Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › NMIBC Low Grade
- This topic has 14 replies, 3 voices, and was last updated 1 year, 5 months ago by
Gopal.
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AuthorPosts
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August 9, 2023 at 8:15 pm #45339
Gopal
ParticipantHi all,
I am 65, M, haven’t smoked in 27 years, vegetarian all my life, extremely active.
Following me noticing blood in my urine once (about 3 months ago), I saw a couple of Dr.’s who all brushed it aside and told me I had nothing to worry.
Not satisfied with that answer, I went to the local hospital emergency and a very caring Doctor saw me, and while she said for me not to worry, she referred me to a Urologist. With a quick cystoscopy he saw the bladder and in one week had me for a TURBT, and my pathology report cites:
- Papillary urothelial carcinoma, low-grade non invasive (pTa)
- Muscularis propria has been sampled
- Specimen consists of multiple pieces of tan soft tissue (less than 1 g)
I would appreciate any assistance in interpreting what this portends, with any examples of prognosis from members who had a similar type of tumour.
I feel so blessed to have found this amazing network.
You all are doing God’s work.
Another question: I feel so fortunate to have the best urologist anyone could have….is it appropriate for me to name him on this forum?
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This topic was modified 1 year, 9 months ago by
Gopal. Reason: Had to add one more bullet that I initially missed
August 9, 2023 at 8:58 pm #45341Nightingale
KeymasterHi Gopal,
Thank you for your kind words regarding the forum and for sharing your your story. It is a very good thing that you were persistent in following up until you got to see a Urologist. Sadly blood in the urine is sometimes misdiagnosed or taken lightly and the results can be bad. Like you I found my bladder cancer very early. Mine was PUNLMP a very low grade non-muscle invasive cancer. I am happy to report that I am now 13 years cancer free and hope to keep it that way.
I discovered the first traces of blood in my urine while running in the heat in Florida. When I returned to home to Canada I visited my family doctor who suggested I wait to see if it occurred again. It did about a month later during a 5 km race. I had a strong urge to pee and when I did, it was all blood. My family doctor immediately made arrangements to have me visit a Urologist in Hamilton and the rest is history.
May I suggest that you name the hospital you visited rather than the name of the Urologist. We typically try and keep doctors names out of the Forum. If you have any further questions, please feel free to post.
My best,
August 10, 2023 at 6:04 am #45342Gopal
ParticipantHi Nightingale, grateful to you and all members for your compassionate volunteerism. The hospital I was referencing in my post was Cambridge Memorial (Cambridge ON)
August 11, 2023 at 12:04 am #45351Joe
ParticipantHI Gopal,
You did good by going to ER.
Papillary urothelial carcinoma, low-grade non invasive (pTa)
There are three layers (Superficial, Intermediate, and Basal) in Epithelial tissue, which is the lining of the bladder. Ta means that the tumor has not broken through Basal layer.
There are two gradings (low grade and high grade) for non muscle invasive bladder cancer. High grade tends to be progressive, where low grade tends to be not progressive.
The treatment for TaLG is usually surveillance by cystoscopies only. Statistically, TaLG may recurr but will not progress below basal layer in epithelial tissue, so it is not considered life threatening. Cancer rise because of multiple mutations of key genes. We looked at genes which were mutated in LG and HG and each has different profiles in mutated genes, so generally speaking we can say LG and HG are different cancers. So, even when TaLG has recurrences, it is rare that the recurrence changes to HG. That is why the standard treatment for TaLG is TURBT + surveillance by cystoscopy.
Muscularis propria has been sampled
There are three tissue layers (Epithelial (Ta), Lamina Propria= connective tissue (T1) , Muscularis Propria=muscle tissue (T2-4) in the wall of the bladder. Your urologist resected the tumor in Epithelial tissue, but also deeper including connective tissue and muscle tissue. Apparently, there were not cancer cells found in connective tissue and muscle tissue.
Specimen consists of multiple pieces of tan soft tissue (less than 1 g)
It is not certain if they are from the same tumor or multiple tumors, which you can ask to your urologist as the treatment for a solitary TaLG and multiple tumors with TaLG will be different.
August 11, 2023 at 6:28 am #45357Gopal
ParticipantThank you Joe for that detailed, clear explanation of the terms from the Pathology report. What an amazing resource this site is, and what amazing, caring individuals you all are. I am very grateful. Thank you again.
August 11, 2023 at 1:24 pm #45363Nightingale
KeymasterHi Gopal,
Thank you for that update! It is good to know and receive some good news about our healthcare system for a change. I am glad to hear that the hospital in Cambridge has medical professionals who are capable and able to help patients like you!
The Forum is but one place to receive information about Bladder Cancer and it’s treatments. We volunteers speak from our personal experiences and some like Joe go further by doing additional research and providing information to members like you. Please note however that we are not medical professionals, and that you should always consult with your medical team for specifics regarding your situation.
Incidentally, in case you’ve not looked at the main Bladder Cancer site, we have Patient Guide Books for the various types of Bladder Cancer. Here is the link Canadian Patient Guidebooks – Bladder Cancer Canada
My Best,
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This reply was modified 1 year, 9 months ago by
Nightingale.
August 11, 2023 at 3:24 pm #45368Gopal
ParticipantThank you Nightingale. Grateful to you, Joe and all the amazing support network on this site.
August 17, 2023 at 11:11 pm #45487Joe
ParticipantHi Gopal,
I don’t usually rely on a single site study except it is done by a large cancer centre or an academic hospitals, well know for bladder cancer. Anyway, I will show you a case LG did not progress in 5 year. The oncology department of a national university in Japan analyzed 153 NMIC patients to find out recurrence free survival rate and progression free survival rate at 5 years, based upon WHO1973 and WHO2004 grade classification. Below is the result. The study did not use risk based, but grade based.
Recurrence free survival rate LG 68.7% HG 47.1%
Progression free survival rate LG 100% HG 89%
As for patients profiles, 122 men and 31 women, age 68,5 +/- 10.1 years old, the mean follow up interval from the first diagnosis was 74+/- 50.8 months. A second resection was performed if the initial TURBT was incomplete a and the specimen did not contain tissues from the muscle tissue. After the initial TURBT, 24 and 49 patients received BCG and anticancer drug, respectively. It did not say what anticancer drug was, but I assume it was intravesical chemotherapy.
Anyway, at least one clinical study shows LG will not progress at 5 years mark. I assume that progression implies progression to muscle tissue.
December 11, 2023 at 7:42 pm #46604Gopal
ParticipantHello everyone of you wonderful folks,
Just 4 months after my first diagnosis of Low Grade NMIBC, I found out today that it had recurred, although the urologist says it was a “very small” tumour.
I will of course wait for the pathology results, but does this early recurrence significantly increase my risk of progression and if so, are there any stats out there that can be shared?
Needless to say, I am bummed. 🙁
Gopal
December 11, 2023 at 9:27 pm #46606Nightingale
KeymasterHi Gopal,
Try not to worry. My NMIBC came back three (3) times! The first two times I had Turbts to remove the tumour. The third and thankfully last procedure was a laser treatment to burn off the tumour in my bladder. It stung a bit, and thankfully it has not returned. As indicated in one of my earlier replies, I am now 13 years cancer free. I should also mention that the first recurrence was when I was in for my 3 month check-up.
Incidentally, NMIBC has a track record of recurring. The percentage is quite high 60% +, but don’t let that deter you from keeping a positive frame of mind.
I wish you well and hope your Urologist will be successful in getting all of it on your next procedure.
My best,
December 12, 2023 at 1:57 am #46608Joe
ParticipantHi Gopal,
Recurrence is such ambiguously used term. Whether it is a new tumour reappeared from the area which was resected by TURBT or a new tumour which appeared at different location is bundled together and called recurrence. But, whether you have been treated such as by BCG or you have not received any treatment after the initial TURBT makes significant difference in interpreting a new tumour. In your case, the initial tumour was diagnosed as pTa. I assume it was solitary and the size was less than 3 cm. In this case, it is classified as low risk NMIBC and the recommended treatment is TURBT and surveillance by regular cystoscopies, of which the first cystoscopy found a small new tumor. The new tumour was likely located at a different place from the initial tumor. So, it is likely the tumour was there already but too small for the urologist to identify during the initial cystoscopy and during the initial TURBT. Or the tumour was a fragment of the original tumour which was implanted during the initial TURBT. The guidelines recommends that if urologist believes the tumour is LG, the bladder should receive one time intravesical chemotherapy, typically with mitomycin or Gemcitabine or one of chemotherapy drugs mentioned in the guideline. Do you recall if you ever received single adjuvant intravesical chemotherapy after the initial TURBT? Anyway, those new tumors are also termed recurrence, which kind of confuses us, at least to me.
Also, it is general consensus these days that LG and HG are different cancers, and though another tumour tends to appear, chances of LG change/progress to HG is minimum like 5% statistically speaking. Because the analysis of entire DNA to find abnormal genes, eg. mutation, missing, too many, has become substantially cheap and fast, it is possible to analyze abnormality of which genes are associated with MIBC, HG NMIBC and LG NMIBC. It turns out that 70% of LG has abnormality in genes in controlling the initiation of cell division cycle, but little abnormality in genes to suppress the progression. On the other hand, HG has abnormality in genes to suppress progression such as TP53 which is also found in MIBC. Even if the new small tumour were diagnosed as HG, it can be completely resected because it is very small. The complete resection of the tumour and surrounding residues is the key for papillary type HG, so a well know urologist once told.
They say, main cause of bladder cancers are prolonged exposure to toxins which kidneys excrete. So, there is such thing called Field Effect or Field Cancerization. Field Cancerization means that the tissue surrounding to the tumour or entire surface of bladder had gone already molecular changes with abnormal genes, so though it has not changed to be malignant yet, but it can evolve to cancer with a few more abnormal changes in certain genes. My understanding BCG or intravesical chemotherapy is supposed to destroy those cells which had undergone field cancerization, but a certain percentage of patients still experience new tumours.
Though, the new tumour is very small, it is a new tumour. So, it is possible that your urologist may recommend 1 year of BCG or intravesical chemotherapy as your bladder is considered as intermediate risk, or your urologist may suggest to to another TURBT without treatment. It is up to the urologist’s experience how he or she handled similar to your case.
Anyway, I bet that the new tumour is LG again by 9:1. Do you want to bet otherwise?
December 12, 2023 at 9:19 am #46613Gopal
ParticipantThanks Joe. I somehow feel that betting against you is a losing proposition, so will fold my hand here. :-). What you write comforts me greatly.
A bit of background here may be in order. Right after I had my first Cystoscopy, the Urologist also ordered a CT scan of my upper UT. In that, they found my left ureter demonstrated relatively decreased caliber along the majority of its length. Areas of mild apparent wall thickening, most pronounced along proximal portion of ureter and with patchy areas of thickening along proximal to mid-portion of ureter which may be related to multiple small sergiginous vessel surrounding the ureter based on configuration. Given patient’s history of hematuria, correlation with ureteroscopy is advised.
Given that, he decided to perform a ureteroscopy and at the same time check out the bladder. There was a gap of 5 months between my first TRUBT and yesterday.
I am awaiting the report from pathology, and that is where your experienced prognosis comes into play.
I did not receive any chemotherapy yet. This is one of the questions I intend to ask him during follow-up…if there are other questions that I should ask that you can suggest, I would be grateful.
The Urologist appears very confident, competent, and is highly rated in our area.
Thanks again, and I (and I speak on behalf all other users of this wonderful resource) don’t think that the importance of your work and concerned activism can be under rated.
Happy Holidays to you and yours.
Gopal
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This reply was modified 1 year, 5 months ago by
Gopal.
December 12, 2023 at 9:28 am #46615Gopal
ParticipantHi Nightingale,
Thanks for your continued good cheer and valuable support. It is the experience of good folk like you that keep the rest of us stay positive and learn to trust in the competence of our health care system and the professionals that man it.
As I mentioned to Joe, I have a follow-up with the Urologist when the pathology report comes through, and I will be certain to seek more answers.
Once again, thanks to you and the other caring and committed volunteers on this amazing forum. You are doing God’s work.
Happy Holidays to you and yours.
Gopal
December 14, 2023 at 12:55 pm #46642Joe
ParticipantHi Gopal,
I would ask the locations of the initial tumour and the recent tumour, and what urologist think what might be the cause of the second tumour. The rest probably needs to wait for the result of the pathology.
Joe
December 14, 2023 at 2:27 pm #46643Gopal
ParticipantGreat advice…thanks a ton, Joe.
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