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After a 12 year hiatus my clear run is over. I went for my cystoscopy today and there is a very early stage growth in the lower right quadrant of my bladder. I will hear early next week about when my 3rd TURBT will be. My uro told me that after he removes the tumour he will do a bladder wash of epirubicin post op to help prevent it from coming back. I will also possibly have to do more BCG as well. My uro and I will discuss next steps after the pathology comes back.
Not the news I wanted to get obviously but at least it is very early. I said plenty of choice 4 letter words when I saw the tumour on the screen.
I was given the option of cutting loose in 2020 but my gut instinct said no. Now I know why. I think my doctor was pretty shocked at what we saw today since I’ve had such a good run. Now all I can do is hope for favourable pathology results.
Please send me some virtual hugs. I really need them today. ((((HUGS))))
Hi MarySue,
I was just thinking of you and thought I’d send an email to see how your scope went, when I saw your post. The little “suckers” find their way back don’t they…sorry to hear this news. Well it was caught early….it sure is a “nuisance” disease as someone stated last night.
Thinking of you and sending virtual ((((hugs)))) your way.
Keep in touch. Take care of you.
Danielle 🤗
Hi MarySue,
I am so ‘pissed off’ to hear your news! I was hoping your news was going to be ‘all clear’! I am sending you good vibes and thoughts.
Wishing you all the best in this your 2nd Rodeo. Keep well my friend!
My best,
Hi Marysue
So very sorry about the possible recurrence. I too was given the option in 2017 after 10 years clear, but I like you did not want to gamble with the unkown.
I can share some hope, I have had two scares with recurrences in 2010 and 2014, both times the growths were benign, and both times the tumors were removed during my cysto and sent to the lab for testing.
So as I say you may be down but not out yet. Keep up the hope and be your usual positive self.
Big Hug
Jack
Hi Everyone:
Thanks for your kind words of support. I really appreciate it.
It is a curious thing Jack. I’m no where near as scared as before. I had my cry at the hospital but I’m holding steady right now. I think with support from all the good people at BCC and others makes all the difference. BCC wasn’t up and running when I was first diagnosed in 2008 and I certainly didn’t know about the existence of support groups so I really was alone and honestly thought I had a rare disease.
When I saw the tumour on the screen it looked a bit different from what I remember the others looking like. The “something” looks really feathery not coral like the others. The thing that is bothering me is that it is at or near the site of my first tumours in the bottom right of my bladder. I asked my uro if it was urothelial carcinoma and he said most likely but we have to wait for pathology to know for sure. As Danielle says, it seems to have been caught really early. My doctor’s comment was that he didn’t think that it had been there very long. I have had absolutely no visible blood in my urine. The only slight inclination that something might be off was that for the last 4-6 weeks I’ve experienced some mild urgency but I wasn’t even concerned about that because I had been drinking lots of extra water because it has been so hot. As we know, what goes in must come out so to me the increase in urination was expected and I thought the extra work that my kidneys were doing was putting pressure on my bladder.
They don’t do tumour removal during cystos at our hospital. We couldn’t have on Thursday anyhow. The clinic was running 2-3 hours behind because of emergencies. Personally I prefer to be admitted for day surgery and have a proper TURBT under anesthetic. The thought that it could be benign crossed my mind. I’ve had benign stuff before. I have a benign cyst in my left kidney that is no cause for concern and requires no medical intervention. Anyhow, fingers crossed and saying lots of prayers that I won’t have to wait too long for surgery. It was a nightmare waiting for the first 2 TURBTs. I had an 8 week wait with #1 and a 9.5 week wait with #2. My uro said that his office assistant will call me next week to let me know.
Jack, thanks for sharing your story about the benign recurrences that gives me hope that maybe that will be my fate too. Here’s to hoping. ((((HUGS))) back at you.
Hi Everyone:
The 3rd rodeo is going to get underway sooner rather than later. My TURBT is scheduled for October 4th and October 19th is the backup date in case things go sideways on the 4th. My uro is squeezing me in on the 4th on top of a tight schedule so hence the backup date. Question for those out there – the plan is for my uro to instill Epirubicin after the tumour is removed. Has anyone had this drug after a TURBT before? If so, did you have any side effects? Many thanks. ((((HUGS))))
Hi Marysue,
Sheesh, I know it’s always in the back of one’s mind that this can come back, but after so long one would hope they are out of the woods. Sure hoping for the best outcome for you.
Doug
Hi Everyone:
Just an update. I had my third TURBT on October 4th as planned and want to share my adventures and misadventures in the hope that this will help someone.
The surgery itself went well. They did do the Epirubicin wash as planned. The post op recovery this time was a bit of a bumpy ride. Like my previous 2 TURBTs I was to stay in overnight and the catheter would be removed in the early AM and then after I could pee a couple of times to satisfy the nurses I would be discharged. My problems began when they removed the catheter. I was still too drugged up to realize that I was super sore down below because of the catheter. It was either not put in correctly post op or I had accidentally pulled on it in my post op drug stupor and partially dislodged it. Once removed, I couldn’t pee. We gave it several hours but no results which I now realize was caused by all the swelling down there. Anyhow, I got sick to my stomach due to being distended from retaining urine, gave the nurse a vomit bath and created enough excitement that they reached out to the uro on call since mine was not available. The nurses tried the in/out catheter to see if any urine would come but very little did. So they then called the uro on call again who ordered labs and that the foley be reinserted. Once they did that I peed like a race horse.
Two things came to mind but I’m not sure if it is true. Firstly I believe that my kidneys were very slow to restart after surgery as they have been before and I became very toxic due to the retention of urine. It resulted in me needing supplemental oxygen for a few hours, anti nausea meds and some heavier pain meds. I did have to stay a second night for observation. I do believe that the second thing that caused the chaos was that I reacted to the chemo. It possibly kicked the crap out of my kidneys and stomach. Things improved overnight once I was able to urinate. By mid morning my labs were normal, my stomach was mostly settled. The nurses managed to reach my uro who agreed that I could be discharged but with a catheter for 5 days. So I have my new friend until this coming Tuesday.
AS of this AM I’m feeling much better, can eat more, have regained some bowel function and am looking forward to getting back on my feet.
My uro told me that he will call with the pathology results in 10-14 days so hopefully they will be favourable.
I think the biggest lesson that I want to share from this experience is about the post op catheter. When in correctly at least for females it shouldn’t hurt. The one that I’m currently living with is hardly noticeable. So if it hurts post op mention it to the nurse and have him/her recheck that it is in okay. It may save you future issues with being able to pee.
The things that I’m grateful for from this surgery are:
1) I was given the chance to ask questions of all members of the surgical team pre surgery. All surgical team members introduced themselves prior to the start of my surgery. This was much better than before.
2) Even though we were facing staffing and equipment challenges in the Day Surgery unit, the nurses still did an amazing job. They are a decent and respectful bunch that really care about their patients. Nurses are truly the walking angels on earth. I thank them from the bottom of my heart.
3) The comfort of my own bed. One of the side effects of covid at the hospital was that Day Surgery patients had to be content with those small hard cots. The comfier ones were reserved for other units with patients requiring longer stays. My cot looked like it was from the 1970’s at least. It was a very uncomfortable couple of days and nights. We were told that the hospital was full to overflowing with patients due to the covid numbers creeping up again and doctors still doing catch up surgeries from the earlier lockdowns. As we all know, bladder cancer and other health problems do not take a break because of a pandemic.
4) For Bladder Cancer Canada whom I became part of in late 2010 when I had my first recurrence. I have learned so much over the years and that has made a huge difference this time around. I am an educated patient who can now use the information to ask intelligent questions and make better choices for myself. It way lessened the mental stress that I experienced in my earlier surgeries.
5) For all the support I’ve received from BCC members in addition to my family and friends. You are precious because you understand how I’m feeling because of your own experiences.
((((HUGS)))) to all.
Hi Mary Sue,
So sorry you had such trouble post op this time. You’re right about catheters, they shouldn’t hurt if in place properly. You seem to be in good hands with your surgical team and awesome nurses.
Glad you’re home and recovering. Thinking of you and sending positive vibes and 🙏 for a good path report.
Take Care.
Danielle (((HUGS))) 🤗
Wow MarySue,
That is one crazy ride you were on. I hope your results come back good to go, and you can put this behind you.That is good advise you’ve given. Keep us posted.
My Best,
Hello Mary Sue
i am so sorry about your recurrence and equally sorry for what you went through after. Clearly it was a grueling ordeal, even though you understated it! How brave you are. And it shows such a great attitude that you could share some positive things about your experience. And now you must be glad to be off that darn catheter. Sending you lots and lots of electronic hugs!!
Christine
Hi Everyone:
Thanks for all the hugs and support. The crazy ride is not over yet. I removed the foley on October 11th as planned and all seemed well. I peed 2 times okay and then by late afternoon I could only void a little bit. By dinnertime my ability to pee had stopped and I knew that my bladder was getting fairly full. I was nauseous and in a lot of pain so my hubby drove me to the ED at the Rockyview. Thankfully the triage nurses realized that I was in serious condition so I didn’t have too long to wait. Despite being overwhelming busy they got me into a room so they could reinsert a foley and the urine could drain. They wanted me to stay for observation but I had to give up my bed. I had to go back into the waiting area in a wheelchair all wrapped up in blankets. They did give me an anti nausea med which helped a lot.
We waited for over an hour and the doctor looked at me one more time and decided that I could go. The transition services nurse came to speak to us about having home care come to removed the catheter. She told me if they came to do it then (hopefully not) if I had difficulty afterwards they could come a reinsert another catheter and that would keep me in a holding pattern until I would be able to connect with my urologist. It would also save me another trip to Emergency. So I’m waiting to hear from them for a confirmed appointment for next week as the ED doc wants me to keep the foley in for another week. I’m also waiting to hear about whether I have a UTI or not. I went to see my GP this AM for a follow up and he told me that the lab results from the ED are not in yet but he will call if there is an infection. If I don’t hear in the next 24 hours, I’m good to go.
My GP doesn’t have my pathology results yet either. They might take a little longer due to the Thanksgiving weekend. My uro is out of town until Monday so I just have to be patient.
The ED doc prescribed an anti nausea med, super strong Advil to be taken for the next 3 days with Tylenol and a med for bladder spasms. The bladder spasm med he told me only to take if needed. The idea behind the Advil is to hopefully reduce the inflammation in my bladder which he suspects may be part of the problem. The inflammation was most likely caused by the Epirubicin put in my bladder post op. He also thinks I may still have a lot of debris in my bladder and that could be interfering with my bladder’s ability to act normally. My GP seconded this notion when I saw him this AM.
So the game plan right now is a lot of R&R and drink a lot of fluids to keep flushing my bladder and hopefully the inflammation will die down enough so next week I will have a better outcome. And so it goes….. Please keep the hugs coming…..
Hi Everyone:
The list of complications keeps growing. I just heard back from the ED. According to the results of the culture done from Tuesday night’s run to the hospital, I have a Group B strep infection. I’m waiting to hear back on my order for an antibiotic that my hubby can pick up.
I told my GP this AM that I thought something was going on because I just don’t feel well. I have bouts of shivering, diaherrea and stomach upset which I now know is probably related to the Strep B infection.
I sure hope once I get the antibiotic into me that things will start to turn around. More hugs please. I need this nightmare to stop.
Oh Mary Sue…you’re sure having a a most difficult time of it. God love you and bless your husband for being there for you. I’m sure the antibiotic will do the trick…give it 48 hours. Hang in there girl! Sending big hugs 🤗 your way.
Danielle
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