Just had first Turbt – Large tutor 2.5 cm

[Carson]

Just had my first TURBT on June 9th at Rocky View in Calgary.

It was a large tumor over 2.5 cm.

Now to heal up and await the pathology report!

Hoping and praying the treatment options will not be impacted by the size of the tumor.

[Nightingale]

Hello Carson,

First – I wanted to let you know that I moved your post to start this new thread so that your information is not lost under the post and replies that Manon received in her’s

Second – I hope that your pathology report comes back in a favourable way.  I am glad your Urologist did not speculate on the type of cancer and is relying on the Pathology Reports to tell the story.  Saves a lot of worrying.

If you have any questions at all, feel free to post them as a reply to my post and I’m sure you’ll get responses from other members of the Forum.

Please let us know the result of your Report.

My best,

[Joe]

Hi Carson,

As far as I know, the only time the size matters in terms of the treatment options is when the biopsy result of tumor samples given to the pathologist is low grade non-muscle invasive bladder cancer (LG NMIBC), which is about 50% at the time of initial diagnosis.   Canadian Urological Association (CUA) guidelines for NMIBC recommends the treatment based upon risk for recurrence and progression, especially progression as it can be life threatening if it is not treated right.    LG NMIBCs are divided into two risk groups – low risk and intermediate risk.  The recommended treatment for low risk NMIBC is regular surveillance by cystoscopy. The recommended treatment for intermediate risk NMIBC is one year treatment with intravesical BCG or intravesical chemotherapy.   The low risk NMIBC is defined as a) it is not recurrence, b) it is solitary tumor and c) the size of the tumor is less than 3 cm.  So,

Note that the guidelines by CUA are guidelines to urologists.  Ultimately,  your urologist decides what is the best treatment based upon the guidelines and his or her clinical experience, and with possible your input.   In my case,  I was diagnosed with intermediate risk NMIBC, with 2.3 cm.  My urologist did not say it was a solitary tumor. All my urologist said as “big”.  I knew the size of the tumor from CT scan before cystoscopy.   Because the hospital I was treated was a local hospital, the hospital was using still old grading classification, i.e. G1,G2, G3.   I was diagnoses G2.    G2 can be low grade or high grade in the current grade classification.   My urologist opted for surveillance by  regular cystoscopy.  So far, cystoscopy did not find tumors.   I could have been treated wit intravesical chemotherapy or BCG if  I had a different urologist.  Had I been treated wit a large hospital or a university affiliated hospital,  I would have been diagnosed with LG or HG, which made a  difference in the treatment option if the pathologist  had decided my tumor as HG.

best

 

 

[Carson]

Thank you for moving my post to the appropriate area.

Here is the info from the CT scan result on the size of the tumor (cut and pasted):

The bladder demonstrates polypoid lesion identified near the left. UVJ measuring up to 3.1 x 2.5 x 3.3 cm. The underdistended bladder otherwise appears unremarkable. The prostate demonstrates some central calcifications.

I am just a few days out from the day surgery, and already starting to feel the anxiety of the waiting game on the pathology report.

 

[Carson]

Thank you for the information.

Here is the dimensions from the CT scan report (cut and pasted):

The bladder demonstrates polypoid lesion identified near the left. UVJ measuring up to 3.1 x 2.5 x 3.3 cm. The underdistended bladder otherwise appears unremarkable. The prostate demonstrates some central calcifications.

 

The anxiety level on the waiting for the pathology report is already on the rise.

Trying to distract myself from over thinking this to the extreme.  Your information helped a lot, thanks again.

 

[Nightingale]

Hello Carson,

There are a couple of options for you moving forward to help with your anxiety.  One is to talk with a peer support volunteer 1:1 and ask all the questions you want, and hear what the volunteer has been through.  The other is to join a Support Group near you.  I run the Hamilton Support Group using Zoom and have folks from various parts is southern Ontario join.  We have a great group of folks who are very helpful.  Our next session is on Thursday June 23 and our guest is a BCC volunteer who contracted the disease at age 38.  She will be sharing her experience both physically and mentally.  You’re welcome to join.  If interested let me know and I’ll email you the zoom link.

My best,

Btw, there is a list of cities that host Support Groups – https://bladdercancercanada.org/en/get-support/

 

[marysue]

Hi Carson:

I too had a larger tumour the first time around in the midst of several little ones.  It scared the crap out of me but it turned out to be a shallow tumour albeit high grade.  Hang in, we’re praying for the best.  I know how anxious you feel.  We all do.  Waiting for the pathology report is probably the hardest part of the journey.  Keep doing what you are doing.  Distract yourself with activities and good things.  Binge watch on Netflix or dive into a good novel and lose yourself in it for a few hours.  (((HUGS)))

[Carson]

Wow!

Over a year since my last update, time flies.

I had several rounds of BCG treatments, with each treatment causing some complications.  After my third round, my arthritis got so bad I was not able to get out of bed, my kidney function had dropped to less than 30% and I experienced some further complications with medication conflicts causing some “unusual” side effects as my family Doctor described it.  This all went down starting in Feb of 22.

Since that time, further treatments were put on hold in order to get things back under control.  I recently had a scope, and at this time there doesn’t appear to be any regrowth.  My urologist has scheduled further once a month treatments (not BCG) beginning at the end of June.

On the personal side, I recently lost a friend who had been battling bladder cancer, but due to his being much more advanced, he was not able to win the battle and I attended his celebration of life on May 13th.  I met this person during treatments/surgeries, we lived in the same neighborhood and car pooled to treatments whenever we could.  Over time I became good friends and we did some golfing, bowling and played billiards on a regular basis.  I miss his sense of humor and support.

This is all for now, I will try and update as I start this new treatment program.  Take care everyone.

[marysue]

Hi Carson:

Thank you for updating us.  I’m sorry to learn that you have had many challenges with BCG treatments.  It’s not unusual. BCG and chemo agents are toxic so one has to balance the risks and benefits of treatments.

This time around I too, did not tolerate BCG as well as the previous two times.  It may have been due to having Epirubicin put into my bladder immediately post op and/or that this was a different type of BCG than before.  At any rate I am on hiatus from further treatments due to intense bladder pain and inflammation.  I have a cysto booked for mid September and what happens going forward will depend on what is seen at that time.  I told my doctor and the BCG clinic that I’m open to trying one more round in the fall if I’m clear of cancer and my bladder is healed up. That being said, if my bladder flares one more time that will be it for me for BCG treatments for a very long while.

Back in March inflammation was still present at the time of my cysto and I went ahead with the next round of BCG despite that.  My uro gave me the go ahead.  It was a hard lesson learned.  I now know that I cannot have BCG if inflammation is present.  For me, the level of pain caused by BCG when inflammation is present is too great.  I told the BCG nurse that I was more concerned about a busted bladder from the BCG than I was about any recurrence.  So far my kidneys have held out okay.  They did act up with the Epirubicin so I’m not sure I would ever do chemo instillations instead of BCG. If I did I would insist on follow up lab work to monitor them. The Epirubicin caused way more intense inflammation than the BCG did.  But that is me.  All we can do is try our best and take it from there.

I’m sorry that you lost a friend to bladder cancer.  That makes it a bit tougher.  Hang in and best wishes for going forward.  ((((HUGS))))

[Carson]

Hi MarySue,

Thank you for the reply, it is good to know that I am not the only one who has experienced problems from BCG treatments.  It means a lot to me.

I too had inflammation.  My legs/knees/ankles were so inflamed that I could not walk without assistance.

The medical professionals at urgent care thought I had gout.  Further testing by hospital staff discovered the kidney problems and eventually the diagnosis was changed to rheumatoid arthritis.

The medication that I was prescribed for the gout, caused further conflicts/complications which made matters worse.  Thankfully, things are now back to almost normal.

Hopefully this once monthly treatment schedule will allow time for my body to heal up a little between treatments.

On a positive note, I recently met a lady who has bladder cancer.  She has been in remission for just a little over 2 years now, so there is hope!

Hoping for the best, preparing for the worst.

Take Care

Carson

 

[marysue]

Hi Carson:

Many people have inflammation in other parts of their body other than the bladder when they are doing BCG treatments.  I wish doctors knew more about it and would pay more attention to it. When I did my first set of 6 back in 2008 and later a second set of 6 plus 3 sets of 3 in 2010-2012 I didn’t experience as much bladder inflammation.  It was more like bladder irritation which my current uro always calls “BCG cystitis”.  However I did feel like I had a whomping dose of the flu after each weekly treatment.  A couple hours after getting home I’d always pass out for a couple of hours.  I’d have some fever, chills, fatigue and horrible muscle/joint pain.  But Tylenol and later Aleve kept it down to a reasonable level. On top of that I was in menopause and it made my hot flashes and night sweats ten times worse. I was told by my uro and GP I just had to ride that out as they didn’t think that HRT (which was getting bad rap in the news at the time) and BCG would be a good mix.  I also had inflammation in my intestines which caused irritable bowel like symptoms.  Other inflammatory responses included my eyes and gums.  My eye doctor gave me drops and my dental hygienist gave my gums a good working over which really helped.  I now use a version of gum detoxify toothpaste which works wonders. It took me the better part of the rest of 2012 to shake all the side effects.  The muscle/joint pain and fatigue lingered for months.  I’d have good days and then some really random not so good days.  But I would just take Tylenol and if needed have a nap that day and that seemed to work.

This time around (2022-23) as mentioned my side effects were mostly bladder pain and inflammation.  I did have a whole host of side effects after the Epirubicin and there is no way in hell I will ever consent to having that drug in my bladder again.  I was told that I would most likely experience some fatigue and bladder irritation.  Well, my bladder inflamed to a massive degree, I developed a post op Group B Strep infection plus a bad yeast infection.  That took two weeks and two rounds of antibiotics to clear it.  Two weeks after my surgery I lost half my hair.  I was told because the chemo was in my bladder I would not experience hair loss. Ha!  I lost so much hair that it clogged the shower drain and lots of hair got all over the house.  My uro had no answer for that one but I did learn from a video of female uros posted here on the BCC website that they had discovered that women do sometimes lose hair when chemo is instilled in the bladder.  The only conclusion that my uro and I could think of was that because of all the inflammation the chemo went systemic and that is what caused the hair loss.  I was also nauseous for 2-3 weeks post op, had intestinal inflammation and sore gums.

I also believe that the Epirubicin was the reason I could not go pee after the catheter was removed the next morning post TURBT.  I felt so numb and swollen down below. However, I didn’t realize this until a few days later because I still felt so drugged up the next day.  The previous two times I only had the TURBT and within 2-3 hours of removing the catheter I could pee no problem. I was also far less drugged up.  I did not need the stronger pain killers or anti nausea meds.

I do have 6 more BCG treatments to do if possible.  I was originally to do the set of 6 followed by 3 sets of 3.  I managed to do 5/6 and then dropped the last treatment due to bladder pain and inflammation.  It was 10 weeks from #5 to #1 of the first maintenance set and I still had inflammation in my bladder.  I managed 2/3 at a quarter dose but decided the pain was too great to bear so I dropped the last treatment.  I feel pretty good now and am fairly sure that the inflammation is healed or very nearly healed.  I can now drink caffeinated tea without issue and the bladder spasms are almost 100% gone.  I can almost make it through the night without needing a trip to the bathroom. I was due to start the second maintenance set this Friday but decided to cancel it in early June because I was still having issues at the time. So I made the executive decision to give myself the summer to recover and will deal with it in the fall when I see my uro in mid September.  If I’m all clear, then I will discuss with him the best schedule for doing the remainder of the treatments.  Perhaps a monthly treatment for 6 months might be a better option if he agrees that it is okay in my case.  As I told my uro and the clinic I’m trying to strike a balance between doing enough BCG to hopefully prevent recurrence but not bust up my bladder in the process with too much inflammation.  These are not easy decisions to make and for anyone reading my post please do not make any decisions for your health based on what I did.  Make those decisions after a conversation with your medical team.

And Carson, the set of 15 BCGs that I did in 2010-12 despite the challenges, did buy me 12 cancer free years so I’m hoping that despite the setback last year, I will get it done this time and it will be the last time I do this.  Here’s to hoping for both of us.  (((HUGS)))

[Joe]

Hi Carson,

It is good to know that your urologist decided to stop BCG treatment after your experiencing rheumatoid arthritis after BCG treatment.   Clinical studies indicate about 1% of patients with BCG develop reactive arthritis.    They do not know  exact mechanism but in general understood that immune cells, especially Killer T-cells (CD+8) which are induced by BCG instillation end up attacking not only cancer cells in bladder but also cells in joint for some patients.  I know a couple patients who developed reactive arthritis after BCG treatment.   One patient developed very severe flair up  during the 6 weeks BCG induction treatment and had to be hospitalized.  The urologist stopped BCG.  Another patient developed reactive arthritis during the 2nd round of 3 weeks maintenance treatment.  Urologist and patient decided to hold the BCG treatment for 3 month and reduced the dosage to 1/3, but after the first BCG treatment the patient developed flair again.   So, it is possible that you could experience another flair up if BCG was given at the end of June.

The treatment you will be receiving likely intravesical chemotherapy.  It would be likely Gemcitabine.  Ideal intravesical chemotherapy for those who cannot tolerate BCG side effects is  intravesical treatment with the combination of Gemcitabine and Docetaxel which is becoming the standard treatment protocol in academic hospitals.   Patient will be first treated with Gemcitabine holding it 1 hour.  After Gemcitabine is voided, Docetaxel in instilled and held for about 1 hours, then voided.   Community hospitals may not be equipped with this treatment protocol.

Incidentally, BCG treatment is to kill cancer cells with immune responses which are invoked by BCG.   Intravesical chemotherapies kill cancer cells with different mechanism of action.    Chemotherapy drugs intervene a cell cycle. Cell cycle is the process where a cell divides into tow daughter cells.  A cell cycle consists of Growth 1 phase (G1), DNA synthesis phase (S), Growh 2 phase  (G2), and mitosis (M) phase.    Gemcitabine intervenes DNA synthesis  (S) phase  by  preventing DNA to split to two single strands just before DNA replication.  Docetaxel intervene Mitosis (M) phase by interrupting formation of microtubules.   When a cell cannot divide,  our body has mechanism to lead the cell to die.  This is called Apoptosis (self death).    Chemotherapy drugs  intervene cell divisions of cancer cell and normal cell.  Because cancer cells constantly divide, theoretically every 24 hours.  But normal cells of the lining of bladder divide every 100-200 days.  So, more cancer cells die in the same period compared to normal cells when chemotherapy are instilled into bladder.

Chemotherapy should not invoke massive immune responses as BCG treatment does, so you should not experience rheumatoid arthritis.

Please let us know what type of chemotherapy drug will have been used.

best

[Carson]

Hi Joe,

I had my first treatment on of Gemcitabine on June 22nd.  The current schedule is monthly treatments for the next 24 months which I was informed is considered “maintenance” treatments.

It was almost exactly as you described, other  than the timeline of the infusion.  I held the first drug Gemcitabine for one and a half hours, then void the bladder.  The second drug was then infused and I was allowed to go home with instructions of voiding the Docetaxel at the 2 hour mark.

So far, so good.  I experienced slight bladder contractions, and minimal pain in the lower stomach area, which is a breeze compared to the effects I was experiencing with the BCG treatments.  I even managed to engage in a round of golf 2 days after treatment!

Thank you so much for the explanation of how/what happens during and after treatment.  I am grateful to know what is happening inside my body during this time.

I also met with my arthritis specialist on June 26th.  I was informed that the arthritis is not likely to subside, and further treatment will possibly have to be maintained for an extended period, perhaps for the rest of my life, which I consider a small price to pay to ensure the cancer is under control and possibly eradicated.

Carson

[Joe]

Hi Carson,

Thanks for sharing your experience with GEM/DOC treatment.  It is a very good information for us as the protocol has been adopted  rather recently , i.e. August, 2021 at BC Cancer agency as primarily for BCG unresponsive patients and BCG intolerable patients.  For BCG unresponsive or BCG naïve patients, the treatment protocol is 6 weeks induction treatment and followed by monthly treatment.   In your case, you already had adequate BCG treatment, i.e. 6 weeks induction and at least one 3 weeks of maintenance, and you were not BCG responsive, so your urologist must have thought that the maintenance treatment was sufficient.  BC Cancer Agency protocol for GEM/DOC says 1-2 hours for GEM and DOC.   GEM/DOC protocol was initially tried by University of Iowa when intravesical chemotherapy drug Mitomycin became shortage in 2009.   They had 1.5 hrs for Gem and 2.o hrs for Doc,  the protocol at your hospital reflects the original protocol  used at University of Iowa.   Dr. Michael O’Donnell, MD, Prof& Director of Urologic Oncology at University of Iowa has been known as a early Guru of  NMIBC along with Dr. Lamm of University of Arizona.   He led originally the study of GEM/DOC treatment protocol.    GEM/DOC is considered superior to Immunotherapy Keytruda which was the FDA approved treatment for BCG.

One of the reasons that the University of Iowa team developed this GEM/DOC treatment protocol back in  was as replacement of BCG during BCG shortage as Gemcitabine an Docetaxel are readily inexpensive, readily available.  The recent study published in American Urological Association Journal resulted the mean cost per patient at 2 years were US$12,363 and US$ 7,090 for BCG and GEM/DOC treatment respectively.  So, you dot have to worry about GEM/DOC shortage during your  2 years maintenance treatment.     I think you have chosen a very good hospital/urologist to look after your disease.

In terms the arthritis,  hopefully, the stoppage of BCG treatment improves the situation though the specialist indicated unlikeliness.   Adaptive immunity, i.e. Killer T-cells are targeted immunity such that it is supposed to attack only cells which express antigen (protein) which dendric cells obtained from BCG infected cells.   There are a few hypothesis why Killer T-cells attack joints.  One is that antigens which BCG infected cell express are carried via blood vessels and reached to joints.   Because Killer T-cells which are invoked by BCG treatment circulate in blood and attack any cells with the antigen, Killer T-cells not only attack cancer cells in bladder but also healthy cells in joints.   Anyway, an article published (2011)  in Reumatologia Clinica, the official publication of scientific Spanish Society of Rheumatology  says most patients with secondary Reactive Arthritis respond favorably to complete suspension of BCG treatment.  So, lets hope this will be your case too.

Seriously speaking,  I understand at least in BC, local hospitals are not offering GEM/DOC for various reasons.  From your explanation, it is not that much complicated procedure.  I hope GEM/DOC will be offered by local hospitals as it is only known effective treatment for BCG Unresponsive, BCG intolerance available in Canada.

Glad to hear that you were able to play a round of golf 2 days after treatment.  I don’t understand why everyone enjoy playing golf.  I played once at a company sponsored golf tournament.  My name was cold during the dinner reception after the game.  I was a beginner but I thought I played well that day, so I was expecting to receive the most improved player.  What I got was the player with most strokes.   I accepted the prize, which was a figurine of a player trying to bend a golf club with both hands, biting the golf club.   Since then, I have not played much.  🙂

[Author]

Posts