by pcbcamping on Fri Apr 20, 2012 04:05 PM
Hello I have Stage 3 bladder cancer. The MD wants to treat me with BCG. Anyone try it? From what I hear he inserts via a catherer and I have flu like symptoms for several days.....I am only 48 and very scared........
by Arklite on Sun Apr 22, 2012 09:04 PM
On Apr 20, 2012 4:05 PM pcbcamping wrote: Hello I have Stage 3 bladder cancer. The MD wants to treat me with BCG. Anyone try it? From what I hear he inserts via a catherer and I have flu like symptoms for several days.....I am only 48 and very scared........
On Apr 20, 2012 4:05 PM pcbcamping wrote:
I am assuming that you were diagnosed pT1G3 based on your posts. What was the size of your tumor? And were you restaged?
I have not undergone BCG but I have researched it in depth. 48 is very young to have been diagnosed with bladder cancer, unfortunately it does happen.
If you have any specific question I can help you.
by cdon63 on Mon Apr 23, 2012 11:34 PM
I was diagnosed with bladder cancer at the age of 40 so I know what you are going through. I got treated with BCG. It was painful and got worse with each treatment. they instill it via a catheter - that was no problem. As you let it dwell- it became uncomfortable. each treatment got worse. It is the first treatment that they do for bladder treatment. I have had several reaccurences since.
by Arklite on Tue Apr 24, 2012 07:57 PM
Sorry to read about your misfortune, 40 is an unfortunate age to have bladder cancer. Can you be a little more specific as to your diagnosis? You mention you have had several reoccurrences, can you elaborate on them?
by ESchlaeger on Thu Apr 26, 2012 11:06 PM
Hi, and welcome to the Bladder Cancer message board. I'm so glad that you posted your request for information. We have so much hope around here from people like you and me. I hope you will feel empowered by your participation as the week and months roll bye.
I too have inherited Bladder Cancer, having been a smoking for over 15 years. I was 56 when I was diagnosed, also early in my life compared to many people who are diagnosed in their 60's and 70's, but noone appears to be exempt from this disease. As you may know, Bladder Cancer is up there in terms of how many people are diagnosed per year: (over 60,000 men and women and 17,000 people appear to succumb to it per year). However, from what I have read, the younger you are is probably something that will be in your favor. A younger person will hopefully be stronger, health wise, improving your chances, with treatment to fight off the cancer. That being said you may choose to be very proactive in the future about your health, what you eat, excercise, etc., etc. And if you ever smoked cigarettes, and you haven't stopped yet, please do immediately! That's the single biggest factor for bladder cancer or for reoccurence.
The Cancer Compass site is actually sponsored by the Cancer Treatment Center of America. I am a patient with them and can't say enough good things about CTCA. They treat me like an individual who matters and whom they truly care about. And we, the people under their care have come together in a group called Cancer Fighters. I hope to be someone to whom people with Bladder Cancer, both men and women will be able to approach for support and information and most importantly for emotional support and friendship. You know we have something very powerful in common. So, welcome to the one organization that we would never have chosen to join, but one great organization. WELCOME.
Your intial experience with bladder cancer is similar to most people. FEAR.... and followed closely by ignorance about the subject. So, I imagine that even by now you have been updated on your situation and that you have been looking at all of the stats and different treatments for bladder cancer.
BC, as it is normally called in the forums, is by no means the worst form of Cancer. It is very treatable and the vast majority of people have a long life before them. Like many forms of cancer, BC becomes something that you live with, and if you are at all spirtual it can be seen as a very big gift from God or from a higher power.
Bladder Cancer becomes a way for each of us to learn, quickly what it means to truly live one day at a time. And that is or can be a blessing for all of us.
O.K. now what about your cancer. Well, from the way you are describing your cancer and what the doctor wants to do, it sounds like you have a grade 3 tumor, not phase 3 bladder cancer. A grade 3 tumor is describing the kind of tumor that you have inherited (so to speak...). A grade 3 tumor is considered a high grade tumor with the POTENTIAL of becoming a more aggressive situation in the future. Although that is not great news...it's also not bad news, because it could be many, many years before that kind of tumor reappears, if ever. I'll tell you now that for the vast majority of people with a grade 3 tumor, or another high grade cancer call CIS or Carcinoma In Situ, the standard, first protocol after the TURB surgery is a 6 treatment protocol with BCG. So, on the surface it sounds as if that is what you are being advised by the physician and that is standard treatment, and btw, an excellent form of treatment. It has an extremely high success rate, over a 5 year period of time...and for BC that is an excellent prognosis. (we'll worry about that increasing in the future...)
Before I talk about the BCG, I'm presuming that you were talking about GRADE 3 tumors and not a Phase 3 (or III) development of your cancer. Phase 3 means that the cancer has actually invaded the wall of the bladder and has left the bladder moving into the lymph nodes. If that is your diagnosis, then BCG may be recommended, but I believe that physicians would be talking with you about aggressive forms of treatment including a Radical Cystectomy. I pray that is not the situation, to which you are addressing.
Most of us have what is called Transitional Cell Papillary Cancer which is cancer which affects the inner most lining of the bladder, to the cells which are made to expand and contract as your bladder fills and empties urine. So, what is required is constant vigilance, usually every three months for the first several years to watch for any changes or development of the cancer.
If the cancer is low grade, then it is usually just monitored with little other treatment other than removing the tumors as needed. But that doesn't tend to be a grade of cancer that will progress.
If you have high grade (called grade 2 or 3) tumors then although it is probably also just in the inner layer (one hopes) and therefore not seen as spreading (which means that it was caught soon enough) at the present time. It's that kind of cancer grade and phase that responds the best to BCG treatment.
BCG (and I can never remember the full name for it, other than the first word, Baccilus) is actually a form of weakened Tuberculosis that as you said in your statment, is instilled into the catheter on a cyclic and weekly basis). For most people it works and I'll let the physicians and other experts explain the rest.
It's not a fun treatment, but it's certainly doable. I did it with few problems. Actually my first two treatment were the worst and the last 4 were relatively mild. You end up very uncomfortable for the first night and the next day, although tired and for some people fluey, it tends to get better, quickly. Most people go to work after the first day and heck, we might need to go to the bathroom more and it can be sore, at the beginning (the urethra) but we fight on.
So, although I don't blame you for being scared and certainly when I go for my 3 month cystoscopies I don't jump up and down and rejoice, but for me, all has been negative, so far and I thank God for it all, both pleasant and unpleasant.
You should look forward to life, even with the cancer. You can have a normal sex life at 48 and the treatment staff ought to be very concerned about that need, with you in collaboration. I read about many men and women who have even had to lose their bladders and prostrate glands and many lymph nodes and they are still in loving sexual relationships. Thank God medicine is so advanced today.
So feel free to contact me, or anyone else for that matter and God bless you. Take care. Ed
by pcbcamping on Fri Apr 27, 2012 12:20 PM
I don't know what my tumor size is. I will be having the TURBT again to get more tissues. I don't understand why I have this because I am a femail and have never smoked. I was wondering more about side effects and if my grandchildren are allowed around......What can I expect?
by pcbcamping on Fri Apr 27, 2012 12:23 PM
Thanks for responding. I am a female and have never smoked so I don't know where this BC came from except from my God above telling me to slow down and smell the roses. I am better today than earlier. I am wondering what side effects and such of the BCG that I will need to watch out for. I look forward to keeping up with folks like me. Thanks for your kind words and wisdom. I will look forward to them over the next few months as I work to complete my cycle and treatments.
by pcbcamping on Fri Apr 27, 2012 12:37 PM
On Apr 23, 2012 11:34 PM cdon63 wrote: I was diagnosed with bladder cancer at the age of 40 so I know what you are going through. I got treated with BCG. It was painful and got worse with each treatment. they instill it via a catheter - that was no problem. As you let it dwell- it became uncomfortable. each treatment got worse. It is the first treatment that they do for bladder treatment. I have had several reaccurences since.
On Apr 23, 2012 11:34 PM cdon63 wrote:
I am a female and can't understand this stuff. So with the BCG, I will get sicker as the treatments go? What should I look for. All I have been told is that I will have fevers..... Tell me more about your reaccurences. I am 48 non-smoker and administrator of an office. I don't have any of the risk.......
by cdon63 on Fri Apr 27, 2012 01:37 PM
I too am a 49 yr old woman with no smoking history.There has been a link between early menopause and bladder cancer in women. I had BCG treatment after my second reaccurance. I did not have flu like symptoms- just pain at site. It is a live virus so you have to bleach the bathroom after emptying your bladder. I get a cystoscopy every 3 months and have had 4 reaccurances. fortunately they were caught early and just needed to be removed. I did go through a second round of treatments . been free for almost 2 years now. Just when you think everything is fine- there is another tumor. I know that my doctor is keeping it at bay but it is an emotional rollercoaster.
by pcbcamping on Fri Apr 27, 2012 02:22 PM
Nice to meet you cdon63! I appreciate you and your history. It makes me feel better. I see where you were diagnosed when you were 40 and now you are 49. That in and of itself gives me hope. The Dr. wants to treat me first with BCG. I am having my second TURBT next week. Seems like Dr. didn't get enough meet to make the other 3 pathology slides. So here we go again. Hopefully BCG will start later May. I would like to celebrate my 49th in style before treatments. I haven't seen the link you are talking about. I did have a cousin (she was 40) who died of Ovarian Cancer. She never could get hers diagnosed. Thanks for sharing with me. I find these boards helpful. ~Pat
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