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Please anyone, need input. Originally diagnosed july 4/14. T1G3 from pathology report. Did BCG 6 weeks had CT scan and cystoscopy Oct 29/14 cancer contained in bladder only but BCG failure. Had second TURBT Jan 05/15 so much more bleeding this time? Appointment with Urologist to go over Pathology Jan 21/15. With all of that bleeding and having G3 or high grade cancer i feel like the cancer just wont go away. I dont know for sure yet but my body is telling me its still there. I feel I will be offered systemic chemotherapy, and or radiation or cystectomy. Emotionally I have made it to acceptance. It looks like a big fork in the road. Can anyone offer some guidance, advice, or anything that may help with what i feel is coming?
Difficult to off any advice until you know the results of the Turbt from Jan 5/15. Your Uro will most likely go into a lot of detail with you at the appointment on Jan 21/15. Insure you ask for a copy of the pathology report. You may consider getting a 2nd opinion at a major cancer centre in Vancouver if you are not already there.
If possible I recommend you take someone with you to the consult to make notes on the 21st.
Please keep us posted after your consult on the 21st.
All the best,
JackI will take someone with me. Appointment is in Victoria on Vancouver Island. I will ask for the pathology report. Thank you for the advice Jack. If there are any other tips out there please send them, even if its how to hold the kleenex when i cry
First off, I wish that I could reach through this computer and give you a huge hug ((((((((HUG)))))))).
As Jack said, it will be difficult to know or decide anything until the results are back. If you have to make choices the thing I suggest is weigh the pros and cons of each as best you can. This is where having someone else with you for the appointment will help. They will probably hear things that you won’t or may even have a different take on it. An RC is a big surgery as is doing chemo or radiation. You will have to have a heart to heart talk with your uro about what he feels is going to give you the best possible outcome, examine where your head and heart is on this and go from there. Once choices are made don’t hesitate to post any questions here. There are lots of folks that have had the surgery, some have done chemo and/or radiation as well. Getting a second opinion doesn’t hurt either. No matter what we are here for you. And yes, you will go through the Kleenex. Please stay in touch and let us know how you are.
Marysue, Yes I see there are many things to weigh. I will try to look carefully at the choices as they come. Of all the things to be considered, which can not have a weight itself is your digital typed discription of a hug. Most people in this situation need much more than surgery. Human emotion takes us all for a long rough ride. Thank you for your compassion. For all who are struggling and to their families who stand near, learn the facts but share the hope.
You’ve rec’d great advice from Jack & Marysue so nothing for me to add but wish you the best on Jan. 21st for your results.
FloMetalman, I wish you the best and just remember that we are here for you. Choices are not often easy- especially medical ones where one may be caught between a rock and a hard place or the other expression “Damned if you do, damned if you don’t”. We’ll just keep praying for the best. Hang in there.
Latest on this continuing ride. Now have a bladder lining infection. Does anyone know how or if this type of infection complicates the healing of the resection? I dont know if the doctor has as much experience as the combined wisdom on this forum.
Bladder infections after turbts and cystos are very common. I had multiple infections for 2 years. Cipro was the choice of antibiotics. Usually was fine in 24-48 hours. In my experience the infections did not harm the healing process after a Turbt. Hopefully yours will not either.
All the best,
JackHi Metalman – my husband was diagnosed with bladder cancer in 2011. It was very fast growing aggressive tumours needing surgery and follow-up chemotherapy. To prepare for his doc appointments, we would brainstorm all kinds of questions. I then organized the questions by putting similar ones together. I started a notebook, entering the questions. I left spaces between the questions, so that while the doctor was talking, I could write what he was saying. At the end of the appointment, if he had not (on his own) given answers to any of our brainstorming questions, I would then read them out to him. This helped use his time the best, during our appointments. My husband had never had an operation before (at the time he was 64) and had never been sick….so he had lots of questions. We also asked for copies of all his scans, ultrasounds, as well as his pathology reports, and operative reports. Keep asking questions, we are here for you and your caregivers!!!
Ieva
Leva, Very good ideas i can sure use them. Hope your husband is ok. Families suffer with stuff like this. My wife has collapsed emotionally with all of this. We have both been dealing with sick children for many years. We have two sons with idiopathic liver cirrhosis. The oldests conditon is such that he has been to the transplant team in Vancouver to begin the assessment process. Financially things are beyond exhausted now. My 20 term life insurance expires on tuesday next week and renewal is out of the question. What a dumb time for that, just like what a dumb time for cancer. My mental health is still hanging on but slipping. I have just read this and it sounds pretty crumby. I think depression has written it.
Hang in Metalman. There are many on this site who have been where you are right now. I experienced much the same as you with recurring tumors in 2012/13 but with the help and encouragement from folks here I got through it. My wife accommpanied me on all visits and the ones where we met for consultaton we did as has been recommended already…questions on paper/notes in hand and off we went. While this may seem easy to say, try not to jump to conclusions and be careful what you read on the internet because without a medical background some of the stuff can get you really worked up. Wait for the Path Report and go from there… I ended up having 2 sugeries after the initial one (Sept 2012) and after each I received 6 weekly treatments of BCG. I just turned the corner of 18 months all clear cystos (being checked every 3 mos) and hoping/praying it continues that way.
Best wishes and prayers for favorable news on the 21st…
Rick
Rick B. Great news. I do not know where to ask this question –and still don’t know why I don’t get notified of new messages. Good news: I had laser surgery on left eye for cataracts and astigmatism. I do not have to wear glasses for the first time in my adult life. Left eye tomorrow. So now I can read the computer screen. How do I get replies and new posts.
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