BCG

[shelties]

Hi Jack, thanks for the congrats. I thought there for awhile I would be having to get BCG again and thank goodness I don’t have to. Mind you though, BCG is what got me to this point and for sure, I am very thankful it was there for me. Now I’m getting greedy. I would like to get “all clears” from now on. In any case, I will take this one and be thankful for it.

Lorraine

[Marie 1]

Lorraine, I am so happy to hear that you received an “all clear” report today.

I read your post earlier and was thinking and praying for you today.

My three month cystoscopy is scheduled for April 5th and am already getting anxious. I can only hope and pray that “all clears” will be in my future.

I wish you all the best.

God bless
Marie

[KIOWA]

Hey Lorraine. Great news on the all clear. Hang in there for the rest of the problems. I keep all of you in my prayers. You are absolutely right about small mercies. If we can appreciate those we are really in good shape. And speaking of kick the can, I thought that was just a Texas things! I used to play that when I was a kid. With my dog. We lived in the county so rarely was there another live human my age to play with. But I did play by yself. I played CRUSH the can. Whenever i saw a loose can I stomped on it!. I guess that would be called Stomp The Can. Oh, and bottle caps. I used to collect those. Now I collect golf balls! Sorry Jack!

Kiowa

[shelties]

Hi Marie, thank you for the prayers and well wishes. Perhaps this is a good year for all of us, so here’s hoping you get the all clear in April. I hate the darn cystoscopies, but somehow when getting an all clear, it really doesn’t seem so bad after all. A real downer though when its’ not an all clear. Don’t lose hope.
Kiowa, are you sure you didn’t grow up in the same neighborhood as me? When we were kids growing up there wasn’t a lot of money to go around so we made our own fun with whatever was at our disposal. Whistles that my dad made from some kind of tree, chestnuts for ammo in sling shots, etc. I guess that’s how we learned to be resourceful. So, what do you do with the golf balls? Do you golf? Obviously, Jack does and likely loses a lot of balls to people like you. At least I assume that’s why you apologized to him.

Well here we are at the end of Feb. and so far, we have had a not too bad winter. Once we get through March we’ll be home free! We sure needed a break here in the Maritimes after last winter. Now, I’m talking about mainland Nova Scotia as I think other places in the Maritimes may have received a bit more storms than we did here.

Good luck everyone who has stuff coming up in March. Somehow, when my good news happens at the same time as others going through this stuff, it makes me feel even better. Take care everyone.

Lorraine

[GM]

Well….I’m crushed….again….. Was going on over a week without having blood (or none I could see) to peeing last night and having blood again. Back to moping. I really thought it was done. I woulda thought, since having this little surgery Jan 11th, this would have stopped by now!! Grrrrrrrrr……

[GM]

GM, after my last TURBT (2nd in 3 weeks) I bled for almost 9 weeks so I couldn’t start BCG while there was an open wound in my bladder .You should avoid getting it into your bloodstream. So 6 weekly treatments will be followed by another set of 3 after 6 weeks and another cystocopsy then….?

How come you had 2 TURBTs in 3 weeks? Did something show up again or was it from your bleeding?
When you said you bled for 9 weeks…. How often was it? Like for me, once a week I will have blood in my urine. I know this is normal but 6-7 weeks after TURBT?? That seems off doesn’t it?
Curious to hear about yours.

[marysue]

Hi GM:

Some patients have 2 TURBTs close together as per their uro usually for the following reasons:

1) Pathology results from the first TURBT were unclear because of the type or lack of tissue samples.

2) If there is suspicion of a potential muscle invasive diagnosis (Stage or T2) so this reTURBT as some call it allow for a recheck so to speak. This often done for patients that are Stage or T1 where the tumours have progressed to the lamina propria – just under the surface of the inside of the bladder.

3) Some uros prefer to do two TURBTs close together to allow for lesser risk of reoccurrence.

Since you are still bleeding off and on and it was only one small tumour I’d check with your uro about the possible reasons why. As previously mentioned; make sure that you are not doing too much too soon and get checked if you haven’t already done so to make sure that you don’t have a UTI (bladder infection). If you are diabetic or taking blood thinners that may also be a reason for discussion with the doctor as well because both can slow down healing. You may need to have a cysto exam to figure out the cause. Only your uro will be able to tell you for sure.

I would consult him anyways to find out what the follow up protocol is for your situation – whether you will be just going for follow up cystos or need some BCG treatment. If BCG is in order then you will need to heal first as a wound in the bladder wall would allow for the BCG to enter your bloodstream and possibly cause a systemic infection. I hope this information helps. Take care. ((((HUGS)))))

[GM]

Hi GM:

Some patients have 2 TURBTs close together as per their uro usually for the following reasons:

1) Pathology results from the first TURBT were unclear because of the type or lack of tissue samples.

2) If there is suspicion of a potential muscle invasive diagnosis (Stage or T2) so this reTURBT as some call it allow for a recheck so to speak. This often done for patients that are Stage or T1 where the tumours have progressed to the lamina propria – just under the surface of the inside of the bladder.

3) Some uros prefer to do two TURBTs close together to allow for lesser risk of reoccurrence.

Since you are still bleeding off and on and it was only one small tumour I’d check with your uro about the possible reasons why. As previously mentioned; make sure that you are not doing too much too soon and get checked if you haven’t already done so to make sure that you don’t have a UTI (bladder infection). If you are diabetic or taking blood thinners that may also be a reason for discussion with the doctor as well because both can slow down healing. You may need to have a cysto exam to figure out the cause. Only your uro will be able to tell you for sure.

I would consult him anyways to find out what the follow up protocol is for your situation – whether you will be just going for follow up cystos or need some BCG treatment. If BCG is in order then you will need to heal first as a wound in the bladder wall would allow for the BCG to enter your bloodstream and possibly cause a systemic infection. I hope this information helps. Take care. ((((HUGS)))))

Hey Marysue…….

Question……what do you mean by not doing too much too soon?? 3-4 days after my TURBT I was doing everything I normally would do. Work, exercise etc etc. I felt good and back to normal. Do you think that has anything to do with this “once a week blood in my urine”?

[DDep]

GM

Too much too soon ? Just to help with what MarySue wrote … I received the following guidance following my TURBTs:

Diet:

You may return to your normal diet immediately. Because of the raw surface, alcohol, spicy foods acidic foods and drinks with caffeine may cause irritation or urinary frequency and should be used in moderation. To keep your urine flowing freely and to avoid constipation, drink plenty of fluids during the day (8-10 glasses, water is best) Tip: Avoid Cranberry juice, it is very acidic!

Activity:

Your physical activities are to be restricted, especially during the first one to two weeks. During this time use the following guidelines:
1) No lifting heavy objects (anything greater than 4kg or 10lbs)
2) Limit long car rides
3) No strenuous exercise, limit stair climbing to a minimum
4) No sexual intercourse until okayed by one of your doctors
5) No severe straining during bowel movements – take a laxative if necessary

That is the advice I got for my situation. “Your mileage may vary”. As each patient is different (has their unique physiology) and each MD has a different approach, I recommend you check with your doctor/urologist.

God Bless

DDep

[marysue]

Hi GM:

I was instructed not to drive for a week, avoid lifting over 10lbs for about a month, avoid heavy housework especially vacuuming. I was told I could go back to work 1-3 weeks after depending on how I was feeling and what my duties were. That didn’t apply with my first TURBT since I was a stay-at-home mom at the time but the second time I was working part time retail. Since my job involved a lot of lifting and getting up and down my supervisor and I agreed to 3 weeks off with a possible extension of 1-2 weeks jus if needed. I did return after 3 weeks but on a much lesser schedule and was instructed to do only what I could manage, in other words leave it for others if it was too heavy, or I was getting tired etc. I also avoided sex for 1 month each time since the pressure would be on my bladder obviously since I’m female. I was too friggin’ sore down below anyhow to want any romance.

Also, as Ddep says avoid constipation as well. I needed a laxative for a short bit to get things “back to normal”. Straining will put pressure on the bladder.

Diet can be normal as soon as you feel able to eat after the surgery. I was eating and drinking within a couple of hours after waking up after the TURBT. I didn’t resume a full diet for a couple of days, just relying on soups and light foods like scrambled eggs.

I slept a lot for the first 2-3 days after. I think my body was still dealing with getting rid of the anesetic. I rested each day for an hour after midday for the first 1-3 weeks even though I sometimes didn’t feel tired. I would just get a cup of peppermint tea and curl up with a good book if I didn’t need a nap.

Even though you feel okay, if you are exercising ie. being a weight lifter or gym rat on a tread mill or some other type of machinery you are putting pressure on your bladder and reopening the wound. So I’m willing to bet it is your exercise routine that is the possible culprit.

The best exercise I was told after a TURBT was walking at short intervals and gradually increasing the time and frequency as I felt able and then gradually resume my regular routine over a month or so. As a result of these precautions I only had 1 minor bleeding episode after each TURBT the following week.

Some docs are vague in their instruction. When I found out that it would be an open wound in my bladder that would take 4-6 weeks to heal over it just made sense to me to resume things slowly. By the way it was the nurse at the hospital that told me about the open wound thing not my doctor. I learned more about the surgery from the nurses and doing Dr. Google and then later of course from joining Bladder Cancer Canada than from either of my uros. Hope this helps. Take care. (((((HUGS)))))

[GM]

Hi again everyone!! I really appreciate all of this. Whoa!! I wasn’t told any of this!! I was up and at it 3 days after the surgery!! Back to work, back to my 15,000 steps a day, work etc I’m starting to think this is why things aren’t healing…… Or at least I hope that’s all it is and not another Tumor. I’ve been a little sore. It’s almost like I’m cramping. Lasts for a few hours. Had blood in my urine again today…. 2 times that was noticeable. Last time was Friday. Seems like stress activates this but how could that be. Probably all in my head.
Again, thanks to everyone for all your kind words and advice. I hope everyone is doing good!!

[Author]

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