Ups and Downs

By Tracyann

1 min read

Hi, I had my TURBT on August 5th, and they put one dose of mitomycin in for an hour straight after surgery.

I got my results Friday and have nonmuscle invasive cancer, which is aggressive. The surgeon said he had got it all, and it was small. I am now due to start BCG on September 20th as I'm going on holiday. They said it wouldn't make any difference a couple of weeks later, but now I'm worrying - will it make any difference?

3 years with BCG

I am on a course of BCG for 3 years I just hope it works. I worry about everything. I've read that recurrence is quite high than I read even if you have full bladder removal, you can still get cancer pop up somewhere else. I know I should stop reading everything, but when the Macmillian nurse told me that BCG only works for 65 percent of people (yes, I did ask), then I started looking.

One day I'm thinking they've got it, and the BCG is making sure it doesn't come back the next day I'm thinking it might not work - then what? I'm trying to stay positive.

A previous bout of breast cancer

I had breast cancer when I was 23 and had a mastectomy on one side because there was no internet then I just got on with it, and I'm still here 35 years later. And that was also aggressive, but I didn’t find that out until much later after treatment.

I wish I didn't know, and they just treated me life would be so much easier and far less stressful.

This is my story.

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Laura MacKenzie Member
<inline-mention username="Tracyann" user-id="4834771"/> sorry you on another cancer journey. I am not medically trained and have not had BCG treatment but I do know they keep an eye on things with follow up scopes etc to make sure it is working and to check for any changes. It is hard not to let your mind race but try not to think ahead too much. Take each day at a time. Write down any questions or concerns and discuss them with your medical team. Wishing you well. Let us know how you go. Hope you have a great holiday. Sending positive vibes from Scotland. Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>
Linda Urbanski Member
<inline-mention username="Tracyann" user-id="4834771"/> - Thank you for sharing your story and concerns. I am not a medical professional and cannot provide medical advice. My own cancer was high grade stage 1. I am not sure what stage you are but I am going to assume 1 as BCG is normally used for that. Keep an eye on things and see if the BCG works and keeps the tumors at bay. I chose to have bladder removal at stage one 8 years ago and my cancer was contained to my bladder so it had not spread elsewhere. I think if you read enough online you may find out more than you want to. I always suggest minimizing information as too much can cause you more stress than no knowing. Keep us updated on how you are doing. My best Linda Urbanski ( moderator, <a href='http://Bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
Tracyann Member
Hi Linda thank you, I am on there radar now just wanted to ask was it your choice to have your bladder removed or did they recommend this? Did you start BCG? Sorry to ask but it’s nice to know someone who’s been through this and come out the other side. Kind regards Tracy
1. Laura MacKenzie Member
 <inline-mention username="Tracyann" user-id="4834771"/> Linda will reply to your specific question. In my case, it was late stage and invasive but I can say I live well without my bladder and in my case two ostomies. Wishing you well. Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>
2. Linda Urbanski Member
 @Tracyann - I was diagnosed with high grade aggressive stage one. I was given the option of BCG and bladder removal. I also found both online and from the doctor that the BCG was not a guarantee - that it works for 2/3 of people. I wanted the cancer gone and as after 2 TURBTS my doctor and a second opinion doctor both felt my cancer was contained in my bladder, I chose RC. A cancellation from another patient moved my surgery up and I had it 3 weeks later. I started a new desk job 4 weeks later n - tired but happy to be post op and moving on with life. 8 years post op, life is great and I have absolutely no regrets and never have. RC is not for everyone but it was for me and my life is full and cancer free. Feel free to ask anything. I am an open book on this topic. My best to you. Linda Urbanski ( moderator, <a href='http://Bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
deelee Member
Traciann, my story is similar to yours. Five years ago this month, I had a TURBT and the mitomycin just like you. My cytology was read as Ta (superficial) and high grade. When reviewed a year later, that original tumor was recategorized by another pathologist as T1 and high grade. Had that been the original reading they would have offered me bladder removal, but... I had a total of 15 BCG installations over the 14 months following my TURBT before developing reactions that meant I couldn't continue BCG. (During that time I also had another biopsy that turned out negative.) Given the option to have another type of chemo installation, I opted for "wait and see". The happy news is: as of this month, August 2022, I am 5 years without a recurrence and have a bladder that works well. (I turned 70 this year) My urologist and I will discuss at my next cysto whether or not to go to yearly checks or continue every 6 month cystos. It's the high grade part of my diagnosis that may warrant continued higher frequency surveillance. I know that I won't ever be able to quit being checked, bladder cancer is sneaky like that, but I am so grateful for the quick diagnosis and treatment I received. So, I'm sort of "on the other side" and I hope hearing this is helpful to you. One other note, being female in the urology office isn't always easy. My original urologist was a capable physician but not good at explaining or talking with me and my anxiety was very high as a result. Advocate for yourself, push for answers and especially, if you can, get a second opinion. Second opinions are becoming standard of care now. And if necessary, find a new doctor who has compassion and will work WITH you and not just dictate your care. I know, hard work, but good mental health is just as much a part of your healing as surgery and BCG. All the best to you, Diane 
1. Linda Urbanski Member
 @laureldg3 - thank you for letting us know how you are doing. I also appreciated that your doctor mentioned that this is a life long disease and must be monitored. I notice on occasion when someone will mention being cancer free when they are actually NED and need to keep monitoring this for a return. As for RC and options, there are 3 options - NEO, IP and IC. My best option was IC and it works great for me and my lifestyle but that is me. I hope for everyone else who makes the decision for surgery to choose what works best for them and to have the best surgeon possible available. I also am sending prayers that your Sept testing is good news. We are always here to speak or communicate with others who are doing through treatments and surgeries. My very best to you!! Linda Urbanski ( moderator, <a href='http://Bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
2. Linda Urbanski Member
 @Diane - Thank you for sharing your personal story. I am happy to read that you are 5 years NED and that you are continuing surveillance as this cancer does hide and then suddenly rear its ugly head on occasion. I also had a great surgeon and very knowledgeable and compassionate medical team. I am 8 years post RC and to be honest, the fact that in 2 more years my testing will probably end causes me a bit of stress. I decided that I may just continue to have testing at my own cost after the 10 years. I do not thing that we ever completely feel free of this disease. My best to you Linda Urbanski ( moderator, <a href='http://Bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
laureldg3 Member
<inline-mention username="Tracyann" user-id="4834771"/> All I can do is to share my story with you. I think each person has to make the choice of what feels best to them once you get all the information. I was diagnosed with muscle invasive bladder cancer at stage 2 over two years ago. All the doctors I spoke to wanted to do an immediate radical cystectomy. I did lots of research, spoke to different doctors, and realized that I could get chemo before surgery and could actually make a decision about what type of surgery and who would do it afterwards. I was one of the lucky ones, as I responded to chemo very well. I was advised by my oncologist to see a doctor at a different hospital who would try to save my bladder if he thought I was a good candidate. After chemo, there was no sign of cancer, but it did come back a year later, but as non muscle invasive stage 1. My doctor said that he recommended BCG treatment which could work to keep the cancer from coming back after the TURBT that discovered it. I have had the initial six weeks of BCG once a week, and have already had two maintenance BCG treatments, each being once a week for three weeks. I made the decision to avoid the surgery, since if the BCG didn't work, I could have the surgery then. Of course you need to be absolutely okay with continual testing as you are never completely free of this. My doctor said that even if you do a few years of BCG and you're still okay, it could always come back years later. So, you need to think about what is most important to you. For me, it was to avoid the surgery if possible, but I am religious about getting tested. I have three big tests coming up on September 14th and am praying that I will still be okay. I wish you lots of luck in your battle. I agree with the other responders that you should always get second opinions. I am fortunate to have an amazing doctor who listens and is so caring. Try to find others who have gone through this and see who their doctors were. Or, ask your doctor to let you speak with some of their patients. That's what I did and I am so glad I did because my doctor was loved by everyone. Try not to worry so much. We can't always control what happens, but if you've done your research, you will feel better about it all. One more thing, if you must have the surgery, there are three options you have besides the ileal conduit. I would have chosen the Indiana Pouch. Wishing you lots of luck and good health!
1. Laura MacKenzie Member
 <inline-mention username="laureldg3" user-id="2071664"/> thank you for another fab, detailed, informative and insightful comment. I am not medically trained but would add that in some cases, like mine, only a ileal conduit is possible but for many an Indiana Pouch or neobladder is indeed possible and therefore does not require an external urostomy (bag). Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>

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