Low grade to high grade

[concernedwife]

Hello, my significant other has been diagnosed with low grade non invasive BC. I’m wondering if anyone knows any statistics on low grade cancer recurring as high grade at the next cystoscopy? This is something we are concerned about at the moment. If it recurred as high grade, would that automatically mean it would be invasive? I’m so sorry, I’m so new to this and struggling to understand it with all the lingo and medical terms. Thank you in advance!

[Nightingale]

Hi Concernedwife,

Let me begin by thanking you for entrusting us with your question about your significant other.  I can tell you from personal experience, that my low-grade, non-muscle invasive bladder cancer recured 3 times, until  it finally stopped.  This was 12 years ago.  After the third recurrence, I started going in for cystoscopy every three months, then after 3 years, moved to every 6 months, and after another 3 years moved to once a year.  I no longer go in for cystoscopies, but get yearly blood work and urine sample tested to see if there is any sign of blood.  I feel very lucky and am eternally grateful that my bladder cancer has not returned thus far.

I started eating healthy with lots of blue berries and strawberries in my diet (mostly breakfast). I also drank a lot of green tea on a regular basis.  I have no evidence that they helped, but I became a believe in using natural methods to help stifle the cancer, and so far so good.

As you’ve detected, in my case the recurrence was not more invasive, and I should tell you that statistically, low-grade, non-muscle invasive bladder cancer does have a higher recurrence rate.

I am going to stop here and wish you and your significant other the best of luck and hope that if it does recur, that it be low-grade and non-muscle invasive.

Let’s see if others chime in and share their story.

My best,

[Joe]

In short, low grade will stay as low grade even when recurrence happens.

The prognosis of non muscle invasive bladder cancers depends upon how high risk of tumor or tumors progress into muscle  tissue of bladder.  There are three tissues, epithelial tissue, connective tissue and muscle tissue which made up bladder.   The stage is Ta or To if tumor is found only in the epithelial tissue, T1 if the tumor already progressed to the connective tissue and T2,T3, T4 if the tumor progressed to the muscle tissue. Usually, the prognosis gets worse as tumor progresses to deeper tissue.   High grade means that cells observed under microscope by pathologist are really ugly looking.  Low grade cancer cells do not  look as bad as high grade cancer cells.

High grade tumor tends to progress to muscle tissue and can be life threatening  if they are not treated aggressively as cancer cells can migrate to other organs via lymphatic vessels and blood vessels in the muscle tissue. Low grade tumors are usually found in the epithelial tissue only and low grade cancer cells usually do not move beyond the basement layer of the epithelial tissue. So, it is not life threatening.

It is known that recurrence rate of low grade tumor is high, i.e. can be as high as 50% -70%, but the 15 years progression free survival rate is 95% according to the study by MD Andersons in Texas –  a very well known in cancer treatment and research.

So, you dot not need to worry much.   Your urologist likely recommends you that your bladder is checked by cystoscopy regularly without additional treatment such as BCG.

In recent years, technology has advanced for DNA analysis.  In 2015, as a part of human genome project, scientists discovered over 300 genes are associated with muscle invasive bladder cancers.   It turned out high grade tumor has similar gene mutations as muscle invasive bladder cancers, also low grade bladder cancers have different gene mutations compared to high grade tumor.  So, in these days,  low grade non muscle invasive bladder cancer and high grade / muscle invasive bladders are considered different type of cancers.  The figure below shows that low grade tumor has high rate of FGFR3 gene mutations but low rate of TP53 gene mutations but high grade/muscle invasive bladder cancers have high rate of TP53 mutations.

 

s.

 

 

[marysue]

Hi Concernedwife:

I concur with what has been said.  The majority of low grade tumours tend to recur as low grade tumours.  Low grade tumours generally do not progress to become muscle invasive and life threatening. Others have also told me that low grade tumours seem to recur more often than high grade tumours.  I have heard urologists refer to them more as nuisance tumours because of their frequent recurrence.  When it comes to additional treatment with low grade tumours many uros will take a wait and see approach before having a patient embark on BCG or any other type of bladder treatment.  Sometimes if low grade tumour recurrences become persistent then a urologist may recommend BCG immunotherapy bladder instillations or another type of treatment.

All that being said, I do know of people that have presented with both high and low grade tumours at the same time and yes, have had high grade tumours on a future recurrence.  However, the percentage of this happening is fairly low.  The main thing is to have regular checkups so that any recurrences will be caught early and dealt with.  That is the reason for frequent checkups in the first two years when the chance of recurrence is at its highest.  If a patient stays clear for 2 years then they are often moved up to checkups every 6 months and then if clear for another 2 years then moved up to annually for at least 10 years.  If there is a recurrence the clock is set back and cystoscopy check ups will usually go back to every 3 months.

Personally, I have dealt with high grade bladder cancer since 2008.  I had surgery to remove several high grade tumours and that was followed by 6 BCG treatments.  I was clear until nearly 2 years later when a single high grade tumour was discovered on the top of my bladder at my cystoscopy check up.  I had another surgery (TURBT) to remove the tumour and that was followed by 15 BCG immunotherapy treatments.  I was then clear for 12 years and just had a recurrence this past fall.  Even though it was another high grade, it was caught very early thanks to me having regular checkups so my prognosis is good.  I had another surgery and am in the process of another 15 BCG treatments.  Hopefully it will be gone for good this time.

While high grade is more concerning than low grade it does not mean it is automatically muscle invasive or a death sentence.  As mentioned, the key is to catch it early and that is best done by regular cystoscopy checkups. Yes, the risk for progression is definitely there but so far for me at least BCG has helped me survive.  All this being said, I recommend for the moment that you focus on the “good news” that it is low grade and go from there.

Bladder cancer is often referred to as “the roller coaster of emotions” due to all the recurrences.  And yes, the lingo and terminology takes time to learn.  No need to apologize.  We have all been where you are now.  Please do not hesitate to ask questions.  No question is a dumb question.  I hope my commentary helps.  Take care and best wishes.  ((((HUGS)))

[Author]

Posts