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Blood clots in bladder cancer

11 months 3 days ago #54584 by Amazesq3
Hello to all,
I had my surgery last week. The cancer of the bladder returned. I never stay over but the operation started at 4:30 pm instead of 11:30. My bladder was flushed during the night. Catheter removed and I voided without problems the next morning.Biopsy sent to lab results in a couple weeks. Results came back in few days.
I was informed by my family that the subject of cycectomy was discussed.
Surgeon requested c-scan with contrast and barium of lungs,abdomen and pelvic. We are waiting for results. Family meeting with surgeon on 1/24/18. BTW, I feel wonderful. No stabbing pain, no blood in urine, no blood clots! I feel so good I'm afraid something bad may follow.
Any comments appreciated.
Grace

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11 months 2 weeks ago - 11 months 2 weeks ago #54507 by Alan
Grace,

Thanks for the update as we all learn from each other! It certainly looks like you have done what you can! Let's still hope the 1.3.18 surgery gives you answers and it is minor! If not and it means cystectemy do not delay! Some things in life are distasteful but bring us out better afterwards. In the past 7 months I have had a triple bypass and a carotid artery surgery. Causes are mostly genetic but, I had no choice. Get these done or I probably wouldn't be here in a year and I hadn't had a heart attack. So, my general health is now excellent and even then life offers no guarantees. Fixable and treatable BC can be. Wishing you the best possible outcome.

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.

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11 months 2 weeks ago #54506 by Amazesq3
Dear Alan,
Much thanks for your encouraging words.
When I received the diagnosis, I met with a NJ urologist. She scared me with her matter of fact bedside manner. This was the same reaction my family had. So through well connected professionals, I was referred to a urologist in Camden, NJ. I was even given special preference. That every time I was at hospital, employees would ask. "Who do you know?"
We all liked the dr. However this summer, my son in law in Northern California had connections with Stanford University Hospital. I was willing to stay with family. All my records were sent to a specialist there. We had a three-way telephone conversation. He was very thorough and suggested that BCG would not help. He knew and worked with my oncologist in Camden. He suggested removal of bladder. Which frightened me. This was before bleeding and passing of clots. He mentioned that I was in good hands and to stay with my doctor, because he excels in this procedure.
From what I am reading, my condition sounds serious. Hopefully, I will have some options on January 3rd.
Thank you so much.
Grace

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11 months 2 weeks ago #54505 by Alan
Amazesq3,

Welcome. We are sorry for the reason to be here. Yes, your situation is unusual with continued bleeding. It would be pointless to conjecture on what the cause is as I am sure there are many and none of us are doctors. Getting the peek (I am presuming this is a TURB Transurethral Bladder Resection) to see what is going on and possibly a biopsy should give answers. The good news is you are only a few days a way and a few days for a pathology report. Let's just trust this is minor!

At the same time many on this board have had second opinions if only for a fresh set of eyes. If you do, be sure to go to a major bladder center or teaching hospital that see a lot of BC as too many practices concentrate on prostate problems.

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.

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11 months 2 weeks ago #54504 by Jack R
Amazesq3,

You seem to have described your main issue when you said, " i feel that I am not getting the right answers".

As a BC patient,I want to know EVERYTHING my care team knows and sees about my cancer treatment. I expect copies of all biopsy reports, radio-graphic studies and cytology results etc to be proved to me. At every consult and following any major news from tests, I expect to be told how that new information will impact MY treatment.

Bladder cancer is a participant activity. You should be receiving treatment options from your doctors based on your concerns and self reported feelings about your treatment. You do need to make your concerns heard loud and clear if necessary.

Hopefully, you know what is planned for the upcoming operation, what it is intended to address, what you should expect afterwards, what symptoms are critical to report immediately, and what can wait until your scheduled follow up appointment.

You have the right to have all of your questions answered, completely, and in a way that you understand.

It may be helpful to make a list of questions for which you do NOT have a answer that seems right to you. Schedule an appointment to review your list and discuss your care. It is your body - you will be asked to sign papers stating that you understand proposed treatment and have discussed other options. Make sure that you get to a position where you are comfortable with the care you are receiving.

You need to keep asking questions until you get the right answers. You are the only person who can make that happen.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 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 , round 3
Begin year 4 with cis T0

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11 months 2 weeks ago #54501 by Amazesq3
I have been diagnosed with non evasive bladder cancer for 2 years. The tumors came back three times. My first BCG treatment was uneventful. But cancer came back. Dr told me he really scrapped the bladder during surgery and that's why I'm bleeding but office personnel tell me this is unusual.Another BCG treatment was schedule. I started to notice blood in urine followed by large blood clots. Four treatments were cancelled. Daily bloody urine and clots. Finally, my family called dr about my concern. On 1/3 I will be operated instead of usual cystoscopy. I'm concerned with this bleeding and stabbing pain and passing about 5 lbs of clots. If anyone is experiencing this, please reply.i feel that I am not getting the right answers.

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