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Newly Diagnosed w/ T1-G3 Tumor…Terrified!
Had my first grandchild and first TUR 1 day apart. I am 54 and have always been in relatively good health (little overweight) but never did I expect this. It was a sickening and helpless feeling when told that oncology had determined it was a G3 tumor after having my TUR.
I had been so upbeat about only having a “superficial” diagnosis.My wife and I both are now confused about how this could have progressed so rapidly…confused and scared. I have been drilling deep on the net for information for the last 5 days since getting my news about the grade of the tumor. A 3cm (single w/no satellites) superficial G3 papillary tumor.
I have 2 dear friends, both RN’s(married couple). When he learned of the news last Saturday (he was at work) he immediately starting having conversations w/the doctors and NP’s he worked with. Their consensus was, if they had the same diagnosis, they would hsvr hsvr the RC and rid themselves of any further possible tumors.
Scary!!! My doctor wants the full treatment schedule of a second TUR (scheduled in a few weeks) to scrape the inner wall of the bladder to remove any residual cancer cells and the a 6 week BCG/Interferon cocktail into the bladder followed by 3 years (every 3 months) then 2 years (every 6 months) and 5 years of once a year follow up (cystoscopy)…wow! How did I get here?
Anyway, I am on information overload at this point, one day feeling great about my future and the next reading a study about negative studies and down on my feelings again. A real roller coaster of emotion!
I want to see my granddaughter go to college….get married and live a long happy retirement w/my wife…I’m scared!
Thanks for listening….
steve j.
3CM Superficial T1-G3 Papillary Tumor
Diagnosed 3/9/11
1st TUR 3/21/11
Follow-up TUR Scheduled 5/25/1117 Replies-
Had 3 TURBs, BGC, Chemo and RC on 9/11/10 — The terror will pass and you will then take a journey that most on here have gone through — I like others are sorry for your diagnosis but glad you were somehow led here — you will have many questions along the way and the folks on here will help.
I am a 72 year old retired priest, which does not make me special in any way however, I have learned that faith can and does make a difference — yes, there will be the fear mixed maybe with some doubts, yes there will be pain along the way but there is strength that can come and will come — and you will know — you do not take this walk alone! As a priest I say openly say ‘Cancer Sucks’ but I am still here and will continue to continue — and so will you.
Take Care, Herb†
Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50’s.
Hi,
I was also diagnosed T1G3 Nov 2006, and after TURB had treatment into the bladder with Mytomycin – have just passed the 4 and a half year mark all clear,am not currently on any medication or treatment for cancer and life is good.I still have my bladder at the moment, and have to go for regular checks, but that is a small price to pay for peace of mind. And thanks to all the great people on this site, if the day comes that I have a recurrence that requires major surgery, I know I will have the best support network in the world. You will get through this –
Diane
Hi
I saw your note… I also was diagnosed with T1 G3 in aug 2009.. My only clue was gross hematuria. I am a nurse by profession and for some crazy reason I thought I “should be ” exempt
Cancer is an equal opportunity offender
I had a TURBT in september followed by 6 BCG treatments stating in january. Other than the discomfort of the catheter insertion the treatments were not too uncomfortable..In six monthe I had a repeat TURBT and still was not clear..After another 6 BCG’s I cleared…. But the more my bladder saw the BCG ( the second series ) the more irritable my bladder became.. But it was toterable…. One year later I am doing 3 maintenence BCG treatments every 6 months with office cystos in between….And NO-ONE is talking about taking out my Bladder
Hang in there You do get used to living your like in 4 month blocks after awhile
wayno
.
TCCA T1G3 Diagnosed 8/2009
TURBP 9/2009
6 BCG with Re-occurence 6 more BCG .clean2010
Maint BCG x3
Steve,
When I posted my original response in this thread I was somehow thinking you were Ta, not T1. Been a long week and working lots of hours.
Now that I realize it was T1 (suppose I should read the darn headings-huh?) my response would be different.
Read that link above.
If it were me, with T1, I’d go for RC. You obviously are the only one that can make that decision for you.
I personally favor aggressive treatment. When I had my first recurrence of CIS, I had already made up my mind to go for RC. The TURBT showed it to be T2 anyway so there was no question at that point. I had my RC about 2.5 years ago now and am happy I did!
Sorry for any confusion I may have caused from my very first response. It’s not like you aren’t already confused enough–you have me coming along and making worse. My apologies.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Steve,
You might find this useful information. KC actually posted it some time back when somebody else was in a similar situation to you.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2684254/
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Steve,
Sorry that you have to be going through this. First you have to realize that a diagnoses of T1 G3 is very treatable and has a high cure rate. I am glad to hear that you are at least considering
both conservative and aggressive treatments. (BCG vs RC) There are pros and cons to both. The standard treatment is BCG and close follow up. I was diagnosed with T1B G3 almost 5 years ago. the T1B indicates what the pathologist called a very deep T1. I had 2 tumors both of which were T1B. I saw 4 different urologogists and all of them recommended BCG, but when I asked about RC all agreed that it was not out of the question as a treatment and it was my choice. I chose RC. I have a Neobladder and have no regrets. My life has not been changed in any way by having a neobladder. It was a gut wrenching experience trying to decide on going with BCG or RC. The post by jj803 shows the dilema of T1 G3. JJ’s initial TUR was diagnosed as T1 and the follow up TUR verified T1. he chose RC and after his bladder was removed it was T2. In his case he made the correct choice. My advice to you would be Google T1G3 and read as much as you can. there are lots of studies and statistics out there. Then you can make a informed decision on whats right for you. In your favour is the fact that you have one relatvly small tumor. Acording to most studies I read, this improves the success rate of BCG. Choosing BCG is not without risks, but RC is a Major operation and has its own risks.Above all it is criical that you go to a Major medical center and are treated by a urologist specialzing in bladder cancer. I wish you the best in what ever treatment you decide on and remember that T1G3 bladder cancer is very treatable cancer with a high cure rate.KC
Age 59
DX Jan 2006 – T1B G3
RC – Neobladder June 2006
Although there is considerable discussion in the literature regarding “early” rc for T1 high grade urothelial tumors, it seems that most recommend a trial of bcg first and if bcg fails (variously defined as to what a failure is) then proceed to rc without delay. That was the recommendation I had from 2 different high volume bc centers, but at 59 chose to go on with rc, a decision that I do not regret as even though my repeat turbt was not muscle invasive, my final pathology on the cystectomy specimen was muscle invasive. I think that they are more interested in this as an option for those of us who are relatively young and otherwise healthy as you are. This is a very difficult decision for you and the urologic oncologists as they cannot predict who will do well with bcg and who will ultimately need rc, anyway. Another consideration with bcg is the side effects which rarely can be quite long lasting and may require additional treatment to alleviate these problems. All that aside, it seems that most newly diagnosed T1G3 patients will begin with bcg.
jj
Steve,
Many of us here have been in your shoes at one point or another.
I’m not sure I’d be jumping to RC quite yet. That does not mean you shouldn’t read up on it and go through forum threads here so that you are prepared just in case. I went two years from the time I had my first diagnosis to the time I had my recurrence. Many folks keep it at bay with BCG for years and years before (if ever) having to go the RC route.
Not sure if the urologists that your nurse friends spoke to were top bladder cancer specialists or not, but it is certainly worth discussing pros and cons with your doc.
Typically, one with Ta (IF that gets confirmed by the 2nd TURBT) go with BCG or Mitomycin instillation. Read up on Dr. Lamm’s BCG protocol and research.
Hope all goes well with the 2nd TURBT. It’s the right thing to do because bladder cancer is very, very often understaged at the first go around.
Mike
NOTE: WHEN I POSTED THIS I DIDN’T READ THE HEADING SO I WAS THINKING Ta, NOT T1. T1 IS A WHOLE DIFFERENT ANIMAL. SORRY FOR ANY CONFUSION.
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Wow, Mike, as always you are so spot on. Thanks also for the hug for the wife. It is very scary being the loving wife of a BC patient and we are also feeling the scariness of the unknown. Life has changed in many big ways for all of us as well. But, we keep the good, happy face on for the sakes of our loved husbands/wives so they don’t see our pain. I cannot tell you the times I’ve been in the shower and burst into tears of pain, frustration, and all the feelings that come with what I call the intruder…the b**tard cancer BC! Thanks for remmeber us as well. You are awesome as are so many on this board! Just the best!
Terrified, of course.
Information overload, you bet.
Scary, damn right. “You are going to scrape the lining of my bladder?” I could feel the pain even though it was scheduled for next week!Think of it this way…
You have already done several things right. You have talented doctors, you have concerned and knowledgeable friends locally (RN’s), and, best of all, you are surrounding yourself with cancer survivors here. While your life might be taking a difficult turn, it is not into the dark unknown. We are here to guide, comfort, and even translate (when your Doc. seems to be talking Latin).Now take a deep breath and give your wife a hug because she is worried too. Tell her everything is going to be all right and mean it.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
Hi Steve; Sorry you have to be here, but this is one place you will find comfort and knowledge. If you have questions, someone here will have an answer to try to help. The one thing i would tell you at this stage of your journey is to study, to learn as much as you can about each stage that may arrive. Just be prepared. That way you will never have to rush into something you have not thought about. I am glad you have caught this early.
Wishing you the best.
Duke
Whew, I can feel what you are feeling Steve as we were there back last July and thought…”how can this be happening?”. But happen it did and like George within one months time, Jim had a TURB + RC/IC. He had the dx of BC without a doubt and it had gone into his prostate. No prior symptoms so that isn’t something new for many here. Keep in mind that you will find many caring,knowledgable people on this forum who are here to help you get through this. This forum has been a true God Send to me. Jim had his surgery last Aug 12th followed by 6 months of gem/cis chemo and as of now, to quote another forum member is “cancer free until proven otherwise”. Keep up your vigilance and follow through. You will do just fine and keep coming back here to let us help you carry this sudden “bump in the road”. We are feeling so good right now, we are moving forward with our move that was delayed due to BC! WE will not let BC take over our lives, we will keep vigilant and keep the tiger tamed! Take care
Hello Steve… Congratulations on your first grandchild! So sorry that was paired with your BC diagnosis, but early intervention at a top-notch hospital is certainly in your favor.
Sharing your story somehow makes it a little less terrifying, at least it did for me. It is scary going into the first phases of treatment because it seems everything is happening so fast and we are so unprepared for it in the beginning. It’s daunting when you first learn of your permanent induction into a lifetime of tests and monitoring, but we settle into our individual patterns and celebrate each good checkup here. You will see many threads to that effect.
Also, any questions you may have can be answered here as well since others have had similar experiences. You’ve got a wealth of information at your disposal, and the best listeners and cheerleaders you’ll find anywhere!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Steve
Just remember….. “You ARE going to see your grandchild grow up and you WILL have a long and relaxing retirment. This is just a bump in the road.How can I say this? Because You have caught this early and you are going to get the best treatment available. Your friends are professional health care workers and are already giving you good advice. I hope they steer you to a surgeon who has done MANY MANY Radical Cytectomies. You want an assembly line worker who has this thing down pat.
You will get plenty of help here. I had the same experience as you. Feelin’ great! Lots of stuff going on and a lot to live for! BLAMM! Right between the eyes. In 2 1/2 months I had 2 TURBs and the RC! Life changed. But things have settled back to normal. I am almost 3 years post RC and aside from a few niggling differences “I am ALIVE!” I am almost Normal…. The other people on this site will dispute that though.
Take good care of yourself….. Get to the right hospital with the right Dr. and ……. Get well. You WILL live a long and happy life. Soon you will be giving advice to others. You will be a success story….. Just like us.
George :)
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Steve,
Welcome and sorry about your diagnosis. As Alan mentioned, most people will suggest you get a 2nd opinion at a major bladder cancer center to be sure of the stage/grade of your cancer as well as to make sure there is no residual tumor left after the first TURBT. The fact that your doctor is suggesting a 2nd TUR is a good sign.
After that, try to relax a little. I know that’s easier said than done. Getting a diagnosis like this isn’t what anybody wants. However with proper treatment and followup your likely looking at a long future ahead. One thing I’ve found is a lot of people are well meaning, but there knowledge of bladder cancer is limited at best and they don’t always give the best advice. Getting a 2nd opinion will easy your mind with the knowledge that you’ve got the right diagnosis and treatment plan in place.
47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.Sign In to reply.
