Just discovered BCC

[LM]

Hello from snowy Ontario.

I have been followed for “bladder polyps” for about 5 years. with regular “internal inspections” and “scrapings” (oh joy). I don’t know how I got this – – I never smoked (tho I lived with moderate daily smokers for the first 18 years of my life), and reading this site I’ve discovered that I’m one of the few women with this condition (lucky me to be sort of unique….).

Anyway, my last surgery was a month ago and last Friday I got feedback that there has been a “RECURRENCE” (which I gather is one step further along the road of “not healthy”) (YUCK).

While these growths remain on the surface (no invasion of muscle), reading the BCC site I realize that I should be getting the pathology reports so that I can understand better and track my situation. This is especially true since my doctor just suggested the option of moving to BCG if another “RECURRENCE” shows up at the next “inspection” (oh joy).

While I live in a major metropolis with a world-class medical school, I don’t know anyone else who has this condition. My doctors’ office has multiple posters of penises and prostate glands and male tubing BUT ABSOLUTELY NO visuals or printed text brochure of female urinary equipment. He (a senior member of a major teaching hospital’s Urology Dept) did acknowledge that he now has ONE female resident (we’re really breaking ground here!), and I understand that this is more prominently a male disease. But really, those of the non-male sex make up 50% of the population, folks….. We need help too (including visuals).

Anyway, I’m not a total newbie but my knowledge has been (perhaps purposefully) restricted (it’s just a minor inconvenience, right?). So, now I’m “coming out” and am looking forward to learning more and hearing from a few of you (to not feel so alone). Thanks for any encouragement and suggestions.

PS While the above may sound glib, I’m (in life) not usually this off hand about my health or concerns (tho I have in the past written some very pointed letters about women’s issues/health issues in the past to newspapers and elected officials and senior management). It just pops out of me when I sit and type…… 🙂 Is there a BCC women’s issues group?????

LM

[shelties]

Hi there LM, welcome to the forum, but sorry for why you’re here. I too have bladder cancer and I too, am a woman. I was diagnosed almost 3 years ago and have been through the mill with TURBT (many), cystoscopies, BCG treatments, etc. When first diagnosed, I was floored! I had never heard of it, and had never heard of anyone else having bladder cancer. At the time, I had already been diagnosed with colon cancer 3 years prior, and then lung cancer, (colorectal) and my first thought was the bladder cancer came from that cancer, but no, it is a totally new and different cancer with no relation whatsoever to the other. At 3 years in, I just recently, (Feb. 25th) had a cystoscopy and received an “all clear” meaning right now, my bladder has no cancer. However, that could change with my next cystoscopy as it often does, but I’ll take it for sure.

Your will soon find out that there are women on this forum, some being here for quite awhile and at varying stages of dealing with bladder cancer. I’m sure one, or some of them will respond to your post soon. The men on here are also good to respond and offer support and knowledge too. Often there will be articles passed on that educate us on bladder cancer. So, again, welcome. You will find support and information here. Take care and stay in touch to let us know how you get along.

Lorraine

[Jack Moon]

Hi LM, sorry you have been diagnosed with bladder and now have a recurrence. Sounds like you were initially diagnosed with non muscle invasive low grade bladder cancer, hence no treatments to date. Approximately 25 % of bladder cancer patients are female and we do have several females on this board.
If you would actually to speak to a female survivor that can be arranged also. Bladder cancer does have an approx 80% recurrence rate. I had 2 recurrences during BCG treatments and have been cancer free since 2007. So now I just have annual check-ups.
Any questions you may have we are here for you.
All the best,
Jack

[stumblegirl14]

Hi LM, my name is Flo and I found this wonderful site by complete accident 5 yrs. ago. I also have bladder cancer & mine is non-muscle invasive (NMIBC). In the last five years I have had 4 turbts, many many fulgurations to remove small tumors during my cystoscopy. It is the nature of the beast unfortunately. I do not look forward to any of my cystoscopies, however also know how important they are. Getting copies of your pathology reports is a must. If you have difficulty understanding the reports, Jack can help you out with that as there are pathologists on this site. Although as women we many be outnumbered the guys on here are wonderful supporters and a wealth of information. I also am one of the select number of females my urologist deals with…lucky him. You’re right that in his office also not much info about bladder cancer but the walls are covered with prostate info. Funny (and I don’t mean hah hah) how going to the bathroom is never without its anxieties ever again after this diagnosis. Lots of good humour to be found here in addition to reliable information. So welcome and stay in touch even though I’m sorry you had to seek us out. Take care.

Flo

[LM]

Thank you Shelties, Jack and Stumblegirl14. I feel welcomed already. It is good to know that there are women checking in and responding. I too am sorry that we are all here but, having been a blogger at another site (for folks with particular difficulties/frustrating issues, non-medical), it is so helpful to know that there are others who share one’s concerns and, maybe, have been along the road longer and know something that will assist in the journey.

I’m definitely going to have to learn all the medical terms and acronyms; that will help with future doctor visits. It’s all still a mystery to me. When I was diagnosed (yes, Jack, it was low-grade non-invasive), I didn’t even have any symptoms; the bladder growths were discovered during an internal ultrasound for a different (but same-body-region) medical issue. Never had any blood in my urine or frequency issues. But the doctors (and male residents) keep finding spots to either burn away (while I’m awake and spread-eagle on the raised/papered dias) or scraped off (under anesthetic surely, again, spread eagle with all my privates open to the medical crowd….. Sorry to be so blunt, but even the thought of it makes me uncomfortable. Probably males going through these exams experience similar reactions ).

While the process is unpleasant, I certainly am grateful for the monitoring care and treatment. It’s really good to know that, over time, an “all clear” report IS possible. One appointment at a time …. And good to know there are women on the board (or is that referring to / also referring to the BCC Board?) Maybe one project in the future could be working to encourage more women medical students to take their residencies in urology? One thing for sure, I’m going to mention this site to my Urologist and encourage him to tell other newly diagnosed folks; why should one have to find this site by fluke after years with this history?

Stumble girl14, many thanks for the heads up that there are pathologists on the site. I’m going to request my reports soon; fortunately, they are all at the same hospital. And another thanks for letting me know that humour can be found here; I mean, if one can’t joke a little about diagnoses involving ones privates (and the main topic of whispered jokes when one is in 3rd grade), it would be pretty depressing.

Any suggestions on how to best stroll through this site to gain information and courage will be gratefully received.
Regards,

[marysue]

Hi LM!

Welcome to the site no one wishes they belonged to. I too, am female and like you had never heard of BC until I was diagnosed in 2008. I have had this beast of a disease twice having being diagnosed as TAG3 meaning non-muscle invasive but high grade. Each TURBT was followed by BCG treatments. I have remained clear since 2010 and have my next cysto coming up in a couple of weeks.

Women are unrepresented in the world of urology, I totally agree. Our “down there” issues are usually more in the realm of gynecological stuff. I think docs actually sometimes forget that we do have plumbing as well just a different type!! LOL!!! Sorry, an attempt at a bad joke here! Myself and other women have slowly made inroads at our hospital with simple things like proper anesetic for women during cystos and BCG treatments – we had to ask to be frozen if you can believe it! At cystos we were given far less anesetic gel than the men. I had a horrible experience with a cysto a few years ago, made a big stink and lo and behold the head of urology acknowleged the issue (he’s a great guy) and things got changed. They use a longer lasting and better acting gel that makes the process easier. Like the right to vote, we women will have to push our way along to get things changed.

Women don’t get BC as often as men but there are enough of us out there and if we band together we can make a difference.

Feel free to contact me about anything especially any female issues. I’ve dealt with plenty.

As for information from us click on the links at the top of the main page. There is a wealth of information including patient booklets that can be downloaded. If you want hard copies of the booklets just call Bladder Cancer Canada on the toll free number and they will send them to you free of charge. I hope my response helps. Take care and stay in touch. (((((HUGS))))

[cheryl9]

Hello LM

Finishing year 2 on my journey. Saskatchewan looks to be a good place to have BC. I have to travel to Saskatoon for checkups and treatments but that gives me an excuse to shop! There is one urology office in Saskatoon and I believe 8 urologists. One is female and I prefer not to deal with her. She doesn’t have near the experience as the other uros (have had 4 uros so far because they book with whoever is available the quickest when it is something that needs to happen sooner rather than later), is rather crude and has a chip on her shoulder. In my opinion, this all adds up to her not being a very good uro. Know of her perforating the bladder during TURBTs. Of course, this is always a risk but when I consider what I read in my first TURBT report and what the uro had to deal with, since he didn’t puncture the bladder wall, any other uro is capable of the same!

Anyway, freezing gel is always the standard in Saskatchewan. Apologies are quick to come if the uro thinks he may have caused pain. Uros have even made a point of getting back to me after surgery even if it is in the evening. Cystos have been virtually painless. During fulgurations the uro regularly asks if I am in pain and if I am okay but the whole thing goes rather easily for me. Full respect of female patients.

As far as knowing about BC, I am the 6th person in my family to have BC. 4 females and 2 males. Family jokes about grandpa’s diagnosis because it happened after he spent considerable time ignoring his wife before giving in and moving the bed. Result: blood in urine. I still laugh about the story but it isn’t quite as funny now as it used to be. I went 2 years with blood in urine, off and on, and being misdiagnosed by female practitioners. Finally, it was a male resident that suspected there was something more going on and boy, was he right!

So, my point is: not all males disregard females and some females do disregard females. You get the whole gamut out there!

Anyway, LM, you are on a journey of a lifetime. Make sure you find a way to love every minute of your life. Regardless of what it holds.

I say this after loosing a friend to cancer on Monday. She fought gallantly. Won 14 years ago. Didn’t win this round, though.

May we all appreciate every day that God gives us.

Take care
Cheryl

[LM]

Good afternoon marysue & cheryl19, and thank you for replying. With you notes, and the others, I’m not feeling so alone. And I’m encouraged that there are WOMEN out there that are experiencing this disease.

I agree with you, Cheryl, that not all males are not great with women and that some women ARE not great with women patients. I have a male Urologist – – he certainly is not a warm fuzzy but he’s certainly straight with me, clear and respectful. If I get to see his female resident, i’ll be able to compare with his male residents (who introduce themselves and then go into “mechanic mode” not looking at or talking to me, just treating me like a piece of machinery to be explored. Guess I should speak up and suggest they tell me what they see; but then there is the video screen and I can see what they see and, basically, i drift into dissociation mode…..

The suggestions here have led me to read lots more about BC (see, I’m even beginning to get the acronyms! 🙂 ) I didn’t know what TURBTs was, but now I do and, yes, I’ve had several of those; fortunately recovered fairly easily except after the first when I was sent home with a P-bag taped to my leg attached to a stick up my you-know-what for a day (necessary but ewwwww). I don’t know if I get any anesthetic before cystos but that hasn’t been a problem. However, I’ll make sure to ask for this if I start BCG later this year – – thanks for the heads up.

Unlike you, Cheryl, I don’t know anyone in my family that has had BC; I may have mentioned this before but basically I put the blame (if there is blame) on living with my parents, grandparents, aunts and uncles (who we saw a lot) who all were moderate smokers; lived with them for the first 18 years of my life. I, on the other hand (interestingly, just like my brother and all my cousins) never smoked!!! (Guess we all were immunized against this habit and turned off by always seeing a burning white tube in our elders’ mouths…..).

Anyway, I’m going to troll through more of these discussions to add to my education. After 5 years of this disease and repeated exams/surgeries, I guess one should take it more seriously – – not JUST one more inconvenience left over from my family of origin (LOL). It’s MY disease so I should show it (and me) some respect and accept it with all it’s lumps and bumps and acronyms…..

Regards and (again) thanks for your help and encouragement.

[marysue]

Hi LM:

I found your comment about going into “disassociation mode” during a cysto very intriguing. Thanks to your terminology I have figured a little bit out about myself. I was born with uro-genital birth defects and as a very young girl had to endure all sorts of “down there” procedures, tests and finally surgeries. When I was first diagnosed with BC I struggled with cysto exams and being catheterized for BCG treatments both physically and mentally. It was a really great nurse that figured out that I was suffering from some sort of medical PTSD. I now realize that I was trying to disassociate from childhood memories of these events.

I remember actually being encouraged to watch the first cysto by the nurse as a way of distracting myself from the actual exam. I have found that it works for me and I also naturally see what the doctor sees at the time.

However that being said it is a difficult thing to do, to let a stranger mess with “our parts” without feeling violated in some strange way even though the intent is purely for our health benefit.

Yes there are those out there that would just say “get over it” but it is easier said than done. This is something that I’d like to see addressed but am not sure how to go about it. Anyone out there got ideas?

[LM]

Hi Marysue,
SIGH…..I just spent 15 minutes replying to your March 8 comments, writing more about the PTSD dissociation response. But somehow, sigh, it didn’t get posted – – and I don’t have another 15 minutes right now. Basically I wrote about how this dissociation reaction needs to be brought up in Urology residency training, that it is not as uncommon as one would think (but then most Urololgists are male and 75% of their patients are male….), reasonably normal based on childhood trauma (yours was medical, mine was years of childhood sexual abuse by a family member) but we who have had the reaction (for whatever reason) need to speak up and push to be understood & treated as a person (not as a piece of “down there” equipment to be examined). Anyone got connections to Urology Residency training?

[marysue]

Hi LM:

Sorry to learn about your difficult past but yeah that would definitely make undergoing any exams “down there” more difficult. You’re right this is an element missing from a uro’s training and needs to be addressed but I’m not sure how.

I had mentioned it to BCC Toronto but haven’t heard a response yet. This is a serious but delicate topic and we have to figure out a professional approach when dealing with doctors.

I have discovered with the Patient Engagement research that I do with the U of C in Calgary the psychological component of disease is something that is lacking overall in doctor training. It is happening with some of the younger doctors in some specialties but I don’t have any information as to the type and extent of training they receive.

I have always thought that with any serious illness particularly diseases like BC that require invasive exams of intimate regions of the body, people should have access to a psychologist to help them deal with not only the procedures but the effects the disease is having on us as a whole in coping with everyday life. We actually do have such a psychologist specializing in BC at the Tom Baker Cancer Centre here in Calgary but he is so busy, it is a long wait to see him so you usually have to see someone else that is less busy.

I have no proof but suspect that this may hold some people back from getting the treatments that they need because they can’t deal with stuff “down there”. The reasons are many, like us they could have suffered trauma in that region in some way in the past or just mentally can’t go there. I did communicate with one lady in the past who was opting for bladder removal even though it wasn’t necessary in her case just to avoid being catheterized for BCG. I haven’t heard from her so I don’t know if that surgery went through or not but it illustrates just how serious this is.

When I had my first TURBT in 2008, I was given the option of having a spinal epidural and being awake for the procedure or a general. I opted for the general and told the anesethologist a bit about my past and that I couldn’t handle being awake and being aware of someone messing with me “down there”. He totally understood and agreed that a general was in order. He must have made some notes because when I had the second surgery two years later and a different anesetic guy he just said “General right?” and got down to business no questions asked.

When I went for BCG treatments the second time at the Rockyview, to this day I’m thankful for the nurse that recognized what I was going through. She took extra time with me and coaxed me through the first BCG catheterization with deep breathing and giving me extra freezing in the urethra beforehand. Previously at the Tom Baker the nurses were rushed and didn’t take the time to freeze me and I suffered a lot of pain as a result. When I went to the Rocky I complained and said that if I was to experience that level of pain again I was forgoing the treatments. It was that nurse’s foresight that saved me from making a critical mistake with my care. As time went on with practice it got easier with the rest of BCG treatments and now with cystos as well. I still have to do a self talk for the cystos but now it is a matter of realizing that it is unfortunately a “necessary evil” that I must do in order to stay on top of things at least until they come up with something else like an accurate urine test. I’m fortunate that my current uro is a sensitive guy respecting me and gives me a moment to collect myself with a couple of deep breathes before he starts the exam. That and giving myself a small reward or treat is what gets me through…

Anyhow…just my thoughts on the day. ((((HUGS))))

[LM]

Good morning, again Rick Beaver and, now, marysue. Thanks for your comments and insights.

This discussion is making me think about so many things. Masculinity, femininity, vulnerability, the desire to take action to educate the medical plumbers, the never-fully-cured nature of this beast, the limited public awareness despite high numbers of effected (is it the shame factor or it just isn’t sexy?). Anyway, this connection has been enlightening and encouraging and supportive; I’m so glad I found this site!!!

Right now I’m in another “wait and see” period. Having had 5 years of ongoing monitoring and several TURBTs (and a cauderization while in the spread-eagle position for Cysto – – UGH), it still feels like a wait-and-watch game. And now I understand more fully that this is a long ongoing prospect, not something that gets found and fully fixed and done with. Perhaps next visit I’ll be told to join the BCG brigade but for now it’s just another wait-and-see. But I will get my back pathology reports and think about bringing up some of the PTSD issues with my uro (see, I’ve learned another abbreviation from you folks!!!) as something to include in Residency training (or should I just bring this up with every new resident I see over my spread-eagle position during Cysto? That sure would be interesting…….)

Off to a couple hours knitting with friends (a nice stress-reducer). All the best to all of you – – I’ll be checking in again soon.
Tons of cyber-hugs,
LM

[krbeave1@gmail.com]

Very seldomly do you find women and men discussing the details of BC. Anything below the belt is not normally a topic for polite conversation, but we’re all in the same boat and understanding is only brought about through communication. We have to have a voice in our own futures, and if we don’t speak up who will? Twice now I have had issues with nurses around BC. The first was in the ER after they sent me home after a difficult TURBT ( the tumours were so numerous that it didn’t go easily) and they sent me home that night. Then the catheter plugged solid. In Alberta you may not take a taxi home from the hospital if you are alone, A couple of elderly men froze to death outside their doors , taxi drivers once they drop you off couldn’t care less if you make it inside at -25. So no taxi. Too late so no buses. Couldn’t call an ambulance, they won’t bring you home afterwards and you can’t take a cab. Too late at night so nobody would drive me there and back. All screwed up on morphine and the aftereffects of general anaesthetic , not supposed to drive for 24 hours but not going wasn’t an option. Turned out somebody had hooked up the dual line catheter backwards. there is one big drainage channel and another much smaller one used to flush the bladder. The small one was connected by mistake. In agony, so much pressure in the bladder that the blood/urine/clots were squirting out from between the catheter and my urethra. OK, they took the catheter out after another couple of shots of IV morphine. That got really messy. Then the final straw. Some young male nurse was given the job of inserting another catheter. He walked up to me and with no lidocaine or anything just rammed it in It didn’t go in the first time and he just kept ramming the damned catheter in over and over. The pain increased exponentially and I just screamed at them to get the ham-fisted idiot (to his face) the hell away from me and get somebody who actually knew what they were doing. If I’d been any more functional at that point I would have punched his lights out. Finally a wonderful old nurse with about 40 years under her belt pushed him aside (literally) and just slid it in on the first try. By this point I was really screwed up, in no shape to drive and they bloody well sent me home again! Being admitted for one night would have made all the difference. But no. I had to drive myself back home way more impaired than when I left home. That was the first of four ER trips within the first 24 hours. Nightmare and as soon as I could I lit into the urological clinic and the ER staff. I can be very very assertive when I have good reason to be so. I got assertive. It turned out that Mr. Ham-fist hadn’t just torn the urethra he had perforated it! That has complicated my life and made it much more painful. The kid didn’t get fired (deserved to!) but was re-trained and transferred out of the ER.
DO NOT get bladder cancer in Edmonton!.
Then during my last set of treatments I had a nurse who just perfunctorally squirted some lidocaine somewhere in the general vicinity of my urethra, and immediately just tried to jam the catheter in. She tore my urethra again! ” Get the hell away from me, if there is nobody here who knows what they’re doing I’ll just leave” In agony (again!) I fear that I was less than polite. The supervisor came over and did the installation herself. I told her that the first nurse needed a transfer or re-training and some bloody sensitivity training. If she’s that jaded that she injures patients she has no right to be there. It’s all about US, not the hospital staff.
Unfortunately there seems to be a lot of resistance on the part of a lot of urologists to even telling people about Bladder Cancer Canada or our local support groups. There are still too many physicians out there to whom their patients are nothing more than an ambulatory disease. That is slowly changing but if we don’t demand change it won’t happen.
The overall care here in Calgary has been a whole order of magnitude better than in Edmonton. There is a much better attitude here towards BC patients and yes, the will and did admit me .

[marysue]

At least things are better from when I was in hospital as a little girl. When being catheterized or having something else done down below, I was given some kind of shot beforehand. All it did was make me very woozy and did nothing for the pain of the exam/catheterization. This distorted what happened and naturally as a little kid I was terrified because of being woozy and I was often stripped naked and held down on my back on a cold metal table, screaming at the top of my lungs and someone forcing my legs apart. I was yelled at for being a brat and “not cooperating”. Today that would be grounds for assault I would hope.

When my kids needed hospitalization here in Calgary I went through every detail of what was to happen to my child with the staff and with a fine tooth comb and made it very clear that if my kid was mistreated in any way I would sue and I meant it. One nurse realized I was dealing with something and took the time to ask why I was so het up and I related a bit of what I went through as a kid and under no circumstances would I tolerate anything like that happening to my kid. She was very kind and walked me through everything. The kids were fine and well treated. I think I garnered some measure of respect from the staff too.

But yes, I’ve had my share of misadventures here in Calgary as well but at least now, I’m an adult and can stand up for myself and I do just that. Back in 2010 I was staying at the hospital for my BCG treatment (special permission and a whole other story) but anyhow when the catheter was being removed after treatment it was a different nurse than the one that had inserted it. This gal had no idea what she was doing and just had me lay down and yelled “Breathe” and then yanked on it. I screamed and hit the roof because she hadn’t deflated the catheter balloon all the way so that caused the pain. I lay there stunned and then got angry. I phoned the clinic manager to complain and told her what happened. That nurse was sent to another clinic detail. I in no way would ever let her near me again. I to this day hope that she got the training that she needs because she had no idea of what pain she caused me. She didn’t even stay in the room to apologize or make sure that I was okay. The rest of my treatments went way better so somebody must have said something to someone. That is why I insisted on freezing prior to any further BCG treatments.

The last comment I want to make on this is that staff have to understand that our urethras are often still inflamed when we go for the next treatment and that makes the next insertion more difficult. This is one thing I don’t think that they get yet and that would help a lot of people I think if there was a way to bring this up for discussion. So any ideas??

[LM]

krbeave1 – – Thank you so much for sharing your really awful experience – sharing with me (and others). No one deserves what you described and any one of us should definitely raise holy H for such treatment, especially at a hospital in a major city and health teaching centre. I hope your complaints were heard in higher-up administration, patient advocacy and the provincial College of Nurses (or equivalent). No, BC is not for polite conversation, but gee it’s what is happening to us (and, from what i’m reading here, we are not a minority cancer group – – it the unpoliteness of our issues that leave a cloak of shame for speaking our truth.
I’ve just joined the blogging here, so I don’t want to get in too deep too quickly, but I’m going to gain strength from stories like yours and begin to speak up more. Why don’t doctors tell their patients (especially newly diagnosed) about this organization? That’s so unhslpful (keep the patient ignorant so they don’t demand much or ask too chaallenging quesions? This is not the way modern Canadian health care is going in other health specialties – – is it just the male domination, carrying with it the traditional male need for control?????)
Anyway, I am so so sorry for your pain and the rotten treatment. Hopefully your complaining has made at least some difference, and glad that you’ve been able to transfer to Calgary for better care.
HUGS

[Author]

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