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42yrs, high grade, aggressive T2 – what are my odds?
Hi, I’m new to this forum.
After I’ve found blood in my urine in January, I was eventually diagnosed with an aggressive high-grade T2 bladder cancer.
The RC is scheduled for August and chemotherapy is starting in 2 weeks. However, my oncologist said the chemo increases my chances by only 5% while my overall prognosis of survival after 5 years is around 50%.
I’m 42 years old and married with my wonderful wife since only one year. We were to start our life together but now I don’t even know whether this or the next summer will be my last one. I’m deeply saddened and I can’t think of anything else. I’m heartbroken and I hope someone can give me an educated guess regarding my real chances (worst/best case) based on my diagnosis (see below) as my doctors are holding back with estimates as usual.
A. BLADDER TUMOR, TRANSURETHRAL RESECTION / FROZEN SECTION:
– POORLY DIFFERENTIATED CARCINOMA, HIGH GRADE, INVASIVE, WITH MARKED FREEZING AND POSSIBLE CAUTERY ARTIFACT.
B. SUPERFICIAL BLADDER TUMOR, TRANSURETHRAL RESECTION:
– POORLY DIFFERENTIATED, INVASIVE CARCINOMA, WITH IMMUNOHISTOCHEMICAL STAINING PROFILE COMPATIBLE WITH HIGH GRADE, POORLY DIFFERENTIATED, INVASIVE UROTHELIAL CARCINOMA.
– INVASION OF MUSCULARIS PROPRIA / DETRUSOR MUSCLE IS IDENTIFIED. C. BASE OF BLADDER TUMOR, TRANSURETHRAL RESECTION:
– POORLY DIFFERENTIATED, INVASIVE CARCINOMA, COMPATIBLE WITH HIGH-GRADE, POORLY DIFFERENTIATED, INVASIVE UROTHELIAL CARCINOMA.
– TUMOR SHOWS INVASION OF MUSCULARIS PROPRIA / DETRUSOR MUSCLE.
COMMENT: In specimens B and C the tumor shows extensive invasion of muscularis propria.I know it’s a long way to go and anything can happen. Yet I’d need to know more in order to make peace with whatever could happen.
I’m grateful for all your feedback!
J. -
18 Replies
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Schulz, I am sorry you are having to deal with this but you are welcome here. As you know the type of cancer you have been diagnosed with is rare. As a matter of fact I have been dealing with bladder cancer since 2004 and I have just done research so I could try to answer you in a halfway intelligent way. What you are dealing with does not fall within normal bladder cancer protocol as it is a different animal. The type of chemotherapy and treatment you will receive will be different than someone dealing with what we normally see here. I also looked and could not find a support network that would better serve you online I would assume that is due to its rarity. Having said the above know that even though we may not have specific information for you we will do the best we can to offer you the support you need. For example we may not have experienced the exact drugs used in your chemo but we can share our experience handling the side effects of chemo in general. If nothing else we are here to listen if you need to talk.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
I was just diagnosed after cytoreduction hipec with urachal. I 52 and so afraid. I have andocarcinoma with mucinin
Cancer cells were in urachal, upper lower omentum and peritoneal wall. About to do chemo to the stomach. Did you do any chemo? If so what type and how long? -
Thanks. My husband is 6 years out from surgery and has not been instructed to irrigate beyond the first six months
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I had radical cystectomy, total hysterectomy and neobladder in 2002 after diagnosis of urachal adenocarcinoma. I am 16 years out and cancer free. Have had the usual mucous production, urinary tract infections and stones but otherwise have done well. Do straight Cath and irrigate still. The first few years are a little difficult. Hang in there! I was 41 at diagnosis.
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It all depends on your unique circumstances.
When I was diagnosed, I could not find much information on people like me since the average age for diagnosis is over 70 and in men. The statistics were hard to digest. Being scientific and a math lover, I dug into research to find some current statistics that applied to me and what MD Anderson was lining out for treatment. I had to piece stuff together. Then I decided that I was going to change the statistics by surviving!
I am 58 y.o. female with no secondary conditions like high blood pressure, diabetes, etc. No regular prescriptions other than a hormone patch due to a hysterectomy 20 years ago. I have maintained a moderate level of activity and weight. It was a surprise to be diagnosed in February 2017 with stage 4 muscle invasive BC to the lymph nodes. I surprisingly did well on four rounds of Ifosfamide, Gemcitabine and Doxorubicin. Then two rounds of Gemcitabine with Cisplatin. Stopped since I began having ringing in my ears and my bone marrow was not rebounding fast enough. Surgery is set for August 30. My lymph nodes were in complete remission after four rounds of chemo and a cystoscopy after 5 rounds revealed there was anything worth snipping.
BTW… Cisplatin was a trip – literally. A roller coaster ride that wasn’t pleasant.I wish you the best and relaize that most stats out there do not fit you!
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_substandard,
You really cant go by odds or percentages, We are all different. but I do know that my nonmuscle invasive BC is now muscle invasive and my best chance at beating BC is an RC, I think getting rid of the source is better than leaving it in.
I have a Wife of 9 yrs, 5 kids, 3 grand kids, I know they count on me and my thought is to do what I can to beat this !
I may not win, but I’ll always keep trying for me and them! And yes I agree with Cynthia change your user name your better than that!
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC. -
You are welcome as the sunshine in May here. However your user name bothers me a great deal. We are all equal here, invasive, noninvasive, old or young. Because our enemy is larger than any of our differences. Could we please chose a different user name for you? I vote for Survivor1
You will have a lot to think about I am sure others will chime in about nerve sparing and other possible options.
I believe everything comes down to the bottom line. Your bottom line may differ from mine but only you can decide what yours is. For myself it was finding a solution that gave me the best change to go on having a good life. Sometimes in life there are no easy solutions but I promise it is doable.
Let me know about your username, who knows you may get other suggestions.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
I had the chance to discuss my case with an experienced urology oncologist in Riverside, CA today. I’ve also asked him the same questions we discussed here in this thread and his answers were rather encouraging:
As we know Chemotherapy does not really kill the entire high grade/aggressive (same meaning) type of cancer though it has good chances to shrink it before the RC surgery. However chemotherapy works well in killing the microscopic cancer cells which might already had spread from the bladder into the blood stream. That way chemotherapy helps a lot to prevent even the highly aggressive cancer from re-occuring.
The official 50-60% survival rate for our “T2 club” is therefore not entirely accurate for our 40-60 year old generation. Even considering the aggressiveness of our cancer type doesn’t influence this notion so much.
As for the option to not remove the bladder after chemotherapy he said that procedure was standard in Italy for some time. The measured rate of re-occuring cancer was around 90% though.
I’ll keep you posted!
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MoreLife,
Well said… I think the other important metric which I have not seen discussed is the survival rate of those taking RC vs. those not taking RC with the same stages. I have read some articles online that due to not randomized sample, it is not conclusive but roughly like 50% vs. 50%.
Just for discussion purpose.
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Cystoscopy – 03/23/17
TURBT – 04/06/17
Waiting for 2nd TURBT -
The cited 63% “relative” survival rate for T2 patients diagnosed 1988-2001 is (1) surely lower than the relative survival rate for T2 patients diagnosed in 2017, and (2) a generalized way to try to home in on the odds of dying specifically from BC (meaning that for that vintage of T2 patients more than 37% died within 5 years, if you include deaths from other causes), with that general adjustment not necessarily being accurate for all ages and other individual nuances. But it’s a correlation, and correlation doesn’t necessarily mean causation. For example, a large share of those diagnosed with BC in that period were heavy smokers. So to some extent, that 63% figure is saying “patients diagnosed with BC then were more likely than the general population to be heavy smokers, and heavy smokers were significantly less likely to survive their next five years than was the general population.”
To see through that sort of confound, it would be good to be able to estimate an absolute rather than relative survival rate for an age-specific, stage-specific subset of BC diagnoses, and then compare it to the absolute survival rate for the same age in the general population.
As cited earlier in this thread, http://www.cancer.net/cancer-types/bladder-cancer/statistics states that for muscle-invasive bladder cancer confined to the bladder (that is, for T2, excluding T3 and T4, and with N=0) the recent 5-year survival rate (which I read as the specific=absolute survival rate, not a “relative” rate) is 70%. The same article says that “the average age people are diagnosed with bladder cancer is 73.” According to the Social Security actuarial table I cited earlier, about 18% of US males aged 73 will die within their next 5 years. (I get that by summing the table’s yearly death percentages for ages 73, 74, 75, 76, and 77.) So as a crude adjustment, if we suppose hypothetically that all T2-diagnosed, other-stage-excluded patients are male and exactly 73 years old, these statistics seem to indicate that 30% die from something within 5 years, and 18% of them would die without MIBC, so 12% will die from BC. That is, to a first approximation 12% of T=2, N=0 MIBC victims die specifically from MIBC and most of those victims are considerably older than the OP’s 42 years or my 54 years. On that basis, and assuming neither the OP or I turns out to have worse than the average T=2, N=0 condition, I have to think that with the greater general resiliency of younger patients (ability to tolerate dense-dose chemo, recovery from surgery, etc.) we each have a less than 12% chance of dying within 5 years and having the cause attributed to MIBC.
Also, with MIBC, there’s not much difference between 5-year survival rates and 10- or 15-year survival rates; to a first approximation, if you last that long you’re probably home free.
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Hi MoreLife,
Like what you said on numbers. I found a few detail metrics from following link.
https://www.cancer.org/cancer/bladder-cancer/detection-diagnosis-staging/survival-rates.html
[strike]The numbers below are based on thousands of people diagnosed with bladder cancer from 1988 to 2001. These numbers come from the National Cancer Institute’s SEER database.
The 5-year relative survival rate for people with stage 0 bladder cancer is about 98%.
The 5-year relative survival rate for people with stage I bladder cancer is about 88%.
For stage II bladder cancer, the 5-year relative survival rate is about 63%.
The 5-year relative survival rate for stage III bladder cancer is about 46%.
Bladder cancer that has spread to other parts of the body is often hard to treat. Stage IV bladder cancer has a relative 5-year survival rate of about 15%. Still, there are often treatment options available for people with this stage of cancer.[/strike]So, the odds of beating Stage II Bladder Cancer is well above 50%. But it would be different for each individual.
Again, good luck to all of us!
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Cystoscopy – 03/23/17
TURBT – 04/06/17
Waiting for 2nd TURBT -
I have a vital interest in a similar question, as I too have recently-diagnosed MIBC, at age 54. I’m good at math but found the nomenclature of cancer statistics somewhat daunting — for example, does “Stage 2 bladder cancer specific five-year survival rate” mean the 5-year survival rate for the specific population that has that diagnosis, or the share of the diagnosed population that won’t die within that period from that diagnosed disease (although some of those “survivors” will die from something else, like auto accidents)? It makes a huge difference in interpreting the odds but most writing on the subject (whether technical articles in the medical journals or articles written for patients or general audiences) simply assume the reader understands. But if this (http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517) is written correctly, IT’S THE FORMER: Stage 2 bladder cancer specific five-year survival rate” means the 5-year survival rate for the specific population that has that diagnosis, with members of the diagnosed population who die within that period counted as non-survivors without regard to their cause of death. Which is hugely important to you and me, so if I have that wrong somebody PLEASE SAY SO. The reason it’s so important is that most bladder cancers are diagnosed in a relatively aged population that has a relatively high expected mortality rate even before a cancer diagnosis. For example, https://www.ssa.gov/oact/STATS/table4c6.html indicates that 9% of U.S. males aged 65 die before they reach 70.
I found this hugely encouraging, though it’s a small sample. http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517 . Among T2 bladder cancer patients, “cancer specific survival [rates] were 94%.. for patients with tumors <3 cm (P = 0.006) and...73%, for patients with tumors ≥3 cm (P = 0.005). And that was for patients treated at the Mayo Clinic 1980-84; there have been a lot of advances in the relevant medical arts since then.
So, after having done a lot of reading and consulting with doctors, I think your odds of beating this if it is stage 2 and not stage 3 or 4 are well over 50%. The cloud in that silver lining is that until the RC procedure gets at the surrounding fat and lymph nodes, you can't know for _sure_ that it isn't more than stage 2 (though imaging etc. can provide some comfort there).
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Thanks guys for the encouragement!
I’ll follow your advice and ask for a second opinion. Yet I think my clinic (Kaiser, Southern California) is doing a good job so far.
For most, it’s a mental thing to get over with and thanks for all your feedback I’m feeling more relaxed about it.
I’ll keep you posted on my progress. Next up is a class about the upcoming chemotherapy ;)
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Stan,
(shortened from subSTANdard)Welcome to the forum.
Statistics can be a funny thing. Unless they are fully stated, they are meaningless. You mention a doctor citing a 50% survival at 5 years. That number seems rather out of date; treatment keeps changing for the better. One on one, we have NO idea of any individuals chances, but the statistics are important.
See the website below, where the 5 year, Stage 2 survival rate is 70%. (Looking back 6 years, the rate was about 64%)
http://www.cancer.net/cancer-types/bladder-cancer/statistics
I dislike hearing a 50% number – I have found doctors to use it to mean, “either you do or you don’t”, rather than describing an actual percent of likelihood of a positive result.
Also, you note, “It seems I caught a rather rare version of bladder cancer”, which you described as “high grade, aggressive T2”. That description states the SAME information 3 times. Simply calling it Stage 2 says everything. All the unnecessary adjectives just makes it sound worse.
Stage 2 is described as- T2a or T2b, N0, M0, stage II means that the cancer has grown into the muscle layer of the bladder wall. It has not grown through the muscle layer into the fatty tissue surrounding the bladder. In this bladder cancer stage, the disease has not spread to lymph nodes or distant sites.
Almost half of all bladder cancers are first diagnosed at Stage 2.
I think it is fair to say that most of us here took a blow to the guts when the word Cancer was said by the doctor. It takes a little while to sort things out. give yourself some to digest all of this. If you need help coping, ask your doctor and expect a response that works for you. Try to turn away from the negative feelings and look toward the chance to beat this disease.
Others have suggested getting a second opinion; I agree.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021 -
Hi there,
Similar experience, like you, I found blood in my urine last December and first treated as infection and then was referred to Urologist in early Feb. I had TURBT in early April but unfortunately, my biopsy results were not conclusive. Have to wait maybe another week or two to go through 2nd TURBT.
I found this forum in mid April and got a lot of valuable information here. And I also appreciate the encourage words from many folks here.I came across a book the other day, “Changing Normal”, written by Marilu Henner/Michael Brown. Pretty interesting one. You would see the guy, Michael Brown, had many similar questions/thoughts and his experience may shed some lights for us.
But again, everyone’s different. And have you got 2nd opinion on your treatment from another Urologist? The surgery like RC is not reversible, so make sure the diagnosis and else was correct.
Btw, I am 46 yrs old and just like you, still look forward to the long journey ahead. After I heard “C” word from my urologist back in March, I started to understand that life is so short and it is up to you, yourself on how to live it.Good luck and share your stories, you are not alone here.
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Cystoscopy – 03/23/17
TURBT – 04/06/17
Waiting for 2nd TURBT
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