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Here I go again…..more cancer
Hello everyone, glad I found this site and have been reading your posts. This past July I was diagnosed with transitional Cell carcinoma of the kidney and had my left one removed. 3 months later I went in for my 1st cystoscopy and my urologist found a cancerous tumor. We did the in office TURB and I went home. Then last wed. on my next 3 month checkup he discovered another tumor was back, in a different spot in my bladder. There was also some lumpy looking area?? Anyone know anything about the lumpy thing, what it means? So we decided to go into surgery, which I do next Tues. He is going to biopsy the lumpy area and take the other tumor out and start mitomycin into my bladder.
I am just fed up with it returning and it seems like I will be dealing with it for years to come. So any advice would be great. This is my first round with chemo and I have tried to read everything I can. I am trying to keep a positive attitude but… Look forward to any feedback.
Barb -
22 Replies
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(For Mom of Two Cute Boys, I have moved your topic and created a thread about seeking a second opinion to the Superficial Bladder Cancer Area. I am
hoping that you will get more response with an individual thread. Let me know how I can help. I have two cute boys, too.)Regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
thanks to all for replies. :) so kind i am following everyones advice. becky
Hi Becky,
Sorry to hear about your problems and fears. Am in a similar situation to you, and find it is difficult to stop your mind from keep returning to the cancer thing. What I can really reccomend, if you can do it , is commit to a physical training programme, try and go to a gym , or keep fit or whatever, One – you can·t think about it while you are working out and Two – it makes you feel more in control of what·s happening to your health. I know its difficult to do this especially if you already feel depressed , but it does help with your “feel good factor”, and can only improve your bodies general ability to fight back.
Keep in touch,
Flamenco
Becky,
that was good advice given to you. I know it is hard not to let it consume you but you have to live your life. We are the fortunate ones that it is still non invasive. This board gives out some great advice. Please feel free to contact me anytime, sounds like we are going through the exact same thing. Let me know how your search for a new doctor goes. Keep your chin up and hang in there. BarbBecky,
I am from the invasive section, my husband had his bladder removed Sept 14.
After reading your post I thought I would jump in and give you a little advice. Its paramount that you always see a cancer specialist at a major cancer facility. No need to be afraid if you have a top notch doctor.You should’nt be put off by them, there co-operation and communication are important. Don’t let them run you around, pick a good one, and never allow a turb to be done in an office setting as we have read about before on the forum.. if you are unhappy with him not seeing you for 3 months find out why and get answers. My motto is don’t be scared be prepared.
You have a superficial situation, not to be overlooked,,,take care,,Ginger
hi thanks for asking. i am allright last tur was feb5 so going on 2weeks since . i have just got names of other urologists TODAY wasnt till the end of the day but now i have a direction for a second opinion. AND FROM A SPECIALIST IN BLADDER CANCER UROLOGIST. and i am finding suport centers and support groups to attend soon. I wish i knew where i stand now that the tumors are so consistant. when in the office for my scope and he said i had 2 i said what now and he said lets get this removed and then we will talk. well its removed and hes not talking to me again. and i dont have another app. till 3 months from now. aaaaaahhhhh! sorry thanks for listening. how do we not let cancer consume us. is their a magical way to stop our minds from wandering back to it. becky
Becky I know what you mean there is so many things out there to read and can be scarry. I was given something to help with the pain in the office, just wasn’t put under. I guess there are many different views on all the in office techniques. I am just praying that my May appt. doesn’t show more tumors. I am just trying not to let it consume right now until I know something in May. So how are you doing right now Becky?
BARB I TOO HAVE HAD 3 TUR IN 6 MONTHS. MINE KEEP REOCURRING TOO. I AM SO JEALOUS OF THOSE WHO HAVE TIME BETWEEN THEIRS. I FEEL FOR YOU AND CRINGED WHEN YYOU SAID YOU WERE GIVEN NO ANETH. I WAS COMPLETELY PUT UNDER ALL 3 TIMES. I WOULD HAVE IT NO OTHER WAY. I NEED TO FIND A SECOND OPIONIN FROM SOME ONE WHO WILL TALK TO ME. YOU READ WHATS ON THE INTERNET AND GET SCARED . BECKY
My husband had one biopsy taken in the urologist office and I have never seen him so pale. After that any time they took tissue it was in the hospital and they used what they called conscious sedation, usually Fentanyl and Versed. As I understand it the combination handles pain and give a patient amnesia for the duration of the procedure but the person still will respond to directive such as roll on your side.
Volunteer Coordinator
ABLSC
Hi David,
Yes I will be doing general anesteshia tomorrow. The first time I had a procedure was in office and I am not really sure what you would call it. He removed the tumor and then caterized it? The just used something to deaden the opening where the tube went in. It was uncomfortable that’s for sure.Barb
Barb,
Just curious, does your doctor plan any anesthesia for the next TURBT? I had never heard of conducting a TURB or TURBT (the T denotes tumor removal) with no form of anethesia. You must be a VERY brave person. I can scarcely tolerate the cystoscopy sometimes,and that’s with a flexible scope. Having said all of that, best wishes on your upcoming procedures. Most of us on this forum have walked in your shoes before.
David
Hi Melodie, Thanks for your response, I really appreciate everyones response. It is great to have so many people helping and knowing what they are talking about.
I have had a 2nd opinion by a leading cancer center and they reaffirmed that my urologist here was right on target with my treatments. If at any time I don’t think he is I will return to MD Anderson. I have checked my urologist and my pathologist out. My doctor is in a big city not a country town, I didn’t want people thinking I was going to some hometown doctor. I go in tomorrow for a TURB, and start chemo (mitomycin). We will see how all that goes. Thanks again for all the advice and support
Barb
Barb,
I hope you realize that everyone who is commenting here has your best interest at heart. It’s wonderful that you like your doctor and I’m sure comforting to you, however, it is the skill and experience you need for treatment. It is great when you can find skill, experience and a great bedside manner in one doctor but those are tough to find. Quite often the best ones are so busy fighting cancer that they invest little time in social skills…but they get the job done and done well.
It is great that you have found this website…it is truely a wealth of information, and so many on the forum open their hearts to you, and will help you in whatever way they can. The doctor can share information with you but who knows more about how the patient survives bladder cancer than those of us who have gone on that journey. It can be a very rough ride but we are here to help you. Please stay in contact. I hope you have the energy and time to research your options and especially get a 2nd and possibly 3rd opinion. Take care, your new friend, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
[quote author=Barbnks link=topic=1749.msg13104#msg13104 date=1201685071]
How do you know if your Urologist is a good bladder cancer doctor. I know he is not a oncologist, which I haven’t seen one of those yet either. Should I be seeing an oncologist? Thanks for the info.Barb
[/quote]Barb, I think you’ll find that everyone here is of the same mind about only one thing–that patients with bladder cancer should be treated, if possible, by a physician at a major cancer center that has lots of experience with bladder cancer. Not your local hospital, and generally not your local urologist. They may be fine in every other way, but you really should begin by exploring your options at a facility that sees bladder cancer day in and day out. Especially if one of the alternatives you’re dealing with is surgery.
I myself was diagnosed by my local urologist, but he was gracious enough to insist that I go to USC/Norris for my surgery.
My best to you,
Zach
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
Thank you Pat and I am calling today to get the results of the last biopsy. I didn’t have any anesthesea when he took out the last tumor. How do you know if your Urologist is a good bladder cancer doctor. I know he is not a oncologist, which I haven’t seen one of those yet either. Should I be seeing an oncologist? Thanks for the info.
Barb
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