Hello

[Suzanne]

Hello all,
I have been reading through the posts here for a while, and this seems to be a good group. My case is “benign” compared to others, but it was still a shock for me to learn I had a bladder tumour. It was removed last Tuesday in a day surgery unit and I was given Mitomycin-C as a treatment afterwards. The surgeon said with that it’s unlikely to come back. I am waiting for the results of the pathology report which should be in 2 weeks, but apparently it could just be a polyp, as it was a single and small tumour. The doc allowed me to rest at home on Wednesday but sent me back to work on Thursday. I am still quite sore, and bleeding a little and it’s not been my best productive 2 days, but at least I am doing nothing this weekend! I do consider myself lucky. I am due to see my doc in 1 month for the post-op visit.
Thanks for reading me.
Sue

[marysue]

Hi Chabada!

Welcome to the site that no one wishes that they belong to.

To speed the healing along, I strongly recommend that you drink lots of water, avoid caffeine and consider chamomile and peppermint teas -both are bladder friendly. Caffeine can irritate the bladder. Also make sure that you don’t lift or do too much like heavy housework for the next while. Even though it was only one tumour it is an open wound in your bladder and will take time to heal over. Too much or too heavy work will constantly reopen the wound and then you will bleed more.

The pathology report will give you the actual stage and grade of the tumour if in fact it is actual bladder cancer. Make sure that you go through that info with your doc and ask if there is any necessary follow up treatment and how often you should have cysto checkups. Most people require cysto checks every 3 months for the first two years. Bladder cancer does have a high reoccurrence rate but that being said not everyone experiences reoccurrences. I personally have had only one. I know of others that have not had a reoccurrence and others that have had several. That is why followup is so important. If it turns out that it is indeed only a polyp, cyst or something else than bladder cancer then your doc will be the best to advise you on what else if anything needs to be done but that being said make sure you ask so you know what the scoop is.

If you need any help with the pathology report you can contact Bladder Cancer Canada at the main number and someone will contact and make arrangements for a pathologist to take a look see at it.

Good luck with your continued recovery and keep in touch and let us know how it goes. (((((HUGS)))))

[KIOWA]

Hi Chabada. Good to hear from you. Glad you do not have anything more serious. If I may, I suggest you continue to have annual cystos because you never know what the crazy bladder is going to do. If it grew something once it may well grow something again. You cannot be too careful when it comes to bladder cancer. I went almost 18 years after my first round with bladder cancer. Fortunately I followed my dos advice and had a cysto every where because cancer came back and a a bit more aggressive although it produced no noticeable symptoms. Good luck to you and thanks for joining us. I hope you continue to participate. Take care,

Kiowa

[Suzanne]

Thank you marysue and Kiowa for your kind replies, very much appreciated. Still waiting for the pathology report – will let you know when I get it. I was told it would be available 2 weeks after the TURBT (i.e. now), should I call my doc or wait until my next visit, which is scheduled on March 15? I am not sure how to proceed, especially as the doc who operated me was not the one I had seen up to that (although they work together). I suppose I should contact my “appointed” uro? Thanks.

[stumblegirl14]

Hi Chabada, sorry I’m so late in seeing your post. Wishing you all the best going forward. You might want to check with your family doctor before your appointment with the urologist. My family doctor receives all copies of the pathology reports and yours might also. That way I know what’s going on and it helps relieve stress instead of waiting 6 wks after the turbt to get results. My doctor also gives me a copy of the pathology report for my own records at no charge. Good luck.

Flo

[krbeave1@gmail.com]

Hello Chabada! I find waiting for the pathology report the most stressful time but when it is in make sure that your urologist explains everything. In this case there is no such thing as a stupid question. It’s the not knowing that is so hard. Once we have accurate information you can do something about it . Uncertainty, stress, sleeplessness, anxiety.No fun. We need to know . Then educate yourself, fear is greatly lessened by comprehension. Has your Urologist talked to you about starting BCG? Immunotherapy following a TURBT is our best bet at present and there is a good supply of it available now.
Because of pressures and demands on the system quite often the urologist who does the TURBT isn’t the one who ordered the procedure but I went through the hands of several doctors until I found the best. I asked him to take over the overall management of my case as I believe that continuity of care is very important. Plus you form a personal relationship of sorts with that physician. Be aware, though, that it seems like the vast majority of GP’s are woefully under informed about BC.
So welcome to the club. Membership is for free. Sorry you have to be here.
You are not alone.
K.R.(Rick) Beaver, Calgary

[Suzanne]

Just thought I would give an update: saw my urologist earlier this week as scheduled, but after waiting for nearly 2 hours in the waiting room, I came in the doc’s office to be told the pathology report wasn’t in yet. But doc says it’s very likely to be benign, so next appointment will be over the phone in 2 weeks. He also tried to get the pyeloscan (done last week) report on his PC, but it wasn’t there either, just the files, so he looked at the scan himself on the computer screen and deemed it “fine”. I still have pain when urinating, or feel this dull pain in the bladder every time I do a slight effort (like scraping the ice on my windshield, or lifting/putting files away up shelves at the office), is that normal? Doc says it is, probably because the tumor was near the urethra, and not to worry. I know my case is mild and I have no real point of reference except the people here, but I am not sure anymore that this uro (or hospital) is right for me… Any thoughts?

krbeave1, I had one Epirubicin instillation right after the TURBT, and no other treatment is scheduled.

stumblegirl14, I don’t think my family doctor has any of these results (yet anyway), and she is 1 hour drive from home (I see her, or used to see her, only for annual check ups) but I do ask for any reports from the hospital’s archives and I could fax that to her. The reports I have got so far are not all complete, but that’s a start.

Kiowa, I am not letting anything go – cystos on regular basis from now on 🙂

thanks all.
S.

[marysue]

Hi Chabada:

If you are concerned that you are not getting the best care, you have the right as a patient to seek a second opinion. You want to make sure you understand the full diagnosis and what the follow up care is from here on. When you don’t have a proper pathology report to go on that makes the process more difficult. If your current uro can’t give you the answers you seek, nor recommend any definite follow up plan you can always contact our past president Jack Moon by private message and he can help with names of other urologists in your area so you can get said second opinion. To me, it is better to be safe than sorry. Take care and let us know how it goes. ((((((HUGS)))))))

[Suzanne]

Jack was indeed kind enough to help with names (thank you JM!) and I have made a move to change uro, but in the meantime I have asked the hospital to send me the pathology report as soon as available, and I finally received it in the mail today (2 months after the TURBT). It says, among many things relating to immunochemistry markers, (I’m translating from French) “Papillary urothelial carcinoma low grade with small high grade focus” and “absence of infiltration of subepithelial connective tissue”. I plan to send everything to my potentially new doctor, but from this report I understand that it means the tumor was cancerous, however non-invasive but could come back and has little chance to spread. Am I right? I would be interested to hear what you guys have to say…

It’s good to have something concrete to work on anyway… and my next cysto is scheduled for June (if I can’t have a new appointment before that).

thanks,

S.

[Jack Moon]

Hi Chabada

Sorry you have been diagnosed with low grade bladder cancer. The pathology report indicates “absence of infiltration of subepithelial tissue” can mean that the tumor did not invade the lining of the bladder or it could mean the biopsy sent did not include lining tissue. I am not entirely sure what the lab means “with a small high grade focus”. I believe you doing the right thing by getting a 2nd opinion at a major cancer centre in Montreal.
All the best,
Jack

[DDep]

Hello Chabada

I am sorry about your diagnosis.

Just to help you with what “Focus” or “Focal” is …. “Focal” or “Focus” means “Part of”. I know this because I had a similar Pathology report for my Tumor.

My Tumor “body” was: “Low Grade Papillary urothelial carcinoma. Focal High Grade”. It is important because the treatment for Low Grade Tumors and High Grade Tumors can be very different.

Low Grade Tumors, which are not usually invasive, tend to be overseen/treated primarily for recurrence. High Grade Tumors may Progress (or spread) and therefore are primarily treated for Progression.

Single Tumors can be multifocal – have a mix of Low Grade and High Grade – as in our cases. Some Pathologists will grade a tumor as Low Grade if the High Grade part is less than 10%. Other Pathologists, because of the new WHO standard, will grade a tumor as High Grade if there is ANY focal High Grade.

To me, it was important I knew what type of Tumor I had – Low Grade or High Grade. I asked my Urologist. He told me that the Focal high Grade was so small that the tumor was classed as Low Grade.

So, from my point of view, I would suggest to ask your Urologist for some clarification on these two points:
1) “Papillary urothelial carcinoma low grade with small high grade focus”. Because of the small focal High Grade – will it affect treatment?
2) “absence of infiltration of subepithelial connective tissue”. I see this the same as Jack Moon wrote. It is unclear to me as well. By what was stated it is not clear from Pathology whether there is no evidence that the tumor entered the lamina propria OR that the sample sent to Pathology was absent of this subepithelial tissue.

Hope this Helps

God Bless

DDep

[Suzanne]

Thanks for your help, everybody. I am happy to say that I will be seeing a new uro this week and I am confident I will get more answers… In the meantime I have developed some bad inflammation in the bladder in the last 10 days, so I’m all the more happy to see someone about that too…. I wonder if it could be interstitial cystitis, or simply that I am doing something wrong (diet, or anything else)? Has someone experienced inflammation of the bladder that started several weeks after a resection?

thank you again for your support – I hope I can help as much one day…

S.

[cheryl9]

Hello Chabada

Just read through your posts. Yours sounds very similar to mine. As my uro politely put it “mostly low grade”but there was some high grade;CIS having a party in there.

How much have you researched the information on this site? Really good info here. Don’t spend much time on other sites. They will have you without a bladder next month and dead the month after that. This is simply not true.

Things to remember: the tumor is no longer in you; you may actually be cancer free right now; recurrences are very common; you are being treated and watched thus any recurrences will be caught really fast and this puts you in the driver’s seat.

After a year of ups and downs, I had a CIS tumor recurrence. Uro said “not to worry” but, right. As if that happened! Funny thing is, after surgery to remove this tumor and a TURBT to remove another tumor the substitute uro missed and my instincts told me it was there so I went back after the uro about this, I have now had 3 “all clear” scopes.

Most important: take a deep breath or two or three or however many it takes; have a good cry; hug those you love; cry again if needed; spend time with those you are close to; and learn to laugh again. Then you will start to heal.

Swinging from the rafters is no allowed. Takes way too much time and energy to stay up there.

Take care
Cheryl

[Suzanne]

Trying not to worry…. I am scheduled for my post-TURBT cystoscopy next week, and with this pain that won’t go I wonder could it be a recurrence?? Or could it just be inflammation from one single Epirubicin instillation?? Doc was a little dismissive about it… (I think most doctors are dismissive about any pain! lol) He wanted to rule out UTI but I still don’t have the results… However, CT scan report came back with “13-14 mm thickening of posterior bladder wall – to be assessed at next cystoscopy”. Also, anyone knows what being positive for P53 and CK20 means exactly? I know they are biomarkers but other than that, I am not sure what to think…

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