Not again!! :(

[GM]

Hi again everyone…..
I am gutted today…. I pee’d blood again. This is how this all started for me Jan 1st of this yr. had TURBT, got a small Tumor out. Pee’d blood, once a week for almost 8 weeks. That finally stopped. Then today, it happened again. Does this mean what I think it means? I go for my first maintenance scope on the 11th of May. Should I just wait until then or call him sooner? I don’t have a good feeling about this. :'(

[Rick B]

Hi GM.

Sorry to hear you are seeing red. I recall some of your previous posting and wonder what was the outcome of the earlier incidents you had? Did you go see your URO about those and if so what was the outcome?

If I were you I would let my Uro know right away…you may be able to get your follow-up exam moved up. The earlier you have this checked the better.

Hope all works out for you…keep us in the loop.

Rick

[GM]

Yes…..finally after 7 weeks, so maybe mid March….I the weekly red stopped. I was so happy… I was going to call my URO but thankfully I didn’t have to! . Then again today it happened. My stomach sank. I couldn’t believe it. I’m scared now! Started this morning and was noticeable the past 5 voids. Now it seems good again…. I don’t know. This is just stupid!

[Jack Moon]

Hi GM

I agree with Rick, I would recommend you give your Uro a call to let him know. Good luck on the 11th.
All the best,
Jack

[cheryl9]

Hello GM

Can definitely relate to how you feel right now.

Any chance you had any trauma to your abdominal area? Long shot, but from my understanding there are three things that can cause blood in the urine: infection; cancer; trauma.

Definitely contact your uro. I was so deflated a year ago when I had visible blood. Right before a Def Leppard concert to boot. Contacted uro and he anticipated it was caused by irritation. Did put my mind to rest a lot but was also on pins and needles for my scope that was 10 days away. Focused on other things for those ten days so they didn’t drag.

Most important is your state of mind. To help: take a deep breath or two or three or four or five or however many it takes; cry as needed; hug those you love; cry again if needed; spend time with those you are close to; and learn to laugh again. Then you will start to heal.

Hanging around swinging from the ceiling will not help anything. You need that time and energy to focus on your health. Not on checking out the ceiling paint.

Take care
Cheryl

[GM]

Whoa! Rough day today. Lots of blood in my urine. Quite red. Have my cysto May 11 but not sure if I should wait til then. A bit crampy too. Ugh!! Is a week really going to make a difference to wait….especially of the cancer is back? Crap….I don’t know what to do.

[Jack Moon]

GM, you are only a week away from finding out what is causing the blood. Usually 1 week will not make much of a difference, even if the cancer has recurred.
Wishing all the best on the 11th,
Jack

[GM]

Thanks Jack. I’m kinda thinking the same thing. I’m pretty sure it’s back. Same as the first one. Just didn’t expect it back only 3 months later. Next Wednesday will be here soon enough.

[Ieva]

Always worth leaving a message with the Uro – keeping him in the loop.
Ieva

[marysue]

Hi GM:

Sorry to learn what is most likely a reoccurrence of BC. I remember when I first peed blood again after nearly 2 years of being cancer free. I was totally devastated. The only good thing about this is that you have a cysto coming up in a few days and your doc will get the ball rolling to get rid of it. I understand your reason for not contacting your uro. I was about 3 weeks shy of my cysto appointment in 2010 and knew that I needed to find out but didn’t call because I needed time to adjust to the fact that I would be going through the journey again. Take care and let us know how it goes. All the best on the 11th.

[GM]

Did you have any pain second go Mary Sue? I’m crampy for some reason.

[marysue]

The only pain that I had that I realized much later that was BC related was a dull ache in my lower back. The first time it had been there for several months. I thought it was related to my lower back issues and sciatic nerve pain. The pain was gone after the TURBT. When I experienced the reoccurrence I realized that I’d had the same dull ache for a few weeks before passing blood. I’ve been fortunate and been cancer free for almost 7 years and have not had that type of back pain since. The nurse told me it might have been referred pain. The pain was actually coming from my bladder but radiating through my back. If I ever get that pain again I’d know the jig was up.

I did have some continence issues as well but not actual cramping in my bladder. I’ve only experienced cramping related to having a scope or catheter in. My bladder absolutely hates intrusions and lets me know about it under no certain terms. LOL!! I hope that my response makes sense?

Just to let you know, psychologically for me the second time presented a greater challenge because I hadn’t joined Bladder Cancer Canada yet (didn’t know about the organization as it was just getting started) and didn’t realize that BC has such a high reoccurrence rate. I didn’t know anyone else with the disease and felt like I was the only person in Calgary with it. I honestly thought I had it beat. Little did I know. As some members have said the downside are the reoccurrences but the upside is the close medical scrutiny we get because of it.

Getting your head around this will be most important in the upcoming weeks. Seek psycho-social help if you feel you can’t cope. I should have but didn’t and if I had I think I would have had an easier time of it. Keep in touch with us and don’t hesitate to ask questions or whatever. We are here for you. (((((HUGS)))))

[GM]

Yes Mary Sue. I hear exactly what you’re saying. I know there was a good chance of it coming back but not so soon!! It’ hasn’t even been 4 months yet. That’s what’s got me. This one is a bit harder to take for sure. Not looking forward to cysto on Wednesday. It’s the first one for me and I have no clue on what to expect. Gah!! Day by day……

[GM]

I wonder if I should have had that BCG treatment after the first time? Maybe this wouldn’t have happened. That’s a bit frustrating….

[marysue]

Hi GM:

I had the same thoughts after my first round with BC. I was only given 6 treatments of BCG. My then uro thought that was sufficient. I didn’t know anything about “maintenance” or followup treatments at the time. Would that have made a difference? It’s possible given the reoccurrence was only one small tumour. However that being said, I’ll never know and don’t waste energy thinking on it anymore. I did what I did when I did it.

Sometimes BCG takes a while to have an effect. Several members have posted to that effect saying they had reoccurrences while doing treatments. The thing for you going forward is to get the cysto over with and then find out what is actually going on in your bladder and then your uro will tell you what will go on from there.

If there is a tumour or tumours it will most likely mean another TURBT and more BCG assuming that the news is good and the tumours are superficial.

Is this your first cysto? If it is, the best way I’ve found to prepare for it is to do a lot of relaxation stuff a day or so before and for me that includes going for an acupuncture treatment. The nurse will insert a freezing gel into the urethra before the exam. It takes a few minutes to work. I always ask the nurse to insert it very slowly because I’ve had it hit air pockets in my urethra before and it has backed out. The doc will then slowly insert the scope. Do a few deep yoga breathes before he does this and breathe slow steady breaths while the scope is in. It relaxes the sphincter muscles. I have found watching the monitor (if it is possible for you to see it) while the uro does the exam distracts me from the discomfort. It is mostly pressure from the sterile fluid that they put in your bladder that causes this. Once the scope is removed they drain the fluid out. Go pee as soon as you can afterwards to make sure that your bladder is empty and then drink a lot of water for the next couple of days. Cranberry juice, peppermint and chamomile teas are also good. All the liquid will keep your urine diluted and help prevent infection post exam. It will feel like hot razor blades the first few times you pee but ironically the more you pee the faster that feeling goes away. If your bladder is crampy afterwards a hot water bottle on the abdomen helps.
Being female I find that heat to that area afterwards helps too. I turn on my car seat heater on the drive home. The heat down below and on my back seems to relieve any post exam cramping or pain. I don’t usually need any post exam pain killers.

Some people are too squeamish to watch the exam. I do because it makes it real when you see what’s in there and I found that was important for me. Now when I see everything is clear it is just nice to see that and I will also admit I have a bit of a fascination with medical stuff. For me being able to see inside my body in full living colour is nothing short of astounding. That being said the cysto exam will never make the list of my favourite things to do. LOL!!

I hope that this helps. Take care and let us know how it goes. (((((HUGS)))))

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