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3 month check up moved forward + pain and concern
Hi there, I’m pretty new to this…..and thankfull there are good and knowledgable people out there.
I’m 36 and was diagnosed with a G1pTa TCC in May 2010 and had a TURBT with one shot of MMC. I’m due for my 3 month scope next Tuesday and am a little apprehensive as this has been brought forward because I complained on frequent need to pee and some mild pain in the pelvic area (left side only). I have some siatic pain in leg–not sure if the two pains are related though…..has anyone else experienced such pains?
For a bit of history, I’ve included my first blog entry below.
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A Short History: 1999, I passed blood in my urine, went to hosptial, and had a urogram that revealled a poorly functioning right kindey (as I recall). I was diagnosed as having a kidney stone that had broken up in/near the kidney. Despite weeing through a sieve for a week I saw no stone (fragments). Followup urogram revealled a well functioning kidney. At no point do I remember the Urologist looking at my bladder.In February 2010, following ambulatory monitoring for hypertension, I was referred by my Cardiologist for a urinary tract ultrasound, which revealed a possible transitional cell carcinoma (TCC). In April 2010 flexible cystoscopy revealledpapillary TCC of about 10mm diameter. In May 2010 I underwent a TURBT followed by one round of intravesical mitomycin. Biopsy results came earlier this week and confirmed a well differentiated G1pTa grade papillary tumour.
Mixed Emotions: I’m 36 years old, recently married and proud father of my first child. Despite the ultrasound, my GP reassured me that the growth was likely to be a bladder polyp and shouldn’t be much to worry about. So, I carried on with life as normal until flexible cystoscopy day.
During the cystoscopy I saw the seaweed-like tumour …. and felt numb, then focused on the discomfort and then, post procedure, was fed the C word. To be honest it didn’t sit well with me, the clinic was rushed and patient leaflet a scant source of information. I was told referal for TURBT would be quick. Returning home that evening was strange……I felt winded as I tried to tell my wife what was inside me–it was like the verbal equivalent of running in a bad dream–I guess you know what I mean. We went for a walk in the woods to clear our heads, I had my daughter in the sling, the rest is a bit of a blur.
In the coming weeks, we decided not to tell (worry) our parents and siblings with the news; I mean nothing would be definative until the ridge cystoscopy (TURBT) so why bother–we could cope. So, a mixture of head, sand and love and play was what we used to keep the dark thought clouds at bay. I can’t say much more than my wife has been amazing.
On TURBT day I remember being in theatre prep’ and a nurse saying you’ve had two life-changing experiences this year (daughter and this). Doesn’t sound like much out of context, but I’m there cheeks tingling about to go under and just wanting the tumour out and more than anything to live. We’re a young family, I’ve made little provision, I need them and they need me. The procedure was straight forward, the tumour and stalk removed, intravesical mitomycin and a very painful post catheterisation pee and I was discharged. I spent the next few weeks trying to distract myself.
So here we find ourselves in results week–makes all those school exam result nerves pale into insignificance, doesn’t it. My wife and I were both tense in the car on the way to clinic–sometimes it’s best not to talk under the circumstances. I had gone through weeks of hoping this was life’s kick in the butt and that I’d get a chance to redeem myself. Not that I’m a bad person, I’ve just come to learn (quickly) how often I’ve taken life for granted. Meeting with the Urologist was rather surreal, no smiles this time, just a ‘how have you been?’ After what seemed like an eternity he explained the grading of the tumour and said ‘this is likely to be more a nuisance to you than a serious threat to your future health’. The Urologist told me I would need follow-up cystoscopies for the rest of my life….that’s all I’m to expect,I’m over the moon. It’s a strange feeling to have turned to a Doctor who has just confirmed you’ve have cancer and thank him for the good news. I was expecting worse.
So, now I’ll wait until my first follow-up cystoscopy in September to see how the future looks. Right now I feel like I’m standing on the edge of a dense and dark wood and for now I’ve got my back to it. However, I know it will always be there, and I know I will never take tomorrow for granted.
That said, I’m left with just one concern (other than cancer recurrance). In the run up to my TURBT I began to feel a pain in my low back, left side (same side as my tumour). The pain radiates into my groin above my left testicle and also down the inside of my leg. I have told both my General Practitioner and Urologist about this, but they have little to say on the matter. I have to say the pain is worse when I’m sitting–yet it’s still an unresolved concern. My CT scan and biopsy show no metastises……yet the unknown cause of the pain I’m feeling–along with the fatigue I’ve felt for sometime–concern me.
Thank you for reading. I wish you well and if you’re waiting for news I do hope it’s good.
Best wishes
Vertigo99
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25 Replies
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Martin
Yeaaaaahhh! Great report and stay with it. You are now our shining example of taking charge of yourself. I have a feeling you are going to be around this old earth for a very long time indeed.
I am about to go in for my 2 year checkup. I had all my blood work done, x rays and annual physical done last week.
I am still getting anxious about Friday. It seems as though you NEVER get over it. I am very optimistic, but a little scared at the same time.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Dear All,
just an update about me:
– PET/CT came back negative (except for a sinus polyp)
– urinalysis negative
– urine culture negative
– urine citology negativeThe second URO said that the next step is to have a cystoscopy in three months. However, he will do it with a flexible cystoscope (my earlier ones were done with rigid).
So I am at this point BC free. However – as Andy Grove said – only paranoids survive, so I keep on with my diet and supplements.
Thanks for the help.
Martin
T1G2
TUR 05/10/2010
Martin, you could be our “Poster Boy” for our constant theme, GET A SECOND OPINION. So glad to hear that you are in good hands now. My impression of medicine in Hungary is that they have some pretty good people…like everywhere, you just have to find them.
Last visited Hungary six years ago. It is one of my favorite places!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Martin
You made the right decision. That was a great move. Now you are in good, caring, hands and you will be on your way to a full recovery.
This is a good time to remind all of us that WE are in charge of our OWN destiny. Martin showed the “take charge” attitude that every patient must have when face with this cancer thing. :angry:
Way to go Martin
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Martin,
Glad to hear that you are now with your country’s leading urologist. It’s always a good idea to get to the very best you can no matter what country you are in.
Hopefully, he will get to the bottom of things quickly and put your mind at ease.
Wishing you all the best!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thanks for the post. I live in Hungary. The urine culture came back negative again and my uro did not want to do anything about it and said that I worry too much.
I decided to change uro and went to another hospital where I met Hungary’s leading urologist. He ordered urine citology (has not been done yet for me) and some basic urine tests. I will also go for a PET/CT next monday.
I am sorry to say that he seems to be a much better professional and I should have started this journey with him first.
The moral is that you should look for the best care even if your tumor is only 1 cm in size. The problem is that when you are prompted with news that you have bladder cancer you can not act really rationally.
Now that my error is corrected I can only hope it will not have dear consequences.
T1G2
TUR 05/10/2010
Martin,
What country are you in? What protocol do they follow?
It very well could be a UTI but your uro should have tested you for it and seen something in the urine sample. Then you need to take the antibiotics.
Recurrent UTIs should be evaluated though and with T1 a reTURBT is highly recommended in other countries so it might be a good idea to try to find a way to get another done just to be safe. Bladder cancer is often understaged.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thanks. I did not have a TURBT as in my country this is not the protocol. Yes, he sent the urine to culture again this time. My fear is that some tumor was left that causes this symptoms. I am thinking of getting a second opinion.
T1G2
TUR 05/10/2010
Martin,
You should certainly talk to your urologist about your concern.
Bladder cancer can have similar symptoms to a UTI and be intermittent. So, it could have been what you thought were UTIs were really symptoms being caused by the bladder cancer tumor.
Just because there was no bacteria 6 weeks ago, doesn’t mean there isn’t bacteria now. Did your uro do a urine culture? Just because you have symptoms of UTI, it still doesn’t necessarily mean you have a UTI.
When was your TURBT? Did you have a follow up TURBT yet or is it scheduled? Any diagnosis of T1 should have a follow-up TURBT around 6 weeks after the first TURBT.
Untreated UTIs can be dangerous. The infection can move to the kidneys and beyond and then they are much harder to treat. The point being that you should consult your urologist whenever you think you have a UTI and he/she can explain the importance of treatment and the potential dangers of not treating them.
If they did not do a culture, then it may or may not be a UTI. It could be another symptom from the bladder cancer so it is certainly not something to be ignored. You should certainly see your urologist and get a culture if you haven’t already.
I know I had cases prior to being diagnosed with bladder cancer that I thought I had a UTI and went to urgent care and was put on antibiotics but they came back a couple of days later and said there was no infection. That went on for a year and half or so until I finally went to a urologist as was diagnosed with bladder cancer.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hi,
I was diagnosed with BC in May 2010 (unfortunately worse type – T1G2) and I have similar symptoms, only adding that I also have pyuria and my pee is darker than usual. My first cysto checkup was this Tuesday and also was negative. Uro says he hardly sees the incision from TUR.
My Uro says that this is a simple UTI but 6 weeks ago they did not find any bacteria in the pee. Also, before the TUR UTI-s cleared up for me without taking antibiotics in a matter of days and did not last this long.
Has anybody had similar experiences?
T1G2
TUR 05/10/2010
Glad to hear it! Enjoy your baby girl!!
Anita
Forum Moderator
Caregiver
Always great to hear about someone having an all clear.
High fives and many wishes for fun times ahead.
Vi
Dx 10/5 Non Invasive Papillary
Great news!!!!!
Happy to hear it!
:laugh:Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Great News……….now go celebrate :laugh:
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
Great news!!! Lots of us here to celebrate with you!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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