Newly diagnosed and waiting for TURBT date

[Carol]

I’m happy to have found this site and group for reliable information.  My bladder tumour was found when I had  CT scan as a follow up to my Hodgkins Lymphoma surgery earlier this month June.  I had passed blood once after that surgery. So somehow I qualified for the buy one get one free deal. 😜

During my cystoscopy last week, my urologist/oncologist saw right away it was cancer.   I was watching on the screen. It looked like pink coral in the sea. (If it wasn’t cancer I would say it looked beautiful. I guess I expected that  cancer should be all brown and black and gross looking.)

The doctor  said it is blocking one  ureter so I may need a stent for a while .  I was just relieved  to know there wasn’t a long wait like my lymphoma. (Biopsy after a year for a lump on neck)

I am a 61 year old female and have never smoked. I also had breast cancer in 2012 with a mastectomy and didn’t need treatment because they got it all.

I’m feeling hopeful as the tumor is small. I’m getting top notch care at the Ottawa General Hospital Cancer Centre.

Has  anyone else had multiple cancers?  Appears none of mine are related to each other but I’m concerned about future.

[marysue]

Hi Carol:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  I haven’t experienced multiple cancers but I have read of women getting bladder cancer after breast cancer.  I don’t know if there is any connection to the two cancers or not but it is interesting nonetheless and would be useful to find out.

That being said, my body does like to grow things so I’m always watchful.  I’ve had kidney and gall stones, uterine fibroid tumours, various kinds of cysts and all kinds of skin lumps and bumps which so far to date have been non-cancerous.

It is most likely that the bladder tumour that you saw is what they call urothelial carcinoma which appears coral like on the surface of the bladder wall and yeah, it can look rather pretty if we didn’t know it was cancer.  One lady I met with this kind of cancer told me that she made the comment to the urologist about how pretty the tumour looked when viewed during the cyso exam and she said that her doctor told her “You don’t want this kind of pretty.”  This type of bladder cancer is the most common type and the majority of diagnoses are early stage so hopefully yours will be too.  The pathology post op will confirm the type, stage and grade of the cancer and I’m sure that you already know that the biopsy results will determine any next steps.

And yes, you have a right to be concerned about the future with developing more than one type of primary cancer.  For some people I wonder if it is the luck of the draw when it comes to health cards.  It doesn’t seem fair for those of us that do the best we can with making good lifestyle choices i.e. not smoking and yet we still develop cancer anyhow and then there are so many that do all kinds of things to their body and health and yet remain quite healthy. This is one fact that I will admit that I still struggle to get my head around.

I wish that I could offer more substantial advice but I don’t have anything at the moment other than to wish you the best and hang in there and take it one step at a time. Hopefully someone with multiple cancer experience will chime in soon.  ((((HUGS))))

[Carol]

Thanks for responding Mary Sue.

[marysue]

Hi Carol:

One thing that just came to mind was to suggest that you check out if there is a peer cancer support centre where you live.  I live in Calgary and we have Wellspring which offers peer support for cancer patients and their families.  I have casually spoken to people there that have experienced more than one type of primary cancer.  Even if the person doesn’t have bladder cancer as one of their primary cancers you may still be able to glean some useful info and support  from those that have walked this walk.  We would still encourage you to remain with us for the bladder cancer support of course.  ((((HUGS))))

 

[Harry Lewis]

Hello BC Canada, patients and volunteers,

what a great resource to find early in my BC experience – thanks to those whose initiative and caring has created this portal for us to share information and experiences.

Well 2021 was quite a year! Started off under the covid cloud, as did we all, but was looking forward, in good health, to my 7oth birthday in October, fit and active as  I saw myself, and with emerging grandchildren to enrich the experience.

Oops – stable angina became unstable, and I had two stents inserted in August!

Then on a November visit to eldest daughter in n BC , the red urine surprise! Cystoscopy on return to Van Is, and low grade BC diagnosis in December.

Off to local hospital on Tuesday next for TUBRT, and hoping for positive news on follow up with surgeon in early Feb.

Thanks to all those who’ve shared their journey and experience from my sampling of the website so far,

and if there are any words of advice, encouragement or wisdom about my upcoming first brush with BC surgery, I’d be only to happy to hear from you.

Best to all

[marysue]

Hi Harry:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  The TURBT surgery is generally straight forward for most of us.  The main complications can be post op infections, bladder urgency and sometimes people (often men) have difficulty urinating after the catheter is removed.

As a veteran of 2 TURBTS and several other surgeries I suggest the following:

1) Check with the hospital around any restrictions regarding the covid pandemic.

2) Keep possessions at the hospital to a bare minimum.  Bring a housecoat/sweater to wear over your gown, socks, slippers.  You may want to bring a good book to read while waiting to go for surgery and once you are awake post op. Make sure that you bring/wear adequate clothing for going home.

3) Leave valuables at home.  Only bring the minimum in terms of ID, cash etc. If at all possible leave cell phone, laptop at home or have someone with you that can keep track of those items while you are having surgery.

4) Toiletries – shampoo if staying for more than a day or two.  Toothpaste, toothbrush, lip balm, eye drops if you use them, deodorant etc.

5) Check the weather ahead of time to plan for additional travel time to the hospital if the weather is adverse.

6) Arrange to have someone drop you off and pick you up post op.  You will not be allowed to drive for several days post op.

7) You will most likely wake up with an IV and a catheter in you.  Depending on the surgeon’s protocol and how things go during the surgery they may remove the catheter after a few hours or you may go home with the catheter in and have to keep it in for a few days and go back to the hospital to have it removed.

8) You may have this done as a day surgery or stay for a few days depending on how your situation is.  I stayed overnight both times and the catheter was removed in the morning.

9) If the catheter is removed before going home, they will most likely require you to pee a few times and will measure the volume of your urine before releasing you.  They will want to make sure that you are able to empty your bladder properly before leaving. A tip about the first go – don’t strain/push hard to make yourself go.  This might trigger bladder urgency.  Drink water or herbal tea as soon as you are able to post op to get the urine flowing real good and once the catheter is out drink slowly and steadily to get your bladder to fill up.  It may take about 2 hours or more before you feel the need to pee. Once at that stage, just go naturally like you normally would.  It might sting a bit at first but as weird as this sounds, the more you go, the faster the discomfort goes away.

10) Drink lots of water post op.  Avoid caffeine as it might irritate your bladder which has open wounds in it from the tumours being removed.

11) If you are on any medications for other health conditions, make sure that you have been given instructions about whether you need to stop any ahead of time, reduce the dosage and when to resume post op.  Same goes for vitamins and any health supplements.

12) Before leaving, ask about any needed scripts for pain and/or antibiotics to prevent infection.  I was given a script for pain and an antibiotic.  I took the antibiotic but Tylenol was all I needed for pain post op.

13) Once home, be prepared to rest quite a bit at first.  Fatigue is common after surgery.  Start with short frequent walks as able and go from there.

14) Avoid any heavy lifting for 4-6 weeks to give the bladder a chance to heal.  If you do too much to soon, you may set off some bleeding.  If this does happen, rest and drink lots of water.  If the bleeding increases and gets worrisome at any time post op, check with your doctor or if needed head to the ER.

15) Check with your doctor about when it would be safe to resume driving, return to work if you are still working, and having sex if you are in a relationship.  The return to work will depend on the type of work you do and how you are feeling.  If it is a heavy physical job, it may be prudent to wait to return to work or ask to be transferred to lighter duties until you are healed up.

16) Next Steps – as you know, next steps will depend on the pathology results.  Don’t hesitate to ask questions of your doctor and of course post them here.  People on this site as you have discovered have had a wide range of experience and it will be more than likely you will find someone with a similar experience.

That’s about what I can think of at the moment.  I’m sure that you probably know at least some of this since you mentioned other health conditions and it probably isn’t your first rodeo in hospital.  The biggest take aways I can think of for the TURBT surgery is to give yourself time to recover and let the bladder heal.  As mentioned the surgery will leave open wounds on the inner surface of the bladder and that takes about 4-6 weeks to heal over.  The majority of us get over it without much issue.

Good luck with the TURBT and best wishes and positive thoughts and prayers for favourable results.  (((HUGS)))

[Author]

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