New here and anxious

[Tracy]

Hi Everyone,

I am a 35 year old female and in October, I was experiencing pain as my bladder contracted during urination. When the occurrence started, I had been sleeping on my hand and it was pressing into my bladder. I went to the doctor who felt that I had bruised my bladder and was advised to drink only clear liquids and return if it didn’t improve in a week. The pain subsided and I had no issues within a few days. On Christmas Eve the pain returned accompanied by back pain and I went to my doctor as soon as I could. He sent me for blood, urine and an ultrasound. The ultrasound was incredibly painful and I could only drink half the amount of water they wanted before my bladder felt like it was going to burst.

I just got the results yesterday and although my blood and urine were clear, they found a polyp in my bladder. I have to do a cytology test and they are referring me to a uriologist (the same urologist who treated my dad’s kidney cancer last year). My family doctor said they will need to determine if the polyp is beign or not but my mind is racing to the worst case scenario since I’m experiencing pain.

Since seeing the doctor for the results of the tests, the pain when urinating has gone away but I have tenderness in my lower right side (which feels like my ovary) and back pain that won’t go away. I’m not sure if it is psychosomatic and the stress of worrying or another symptom.

I am so scared it’s much worse than just a polyp and that I’ll find out it has spread into other organs.  I am really hoping to get in to see the Uriologist soon or I am going to drive myself crazy.

Thank you for reading about my situation. This forum looks like a great support network and I’m glad I found it.

[Jack Moon]

Hi Tracey
Waiting for tests and then the results are nerve racking to say the least. Hopefully you get an appointment with the Urologist in the very near future. The Urologist will take a look inside your bladder with a light, the procedure is called a cystocopy. The procedure is uncomfortable but not painful. If it is determined during this examination that their is in fact a tumor, then a surgery will be scheduled (TURBT) to remove it and have the biopsy sent to the lab for testing to determine whether it is cancerous or benign. When caught early bladder cancer can be easily treated.
Try to stay positive, I have spoken to several people who have had benign growths in their badder, in fact a female just a few months ago.
All the very best,
Jack
Forum Moderator

[Nightingale]

Hi Tracey,

Just curious if you’ve learned any more about your situation.  Jack’s advice is bang on.  Try not to worry about it.  Easier said than done, I realise, but focus on a clear outcome.  I recall when I was first diagnosed 10 years ago.  I remember my mind (and my wife’s) going numb, when my Urologist said, you have cancer, BUT you caught it very early and that is very good news.  After hearing the word cancer, it was very hard to concentrate on anything else being said.  My cancer reoccured twice after the first discovery, but I survived.  Here I am 10 years later after graduating (as my Urologist put it) and feeling 100% health wise.

Sending you good and positive thoughts,

Forum Moderator.

[Tracy]

Thank you Nightingale and Jack Moon! I appreciate the kind words.

I’m going to see the urologist tomorrow and he should have the results from my cytology results. As for that I know they’ll need to take a biopsy of the polyp and then we’ll go from there.

I am remaining hopeful that it is beign but I can’t stop thinking it will be cancer. It is frustrating because everyone tells you that it will be “fine” but no one really knows and that is just what they say to make you feel better. I’ve told only a few people because of this and I just can think about if it is malignant.

I know these things do occur in females but it is so rare at my age so I can’t help asking myself “why me?”. Totally human response to the situation but frustrating none the less.

Anyways, I’ll keep you posted after tomorrow and thank you again.

Tracey

[Mathnerd]

Hi Tracey,

I hope things went well today.

I’m a 37 year old female and discovered a small lesion in my bladder after an ultrasound at the end of September. My urologist suspected it was cancerous upon visual inspection but not aggressive. I had it removed and pathology confirmed the doctors predictions. I have had many similar thoughts about why me? I’m a non-smoking, female and quite young. Thankfully, my cancer was caught early and I have no further treatment except ongoing cystoscope.

I cant do much to ease your mind. But I just kept telling myself that all of my worrying was not going to change the results. As long as you attend appointments and follow ups, you are doing all that is in your control. Weather everything is fine or not, you are now on the path to fixing the issue.

I’ll be thinking about you,

L

 

[marysue]

Hi Tracey:

Welcome to BCC but sorry that you have need of us. I always say that this is the club that no one wants to belong to.  I too, hope that your results are favourable. As mentioned, waiting for test results is stressful – there are no two ways about it.  For me it was the worst part of the BC journey.  As you have already experienced our minds tend to focus on the dark side and the “what ifs”.  I usually suggest that it is a good time to keep busy, lose yourself in a good novel or binge watch a favourite show on Netflicks or CRAVE TV.  For me reading is the best distraction.  When I find life is getting too much, I hide away for an hour or two with a good book, a cup of hot tea and a cozy blanket.

Just prior to my diagnosis in 2008 I was experiencing back pain that went away when the tumours were removed by the TURBT surgery.  I had a single tumour recurrence in 2010 and again just before finding that out, I had the same type of back pain.  It was a deep deep ache that wasn’t relieved by pain meds or a heating pad.  I’ve been clear since 2010 and have not had that pain since.  When I asked about it, the post op nurse told me that a lot of people get what is called “referred” pain meaning the pain caused by an issue is occurring elsewhere in the body. She wasn’t certain as to the cause.

Polyps and/or tumours can interfere with bladder function.  Some people experience pain, others can’t hold as much urine or as in my case I was experiencing the odd bout of incontinence which I attributed to menopause since I was 50 when I was diagnosed.  Since I’m tumour free and have a lot lower stress level and have taken the nurse’s advice and gotten back to doing pelvic Kegels I don’t need to wear incontinence products any more.  I do still wear a small pad if I know I’m going to be sitting for a long time or for a couple of days after a cysto exam.  I rarely have an issue, it is just precautionary.

Hopefully you will soon be polyp/tumour free and the pain will disappear.  Be sure to ask about any follow up check ups or treatments.  Best of luck and keep us in the loop.  ((((HUGS))))

[Tracy]

Hello Everyone,

Thank you for your kind words and advice.

I met with the urologist last week and he scheduled a cystoscopy on this Wednesday. I was a nervous wreck going into that procedure and I was assured by everyone that it was a breeze.

The procedure was indeed easy and the doctor couldn’t find the polyp that had been showing on the ultrasound. Just when I sighed a sense of relief, he stumbled upon the small polyp. He requested if I would be okay if he removed it, so I wouldn’t have to go through this again and they could do a biopsy. It was not enjoyable and because of how small it was, it was challenging for him to get it all.

He did get most of it and has a good sample for pathology. Now I just have to wait and see whether it is beign or not.

The doctor did tell me that this will not be life altering and worst case, it’s low grade BC. I’m hopeful that it is beign, as all my other tests have not shown any trace of cancer cells.

I am going away on vacation in a week so that will keep me distracted for a bit until I get my results.

Thank you again for your support!

[Nightingale]

Hi Tracey,

Thank you for sharing your update.  I am glad that the procedure, went relatively well.  When I found out that my cancer was low grade and although I caught it very early and I had a good chance of recovery; I still worried a bit.

I have now been cancer free for 10 years after having two more procedures after the initial, and after undergoing  checkups every 3 months, then 6 months then yearly.  Again, I am sending you good positive thoughts and wishing you the best when it comes to getting your results.  The one thing you know already, because your doctor told you, is that it could be low grade BC.  As indicated, mine was low grade as well and I am feeling 100%!

My best,

Forum Moderator

 

[Tracy]

Hello,

I recently, finally got back my pathology and all signs are pointing to is being an inverted papilloma. The chances of this being cancer are very low and rare. The treatment will be removal and the doctor stated that regardless of if it is benign or not, the treatment would be the same for this.

I’m scheduled in April for my TURBT and was hoping I could get some perspectives on what I should expect.  This is relatively small and a portion of it was removed during my cystoscopy (Doc was hoping to get it all so that I wouldn’t have to have surgery but it was challenging because I was conscious). The doctor said I would only need 2-3 days off work and is that accurate? I’ve read conflicting information that people should take up to 2 weeks off. I’m not sure if because it’s so small, the recovery may be easier.

What is the pain/discomfort like afterwards? I have about 1 hour of travel home from the hospital, will that be manageable?

I really appreciate all the help and support you have provided so far.

Thank you

[Mathnerd]

Hi Tracy,

I had a small tumour (1.3 cm) so I’m hoping we have similar experiences. My surgery was only about 15 minutes. I needed a driver to get me home from the hospital, I wasn’t in pain at the time, I was on pain meds from the hospital . I was very drowsy the day of the surgery but just took Tylenol afterwards. You may want to use the bathroom somewhere on your way home. For the first 2 days I used the bathroom every 1/2 hour. I wasn’t really uncomfortable, pain wasn’t too bad. I took longer than 3 days off work because I can’t go to the bathroom often at work and I’m always on my feet. It was easier for me to plan for a longer period of time off than to call in if I still wasn’t feeling well. If your job doesn’t involve heavy lifting, lots of activity, 3 days may be ok. It’s hard to say because everyone heals differently. I took almost two weeks but felt I could have been back after one week(although I was still urinating every hour). My first day back at work was still tiring, but after that I felt much better.

Any more questions, don’t hesitate to ask.

L

 

[marysue]

Hi Tracy:

As mentioned the recovery process varies with all of us.  My first TURBT involved the removal of 6-8 small tumours and it took me about a month to get over it. My uro at the time advised no heavy lifting or heavy housework for 4-6 weeks.  I didn’t drive a for a week post op either.  My second TURBT only involved the removal of one small tumour.  I wasn’t working at the time of my first surgery but was working part time retail the second time around.  After discussion with my supervisor, based on previous experience I booked 3 weeks off work and it was also based on how I was feeling.  If I was okay, I would come back after two weeks and could also get an extension if needed.  I did take the full 3 weeks off because I felt I needed it and my job involved lifting.   I was a bit tired my first week or two back but it got easier the following weeks.  I was lucky that there was a washroom close by and I could make frequent trips as needed.

I think a lot depends on what type of job you have.  If your job involves lifting to any degree, I suggest take at least 1-2 weeks off. Even though the surgery will be relatively minor, the surgical site in your bladder is an open wound that needs time to heal over.  For most people that can take 4-6 weeks. Heavy lifting will cause post op bleeding. Docs sometimes forget to mention that.  One thing that does speed healing is to drink lots of water post op and avoid bladder irritants like caffeine. If you don’t have ready access to a washroom I would consider staying home a bit longer.  You will be going to the bathroom frequently for the first few days post op especially if you are consuming extra fluids.

As mentioned it will also depend on your working conditions as to how easy it is to get someone to come in to cover for you if you are unwell.  My supervisor wanted me well when returning to work and encouraged me to stay home and not come back too soon.  She was very supportive and my coworkers really stepped up to the plate to cover for me.  I knew that it would be very disruptive if I came back too soon and was always calling in.  I used the extra time at home as an excuse to rest and take care of myself.   I hope this helps.  (((HUGS)))

[Tracy]

Thank you so much for the advice and insight,

I work in an office environment so a large portion of my job is sitting. I think I’ll feel more comfortable taking some extra time just in case and then return earlier, if I feel better. Ill confi4m with the doctor and I’ll discuss it with my employer but I don’t see them having any concerns.

I’ve never been put under GA so my biggest concern is when I wake up, what I’ll experience and if the cathertor will cause me any pain.

I am sorry for all the questions and I appreciate all the help you all have provided.

[SJay]

Hi Tracy

I’ve had 3 TURBT’s and an RC and this is my experience. Coming out of the GA is a little disconcerting as you wake up quickly and can be a bit disoriented at first. There doesn’t seem to be any time passed since you went under. The catheter isn’t a problem and in general, catheter use is not painful. The bad news is that the first pee can be rather difficult so grin and bear it. Maybe it is different for women. They won’t let you leave peri-op until after that. Recovery for me took less than a week, but as noted above everyone is different. Your plan for returning to work sounds like a good one. There will be some blood and blood clots passed as the bladder wound heals, so don’t worry about that unless there are large amounts of blood. It is a common procedure and the staff know what they are doing so all should be well.

Stephen

[Jack Moon]

Hi Tracy

My experience with my 2nd and 3rd surgeries were similar, both times with very small tumors. The surgeries were both in the morning and I got to go home in the evening without a catheter. I experienced some discomfort for the 1st few days. The number 1 problem both times was urgency. So I stayed in my bedroom close to the washroom for 3-4 days. I did find the urgency got less and less each day.

Both times I returned to work with-in a week but only half days for the 1st week. The urgency was completely gone during the latter part of week 2.

I wish you the very best on your upcoming surgery.

Jack

[Nightingale]

Hi Tracy,

I believe everyone is different in terms of our ability to recover.  At the time I had my first major surgery to scrape my Bladder as well as check my Kidneys to ensure they were ok, I was running 5 to 6 kilometers, 4 to 5 times a week and in very good shape.  I remember after the surgery, I had a Stent in my Urethra that I had to keep-in for 10 days to prevent any possible blockage.  I took a couple of days off and because I worked from my home office, I was able to gradually return to my job.  After, 3 days I was putting in almost 5 hours a day without any discomfort.  I even went into our office to deliver a training presentation, where I was on my feet for approx 2.5 hours straight (I think it was on my 5th day after surgery).  I did bleed a little when I want to the bathroom and felt a little discomfort from the Stent.  At the 10 day mark, I removed the Stent and had no issues to speak off.  No bleeding…nothing.  I have been cancer free for 10 years.

My best to you.  I hope this is helpful.

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