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Good Morning - Where do I start?

13 years 6 months ago #3368 by Sandra
Thanks Rosie for your reply.  Actually I have an 8cm cyst on my liver which is pushing on my gallbladder.  But doctors do not seem concerned about it.  Along with two cysts in my left kidney.  But I did orginally have two 4cm tumors and two smaller tumors in my bladder and no urinary blood - just microscopic blood.  So total I have had 6 tumors removed during TURBTs since November 2006.  

My real concern about my Son's wedding is the distance.  Coast to coast and bladder issues from BCG.  I will only know once I get started.  I hope it is soon.  Waiting for call from Oncologist today to discuss.

Yes my holidays were certainly different this year, did a lot of on-line shopping.  I was at the "Why Me" stage for most of the holidays, and am certainly glad that has passed.  Now I just want to get a treatment plan (which I know can be altered at anytime) so I can go on with the things I enjoy and make plans to travel.  I guess I am at the "how to plan ahead" stage now....need help from the trenches with that one.

Thank you again for your reply will check into Maitake D as you suggest.  Take care, Sandra

"Grandmothers are just antique little girls...."

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13 years 6 months ago #3367 by Mike
Hi Sandra you sure have had alot of things to deal with. I had just gotten over a left hip replacement surgery on 10/26 and released from Ortho Doc on 12/11. But the beginning of Dec. I noticed blood in my urine bam just feeling somewhat better now this. My first urine sample tested before Christmas results back the day after Christmas. Then whatever the 2nd sample was for got that back the day after New Years. My primary immediately set me up with a urologist. I was diaganosed 1/8 with the tumor talk about getting hit by a bomb. So this urologist did his job but I was not ok with him so I called my primary and told him I wanted to go to the Univ of Penna. a great hospital in my area. He set me up with another urologist Dr. Wein and the best decision I have made so far. My biospy is on Mon 1/29 finally here cause I been waiting so I know where I stand but I be a liar if I said I was not nervous. Point is just got over one surgery and then my holidays my mind was a wreck I did the best I could but just had this feeling something wasn't right. You know how the holidays are I got my wife, 3 sons, and 2 grandkids you have to go places and people all having fun and you got this ordeal on your mind. Seeing Dr. Wein last Thurs I was at the Hosp. about 6 hrs. and yesterday had to to see Cardio Dr. and did pre-op while I was there and I was there about 10 hrs so I totally understand that tire part you were talking about. This is a great site and there are great people here that can answer alot of your questions as they have helped me. Sandra I wish you the best as we are all here just trying to help and support eachother. Best Wishes, Joe

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13 years 6 months ago #3366 by wendy
Welcome Sandra. Thank you for introducing yourself. You live on a lake, wow, that's my fantasy. I live in a houseboat in Amsterdam, the atmosphere is beautiful but I can't swim in the canal...I think if I had my wish I'd live IN the water itself, fish-like. Next life (or maybe it was..last life?)!

I'm sorry to hear about your bladder cancer diagnosis. It sounds like you've been through months of very scary stuff. Good for you getting yourself online to learn more from those who've been there. It's a hard one sometimes (ignorance is bliss). Cancer info is confusing. Everyone is different too, so there's no predicting how a person will respond, if they'll get side effects. Some do, some don't, just like sometimes treatments work and sometimes they don't, and that's the way it is.

Luckily there are treatments for bladder cancer that work well, and long term survival has some of the highest statistics in 'cancerland'. It pretty much depends on the stage and grade of the original cancer. Was your tumor Ta or T1? The 'T' stage refers to the depth the tumor invaded the bladder lining (or not). Don't worry, there is not a lot of difference in long term survival between Ta and T1 tumors...so long as the cancer doesn't progress to stage II, then a statistical difference appears. But even with higher stage bladder TCC, the survival rates are excellent. A good knowledgable doctor is paramount, this is a complicated disease and approaches can vary widely depending on where you go.

In any case a person should have access to the latest technological advances, if at all possible. Walter Reed should fit that bill.

The new doctor sounds like he knows what he's doing, and when you get that path report let us know how it came out. Good thing he went back in and did the second TUR, and the dose of mitomycin sounds like he's up on the latest guidelines for high grade, Ta/T1 TCC.

You may be able to make it to the wedding, you might be happily surprised. But keep your priorities straight and don't stress out over it, whatever happens.

Most women say each treatment gets a little tougher, but you get some time between them...there is a bit of leeway with scheduling allowed, too. The lastest info says that people who have bad side effects should hold off until they go away before proceding with the following treatment. That's the good part of BCG treatments, they can tailor them to fit the individual; ie, reduced doses and schedule postponement, both without losing effectiveness of the treatment.

It's important not to keep receiving BCG if it is hurting too much, then it becomes overkill.

Take good care,

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13 years 6 months ago #3365 by Rosie
Gee Sandra, You sure had a lot of stuff thrown at you in addition to the business at the holiday season. My best suggestion with your concerns about BCG and allergies etc. is to be sure your Primary Care doctor is constantly in the loop with your urologist/oncologist treatments, reports, surgeries etc. I have it written in my patient form to send a copy of all visits, treatments, surgeries, cystos to my PC. If you can get a brochure on the BCG there is great information as to maximize the positive effectiveness of the treatment and minimize negative reactions. TICE BCG had a very informative brochure. The effects of BCG are accumulative. The first 3 instillatons normally do not cause any strong adverse reactions. Normally BCG is not so debilitating that you would not be able to attend your son's wedding. It's not like having systemic chemo or radiation. You will probably feel some urgency, some burning and some tiredness the first 24 hours but nothing extreme. I had 21 BCG treatments without any adverse reactions. I took Maitake D-fraction in conjunction with my treatments after doing much research on it. It is amazing that your one tumor grew to 8cm without there being any visible blood when you urinated. You certainly exercised an excellent option by going Walter Reed Army Hospital. Keep in a positive frame of mind. You can prevail over the TCC.

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13 years 6 months ago #3364 by Sandra
I am new to this board and excited to have others to chat with about all the new things that have happened in my life.  I live on a lake and quite secluded from people to talk to and especially those with Bladder Cancer.  My husband is active duty with the Army so that adds to the seclusion at times.  Guess I should add I am a 63 yr old, smoke for about six years and quit 15 years ago.  Do not drink, never worked in factories or around chemicals....

Here's my story with Cancer to date....Saw my Primary Care military doctor on October 31, 2006 as I had noticed for quite some time urinary frequency, constant urge and not much happening and then some pain and burning.  Had the normal test for bladder infection which was negative and urinalysis came back with microscopic traces of blood.  Doctor ordered a CT Scan and to be seen by an Urologist.  I had CT Scan on Nov 15th and was to see Urologist on Nov 21, 2006.  On friday evening Nov 17, 2006 (like I will ever be able to forget this date!) my Primary Care military doctor's nursed called and stated, "Dr. Ramler wanted me to call to tell you your CT Scan came back with a Renal cyst and Bladder Mass and you should see the urologist right away"...I didn't like the sounds of this and she seemed quite uncomfortable relaying the message.

On the following morning I went to the doctors office some 50 miles from here and requested a copy of the report for my records and the nurse (doctor was not in) printed me a copy and handed it me.  I read in the parking lot that I had four tumors in my bladder and that they were carcinoma - among other things like 8 cm cyst on my liver and several in one kidney.  No one explained anything to me, just handed me the report.  Needless to say the remainder of the weekend was a blur.....

To make story a little shorter....had cystoscopy in Urologist office on Nov 21 and then was scheduled for TURBT on Nov 28th.  Waited three weeks for pathology....had 2 tumors @ 4cm each and two smaller papillary tumors = TCC Grade 3.  Saw Urologist on Dec 19th, he went over this information with both my husband and me.  He stated that the Chemo nurse was on leave until Jan 3rd and would call me then to set up Chemo.  I was really not comfortable with him or the fact that my cancer treatment could wait for holidays and leave.  And my husband had asked him about further testing due to the fact my right hip and knee were really painful...he stated that it was probably just restless legs.

My primary care doctor ordered an Xray on my right knee on Dec 29th, 2006 and on Saturday, Dec 30 his nursed called (seems to be pattern for giving patients bad news) to say that the x-ray showed a possible mass in the soft tissue of the knee and I needed to have an MRI.  Well, that pretty much took care of New Years weekend.....!  By the way I had the MRI Jan 10, 2007 and it was a Ganglion cyst on the miniscus - I can live with that one!

I finally sought a second opinion at Walter Reed Army Hospital on Jan 2, 2007 for my Bladder Cancer treatment and the Urologist there sent me the next day to an Urology Onocologist that had just came from MD Anderson.  On January 3rd, I meet with Dr. Brassell and decided to change my Cancer care to Walter Reed.  He set up my BCG with the Chemo nurse to start January 9th for 6 weeks.  But he stated he wanted to do a Cystoscopy before I left just to look inside the bladder.  During the Cystocopy he found several new tumors (small) and what he described as some discolorations as well.  So BCG was cancelled.  I was scheduled for another TURBT (six weeks after first one) on Jan 8th, 2007 and had Mitomycin directly into bladder at surgery.  He rebiopsied the former four areas as well.  Those four areas came back cancer free, the two new tumors were TCC Gr3.  As he was at a conference last week I have not spoke with him regarding the discolorations and what those were.  I expect to find out this week when I start BCG - I would think in the next week or two.  

As to how I feel, just tired really.  Have some bladder pain but nothing remarkable.  I still have the knee pain, but I look at it as a blessing at this point and go on.  I would like to start BCG, a little nervous really about side effects - allergies really.  I have strong reactions to many medications so it's on my mind.  My son is getting married on Feb 17th in California and I am not sure I will be able to attend but he does not want me to delay treatment.  My husband has been very supportive when he is home, but says I need to talk to others "like me"....

This site seems like an uplifting place to be and I plan to visit often..../Sandra

"Grandmothers are just antique little girls...."

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