Here I go again…one body part at a time :( BC newby

[Cher-L]

Hi all !

I was just diagnosed 2 days ago so in the freak mode. I am no stranger to the big C. This will be my third primary in 15 years . First off I carry Lynch Syndrome and I am going down the line in associated cancers .

Familial history – Mother ovarian , bowel x 2 , ureter. Sister Breast &uterine. Nasty little gene.

2008 Uterine full hyst early stage NFT. age 48

2009 Breast Cancer stage 3 C. Double Mx. dose dense chemo 8 rounds . 30 DAYS of rads with a bolus. Age 49

Life returned to my new normal. You have to go on and live your life after the 5 year mark no longer followed by Oncology.

How did I end up here well …I have a two week rule because of my breast cancer anything lasts longer than 2 weeks and then I call . In almost 14 years I have never had to make that call. Jump to end of Feb 2023 I had a fullnes to my bladder that did not go away past week 2 well actually let it go 3 the fullness came and went . We were about to go on Holiday March 3 I did not think much but thought get this checked no one wants to end up in hospital in a foreign country. Called Doc could not get me in . I went to an after hours clinic where the doc there gave me a very good exam . They took a urine sample it was clear but also sent it for further testing clear. They actually got me an ultrasound of my bladder the next day and results were in before we left. No abnormalities.  Shortly after getting back home new symptom burning stabbing pain in Urethra…back to doc. I made sure although its in my charts to tell him/her( I had three different docs) of my family history. They think it could be kidney stones so off for a full ultrasound of bladder urethra ureters kidneys . Results normal .Pain persisted . Doc says I have overactive bladder – although I have never had an issue with bladder control. He puts me on two different meds that had  horrible side effects. Not working !! Now I insist on a urology consult he was not really on board , but he contacted the doctor I asked for (mothers urologist) So now I am waiting a week goes by no call -big surprise. I call the urologists office and -Woah – they pick up . Yes we are looking at October November wwwhat ???Well thats not going to cut it. I call my Doc back and ask for another consult sooner rather than later. …no call.

Two weeks ago I am awakened in the night with what I can only describe as labor pains. I tried to breath them out but then I started to vomit. ER 3am. They first consider appendix but blood work rules that out. I am given morphine  which releases me from the pain. I am sent to CT they are suspecting Kidney stones . There is nothing ominous except I have a thickened ureter. I am sent home with antibiotics morphine and another pain med. We get home around 11 am. This ER doc says – I am expediting your urology appt. Thank you. One day later getting ready for bed I feel the pain coming back I take my morphine and then about a half an hour later I’m riding the big white bus…again .Off to ER a different doc there is nothing they can do because all the tests have been done just pain management . This guy- thank you Jesus- says you are not waiting for a consult you are going right to cystoscopy . I am calling the urologist and you will be in next week.

June 2- I arrive get set up the scope goes in ..I guess you know what he found in 3 seconds.I did see the polyp it had a head and was red that’s all I remember he showed it to me twice.  I have colonoscopies every two years and have had polyps removed so I just say ok go a head and take it I now know that’s not the case with bladder polyps I was prepared for something but nothing prepares you for the C word even though I have been there twice before. I think I still have PTSD from my breast cancer diagnosis. He asks if I have any questions I can’t even think and I have been here before. my brain shuts off .

So I am scheduled for June 28th – TURBT – right terminology ?

I have been reading the forum but any help would be appreciated. I am going in on Monday and his admin said I could ask questions – he won’t be there but his front desk could answer questions. So please give me your wisdom .

Thanks for reading this…short story

Cheryl

 

 

 

 

 

 

 

 

• This topic was modified 1 year, 3 months ago by Cher-L.

[marysue]

Hi Cheryl:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  You have had one crazy journey with cancer!  And I thought I had it crazy dealing with my third go round with bladder cancer last fall.

TURBT is an acronym for Transurethral Resection of Bladder Tumour.  The surgery as you may already know is a scope surgery to remove the tumours in the bladder.  The surgeon uses a scope similar to a cystoscope to cut out the tumour and cauterize the area to prevent bleeding.  I have had 3 of these surgeries – 2008, 2010 and 2022.

Most people do not have the tumours removed at the cystoscopy exam because the exam room is not set up for this procedure since it is a clinical setting not a surgical suite.  There is also the essence of time.  Most uros including mine use the cysto exam simply as a checkup procedure and book you to come back if needed to have a TURBT.  They can get more patients done this way. Having the TURBT done in an OR allows the uro to take their time to do a more complete job in a proper setting.  Since you are awake for a cysto some have found that a tumour removal hurts and it is better done in an OR.  With a colonoscopy you are already at least semi sedated and it is no trick for the anesthesiologist to deepen the sedation on the spot if required.  Knowing what I’ve experienced with a TURBT there is no way in hell that I’d let a uro remove a tumour at a cysto exam.

You may be given the choice of a general anesthetic or a spinal.  There are pros and cons to both. It would be prudent to ask your doctor about this if you have a preference for one over the other.  I do believe the majority of people have a general. I have been given a choice all 3 times but because I’m a wuss in the OR I always asked to be knocked out.  Once the surgery is complete you will be transferred to the recovery area and once stable moved into a hospital wing.  You may or may not stay overnight or for a few days depending on the situation.  My first two times I was kept in overnight, the last time I had to stay a second night due to some complications.  Most people wake up with an IV and a catheter.  The catheter will be removed after a few hours or early the next morning if you have stayed overnight.  The general rule is that you will need to be able to pee sufficiently before leaving the hospital.  In some cases the doctors prefer that you go home with a catheter and you will keep that in for a few days.  The first two times I had the catheter removed early the next morning and after a bit of coaxing and drinking a lot of water I was able to pee well enough to go home.  The third time my surgery was a little more extensive so my bladder didn’t cooperate.  I couldn’t pee after the catheter was removed so a new catheter was put in and I went home with that in.  It is not as big a deal as it sounds.  I managed just fine and it was a relief to have it in at night so I didn’t have to get up several times to pee.

The biggest thing is post op care.  You may be given scripts for a pain killer and/or antibiotic.  Doctors really vary on this so it would be a good question to ask.  While the surgery itself does not involve any abdominal incision you still need to take care for 4-6 weeks post op not to do any heavy lifting, heavy housework including vaccuming, gardening etc. otherwise you will disrupt the healing process and set off bleeding.  The wounds are not stitched only cauterized so that is why it is important not to do too much too soon.  You should also ask about when it would be safe to drive, have sex if you are in a relationship and go back to work.  The general rule of thumb seems to be – most can drive after about a week, no sex for about 4 weeks.  Going back to work will depend on how well everything goes and what type of work you do.  Expect to feel tired for a while.  The best method for recovery is to drink lots and lots of water.  Drinking water will keep your urine diluted which will help with healing.  Take short walks as able, rest as needed.  I found it took 3-4 weeks the first two times to get back to normal.  The last time took much longer due to complications.  The things to watch out for post op is infection.  If you have any fever, chills, difficulty urinating seek immediate medical attention.  If necessary go to the ER preferably at the hospital where you had the surgery.

The pathology results usually come back within a couple of weeks so it would be prudent to ask if the urologist will contact you or do you phone in?  Those results will determine any next steps of further surgery and/or treatments.  Please take heart that the majority of patients are diagnosed with non-muscle invasive bladder cancer which means it is early stage and very treatable.  The best diagnosis a bladder cancer patient can hear outside of “all clear” meaning no cancer present is “low grade non-muscle invasive”.  Low grade means that it is not aggressive and does not have a high rate of progression.  Non-muscle invasive as mentioned means that it is early stage and confined to the inner wall of the bladder.

As for freaking out despite you having gone down a cancer road twice before – that is completely normal.  Noone wants to deal with cancer whether it is the first time or the umpteenth time.  It gets old real fast and is no less scarier than the first time.  I’ve been dealing with bladder cancer for 15 years and had a 12 year cancer free period so when a tumour was discovered at my checkup last fall it was a real fright.  I didn’t have any symptoms to alert me that something was amiss.  The first two times, I had blood in my urine and back ache.  However because of regular checkups it was caught really early once again and my prognosis is really good.

The downside to bladder cancer is that it does have a high recurrence rate but some people are fortunate and only deal with it once.  I have a friend who is in that fortunate position.  Some on this site have had it more than once and then after surgeries/treatments it seems to have been cured.  Others do experience recurrences which is a royal pain in the you know where but as mentioned most cases are very treatable.

I wish you all the best with your upcoming surgery.  Please do not hestitate to post any further questions.  No question is a dumb question.  Bladder cancer has its own jargon and learning curve.  You can only learn by asking questions.  Take care.  ((((HUGS))))

[Cher-L]

Hi Marysue

Thanks for responding ! This is day three for me and my emotions are up and down. Being an almost 14 year Breast Cancer survivor I am usually the one reassuring new members. Now that the shoe is on my foot I’m in a whole new world. I  know this is the hardest part waiting, surgery then path report. After reading many survivors story here  it does seem daunting. Once I have a battle plan I can breath. I had plans of travel that date is 2 weeks after surgery. My urologists web site said you can  return to work  after 2 weeks . From reading your post that does not seem doable ? I am going in with questions tomorrow.

[marysue]

Hi Cher-L:

I would say wait and see about how you feel after the surgery before confirming any travel plans especially if you are going out of province or out of the country.   Some people bounce back really quickly but others take a little longer.

As mentioned my first two TURBTS went fairly well.  The first one required multiple tumours being removed so there was more to recover from.  I felt back on my feet after a month.  The second time there was only one small tumour on the top of my bladder.  I came out of the anesthestic much quicker so I realized that I was definitely far less drugged up that time around. I recovered in about 3 weeks.  The last TURBT was far more extensive because it was a patch of carcinoma in situ which is a flat lesion instead of the more common urothelial carcinoma (the tumours that look like pieces of coral or cauliflower) that I had the previous 2 times.  Because of the type of cancer my uro recommended that I have a chemo wash of Epirubicin put in my bladder immediately post op in order to kill off any potential cancer cells that could have been left behind.  I had a bad reaction to the chemo.  It inflamed the inside of my bladder really badly and that was followed by a group B strep infection and yeast infection.  All of this knocked me for a sizable loop.  Because I couldn’t pee post op I went home with a catheter for 5 days.  After the catheter was removed I ended up going back to the ER 6 hours later because I still couldn’t pee properly.  That resulted in me having a catheter put back in for another week.

Please keep in mind that my 3rd TURBT experience is way outside of the norm for the majority of people.  That being said, as I mentioned, I would take a wait and see approach about how you feel before attempting any travel that soon after the surgery.   (((HUGS)))

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