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Hello, my name is Jill. I am 41 years old, married, and with three children. My youngest is 9 months old. About 18 months ago, I noticed that my urine was pink. I ignored it, thinking It was menstrual spotting. One year ago, I had a very bad bout of gross hematuria while on vacation. When I returned home, it had stopped but I went into my GP. A urine test showed micro hematuria but no infection. My GP put me on antibiotics. 10 months later, my urine was pink again. I went to see my GP, but by the time I could get in, there was no trace of blood. She believed it was menstrual spotting. Three weeks ago, I had another very bad bout of gross hematuria with clotting. I went to walk in clinic. Gave a urine sample and I requested a referral to a urologist. The next day I followed up with the urologist and had an appointment later the same day. A cystoscopy under general anesthetic was booked a few days later (as well as a bunch of tests in between). During the cytoscopy a 2cm PTaG3 tumour was removed with healthy margins. I start BCG treatment on Wednesday. I am scared. I feel like I want a RC right away to eliminate any risk of this spreading. I understand that there is a good chance a tumour will grow again and next time could be muscle invasive (Q: if I get regular cystoscopies, would they not catch a tumour before it got to T1/T2?). I am just at the beginning here, not sure what to expect. What do I tell my children? My family?
Hi Jill
Sorry you have been diagnosed with bladder cancer. Yes we were all terrified when we first found out. Sharing with your family and friends can also be difficult. I chose to be positive with them, and tell them I required some treatments that would cure me. When I did have recurrences I chose to tell them that it was no big deal and that the treatments were working and I would be cured very soon. Even though I was terrified I put on the smiling face, but my wife knew I was terrified. In my case the BCG did eventually do the job and I have been now over 5 years cancer free.
The odds are in your favour that with the BCG treatments and 3 month check-ups that if you do have a recurrence, it will not go beyond TA. The problem with bladder cancer is it is very unpredictable, especially high grade and hence the reason for the 3 month cystos.
Insure to get a copy of your pathology report, and start keeping a journal recording each BCG treatment and how you felt after the treatment and for the next few days. Side effects do vary by patient, but the normal trend is they seem to be progressive with each treatment.
Keep us posted on your progress, and all the best with your next 5 treatments.
BCG = Bladder Cancer Gone
JackHI 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.
Hi Jill. You have come to a place that can be a great support to you because we have been where you are and felt what you are feeling. As Jack and Sue have said, BCG can be very effective against your condition and keeping a good attitude about the whole process just makes the journey easier.
As one who has had an RC (Dec 2010) I suggest you do not even contemplate such an operation until you need it – and that day will likely never come (it is possible, but unlikely). Big surgery, long recovery, challenging changes – but even still, a good outcome in many, if not most, cases. Go for the BCG treatments and never miss a urology appointment or cystoscopy because, as you say, better to catch any recurrences early if they happen. Since your tumour was G3 that means it is aggressive and forms quickly. So progression to T1 or deeper is always a possibility, but not one to spend an ounce of energy worrying about. Take the best care of yourself as you can and get the best uro-oncologist that you can (not just a urologist but a uro who deals with bladder cancer).
What you tell your family is up to you. I always have found that my children have been very resilient and took their “worry cues” from me. If I appeared not to be too upset, they were not either. As a result, I promised them early on that I would always tell them the truth and I have done that. They deserve it and are mature enough to accept it. And since I am not a worrier by nature, they seem not to be either. With younger kids, you will know how best to explain what you can and what to omit if necessary. But better you tell them than they hear it from someone else (that’s just my own opinion). Then you can couch it in whatever terms you feel are appropriate for their age and maturity. Not easy, but we can all grow from these experiences, kids and adults alike.
Relax a little if you can. The “C” word is frightening, but need not be overwhelming. And believe it or not, you’ll even learn to laugh about it down the road. Mark my words!
All the very best,
GregThank you all very much for your help and advice. I have worked really long hours for a really long time, and have had a hard time saying “no.” This diagnosis has been a wake-up call. I am trying very hard to slow down. I used to die my hair brown (roots every month). Interestingly, I abruptly cut off all my long brow hair to a short white blonde pixie cut last June. Now, I wonder if somewhere inside of me I knew the dye was making me sick. So, there is no more aniline dye in my life. I have also given up all fake sweeteners (I used to drink a lot of diet coke). Now, I drink water or vitamin water. I am trying to eat more vegetables. I should exercise more–but have had a hard time jump starting myself. Feel so tired. I am still bleeding from the TURB, which was apparently quite deep to get healthy margins. I will definitely follow treatment carefully. I have both a urologist and an oncologist and am registered with the BC Cancer Centre. I get my BCG from their cancer clinic pharmacy. I am not sure if there is anything else I should do?? I very much appreciate the advice. (Ps–have told my older girls; ages 10 & 12. Bought them the bladder cancer awareness wrist bands)
I too,dyed my hair dark brown for many years. I greyed early. It is hereditary but I blamed raising 4 sons (only kidding!) I am convinced the dye contains chemicals that put one at risk for BC. I also learned from the uro that spoke at the Calgary Patient conference in October 2011 that certain people have a genetic type that causes one to eliminate toxins at a slower rate then average. There isn’t a test available yet for that. So I figure in my case if I do have that genetic thing combined with use of dye, exposure to chemicals, pollution, childhood exposure to lots of second hand smoke and I also wonder if my long use of post surgical meds for urological surgeries in childhood had anything to do woth it as well. If it were to turn out that all of these things play a role then I inadvertently set myself up for this ticking time bomb.
Some suggestions for BCG as a female with experience… The drug burns like a b**** on the first void (does for the guys too) but what I found helped with this was to pour cool water over the genital area as I was peeing. I also found applying Lanacaine cream to the genital area helped as I experienced irritation in the genital area from the BCG. Wash yourself carefully afterwards too. Make sure that you keep any washclothes used for washing yourself away from family members. Drink lots of water post treatment to flush the reamining drug out of your system. I also suggest avoiding caffeine consumption as well as caffeine tends to irritate the bladder.
Try to rest as much as you can if you are still bleeding. Rest will help you heal faster. No heavy lifting or cleaning for 4-6 weeks. If you work reduce your hours for a bit especially during BCG treatments. Try to go for short walks. Don’t worry about boot camp exercise regimes. Walking will build up your physical strength. I suggest trying a beginner yoga class when you are healed. It will help build up care body strength without a lot of undo stress on your body. I do acupuncture as I believe that it helps with healing and I know it did help me recover from the side effects of BCG.
If nothing taught you to say no before this will. You have an excuse. You are now the priority. I too, used to push myself too hard. Use this time to learn and grow and do stuff for yourself. I made time to participate in support programs at Wellspring Calgary. It is a cancer support center for anyone with cancer and their families. The programs along with yoga, support from this site helped me deal with it. I hope my suggestions give you some “food for thought”.
Hello, I started BCG. It was uncomfortable and awkward, but not painful. I have had chills, but no other side effect. I realize that this will get worse each time. I would like to thank you all for your support. It is very helpful know that this support is available.
Hi Jillian, welcome to the site and sorry to hear your story. My mom had non-muscle invasive BC and recieved BCG which she felt nothing except difficult to hold for at least 2 hours before discharging the drugs. Apparently my mom did not react to BCG at all and about half a year later, the BC advanced to muscle invasive. She then received radiation and chemo (cisplatin) therapies. She has experienced relatively mild side-effects like weakness and nausea. Now she is cancer free!! For years now, she too dyes her hair brown every other month but we don’t know if that has anything to do with her BC. Anyway please be strong and hopeful!
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