The Urologist I went to, who performed that Cystoscopy, referred me to a Gynecologist. The Gynecologist nurse practitioner examined me, did a Pap smear and said that was ok but wants me to have a transvaginal Ultrasound. Frustrated because most of the doctors I have been to (besides the Gynecologist nurse practitioner,) aren’t getting back to me about the results of the lab work I have had done, and I even joined a 6 year study to do with Sarcoma cancer that I developed on my thigh about 2 1/2 years ago that a surgeon removed but their hospital Redcap team requested to follow me for 6 years due to that. They just took 5 vials of blood from me in the last 6 weeks (they sent a nurse to my home to take it) but no one is getting back to me about the results of it and I have called around several times to ask about it but they so far aren’t coming thru with it. This is a University hospital who did the surgery on me and whose Redcap Team I agreed to do a Causal Study with.
The Urologist I went to, who performed that Cystoscopy, referred me to a Gynecologist. The Gynecologist nurse practitioner examined me, did a Pap smear and said that was ok but wants me to have a transvaginal Ultrasound. Frustrated because most of the doctors I have been to (besides the Gynecologist nurse practitioner,) aren’t getting back to me about the results of the lab work I have had done, and I even joined a 6 year study to do with Sarcoma cancer that I developed on my thigh about 2 1/2 years ago that a surgeon removed but their hospital Redcap team requested to follow me for 6 years due to that. They just took 5 vials of blood from me in the last 6 weeks (they sent a nurse to my home to take it) but no one is getting back to me about the results of it and I have called around several times to ask about it but they so far aren’t coming thru with it. This is a University hospital who did the surgery on me and whose Redcap Team I agreed to do a Causal Study with.
You have to be your own advocate. Its your health and if something isn't right keep pushing or seek other providers. Were you diagnosed with bladder cancer?
You have to be your own advocate. Its your health and if something isn't right keep pushing or seek other providers. Were you diagnosed with bladder cancer?
Yes. One Emergency Room diagnosed me with bladder cancer. Neoplasm of unspecified behavior of bladder; neoplasm of uncertain behavior of Right Adrenal Gland; disorder of the Ovary, Fallopian Tube or Broad Ligament; Fibroids of Uterus; Diverticulosis; non specific abnormal finding of Lung Field; and most recently neoplasm of lower eyelid area/canthus. Lots of diagnosis yet not specific where it all started from although I can only figure it started from the Sarcoma on my leg (that actually seemed to start from a dog bite over 10 years ago and by my own dog!). I was in severe right sided abdominal pain 3 times over a period of 6 weeks in April, May & June this year. Afterwards I changed my diet and have not been in that severe pain anymore. I am 64 years old and have 2 children (adults now), married to 1 man over 40 years and am a Stepmother to 8 other children.
You have to be your own advocate. Its your health and if something isn't right keep pushing or seek other providers. Were you diagnosed with bladder cancer?
If you have an adult child that can go to appointments with you, that helps as sometimes we hear different things. Please look into BCAN. Great organization. I started doing tons of research the day after my husband was diagnosed so I could ask a lot of questions.
I always ask questions whenever something is suggested. We have a great team at Mayo, but I always research what they are suggesting.
Yes. One Emergency Room diagnosed me with bladder cancer. Neoplasm of unspecified behavior of bladder; neoplasm of uncertain behavior of Right Adrenal Gland; disorder of the Ovary, Fallopian Tube or Broad Ligament; Fibroids of Uterus; Diverticulosis; non specific abnormal finding of Lung Field; and most recently neoplasm of lower eyelid area/canthus. Lots of diagnosis yet not specific where it all started from although I can only figure it started from the Sarcoma on my leg (that actually seemed to start from a dog bite over 10 years ago and by my own dog!). I was in severe right sided abdominal pain 3 times over a period of 6 weeks in April, May & June this year. Afterwards I changed my diet and have not been in that severe pain anymore. I am 64 years old and have 2 children (adults now), married to 1 man over 40 years and am a Stepmother to 8 other children.
I assume they did a scan on you? That's how my husband's tumor was discovered and then he had surgery (TURBT) to remove tumor, which was staged and graded so treatment could be determined.
I guess I don't understand why you are not being referred if cancer was found in your bladder. If not happy with care keep looking. sending hugs!
I assume they did a scan on you? That's how my husband's tumor was discovered and then he had surgery (TURBT) to remove tumor, which was staged and graded so treatment could be determined.
I guess I don't understand why you are not being referred if cancer was found in your bladder. If not happy with care keep looking. sending hugs!
Thanks Martin. The initial screenings were for infection, but no infection has existed! I am making an appointment with a nephrologist just in case- had the same thought. I had not thought about digestive involvement- I haven't seen anything in my readings tilting me in that direction- but I am happy to have the advice and will look into it!
@alsante1, can you explain a bit more? Have you been diagnosed with bladder carcinoma in situ (also called CIS or Tis)? What treatment are you or have you had?
@alsante1, can you explain a bit more? Have you been diagnosed with bladder carcinoma in situ (also called CIS or Tis)? What treatment are you or have you had?
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The Urologist I went to, who performed that Cystoscopy, referred me to a Gynecologist. The Gynecologist nurse practitioner examined me, did a Pap smear and said that was ok but wants me to have a transvaginal Ultrasound. Frustrated because most of the doctors I have been to (besides the Gynecologist nurse practitioner,) aren’t getting back to me about the results of the lab work I have had done, and I even joined a 6 year study to do with Sarcoma cancer that I developed on my thigh about 2 1/2 years ago that a surgeon removed but their hospital Redcap team requested to follow me for 6 years due to that. They just took 5 vials of blood from me in the last 6 weeks (they sent a nurse to my home to take it) but no one is getting back to me about the results of it and I have called around several times to ask about it but they so far aren’t coming thru with it. This is a University hospital who did the surgery on me and whose Redcap Team I agreed to do a Causal Study with.
You have to be your own advocate. Its your health and if something isn't right keep pushing or seek other providers. Were you diagnosed with bladder cancer?
Yes. One Emergency Room diagnosed me with bladder cancer. Neoplasm of unspecified behavior of bladder; neoplasm of uncertain behavior of Right Adrenal Gland; disorder of the Ovary, Fallopian Tube or Broad Ligament; Fibroids of Uterus; Diverticulosis; non specific abnormal finding of Lung Field; and most recently neoplasm of lower eyelid area/canthus. Lots of diagnosis yet not specific where it all started from although I can only figure it started from the Sarcoma on my leg (that actually seemed to start from a dog bite over 10 years ago and by my own dog!). I was in severe right sided abdominal pain 3 times over a period of 6 weeks in April, May & June this year. Afterwards I changed my diet and have not been in that severe pain anymore. I am 64 years old and have 2 children (adults now), married to 1 man over 40 years and am a Stepmother to 8 other children.
And yet I have read that as we get older we should find others to help advocate for us.
If you have an adult child that can go to appointments with you, that helps as sometimes we hear different things. Please look into BCAN. Great organization. I started doing tons of research the day after my husband was diagnosed so I could ask a lot of questions.
I always ask questions whenever something is suggested. We have a great team at Mayo, but I always research what they are suggesting.
I assume they did a scan on you? That's how my husband's tumor was discovered and then he had surgery (TURBT) to remove tumor, which was staged and graded so treatment could be determined.
I guess I don't understand why you are not being referred if cancer was found in your bladder. If not happy with care keep looking. sending hugs!
Thank you. Yes I have had 2 Abdominal CT Scans done on me and an Ultrasound.
Any updates?
@alsante1, can you explain a bit more? Have you been diagnosed with bladder carcinoma in situ (also called CIS or Tis)? What treatment are you or have you had?
What is this? I made a mistake. My bladder cancer is not CIS but TA.