Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › High-grade papillary urothelial carcinoma – Surveillance only
Tagged: Témoignages
- This topic has 34 replies, 6 voices, and was last updated 7 months, 4 weeks ago by
Chelsea.
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AuthorPosts
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May 8, 2024 at 10:27 pm #47625
Chelsea
ParticipantHigh-grade papillary urothelial carcinoma.
Negative for lamina propria invasion.No detrusor muscle present.
The above is my pathology result. I had a TURBT one month ago. I saw my Urologist and he said he’s only going to do a surveillance (he said it was ta high risk and regardless of high or low risk, for ta, it gets treated the same, which is a cystoscopy every 3 months. No BCG or anything else.). Has anyone with the same kind of diagnosis had only surveillance? I’m worried that perhaps I should get more treatment? Thank you.
May 9, 2024 at 7:32 am #47627KJL
ParticipantHi Chelsea… I have not heard of surveillance only for high grade. You might like to check out the following link. It is from the Canadian Urological Association on recommendations for Standard of Care.
https://www.cua.org/system/files/Guideline-Files/7367_v6.pdf
You might like to join us for the Women’s Only group on the first Wednesday in June. Contact Angela Pelletier at
angelap@bladdercancercanada.org. She will send you a Zoom link for the meeting.
May 9, 2024 at 2:35 pm #47628marysue
ParticipantHi Chelsea:
I have had Ta high grade bladder cancer 3 times – 2008, 2010 and again in 2022. All 3 times it was recommended that I do BCG because of it being high grade. Follow up for low grade can vary from only surveillance to having some kind of follow up treatment but like KJL says, I too, have never heard of only surveillance for high grade. I’d be having another conversation about that with your urologist as to why he thinks you can get away with only surveillance. If you are not satisfied with his answer, I would ask for a second opinion. Best Wishes. (((HUGS)))
May 9, 2024 at 5:03 pm #47633Chelsea
ParticipantThank you KJL and MarySue for replying to my posts. You are very helpful and kind. It’s very much appreciated. Today, it’s a month since I had the TURBT and I’m very worried. I will be looking for a second opinion. Big hugs!
May 13, 2024 at 12:05 pm #47638Nightingale
KeymasterHello Chelsea,
Have you spoken with your family doctor about this? It might be worth a discussion with your family doctor if the report he/she receives provides more information. The other option is to request a phone call with your Urologist and ask the question about the surveillance. I had surveillance only, but mine was very low grade, non-muscle invasive.Please let us know how you fare. Thank you.
My best,
May 14, 2024 at 7:29 am #47639Chelsea
ParticipantHi Nightingale,
Thank you for your post. My family Doctor is on vacation until the end of May. I’m looking for a Second Opinion referral and I also need to wait for my family dr. to be back. I’ve been calling some walk-in clinics but they’ve been saying they don’t provide referrals. I found some other Urologists I would like to have a Second Opinion from and it will take another 5-6 weeks to see if I get a referral and they’re ok to see me.
When my Urologist gave me my pathology result, he said it was guidelines to just do surveillance whether low or high risk ta. I think he meant high grade instead of risk. I asked him if I could call him if I had any questions, he replied “go google it”. So, I don’t think I can give my Urologist a call to ask him any questions.
My best,
May 14, 2024 at 10:41 am #47640marysue
ParticipantHi Chelsea:
I’m sorry to hear about the type of response that you have gotten from that urologist. That is very unprofessional and uncaring in my books. The one good thing is at least you have had the TURBT and that has bought you some time. The majority of doctors don’t want their patients to go on Google for fear of reading and misunderstanding what they are reading.
Does your family doctor have someone covering for him that could give you a referral? If not, I hope that you can get into seeing your family doctor at the end of the month and get into seeing another urologist in June. Best Wishes! This is not easy. ((((HUGS))))
May 14, 2024 at 6:06 pm #47641Chelsea
ParticipantHi Mary Sue,
Thank you for your kind words.
It’s true, the way to look at it, at least the TURBT will help. My family doctor doesn’t have anyone covering for her, so I will have to see her at the end of May.
It really is not easy and it is very stressful.
Thank you again for your support. 🙂
Best wishes and big hugs!
May 22, 2024 at 10:47 am #47664Tana
ParticipantHi Chelsea ;
I was diagnosed Sept. 2019 after my first Turbt with Ta Hi grade NMIBC.
I actually did ask my urologist , “ do I really have to do treatment” when he was explaining this three year BCG treatment plan. He said Yes. I did complete the full three years treatment BCG.
Just to say I also had a second Turbt in October2019 one month after the first Turbt . Started Treament three months later in January 2020.
Fast forward last week had my 6 month cystoscopy – my bladder is healthy all clear.I am wishing you all the best. Hope you were able to get your second opinion and know what’s up.
TanaMay 22, 2024 at 8:49 pm #47665Nightingale
KeymasterHi Chelsea,
I would still call your Urologist and tell him that you’re calling him after receiving and reviewing what other patients are saying in the Bladder Cancer Canada Forum. Tell him that you have based your questions after getting some feedback in the forum. Tell him it should not take more than 5 minutes of his valuable time.I would then structure my questions in the order of priority – most important and meaningful to you first, then go down the list. I would keep it to 3 questions max. I hope this helps you. Let us know how you proceed.
My Best,
May 23, 2024 at 10:09 pm #47666Chelsea
ParticipantHi Tana,
Thank you for posting and for sharing. I’m very very happy for you. 😊 Thank you also for your kind words.
It’s interesting to hear that you also had treatments.
I’m seeing my family Doctor this Monday and will be asking her to refer me to some other Urologists for a second opinion.
Best wishes,
May 23, 2024 at 10:38 pm #47667Chelsea
ParticipantHi Nightingale,
Thank you for posting. You’ve shared really great advice and I very much appreciate it.
I like your idea of limiting the questions to three and asking them in order of priority. I will be calling his office on Monday (it’s closed on Friday) and ask for an appointment to ask him about the treatment (or the lack thereof). I will let you know of how that goes.
Best wishes,
May 26, 2024 at 2:59 am #47686Joe
ParticipantI was diagnosed with bladder cancer in 2017. My urologist also chose surveillance only, so I would like to post my perspective on TaHG and its treatment. I would like to speculate why some urologist opts to surveillance only for TaHG while others prescribes BCG treatment 1 year or 3 years. Also, I try to describe recent studies which have shown that not all HGs are the same biologically and its implication to prognosis and surveillance only TURBT followed by surveillance only has some validity. First Chelsea’s pathology report and mine are almost the same tough wordings are different.
Chelsea High-grade papillary urothelial carcinoma. Joe Intermediate grade – G 2/3 papillary transitional carcinoma G2/G3 (WHO1973) can be LG or HG in WHO2004 grade system.
Chelsea Negative for lamina propria invasion. Joe Non-invasiveChelsea No detrusor muscle present. Joe No muscularis propria present for histology evaluation
Because the treatment for NMIBC is based upon risk level for recurrence and progression, we need to know if it was sole tumor or multiple, and the size. When I had asked my urologist the size of the tumor, he showed me the size with fingers. But I knew from the CT can that mine was single tumor and the size was < 3cm. So, mine was intermediate risk NMIBC. Otherwise it is considered as high risk. How about yours, Chelsea in terms size and if single site or not? Typically, intermediate risk TaHG is one year of BCG or intravesical chemotherapy and high risk TaHG is 3 year BCG according to various guidelines. Guidelines are collection of evidence and expert recommendation and not enforcement, so I think ultimately urologist chooses the treatment for patient based upon clinical experience of the urologist and the guidelines. So, I think your urologist and mine weighed more on their clinical experience than the current (2021) CUA guidelines in choosing surveillance only.
The understanding of bladder cancer, available treatment, the guidelines are all evolving. BCG was first approved by FDA in 1990 for CIS only. The usefulness of 3 years maintenance was shown in year 2000. CUA was founded in 1945, but the first CUA guidelines for NMIBC was published in 2007. My urologist probably has 35-40 years of clinical experience. It means that my urologist probably started his practice even before BCG became widely used. According to the study “Superficial bladder cancer: progression and recurrence” published in 1983, all papillary tumors (Ta, T1) were treated with TURBT and followed by surveillance only and intravesical chemotherapy was prescribed only when recurrence happened.
Ta 175 patients G0=5, G1=109, G2=56, G3=5. T1 74 patients G0=0, G2=38, G3=29. If 75% of G2 are classified as LG and 25% of G2 are classified as HG, the number of TaHG will be 19, which is about 10% of all Ta. According to 2021 CUA guidelines, of all NMIBC, 70% are Ta and TaHG is 7% of Ta, 20% are T1 and 10% are CIS+. So, TaHG is a minority in NMIBC. Anyway, below are some data from the study.
Progression of disease ( 3 years) : Grade: G1 (2%), G2(11%). G3(45%). Stage : Ta(4%), T1 (30%). Tumor size < 5cm (9%), > 5cm (35%). TaG1 1/85 (2%), TaG2 3/50 (6). TaG3 1/4 (25%) T1G1 0/7 (0%), T1G2 6/29 (21), T1G3 (13/27) (48%).
Recurrence of disease ( 3 years) : Grade: G1 (60%), G2 (50%), G3 (30%). Stage : Ta(60%), T1(40%).
Ta and < 5cm seem to experience low progression . So, it is possible that my urologist and your urologist have seen in their clinical practice that low progression for Ta patients even with TURNT only saw good result and may have carried the practice even today.
Not all HG are the same
TaHG is an odd ball in NMIBC because only 7% of all Ta are HG., whereas most of T1 are HG. So, I wonder if all TaHG eventually progress to T1HG or TaHG and T1HG are fundamentally biologically different To understand if there are are biologically different, we need to look at more recent studies.
Queens university in Canada, the home of Dr. Morales and Lund university in Sweden recently published their study on biological subtypes of NMIBC and its association to progression, recurrence. The team divided the tissue of NMIBC into mainly two subtypes – Laminal and Basal. Laminal subtype was further divided into URO, GU, URO&KRT5+ groups. Basal subtype tumor has shown to be more aggressive and has worse prognosis compared to Laminal subtype tumor. TaHG behave more like TaLG than T1HG. Below are the result of the study. Note that TaHG includes high risk TaHG and intermediate TaHG, but what we can tell from this study is that most T1HG are basal type and aggressive but most TaHG are laminal subtype which is less aggressive similar to LG. So, I can interpret that TaLG and TaHG are treated similar so some TaHG can be treated with as TaLG, which is TURBT and surveillance only until if and when recurrence happens. But, if we want to reduce the risk of recurrences and minimize the risk of progression, some intravesical treatment seems to be necessary when we look at TaHG from its possible subtype point of view.
BASAL subtype : 80% (T1HG), 20% (TaHG) – progression free 40%, 7 years
Laminal subtype – less aggressive and better prognosisURO 25% (T1HG), 40% (TaHG), 35%(TaLG) – progression free 95%, 7 years
GU 30%(T1HG), 40% (TaHG), 30%(TaLG) – progression free 90%, 7 years
URO&KRT5+ 10%(T1HG), 25% (TaHG), 65%(TaLG) – progression free 85%, 7 years
WHO2020 says 30% of NIMBC is a mix of LG and HG. They recommend if 5% or more are HG, then it should be classified as HG. I do not know how pathologists have been determining LG, HG when the tumor was mixed with LG and HG.The current CUA guideline is kind of recommending to treat any HG as high risk, indicating 3 years of BCG treatment. I think the rationale is that it is better to over treat than undertreat considering the risk of 3 years BCG, i.e. side effects vs possible progression even though it is less possible for TaHG than T1HG. Interestingly, Ontario pathway for bladder cancer treat TaHG < 3m, single to be treated as intermediate risk, and BCG or MMC or other chemotherapy is recommended. AUA guidelines recommends different treatment for intermediate risk TaHG. EUA guidelines has more granularity based upon G1,2,3 classification. In case of The National Comprehensive Cancer Network® (NCCN®) ,who is a not-for-profit alliance of 33 leading cancer centers devoted to patient care, research, and education, their guidelines for intermediate-risk TaHG is intravesical treatment (preferred) and by surveillance only after TURBT.
I think treating all TaHG as high risk NMIBC is simpler and addresses the issue that some of TaHG are aggressive as T1HG, but that does not necessarily warrant to determine that surveillance only follow up for intermediate risk TaHG. I saw someone posting that patient was recommended for surveillance only but the urologist also mentioned that BCG treatment can be prescribed. I think it is ideal if the urologist can state what CUA guidelines recommends and why he or she is recommending surveillance only and explains pros and cons for both approaches, and mutually with patient the treatment of choice by dialog. I must be dreaming.
May 28, 2024 at 12:14 am #47687Chelsea
ParticipantHi Joe,
Thank you for your post. It is very thorough and informative. Very much appreciated.
My CT scan report says the mass was 1.7 x 2.1 cm. I asked my family Doctor yesterday and she said it was one lesion. When I met my Urologist after my surgery to discuss my pathology result I asked him if it was high risk and he said that it was high risk. However referring to the tumour size on the CT scan, it is Intermediate risk?
My Urologist has 14 years of experience and he is an Assistant Professor of Surgery. He said that he didn’t know why they called Ta high risk or low risk (as it is Ta) and that he treated both the same way – surveillance.
I asked my family Doctor today about why I wasn’t getting any treatments. She said treatments could do more harm to the body. She was talking about radiation. I just googled Immunotherapy and read the cons of it (“Your body could get used to it. Over time, immunotherapy may stop having an effect on your cancer cells. This means that even if it works at first, your tumor could start to grow again.” From webmd.com). Very confusing.
Joe, may I ask you if you’ve ever asked your Urologist about treatments? If so, what did he say?
Thank you.
May 29, 2024 at 2:24 am #47691Joe
ParticipantHi Chelsea,
My reply disappeared. So, I will try it again tomorrow.
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