BCG treatment
I have been fighting bladder cancer for 24 years now. A few weeks ago I had another two tumours removed. Last week my surgeon sent for me and told me my cancer was now high grade, high risk. As I have previously had chemotherapy and discovered that I was allergic to it he told me that there is now 3 options for me. The first was do nothing, or have BCG treatment or have major surgery to have my bladder, womb, ovaries, lymph nodes and part of my vagina removed. I told him that surgery would be a last resort for me. Has anyone been in a similar situation to me and if so can you tell me if BCG worked for you?
sorry you have been going through this journey for so long. I can’t comment on BCG from a personal experience and I am not medically trained. I know BCG is often used for early stage cancer. I can however comment on the surgery. I understand it’s last resort and not something you would want to have. I can tell you however if you go down this route, there is absolutely a good life on the other side. The recovery is tough, I won’t deny it but after you can go back to a normal life. I work full time and vacation long haul. Laura, Moderator, BladderCancer.net 
@Linda G - I wish you did not have to be on this site but we are a very supportive group. May I ask what stage you are? The reason I ask is you mentioned having had chemo. I am not a medical professional and cannot provide medical advice but know that BCG is used normally for early stage bladder cancer. It seems to work for some people and not for others. Also when it has not worked at times there are other options provided that are not surgical. Unfortunately there are no guarantees.
It is a choice and I applaud you for dealing with this for some many years. I did not have BCG but chose to go right to surgery 8 years ago. I made the right decision for me and am happy to be cancer free. I agree with Laura that there can be a good life being bladderless. High grade is a slippery slope so I would look at your options and consider what works best for you and your lifestyle. Please keep us posted on how you are doing and know that we are here to support you and answer questions if possible whatever you decide. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)
Hi there,
As I said previously I have been fighting this for a long time. I've had tumours removed but they keep returning. When I saw the surgeon the other week he just said that it was high grade, high risk. He spoke about what can be done but seemed to be keen on the surgery. I am not and will only do it as a last resort. Unfortunately he did not give me the opportunity to ask questions so I don't know what stage it is at. I have had chemotherapy but after a couple of sessions it was discovered that I was allergic to it and then within a couple of months of that I had to have another two tumours removed after which the surgeon sent for me to discuss what was next.
This is the reason that I joined this site hoping that I might find answers.I was originally diagnosed with high grade stage 2 muscle invasive bladder cancer two years ago. After successfully completing four cycles of chemo through a port, I was cancer free. However, it came back a year later as stage 1. My surgeon in NY tries everything to avoid bladder removal in certain patients and I qualified. I have had six sessions of BCG with two separate three weeks of BCG maintenance three months apart. In September I return to him for a catscan, MRI of the bladder, and a cystoscopy. If all is well, I continue to get the BCG maintenance in a few months. There is always the possibility of it returning, but so far, I have been lucky. The BCG is not terrible, but you have to be diligent about returning for continual tests to make sure it doesn't come back. If it does during the "maintenance" (which is once a week for three weeks), then surgery would be the next step. I hope I will be one of the lucky ones. I wish you so much luck in dealing with this. Every case is different so there is never one answer for all. hey. Hope you are having a good day. Thanks as always for sharing your experiences. Good luck with your scans and scope. Hope that the maintenance is successful for you. Wishing you well. Laura, Moderator, BladderCancer.net
Yesterday I had a phone call from the nurse practitioner who previously gave me chemo directly into my bladder. As I said before I developed an allergy to this and had to stop. I asked her lots of questions which she very kindly answered. I also asked her if many people like myself had opted for surgery rather than B.C.G.and she said that many had.
I do not know what a patient portal is and don't think we have such a thing in the U.K. However I am starting my B.C.G. treatment on Wednesday next week and can only hope that I can tolerate that better than the chemo.
I asked the nurse why the surgeon was so keen on the surgery and she told me that it's better to have the surgery than risk the cancer spreading. Tomorrow I go into hospital for a C.T. scan to see if it has spread so keep your fingers crossed for me.Linda G - You must have had a different form of treatment as BCG is commonly used and is introduced directly into the bladder. A patient portal is a site where you can access your medical information such as appointments, test results, appointment summaries and send a message to anyone on your medical team. They are used widely here and are a great way to get information or send a message, question, etc, schedule an appt any time of the day. Sending prayers your way that your treatment goes well and is successful and your scan shows no other involvement. Please keep us posted on how you area doing. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)
hi. Firstly wishing you good luck with the BCG. I am in the UK and we don’t have a patient portal but you do have a right to ask for any files at anytime and a clinical nurse specialist (CNS) should be accessible for questions. Obviously you have a lot of experience with the unfortunate fact you have been going through this so long. My cancer was late stage and invasive so options were limited. I personally would say and I am neither medically trained nor wish to tell you what to do but I think surgery to prevent spread, if that’s your consultant’s view, I personally would be inclined to take his advice. I was 40 years old at diagnosis. My cancer was so invasive involved a high risk operation of which part was bladder removal. I have two stoma bags. I live a very normal life. I work full time and love travelling long haul for holidays. Please know there
Is a good life to be lived afterwards. I know it’s daunting but with the chance to free you off the cancer, it might be worth considering. Hope all goes well with the scan tomorrow. Laura, Moderator, Bladdercancer.net
