Slow healing from TURBT

[darmstro]

What’s your experience with healing of bladder after TURBT (end of blood and clots in urine)?

I had one Mar 10 for bladder biopsy and a resection of prostate on May 5. Now July 7 I’m still having blood and clots which is preventing BCG treatments. My urologist keeps saying just wait till bleeding stops, but the continual delay of BCG is a concern without hope in sight after 4 months of regular bleeding … and accompanying drop in Hemaglobin/RBC.

Any suggestions to promote healing after TURBT?
Is my impatience and anxiety warranted?

Thanks
Daryl

[shelties]

Hi there Daryl, welcome to the forum, but sorry for why you’re here. I can’t relate to your problem as I’ve never experienced the same issues as you’re having. I’m also female, so don’t have a prostrate. I did want to let you know that people on here are very helpful in supporting others and hopefully one of the forum members who can relate will post a reply. The issues I had after TURBT cleared up in a timely manner, so no issues there for me. I can understand the concerns your urologist has about BCG treatments in relation to the bleeding you are experiencing. BCG treatments can be very irritating to the bladder and urinary tract and I can relate to that, even though I didn’t have bleeding otherwise. However, hopefully one of the more knowledgeable male forum members on here will respond to your post shortly.

Take care and hopefully this matter will be rectified for you soon.

Lorraine

[SJay]

Hi Daryl

In my case bleeding hadn’t stopped after several months from my last BCG. My uro took a look with the cystoscope and said it just looked like BCG irritation, but thought we should do a TURB just in case. After the TURB he said it still just looked like BCG irritation. The pathology report came back and said the cancer had dedifferentiated into a sarcomatoid carcinoma, which is somewhat rare and quite aggressive, so I went for chemo and an RC. My uro has a lot of experience in this area and was shocked at the pathology report.

Of course, your case is different from mine, but there it is. Sorry to present such a negative experience, but it might be worth finding out what’s going on rather than waiting.

[Rick B]

Hi Daryl,

Glad you reached out to BCC. The many people on this site have a lot of success stories to share along with great advice. I was diagnosed mid 2012 and have been cancer free for 3 yrs now…on regular 6 month follow-up. Mine recurred 2x over the first 9 months and was treated with BCG each time.

I agree with Sjay in that getting some answers to why the bleeding has continued. I have no medical background but from what I read a resection of the prostate may be causing the bleeding still. So many questions come to mind such as; what did the pathology report say about your bladder biopsy? was resection of the prostate cancer related? what is your Uro saying about the continued bleeding? and so on…

If it were me and the bleeding had continued for this long, I would be saying a lot of questions and would be seriously considering a second opinion. If you want a second opinion your Uro should not object and this site (BCC) has info on the top Uro’s in your area. There is a contact number for BCC at the top of this page and they will be most pleased to help you. I know because they helped me particularly during my initial diagnosis period.

Wishing you the very best outcome…please keep in touch / in the loop…

God Bless.

Rick

[marysue]

Hi Daryl:

Welcome to the group that no ones wants to belong to. I’ve had 2 TURBTs (2008, 2010) followed by BCG treatments each time. I was told to wait 4-6 weeks post TURBT before returning to normal life – normal lifting, house cleaning etc. to give the bladder time to heal. That was the wait time for BCG treatments as well to make sure that I’d healed prior to surgery. I was fortunate that I healed without issue.

Now I have to ask…have you been doing any heavy physical work or working out at the gym maybe too soon after surgery? A lot of docs forget to tell patients that and many people don’t realize that after surgery they have open wounds in the bladder that take several weeks to heal over. If you do too much too soon you will keep reopening the wounds. They take a while to heal with the environment being a wet one.

Also do you drink a lot of coffee or caffeine beverages ie coca cola? Caffeine has been know to irritate the bladder and those of us that have done BCG have found that the side effects of BCG are sometimes increased when a lot of caffeine is consumed.

Drink lots of water. Peppermint and chamomile herbal teas are bladder friendly.

I do acupuncture treatments regularly and believed that they helped me heal from the TURBTs and BCG treatments. ( However, alternative treatments should not be looked at as a way of “curing” instead of regular medicine. I use this as a way of complimenting my medical care.)

That all being said…if you know that you haven’t been doing anything too heavy physically or drinking anything that could be irritating your bladder I strongly recommend that you have another sit down with your uro and ask if you can have a cysto exam or some other kind of exam to take a look see to rule out any potential problems that may not have been discovered. If he resists, I strongly suggest that you seek a second opinion. If you need names, call the Bladder Cancer toll free number and leave a message. Jack Moon, BCC’s past president and cofounder will be able to help you with this.

Take care and let us know how it goes. ((((((HUGS)))))

[DDep]

HI Daryl,

I am sorry to hear about your diagnosis and continuing bleeding.

On the surface it sounds that things are taking far too long to heal up.

Marysue is right-on about the physical activity, lifting etc. – you should take it easy to allow things to heal.

Nevertheless I would also strongly encourage a follow-up visit with your Uro. If you do not get a good explanation for what is happening, then, a second opinion is what you also should do. As recommended earlier – call the Bladder Cancer Canada toll free number for help.

God Bless

DDep

[darmstro]

Thanks for the comments and support.
After my GP talked to my Uro last week, I have an appointment for cystoscopy tomorrow:) (he was outa town last week, which his staff never told me)
I had previously asked his staff about the cause of continual bleeding, but never got an answer and was told Urologist didn’t have appointment times available to answer question:( I’ll see what scope finds and what he has to say tomorrow.

My second surgery discharge notes said nothing about exercise nor expected recovery issues; although first surgery discharge did suggest 4/6 weeks of bleeding & no lifting. But perhaps I didn’t take the warning seriously as I should have or understand exactly what I could and shouldn’t do. I now remember getting a different story between nurse and uro resident about returning to normal activity. I mostly had no choice for exercise because of low blood iron.
Dr also sent me to ER on Friday to get cathetor put in over weekend. Didn’t stop bleeding. In hospital, uro resident suggested that trying to pass hard stools may prevent healing of the surgery wounds so I got a stool softener.

Thanks marysue, I’ll use some of the mint in my garden! and I am seeing a naturopath for complementary treatments. And trying medical Qi Gong

[marysue]

Constipation will do it too. I’m sorry that I forgot to mention that. If you get “backed up” after an abdominal surgery of any kind (this often happens after an anesthetic) it will cause issue. In this case, you are possibly accidentally reopening the wounds each time if you are straining to go because you are putting pressure on your abdomen.Using a laxative with a stool softener will help clear your colon for the short term and hopefully will right things.

If you are taking iron supplements they sometimes cause constipation. If this is the case I suggest talking to your naturopathic practitioner about a more suitable natural substitute. I had to go that route after an emergency hysterectomy in 2002. I was already anemic due to ongoing female issues and by the time I got to surgery I really bled out leaving me in very rough shape. The surgeon prescribed an iron supplement but all it did was upset my stomach and made me constipated. Not what you want when you have an 8 inch abdominal incision. LOL! So I consulted a health person at my local health food store and she recommended an alternative that was made from a plant based source. I took it for several weeks and got better and it didn’t cause constipation.

Qui Gong or meditation that you say you are doing may help as well. When we help ourselves mentally, it also works on the physical. Let us know how it goes. (((((HUGS)))))

[Marie 1]

Hi to everyone.

Just returned from my 3 month follow up cystoscopy and I am very pleased to say I received my 3rd “ALL CLEAR” !!!

I am so relieved and happy. I can once again breath and start to enjoy the summer.

Thank you all for your continued prayers and support.

God Bless
Marie

[darmstro]

Well, cystoscopy found the cause of my continual bleeding, but not good news.
A new bigger tumor has developed … just within two months. Urologist is surprised and can’t explain it. Gee thanks doc:( and you’re supposed to be the expert?!!! No compassion from him at all; he was speaking mostly to his student rather than me during cystoscopy. But I’ve given up on expecting anything else from specialists; I get compassion from others … including people HERE at BCC

Results of next biopsy (after 3rd surgery next week) may show a different type of treatment is advised which is likely to be more drastic and invasive than BCG. But won’t know for a while. So I’m taking time off work!!!! and focusing on self healing, emotionally, spiritually and energetically.
What’s your experience with compassion from urologists?

[marysue]

Hi Daryl:

Doctors of all specialities vary with their approach to patients. My first uro (now retired) was a good surgeon but didn’t have a good bedside manner. When I was having a couple of cystos he had students in to observe and didn’t bother to introduce them to me which I considered to be very unprofessional, and yes, during the exam talked to them not me. I was just there to be part of the demo and it made me feel very much like an object or specimen not a person.

He was also of the opinion that he was the doctor and the man, I was the patient and the woman so I should just sit there, shut up and follow his dictate and not ask any questions. That and him putting me through a very painful rigid cysto exam brought everything to a head and I changed doctors. All the while I was his patient, I didn’t have a feeling of trust and was never sure that he was being honest with me about how serious the BC was. That added a lot of unnecessary mental stress to my BC experience. Not something that you want to have.

My new guy whom I’ve now been seeing since 2011 is the complete opposite. He greets me upon arrival in the exam room, asks how life is going, actually reviews my records and answers any questions I have. When doing a cysto, I watch the monitor and he always gives me a running commentary of what we’re viewing and asks if I have any questions. He welcomes my input and actually puts any info I give him into my file for safe keeping and future reference. Since he is one of the major urological surgeons here it also gives me more confidence in what he would recommend should I need anything.

So my suggestion to you is, if you’re not happy with the way you are being treated, consider switching doctors. This will be especially important since your news at this last cysto wasn’t good. And I’m sorry that you’ve learned this.

Jack Moon, past president and cofounder of Bladder Cancer Canada can help with names if needed. Just call the toll free number and leave a message or private email him through this site. They will get back to you. Take care. (((((HUGS)))))

[cheryl9]

Hello Daryl

Sorry to hear the news. At least now you are on the road to getting that tumour out of you and that IS a GOOD thing!

I really lucked out and have an awesome uro. His experience really shows and he is down to earth and friendly. At my last cysto the nurse assisting him was quite stressed trying to keep up with everything. As she was wheeling me out of the room we saw the uro finishing the cleanup and putting out the new mats. She was shocked that a doctor would do that but was also really appreciative that he did.

My first TURB removed large tumour (low grade) and multiple small tumors (high grade) that had almost fully closed off the flow of urine. All non-invasive. Followed by 6 BCG treatments. Next scope the uro did an audible “oh no” then explained there were four more tumors including low and high grade. He then stated that we would have to meet in his office after surgery. Not said, but that was to discuss bladder removal and BCG failure. Then he went to his cubicle and reviewed the file and changed his mind. He decided that these tumours were probably originally there just too small to see. After 3 more BCG treatments the next scope he did an audible “yes” as there was only one tumour and it could be removed right there and then. Another 3 BCG treatments. Then the next scope showed a high grade tumour. His comment: “yes, this is a setback but not to worry.” I didn’t listen. Surgery and 6 more BCG treatments. After that, I have been cancer free now for a year. So, yes, he was right. I shouldn’t have worried.

Long winded, but basically, I am wondering if your new tumour had been there originally but too small to see. An experienced uro would know that. One with little experience may not. You need to ask some questions about your uro’s level of experience.

Now for my standard lecture: swinging from the rafters will do nothing but wear you out and leave you with bumps, bruises and slivers in our fingers and hands. Get down from there! Then do the following: take a deep breath or two or three or however many it takes; hug those you love; cry; spend time with those you are close to; cry again and as often as needed; then learn to laugh again. Then you will start to heal.

And yes, I am quite the expert at swinging from rafters. I have the scares to show for it.

Take care
Cheryl

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