Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › Trying to Decide on Whether to Have BCG Treatment
- This topic has 20 replies, 6 voices, and was last updated 2 years, 7 months ago by
DJK.
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April 28, 2022 at 11:01 am #42907
DJK
ParticipantI had a high grade non invasive tumor removed in December last year, about a 2 cm tumor. My follow up cystoscopy last month visually showed a nice clean bladder and the CT and PET scans were clean as well. I am so very grateful for a successful TURBT, and my bladder hasn’t worked so good that I can remember. My urologist suggested I consider BCG treatment as a preventative measure, he wasn’t insistent but suggestive only. I thought that preventative maintenance is a good thing so I asked them to sign me up. Now that I have to return a call to the clinic to schedule my treatment(s) I am second guessing myself. The more I read about the side effects and such like the more I wonder if I should take a chance without it.
I’m curious if anyone decided not to do BCG and their thoughts on it. I know, everyone of us is different and I just have to make up my mind myself, but reassurances are nice. I never thought twice about every step along the way so far, why should I be questioning the follow up treatment?
Thanks!
April 29, 2022 at 2:10 am #42909Rosina
ParticipantHi DJK, I am someone who questions EVERYTHING so I can relate 🙂
I have not posted on here for a long time, since I was first diagnosed with bladder cancer in 2017. (May I just say, thank you to the beautiful people who replied to me back then with support, I’m sorry I just disappeared – I was scared!)
At that time (36 yrs old) I also had a high grade non muscle invasive tumour, around 1cm in size, and was recommended to have BCG treatment. For whatever reason, a bit of denial maybe, and fear of side effects, I declined BCG.
I went on to have cystoscopies every 3 months and was clear for just about 2 years, until I had a low grade recurrence in Jan 2019. Then 20 months later, Sep 2020 another recurrence, 3 tiny tumours which were again low grade. 12 months later Sep 2021, a recurrence of multiple tiny tumours this time. I had the TURBT and biopsy in December (I’m in Australia where the wait period can be up to 90 days in the public health system) – luckily the result was low grade again.
But guess what, I opted for BCG. I just finished the 6 week induction 4 weeks ago, with minimal side effects lucky for me. I’m now waiting on a cystoscopy and apparently they will be taking random biopsies.
Maybe I could have avoided the last 3 TURBTs by having BCG the first time around!! But still I don’t regret delaying it, I’ve had the privilege of being able to come to terms with things over time. I recognise that others have to make bigger scarier decisions in a short amount of time.
Wishing you all the best whatever you decide 🙂
April 30, 2022 at 7:25 pm #42913DJK
ParticipantThanks Rosina, I decided to book the BCG treatments. I figure the side effects pale in comparison to what might happen if I lose the gamble.
May 1, 2022 at 9:11 am #42916Nightingale
KeymasterHello DJK and Rosina,
My thanks to both of you for sharing your story in the Forum. It is indeed nice to have a choice on which way to go. The thing I’ve learned in moderating the Forum is that we all unique and so sometimes a decision by one person may not apply to another. So DJK, it will be interesting to see how your journey continues. I myself got very lucky and did not have to take the BCG treatment. I had low grade non-invasive and after 7 years of regular checkups I no longer need to do so. I am a 12 year survivor. I wish both of you the best of luck and good fortune!
My best,
May 1, 2022 at 8:04 pm #42918marysue
ParticipantHi DJK and Rosina:
As we all have said, it is a personal decision as to decide which way to go. When I was diagnosed with bladder cancer in 2008 it was non-muscle invasive but high grade. My then urologist gave me three choices:
1) Watch and wait with cystoscopies every 3 months and we’d act upon anything happening at the time. He advised against this option because the cancer was high grade and he told me that I was at very high risk for it to recur in less than 2 years and at a pretty high risk for progression if it did recur.
2) Have a second TURBT to possibly increase the likelihood of success against recurrence. He advised against this option as well saying that in my case he didn’t think it wise for me to have another surgery so soon and that he couldn’t guarantee that he would be able to find the previous surgical sites if they were well healed over.
3) BCG treatments – He recommended 6 treatments – once a week for 6 weeks with a follow up cystoscopy about a month after to see how things were. I was not given much info at the time regarding side effects other than I would probably feel fatigue and like I had the flu and maybe some bladder irritation. On top of this choice unknown to me at the time was that I would experience flashbacks to my childhood when I had to have 3 urological surgeries to correct birth defects. The pre-surgery diagnostic tests were very invasive and painful and when I started BCG the flashbacks started. I also had a heck of a lot of side effects and more than once I wanted to quit especially when I experienced a small recurrence in 2010. At the start of the BCG treatments my uro told me that most people after 6 treatments could expect about a 70% success rate. Unfortunately I fell into the 30% unsuccessful. At this time I discovered BCC and learned from others that the newer protocol at the time was a set of 6 initial treatments followed by 3 sets of 3 at 3,6, and 12 months from the initial 6. I also learned that the extra treatment sets upped the success rate to over 80%. My uro had me do a second set of 6 with the 3 sets of 3. As tough as it was I put my big girl pants on and got ‘er done. I have been cancer free since September 2010.
I weighed the 70-80% chance of success with treatments versus the 50+% recurrence rate without treatments and also the risk of progression. High grade cancer is nothing to mess with. It means it is an aggressive cancer than means business.
I am now at the point that I no longer need checkups. It was worth the extra effort and “suffering” to get to where I am today.
Best of luck going forward. ((((HUGS))))
May 2, 2022 at 2:34 pm #42926Tana
ParticipantInteresting you say worth the suffering Mary Sue. Kind of spells it out – also I bet there’s a lot of suffering over deciding do I or Don’t I and the wait and wondering.
Dear DJK : I definitely did not want the BCG. I was diagnosed with ta High grade non muscle in Sept 2019. Funny – when I asked if there were side effects – my urologist- said oh yes.
Then another time said oh you shouldn’t have any fatigue because that’s what got me down the most. It did feel like a low grade flu but I had anxiety a couple of times and got tense and had alot of nausea and threw up. And headaches- thanks Mike for the suggestion for Tylenol after!
Maybe the nausea didn’t have anything g to do with the BCG? I did get a severe infection one time ending up in emergency for antibiotics but that was a casual nurse doing a sloppy job not clean when administering the BCG.
I started in 2o20 January- did 6 weeks – then the 3 weeks – the three year protocol the urologist said was best. Oh yes had two Turbts right away to get rid of the tumours and had mitomyacin sprayed in.
In 2022 had a biopsy’s done because of bladder looking inflamed and a red spot. But no cancer. It’s from the BCG. But doc wants me to continue the treatments until the third year is up- he’s stuck on that- I was ready to quit after the biopsy. So am due in June 2022 ( it is my third session of three weeks after 6 months now). Certainly not looking forward to it as it’s like Russian roulette ( gosh I hope that’s no being racist and I appologize if it offends) because I never know the outcome- just that I deal with it and tell myself I am giving myself the best self-care to be clear ! Also the forum members have been so encouraging ( thanks all) that have mentioned to hang in there – see it through- it’s worth it! How nice to have this freedom coming up and the next chance to be cancer free like the others! Omg ! So one more three weeks in December after this one in June ( and I say with “tongue in cheek”) because by the grace of the universe I go.
So that brings the question: Why did I decide ? Probably from fear that if I didn’t and I got a recurrence id be sSO annoyed!! Just do it! That’s the attitude I am living by. And also my family though I know ultimately it is my journey my choice. It’s a crap shoot.
so far so good – here I am doing pretty darn good –aAll the best to you All and to you DJK- thanks for your sharing .
May 26, 2022 at 1:43 pm #43046DJK
ParticipantThanks for the encouraging words, it’s good to hear someone’s voice on things like this.
This morning was my first of six BCG treatments. So far so good, almost feeling like I’m buzzed or something but not sick, other than a headache. While I had a bit of an internal discussion with myself on whether to do it or not, I feel real good about my decision now.
May 26, 2022 at 9:38 pm #43048Stever
KeymasterI was first diagnosed in the fall of 2017. Several cystoscopies and TURBUT’s later as well as BCG and still aggressive and invading so I now have a urostomy.
As far as the BCG, I did 6 treatments with no I’ll effects whatsoever. They were the typical, one treatment per week for 6 weeks but follow up cystoscopies and TURBUT’s showed no improvement and biopsies showed very aggressive cancer so get it out before it spread.
I am now 3 years post surgery and doing well.
Everybody is different when we take medications. What effects one person doesn’t effect the next or maybe it is more complicated. BCG treatment helps in most cases and usually any side effects are worth the positive outcome. At least you tried. It didn’t work for me but it does for many.
Stever
June 2, 2022 at 5:32 pm #43219Tana
ParticipantHi DJK;
You feel buzzed?! Wow- and just a headache- !
Only once did that “buzz” happen to me. I liked it- lol- like I had a glass of wine or something.
Glad you feel good about your decision.
Hope it all is continuing well for you- all the best-cheers- Tana
June 2, 2022 at 5:38 pm #43220Nightingale
KeymasterHi DJK,
I’ve never had the BCG treatment and therefore have no personal experience that I can share. I am glad however that you feel buzzed…LOL!
My best,
June 8, 2022 at 11:05 am #43258DJK
ParticipantWell I go for round 3 of BCG tomorrow. Before they gave me the treatment the last two times they asked if I was on antibiotics. I wasn’t but I am now, I have a sinus/throat infection that pushes on my teeth and the pain is so bad so I caved in for the antibiotics and a little tramacet. My GP doctor doesn’t think it should interfere with the treatment. I tried to call the clinic to ask but can’t get through. I’m curious if anyone knows if there is a problem with getting the BCG treatment while on antibiotics.
Cheers!
June 8, 2022 at 2:07 pm #43259DJK
ParticipantI got through to the clinic and got the answer to my question. They said that they won’t do the BCG treatment while I am on antibiotics. So we’ll skip this week and they will call me next week to re-assess. Oh well, better to get this sinus/throat thing under control. I hope there isn’t trouble with skipping a week, but I really do have confidence in these professionals to guide me.
June 8, 2022 at 3:00 pm #43260Tana
ParticipantDJK; Hi! Sorry to hear of the pain and infection. Such a nuisance to have. Sure hope it clears up fast! – I get BCG June 23/31 and July 7th. How many weeks for you? I’ve “progressed” to 3 installations every 6 months now. I see you got your answer regarding having BCG while on Antibiotics. I was going to say that they told me I had to wait a week also. I had the antibiotics for an infection in the bladder one time. So happy they cleared it up. I hope your sinus infection gets cleared fast. Actually there were a couple of times during my 6 week treatments of BCG where I missed one week and they added me on. One time I had to pee it all out in 20 minutes when the nurse didn’t drain me completely. I sure was freaked over losing that precious cargo! But so far so good!
All the best. Cheers that you sail on through this all good all the way.Tana
June 9, 2022 at 6:08 am #43270Rosina
ParticipantHi everyone, thanks for sharing your experiences. It must be great not to have checkups now Marysue after everything! And Stever that you’re doing well after your surgery 3 years ago.
I’m really glad to hear you are feeling good about your decision DJK, and you’re already getting through your treatment. At least you might enjoy having a week off! I hope you get well soon.
I was supposed to have been in for cystoscopy and biopsies by now, but I got covid , so it’s been delayed 8 weeks . It’s to do with the general anaesthetic apparently. I expect the maintenance BCG to be prescribed after that, here in Australia it’s once every 4 weeks. There’s definitely not an exact science is there?!
June 30, 2022 at 4:00 pm #43364DJK
ParticipantBCG # 4 is now done. I missed another week for another medical issue that I had to see my GP on, I had severe neck pain and headaches along with fatigue and dizziness (doc is running some tests for something called PMR as well as neck x-rays). I’m feeling quite well now and just got back from the clinic. But I’m getting used to the idea to write off the day of treatment due to fatigue, just a good excuse to do nothing, 🙂
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