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Low Grade First Diagnosis – Second Found after 15 months
Hello –
I really never expected to be here. I am a 47 yo female. In 2017 I was doing a lot of CrossFit and wanted a sling – after kids they made a lot of things weak :) During installation of my sling, by doctor saw something “strange” and took a picture. She handed it over to my now doctor and he said, looks like cancer to me. Within 2 days I was in his office for a “look” and then CAT Scan.. and 5 days later a TURB… it came back stage 0 / low grade. He did no other treatment at this time.
Just went for my 15 month check up – I have been going every three months and sure enough, another mushroom as I call them, was found and a “rough” spot near my kidney opening – which he will watch – he can’t burn it without messing up my plumbing.
I am scared – I know “they found it early” which is all I hear from my family and friends. Am I going to live and for how long? I have an 11 yo still – how many more of these treatments will I endure? My urologist was trained at a teaching hospital in Chicago and is on the up and up of what the new treatments are, etc.. but he is very clinical and keeps saying these are low grade and non-invasive and caught early. and.. can they go to high grade??
I am scheduled for a TURB on Wednesday.
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11 Replies
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jchammond,
If lack of control is an issue-I would suggest that you consider listening to or reading a book on mindfulness. Quite by accident, not understanding what mindfulness was, I found a book entitled “the untethered soul“ thinking it was a mindset book. Five minutes in I realized that it was anything but, however subject matter has changed my life in those around me. What I learned from this book, and other readings and listenings on mindfulness has enabled me to live in the now instead of the past that I cannot change or the future that may never arrive in the same fashion that my mind makes it out to be.
This allows me to always be in control. It was my mind that was out of control, not the circumstances around me. Now that my mind has been subordinated to me-I am very very free. Go to Audible, get the book, and give it a listen. I hope that it is as life-changing for you as for me.
1/1/2019 Happy New Year: What is that red tint in the toilet
1/2/2019 Primary DR – might be first signs of BC
1/9/2019 CT Scan, Urine Culture, PSA test – ALL CLEAR
1/13/2019 Cystoscopy show what looks like Papillary
2/1/2019 TURBT
2/5/2019 Clots and blood clog urethra go to ER
2/7/2019 DX: HG Papillary T1 – get a new TURBT to confirm
2/5-2/8 Continuous Bladder Irrigation
– Waiting next TURBT
Alan,
Thank you for your response. This is two in 15 months. Of course my Grandpa had this for 20 years before at 90 he did anything about it. I am just not that attached to my bladder to do this every year. The testing sucks, the only real source of info I have gotten is here and my pathology report. I think I am frustrated with the whole process!!
My surgery was rescheduled due to a UTI.. yet no antibiotics. Doctor’s staff is trying my nerves ☺
Take the deep breath. “Non-invasive low-grade papillary urothelia carcinoma with no muscularias propria”, if it has to be bladder cancer that is the best. Tumors do not grow from stage 0 or 1 in a week. Let’s wait and see what the next TURB shows. A second opinion often confirms the first diagnosis. It is good for peace of mind. You are doing what you can do and it is by the book and the U of M is also an excellent center.
The cancer DX is a shock to everyone. This sounds like a cliche but, it has happened and we must go on and attack. We are here for you and am confident in 3-6 months you will be helping others get through this. Keep in touch!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
iXanadu-
I am doing what I can to remain strong – a lot of crying in the bathroom and in my office with the door closed. My worker-bees have been my super strength reminding me that I don’t “fight like a girl”. My kids and husband are my strength and keep telling me it’s going to be fine. My husband has been there for every one of these picture parties with my bladder (every 3 months!)Thank you for your thoughtful response – I am still having my pitty party but will step up to the podium and fight and be strong. We are getting a second opinion after this next TURBT and based on those results, I want to discuss with my doctors removing my bladder. Non-invasive low-grade papillary urothelia carcinoma with no muscularias propria included – needs to go bye bye!
Anita,
Thank you – so glad to hear your husband is doing well. My problem is I don’t do well when I am not in control so being at the mercy of cancer frightens me deeply. My TURBT is postponed for a week as my urologist did several tests of my urine and detected a UTI. So now antibiotics and the waiting game. He is a great doctor but I have lost patience with his staff.
Also have decided to go to U of M for second opinion after this next rodeo. If anyone would bother asking me what I want, I would ask for my bladder to be removed. I am very black and white. Cancer – you need to go!
Jchammond
Jchammond,
You are in our thoughts and prayers. We are with you in this. Be blessed and be strong. This may be inconvenient but it does not have to be life threatening – I have to reassure my wife and kids frequently. It’s hard being the strong one when you don’t feel strong – but you can do it. Be strong for yourself and the family will follow.
1/1/2019 Happy New Year: What is that red tint in the toilet
1/2/2019 Primary DR – might be first signs of BC
1/9/2019 CT Scan, Urine Culture, PSA test – ALL CLEAR
1/13/2019 Cystoscopy show what looks like Papillary
2/1/2019 TURBT
2/5/2019 Clots and blood clog urethra go to ER
2/7/2019 DX: HG Papillary T1 – get a new TURBT to confirm
2/5-2/8 Continuous Bladder Irrigation
– Waiting next TURBT
jchammond,
My husband, Doug, was diagnosed in 2001 at the age of 44. We have been on the roller coaster since then, but mostly things are going well. He is doing fine right now and is retired and a grandpa. Best wishes on Wednesday. Let us know how things go.
Anita
Forum Moderator
Caregiver
You and I are def. in the same boat! When my first one was found during my sling surgery, they told my husband who was like NO WAY! This girl runs, does crossfit, eats crazy healthy – it doesn’t matter, cancer does not discriminate. I am wishing you the best of luck on the 19th and you are not alone! The folks on this site are so informative and I am thankful I found this so going forward I have a place to go for support.
Stay strong – we are going to beat this!
Thank you for your response – will let you all know the pathology report after the next round of surgery. I really do pray it’s another low grade again. Day to day is how I am doing this for now…
Jchammond,
I never expected to be here either. I am also a 47 yo female with young kids. I thought I had a UTI and after two rounds of antibiotics they decided I should see a urologist. I’m thinking kidney stones at this point. Cancer….I’m too healthy. I eat organically, watch my plastics, don’t smoke….Wrong! Doesn’t matter. My urologist looked at me in the middle of my cystoscopy and says ” you have a small tumor and its probably cancer.” He said only 3% of these are NOT cancer. Well my world turned upside down on 1/29. I couldn’t even think of any questions to ask him, I was in a different world just trying to process what I had just heard. I am scheduled for my TURBT on the 19th. I can’t help you in terms of how procedures work etc as some of the other ” seasoned veterans” can, but I just wanted to respond so you know there are others in your same boat. Friends don’t get it, the only people that can truly understand this absolutely terrifying experience and the emotional rollercoaster it puts you on are the ones who have been there. Hence, this site.
Keep your chin up, I am also trying to do the same.
Good luck!
Welcome Jchammond,
If you have to have bladder cancer you have the best pathology report, low grade non invasive. Quick to your first and everyone’s most important question, you in all probability will live to whatever your statistical age or more assuming you have no other health issues. For most of us it will be something else that we will succumb to someday. You are doing what needs to be done with cystoscopies every 3 months and would graduate to every 6 months if and when no tumors are found, usually at year 3 and 4, and to yearly at year 5 if nothing is found.
Low grade is commonly called a “nuisance”. Yes, low grade can come back and also come back as high grade. Sometimes after a second or 3rd recurrence immunotherapy called BCG is given to help prevent these. This web site has information on that. It also sounds like you have a very good URO from one of the teaching hospitals in Chicago. It really sounds like he is doing the standard protocols. IF you ever have any doubts a second opinion is often good for peace of mind which for many it simply confirms the first diagnosis.
Easy for me to say but, take one day at a time is really it is all we can control! I was high grade many years ago as well as many of us and we are still around leading productive lives. Keep posting as any other questions arise and you will know more after your next TURB.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.Sign In to reply.
