HI Jillian and welcome to our site but sorry that you have reason to be here especially at such a young age!
I was 50 when diagnosed with multiple TaG3 tumours. I had my first TURBT in Sept 2008 followed by 6 weeks of BCG. All was good until July 2010 when at my cysto a single TaG3 tumour was discovered. I had a second TURBT in Sept 2010 followed by 15 more BCG treatments ( 1 round of 6 weeks followed by 3 sets of 3 weeks each over the course of a year). I have remained clear and expect to see the same when I go for my cysto this Thursday. I have done exactly what Jack has suggested. I did the BCGs and have been faithful with followup cystos. I truly believe the reason the second one was caught early was because of the three month intervals. I expect with an all clear this Thursday to graduate to annual checkups. For me BCG was very tough to do. I had a lot of side effects but to me it was preferable to losing my bladder. When I had the reoccurence I was tempted to talk to my uro about an RC (radical cysectomy – bladder removal) but after joining this site I learned just how big a surgery it really is and that gave me the motivation to pull myself up by my bootstraps and I powered through the BCG. Everyone is different on how they tolerate BCG and the success rate varies with each person too. The majority of people do have a good success with it. My first uro told me that 6 weeks of BCG is generally 60-70% successful and 1 year of maintnance treatments (the sets of 3) boosts that to over 80%. The idea behind BCG is to boost the immune system into eliminating possible remaining cancer, help prevent it from coming back and possibly going invasive. The longer you go between reoccurences the less likely it will go invasive. However those of us with high grade cancer have to be extra vigilant as we are at higher risk for it going invasive than someone with a low grade cancer.
I kept a journal for doing BCG noting how I felt, what happened that day, how the treatment went, side effects etc etc. I don’t plan on doing any more but I’m keeping the journal as a reminder of the battle I have fought. I also treated myself to something each week ie; new novel or a small piece of costume jewellry. I also bought jazzy socks for the days I go to the clinic for cystos or BCG. The nurses think they’re a hoot. I got them at the dollar store. Even though BCG is behind me, the cysto days are special to me. Some may think it wierd but I have a ritual that I follow for these times; I meditate, shower beforehand etc. It helps me stay grounded and centered. Everyone is different but I find these things help me cope.
As for what to tell your family that will depend on who it is. My kids were older and able to understand the process. If your kids are very young I would only tell them a simplified vesion of what’s happening; for example with the BCG you could say that the medicine will make me feel like I have the flu but it is making my body better. You can help me get better faster by doing your chores etc. My youngest who was the only one at home (age 14) at the time was very good at helping with cleaning the house etc. We gave him an allowance to say thankyou for all the work he did. This allowed me to rest more and attend to myself. I also cut my hours at work. My supervisor and coworkers were very supportive. I told my brother and his family but not my in-laws as we had just lost our mother to lung cancer and they were mourning her still. I also didn’t want certain relatives to know because I don’t like or trust them. I also didn’t want certain relatives to know because they are the freak out types and would expect a daily report and play by play of how I was feeling and what was happening. I felt I didn’t have the energy to support them. I was the one needing the support. You will find that some will support you more than others. I gained new friends and lost others. My son’s former tutor was a surprise support given that she had lost her hubby to leukemia 10 years earlier. She always called and made sure that I was OK. Another close friend just freaked out and left me out in the cold so to speak. We still don’t have any contact to this day. Use this site as a main source of support. We have all been here and understand how you feel. I too was absolutely terrifed when first diagnosed but have gotten through it. A nurse at the BCG clinic told me it would be a character building experinece and she has proven to be right even though I felt like throwing something at her at the time. LOL! Keep us posted and best wishes.
