Calendar for September 2021 – Who is up for Surgeries, Treatments, and Tests?

[marysue]

Hi Everyone:

September is upon us and with that the return to school and getting back into routine.  The summer had many challenges for a lot of us especially that we are still dealing with the pandemic and in some regions of the country we had heat, drought and fire smoke to deal with as well as bladder cancer.  I will be glad for the fall and hopefully that will bring some much needed rain as well as other good news re the pandemic and maybe just maybe some interesting news regarding a new development with bladder cancer.  As I write this, a T-storm is approaching. Hallelulah!!  It is raining!

For some, the journey with bladder cancer is just beginning, others are somewhere in the midst of it all and still others like myself are post treatment and have gotten on with life.  No matter where you are in this journey it will have an enormous effect on your lives.  As I have done every month, I send my positive thoughts and prayers to all and ask that others do the same for those that are working their way through this journey.  Many blessings and God Speed to all.  ((((HUGS))))

 

[ChrisE]

I am about to go for treatment and they damaged the valves the first time. Need to talk to someone knowledgeable about options.

[marysue]

Hi ChrisE:

What kind of treatment are you referring to?  Chemo?  BCG?

I strongly recommend if you have not already done so, call the toll free number and leave a message to see if there is anyone on the roster that can help. Someone will call you back.  Otherwise I suggest getting a second opinion about your situation from another doctor.

I’m sorry to learn that you suffered complications.  Not fun.  Let us know.  (((HUGS))))

[dot]

I am scheduled to start BCG treatments this month for a recent diagnosis of CIS.

I have a previous history of MIBC which, I believe,  was successfully treated with trimodality bladder preservation theraphy (TURBT followed by chemotheraphy and radiation).

While my emotions have been all over the map – I am  cautiously optimistic.

 

 

[Danielle]

I am scheduled for my 2nd TURBT on the 16th.  My diagnosis from Pathology report of my first TURBT, June 17th, stated predominantly a “Low Grade Papillary Urolthelial Carcinoma, however there were some areas that satisfy the criteria for high grade”.  It was non invasive.  My understanding is a repeat TURBT is necessary to determine if there is a recurrence and what treatment, if any.  I would gather another biopsy is done if there is evidence of another tumour or not….and if not I guess they biopsy more tissue?  Starting to get a little anxious now in anticipation of what is going to be found.  I’m not looking forward to the discomfort afterwards for a few weeks, but at least I know what to expect this time….some uncomfortable frequency and urgency, but like I was told, almost exactly 6 weeks after the last surgery, I felt more normal in that area.

[marysue]

Hi Dot:

You are the first person that I’ve met online that went the bladder preservation route and then has followed up with BCG because of a recurrence.  While  not fun, this is probably unusual to say the least.  BCG does have a good track record for treating CIS so I’m  wishing you all the best for your upcoming treatments. Hopefully this will be the last round of anything that you have to do for bladder cancer.  Positive thoughts and prayers coming your way.   ((((HUGS))))

[marysue]

Hi Danielle:

Best of luck for your upcoming TURBT.  As you know it is often the protocol for some doctors to order a repeat TURBT either to increase the chances of “getting it all” and/or confirming the original diagnosis.  Given that you had a “mixed” diagnosis of low and potentially high grade, I’m suspecting that your doctor is doing his due diligence by having you undergo the second surgery.

When I was diagnosed with bladder cancer for the first time in 2008, repeat TURBTs were not usually the thing.  I have conversed with others since and in the end the majority felt that it helped with their situation.  It was the same with BCG treatments.  At the time people were usually given 6 treatments of once a week for 6 weeks and then it was a wait and see after that.  The protocol for many patients has since changed to a set of 6 treatments, followed by 3 sets of 3 (once a week for 3 weeks) usually over a year’s time. Research has shown that it has increased the odds of success.

I think the long and short of what I’m saying is that the treatment protocol has and is continuing to evolve as research reveals more data about bladder cancer.  And yes, if you do unfortunately experience a recurrence in the future, it will most likely require a repeat TURBT.  That is what what happened to me when I had a minor recurrence in 2010.  I had the second TURBT followed by more BCG which worked the second time.  I’ve been cancer free since September 2010.  So, I’m hoping and praying that you will experience success following this surgery and that it will help your doctors determine the best treatment option for you.  ((((HUGS))))

[Danielle]

Thanks Mary Sue,

As always, you make feel better.  Your story gives me hope.  I will keep you posted.

Danielle

[Danielle]

Hi Mary Sue,

I had my 2nd TURBT last Thursday, the 16th, and all went well.  My urologist said she did some “punch biopsy” ….not sure what that is; I was in recovery and still a little groggy so don’t remember much.  She did say she removed a very small 2 mm  polyp, but rest of bladder looked good.  I am seeing her October 20th to discuss pathology results and follow ups with treatment or not, but said she would contact me before when she gets the report in about 10-12 days.

She didn’t indicate whether noninvasive, so not sure what to think and whether BCG treatment is warranted.

I feel good, not as much discomfort as last time.

So the wait continues as I anticipate the results once again, but things appear to be positive.

Danielle

[marysue]

Hi Danielle:

I’m glad to learn that all went well and that the news is looking like it will be positive.  I’m not sure what “punch biopsy” is either but my best guess would be that she took some random samples most likely from surgical sites from the first TURBT.  I would ask for clarification at your next appointment.

I don’t think she will give you much more information until the biopsy results are in and then she will know what your situation is and what sort of treatment if any, to recommend.  Most urologists don’t like to second guess what the situation could be because it causes a lot of unnecessary stress for the patient and can undermine the trust in their doctor if the doctor speculates on the situation and then it turns out to be something far different.  Many of us have said that waiting for the biopsy results is one of the hardest parts of the bladder cancer journey.  Keeping busy is one of best ways to counter the mental anxiety.  Easier said than done, I know.

When I went for my first cysto in July 2008 and saw the tumours in full living colour, my then uro wouldn’t even confirm that it was actually cancer and just said that it looked like potential cancerous tumours and that I would have to have surgery to remove them so they could be sent to be biopsied and then we would know more once results came back.  Thinking back about how he acted, I realize that he probably did believe that they were cancerous but was trying not to say too much at the time.  I later figured out that he is the type of doctor that protects his butt and won’t say anything until the proof is right in front of him.  He also doesn’t seem to have the most communicative style.  Getting full info out of him was like trying to get blood out of a stone. The uro I have now is more talkative and seems to be able to figure out much better what type of information each patient is able to handle. He is also much better at explaining things and answering questions.

Some people need to get the info one small piece at a time whereas some function better with as much of a scenario as possible.  I am of the latter.  Not knowing causes me far more stress than if I know the possibilities of what something could be with the understanding that I do have to wait for test results to confirm.  Case in point – back in 1988, I was having severe attacks of abdominal pain.  After questioning and examining me my family doc put it down to either gall bladder stones, a rumbling appendix or a duodenal ulcer.  His money was on the gall bladder but he sent me for tests for all 3.  The results showed that he was right.  I had multiple gall stones.  The knowing of the possibilities of my problem somehow gave me some measure of peace in a really weird way.  I truly think that doctors should ask their patients upfront about how much info they want at a time – do they want a full report/speculation or just the Cole’s Notes version.

Anyhow, for better or worse that is my take on this subject.  Again, good to know that everything went okay.  I wish you a speedy recovery and prayers and positive thoughts for a good outcome.  ((((HUGS))))

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