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Shell Shocked
Hi – This is my first posting. I was diagnoised in Nov with superficial bladder cancer Ta. Treated with 6 weeks BCG. On my second scope, I also had a red area. My doctor did a biopsy to make sure it was caused by BCG and then did the new test called FISH. both were negitive. This is good news, however, I am still concerned. Probably because I am still “shell shocked” with the “cancer” word. I am very uneasy and worried most of the time. Is this normal?
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/0719 Replies-
PWeddy,
I know Dr. Lamm recommends regular BCG treatments for those with CIS – Carcinoma in situ and some with high grade transitional cell. Was yours Carcinoma in situ? Rosie Ambs
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Thank you, Paul, for the reply and explanation. I have had nothing but recurrances for the last two years. I might have to mention this to my new Uro coming up the 18th and see what he thinks.
Glad to see you staying ahead of the game with no recurrances.
Alice
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BCG is to prevent cancer from recurring. Thus you follow Dr. Lamm’s protocol. No one has ever come up with anything better, and he has had the best results with his schedule. This mean little cancer can come back 10- 15 years later. I don’t want it back so I have followed his protocol. The pain and problems each year are far better than having cancer again and, maybe, losing my bladder. The three treatments are one each week for three weeks.
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Paul,
You stated, “I’m now 7 and 1/2 years out and, knock on wood, no recurrance.” But yet, you still take three of them (BCG treatments) a year.
Question is: If there is no recurrance then why are you still being treated with BCG?
Alice
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Not everyone reacts to BCG treatments the same…..some sail through it with very little reaction and not every major cancer center follows Dr. Lamms protocol.
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Rosemary:
Be sure to read Dr. Lamm’s protocol on this WEB site. As I recall it used to call for 6 instillations of BCG, then 3 every 3 months for 2 yrs, then 3 every 6 months for 2 yrs, then 3 every year. I think the annual is now bi-annual. Don’t listen to me. Read Dr. Lamm’s protocol in detail for yourself. The first 6 are absolute hell. I bled like crazy after the 4th, 5th and 6th and it hurt like hell, but I stuck with it.
Best of luck to you.
PAUL
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Hello New2This,
I am really going to be confusing alot of people here on the board.
Okay, My appointment has been changed back to, July 18th :-
My first intial visit was the 18th, I called them and asked if he would be doing a Cysto at that time since it is the first time to see him. They said no since he comes from out of town and they would have to set that up with the hospital. I told them my situation about over the 3 months and blood in the urine. For that reason, they set me up to go there on the 17th.
Next thing I know, there is a letter in the mail stating they were able to get me scheduled in at the hospital here on the 18th, so I guess it will be the 18th now. :)
But anyway, please let us know what you find on your husband and I do hope you are holding up okay. I know the waiting and the unknown is the hardest and being a caregiver is just as hard if not harder. I know the feeling of helplessness comes to mind when my sister was so sick and dying of cancer.
Hang in there, New2This, and feel comforted to know many on this board are keeping you in our prayers and thoughts.
Alice
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Alice, I see the 17th is a big day for you. I will add you to my prayer list and pray you will get a good report.
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Hi Teardrop,
Wish I could wipe that tear away and make things better for you. I completely understand your worries and fears now. I truly am so sorry you had to go through that. I would be just as nervous as you and sounds as if you have every right to be.
My next Cysto is the 17th and I know this may sound odd, but I really am looking forward to it. I get to see a new Uro in hopes this one will be the right one this time. I am past due for my 3 month and already see the blood, so I am ready to get in.
I too, welcome you as a new friend and I am so glad you found this forum. Just make sure you keep coming back and keep us posted, okay :)
Wishing you all of the best.
Alice
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Allice, This has helped so much. My next cysto is the middle of Sept. After reading all the wonderful notes, I will try not to panic if I have to go back to the operating room. My first surgery was sucessful, however the docotr “nicked” my bladder, so all the water used to flush out the bladder was in my system and my electolites went down to almost nothing. I was in CCU for 24 hrs until they returned to normal) I know that is why I am nervous about returning to the OR. I had six BCG’s – with very little side effects and my doctor said that was enough. I am going to question him in Sept. (I have questioned everything so far!)
Please know you have a new friend watching out for you, Alice! When is your next Cysto?
Thank you to everyone for the great response and information. Being totally informed is much less freighting.
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
Well, my friend, teardrop,
Looks as if you have received alot of great and knowledgeable responses. I truly do hope they have helped bring some light to the subject and have brought you some comfort.
I am curious when your next cysto is though. Will it be soon?
I have been fighting mine for over 2 years now and still waiting for a clean cysto, but I know my time will be coming :)
I do hope that you will stay in touch and keep us posted to let us know how you are doing.
My best wishes go out to you and your loved ones. Please take care!
Alice
Dear PW,
I am so glad that you posted here. I was down to one third solution of prescribed BCG, but, the burning and bleeding was so bad after the 12th instillation that I have been discussing with my Doctor the idea of discontinuation of maintenance BCG. I was getting the idea around here that intense bleeding and burning was NOT a normal response to BCG.
I am going to rethink this. If you can do it, I can do it. I am also glad to know that Dr. Lamm is recommending biannual maintenance treatments. This makes the maintenance idea a little easier to bear for someone who has a miserable time with BCG.
It is also very nice for us to hear that your have not had recurrance. Thank you very much for sharing your story.
Regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
I presented with blood in my urine the night before I was to board a cruise in San Juan, Porto Rico. It was December 27, 1999. I immediately new what it was—-CANCER. My wife and I got up the next morning and caught a plane back to Dallas. My wfe, at the time was a working RN at a Baylor Hospital Short Term Stay surgery center. She called a urologist she new while we were on the plane and explained my problem. She then called the surgery center and reserved the operating room for the next morning. Upon my arrival in Dallas, I went directly to the doctor’s office where I was x-rayed and received a cystocopy (sp?). Yep, he thought it was cancer.
The next morning, the cancer was confirmed and it was removed.The doctor who removed the cancer did not believe in BCG. Therefore, on the recomendation of a doctor that my wife worked with, I went to see the doctor that was the head of bladder cancer research at Southwest Medical School in Dallas. He advised me to do the BCG treatment. I had a very virile cancer that had not invaded muscle as yet.
I have fpllowed Dr. Lamm’s protocol to the letter. I’m now 7 and 1/2 years out and, knock on wood, no recurrance.
I learned these facts:
1) Learn everything you can about this disease and its treatments
2) Do not blindly follow doctors when you read information that is
contrary to what they are telling you
3) Do not wait! Cancer does not get better with time. Get treatment
or surgery immediately. If you wait, it will be worse, and it might
kill you.
I wish you the best with your recovery. Be sure to consider having the BCG treatments. They hurt like hell, but they are better than the alternative. I now take three of them a year.P. W. Reddy
Rosie,
You certainly have been thru so much – I am happy the results were so much better than at first expected. Like you, when I first heard “cancer” I thought my life was over, because I did not know anything about bladder cancer. I get so nervous (like everyone else) before my scopes, but so relieved when they are clear. This last time with the biopsie then the FISH test it seemed forever. This is such a great resoruse – thank you to all, my first day posting and I feel at home!
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
Teardrop,
So true that the diagnosis of bladder cancer is a “shell shock” and trauma and particularly true for someone who has been healthy and active all their life, ate all the right things and felt no pain or sickness when blood appeared in their urine. I remember so well, being at the urologists office the third time and finally a cystoscopy being done when he said ” I see where the blood is coming from, you have a tumor there.” He said, get dressed and we will discuss it. I got dressed, met him at his office desk and he said “well you have a tumor.” I said “a tumor, well that doesn’t necessarily mean it is cancer does it?’ He said “oh, it is cancer alright and as long as you have been seeing blood in your urine (4 years on and off) it is probably throughout your entire urological system.” He then motioned from an area just below my chest (where the kidneys are situated in the back) all the way down to past my belly button (where the ureters, urethera and bladder are located). I did not say anything more. I was just in complete shock. He set up surgery for a few weeks. I drove toward my home in a daze. I saw my husband driving to work. I honked my horn and got his attention. He turned around and met me in front of our house. He asked what was wrong. I said ” the doctor says I have cancer and it is probably spread throughout my system.” I cried and he held me. As it turned out, the tumor had not spread throughout my system and even though it had been growing in there for some time it was not of the aggressive invasive type. It did take me 2 to 3 years of research and questions, visits to 3 other urologists and cancelling the surgery set with the first urologist to learn the truth of my low grade superficial non threatening condition but first had to go through a couple of urologists stating they might have to take out my bladder.Rosie Ambs
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