe any follow up drug treatment first time around and just monitor a patient with regular scope exams like what you have been doing. Sometimes this decision can be because of a patient’s other health concerns as well. Since you mentioned that you have had an autoimmune flareup that may also be a factor in what decisions will be made around your treatment protocol. If a recurrence happens then the doctor will prescribe BCG treatment if they deem it appropriate.
I too, was diagnosed with non-muscle invasive bladder cancer and thought that I would be referred to an oncologist but have since learned that in the majority of cases an oncologist is usually only brought into the picture when systemic chemo/radiation is going to be a potential choice of treatment and/or the bladder cancer is more advanced.
That being said I suggest bringing up your concerns with your urologist: (This is what I am reading in your message and suggest the following)
a) Does my autoimmune condition have any bearing on the treatment protocol? If you are prescribed any meds from the rheumatologist this needs to be discussed with your urologist as it may or may not affect the choice of drug treatment for the bladder cancer. BCG does interfere with some meds.
b) Should an oncologist be brought in as a consult for my treatment protocol? Why or why not? Asking this will get you a fuller understanding of your medical needs.
c) Getting answers from the rheumatologist will also help expand the picture. I’m suspecting that you need confirmation as to whether the autoimmune flare up is as you mentioned from the body trauma or do you have an as of yet undiagnosed autoimmune disorder and the first flare up was triggered by the bladder cancer surgery? Your rheumatologist may recommend tests of some kind to figure this out.
I personally don’t know of anyone that has had the reactions that you have had but someone may as of yet chime in here. It is not unusual to have other health concerns along with bladder cancer. Sometimes they are connected, sometimes not.
If you have had a thorough conversation with your urologist and are still not comfortable with his/her answers or recommendations you as a patient are within your rights to ask for a second opinion. You should be able to get a referral from your current urologist or family physician.
I hope my thoughts help. Best Wishes. (((HUGS)))
September 14, 2021 at 11:22 am #41951kait
ParticipantHey there,
encouraging to know it’s been 11 years since you’ve had a reoccurrence. Yes my first was a low grade. I am happy my urologist opted for BCG this second time around, to my understanding it can potentially give you longer between occurrences.
I hope you continue a healthy journeyall the best
September 14, 2021 at 11:26 am #41952kait
ParticipantThank you very much.
Definitely prepared for the reoccurrences as yes, I have read it has a high reoccurrence rate. I am hopeful that because I am so young the proper steps are being taken. I will do whatever I need to do of course. You raise a lot of good questions for me and for my rheumatologist I wrote all of those points down thank you.
I appreciate the feedbackall the best to you
September 14, 2021 at 3:27 pm #41958Joe
ParticipantHindsight BCG might not have been right treatment for you. From your description of treatment history, it seemed you were diagnosed initially with low grade, and that might be why you were put on surveillance by regular cystoscopy When there is a recurrence though depending on how long it was from the initial diagnosis, it is classified intermediate risk non-muscle-invasive bladder caner (NMIBC) from low risk NMIBC. Canadian Urology Association (CUA) guideline recommends one year of BCG or one year of intravesical chemotherapy (i.e., mitomycin or gemcitabine) to treat intermediate NMIBC. BCG treatment depends upon the immune response to kill cancer cells where intravesical chemotherapy kills cancer cells by directly going inside cancer cells, and prevent the cancer cells to divide and lead them into death. It is know that even intravesical chemotherapy invokes the immune response but not to the extent of intravesical BCG, thus has less side effects. It is noted that intravesical chemotherapy is also used for BCG intolerant, those who cannot have BCG because of side effects. So, hindsight your urologist might have chosen intravesical chemotherapy had the urologist had known ahead that BCG would have caused you an autoimmune flare up. I know a patient with rheumatoid arthritis, who had severe side effects after 4th round of BCG and the urologist halted BC treatment and the patient is on surveillance only now. I also a patient with rheumatoid arthritis, who were able to tolerate BCG without severe side effects. There was a paper as early as 2001 reporting cases which intravesical BCG and developed long-standing inflammatory arthritis. The paper was published in Israel and it reported four cases. Considering her population of 9 million, we should have 30 times or 120 cases in Canada too. Also, BCG side effects tend to get worse as the number of BCG instilment increases. Often urologists get additional training on oncology. My urologist spent two years oncology so his title is Urology-oncologist. I live in BC, and I have noticed that oncologists get involved for systemic treatment for bladder cancers, i.e. systemic chemotherapy, radiation, immunotherapy but not onset of a patient diagnosed with bladder cancer. You may want to get a second opinion from a large university affiliated hospital as I see that what treatment you will get is important so you will not develop permanent rheumatoid arthritis or auto-immune disease while you treat your bladder cancer. I have been told that experienced urologists can tell if the tumour is likely low grade or high grade. So, the CUA guideline recommends that if the urologist thinks it is low grade in the first cystoscopy before the first TURBT, that within 24 hours after the first TURBT, a single instilment of chemotherapy, usually mitomycin is administered, unless the urologist decides not to for some reason. This is supposed to reduce recurrence rate by 10% by killing potentially implanted fragments of cancer while the urologist scrapes the tumour. If the tumor does not look low grade, a single instilment of chemotherapy is not done because the patients will go through intravesical BCG or intravesical chemotherapy treatment anyway Now a days some urologists use En-block TURBT to remove the tumour in one piece to avoid fragments of the tumour implanting on the lining of the bladder.
best
September 15, 2021 at 10:03 am #41959Nightingale
KeymasterHi Kait,
Just to clarify, all of my reoccurrence happened within approx 8 months of being initially diagnosed 11 years ago. I have been symptom and cancer free since then…thank God!
Keep well, I think you’re on the right path, but do consult with your medical team, and if you’re not pleased, seek a second opinion from another medical professional. As indicated we are not medical professionals but can share with you our personal experiences.
My Best,
September 15, 2021 at 4:07 pm #41961Joe
ParticipantBC Cancer Agency ‘s monogram of BCG states it can cause arthritis/myalgia in 3-7%, cases and 0.4% severe cases. Since about 10,000 Canadians diagnosed with bladder cancer each year and 50% are high grade/CIS, which is usually treated with intravesical BCG. Accordingly it is roughly estimated that about 5,000 new bladder cancer patients are treated with BCG each year, and 150-350 patients develop arthritis/myalgia and 20 patients develop severe condition.
BC Cancer Agency’s patient handout says “muscle or joint pain may rarely occur” and as management it says “you may take acetaminophen (e.g., TYLENOL®) every 4-6 hours to a maximum of 4 g (4000 mg) per day or
ibuprofen (e.g., ADVIL®) for mild to moderate pain. Tell your doctor if the pain interferes with your activity”.http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/BCG_monograph.pdf
http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/BCG_handout_bladder_1Jan2012.pdf
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