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Good morning.
I have recently had my second clear cystoscopy and am good till my next one in July. The thing is I am having trouble explaining my situation to friends and family. They ask me do you still have bladder cancer and I say yes, they say, “I thought you got the Tumor removed” I say, yes I did.
So I try to explain that tumor free is not necessarily cancer free when I comes to bladder cancer. This is something that people have a hard time understanding. They think “you do or you don’t”, once the Tumor is removed and you have your BCG treatment you are done. I try to explain that Bladder Cancer has a high probability of coming back and I need to be checked every 3 or 4 months. So the answer is yes and no.
I guess my question is what do you say when you are all clear but still being checked. Do you say, yes or no to the question, do you still have bladder cancer.
Thanks. Stay safe Ted.
Wow, I am grappling right now with precisely the same question as you are. When ex-colleagues (I am now retired) email me to ask about my condition, I just say “It is still indeterminate. We shall see. Thank you so much for your thoughtfulness in asking after my health.” But that doesn’t seem quite right somehow. And as you say, people don’t understand NED as opposed to cured, or they don’t understand that a recurrence of a tumour doesn’t necessarily mean I haven’t long to live. I hope some folks here will have thoughts to share on this topic. Thanks for raising it.
Hi Ted:
I guess that I have a different perspective. After my first surgery in 2008 to remove 6-7 tumours which was followed up by 6 BCG treatments, I considered myself cancer free and that is what I said to people once I got a clear cysto after the 6 treatments. I was good until the summer of 2010 when a single tumour was discovered at my cysto check. When asked then, I said I have a recurrence. Once that tumour was removed, I again said I was cancer free. I’m 10+ years out with no recurrence and since my uro said I can cut loose if I choose I consider myself cured even though he won’t use that word. He too, uses the phrase “no evidence of disease”. At my last cysto September 2020 we agreed that I could move up to cysto checks every 2 years which I will do for a few more years. I may consider cutting loose once I hit the 15 year clear mark. I wanted to continue having checkups for a bit longer not so much because I’m worried about a recurrence but because it is difficult to get in to see a specialist in Calgary and I like the guy that I have. If I cut loose, I may not be able to get back to see him should I need to see a uro and that would mean starting all over again with someone new.
So, my thoughts are and they are thoughts only, not proof:
1) If you say “no evidence of disease” that gives the perception that there could still be some cancer present but it has not been detected.
2) To my thinking if the cancer has been removed, it is gone and that is why I always thought of myself as cancer free and still do. So, I guess that is why I prefer that term because for me it creates a more positive mindset. And I believe that it does for your family and friends too.
I have had to explain to people that a recurrence does not mean a death sentence if it is early stage because that stage is very treatable. Although I will admit I was scared s******* when the recurrence happened because I did not have the understanding and knowledge of bladder cancer that I have today. Many thanks to BCC for that. I had to get into explaining how BCG treatments work with my sister-in-law who thought I should have had systemic chemo right from the get go and was on the band wagon about it when I had the recurrence. It took some doing to get it through her head that that type of chemo is for treating later stage bladder cancer and for other types of cancers. It won’t work to treat the inside of the bladder wall.
I avoided further explanations with people by saying that I had immunotherapy which for some reason people still equate with chemo and I have discovered that the majority of people think like my sister-in-law that systemic chemo is the way to go to treat cancer. I didn’t get into the graphic details with people and correct their perception because I found it too distressing mentally.
When people asked me about checkups I gave a brief explanation about the scheduling of checkups and the reason that you have checks every 3-4 months for the first two years is because of the high recurrence rate but that doesn’t necessarily mean that you will have a recurrence. It is just the protocol that the uros use because after years of research they have found that this is the best way to catch it early if it does recur and if they do catch it early, it is treated quicker and that increases the chance of a cure. I also told them about the excitement of “graduating” to the next level of checkups at 6, 12, 18 months etc.
Now because as mentioned I’m 10+ years out with no recurrence I tell people that the cancer experience is my rear view mirror and I ain’t looking back.
Hopefully, you both will get to where I am and you will be comfortable telling folks the same. I hope that my thoughts help. All the best to you both. (((HUGS)))
Thank you marysue for your your thoughts.
I hope that some day I will be to get to the point were I think like you. Myself being only 18 months out from my original diagnosis I am still afraid of a reoccurrence.
Like you I had to explain to what the follow up treatment, BCG was all about. Most thought that I would get Chemo. and loose my hair and get real sick.
I do find it interesting that I already think of the Cysto. as just another appointment, like going to the Dentist or getting a hair cut.
I am aware that even if I get a reoccurrence it will be caught early and treated right away, so as time goes by and I graduate to 6,12, 18 month Cystos. I can see myself saying I had bladder cancer and the Dr. is just checking.
Thank again for giving me a look into my future. Stay safe. Ted.
Hi Ted:
You’re welcome and you will get there. I too, for the longest time worried about recurrence but after the second TURBT and 15 more BCGs that were for one tiny tumour it gave me hope, especially after I connected with others on BCC. More than one person helped me get things into better perspective. At the time of my recurrence in the summer of 2010 I had no where near the amount of knowledge of bladder cancer that I have now. I was terrified thinking I would die.
When I had the recurrence I was starting to wonder if I should go the RC route to get rid of it once and for all but my uro hadn’t even raised that topic. It was only after reading stuff about others journeys with an RC surgery that I got the understanding of just how big the surgery was and what the post op issues could be and that I’d really be asking for something that was not necessary for me. I had to trust my uro that if he thought it was necessary then he would bring it up at that time otherwise it was best not to go there. Once I got that thought into my brain I started focusing on getting my head and body into a better place. That was what I could control and give myself a better chance.
Another thing that helped me was that my first uro told me that if you can get to the 2 year all clear mark then the chances of recurrence start to drop. I didn’t quite make it the first time but when I finally reached that “graduation” from 3 month checks to 6 months my mindset really improved. After a couple more years I graduated to annual checks. In Alberta the protocol is to follow a patient for 10 years and if there is no recurrence they can be cut loose. I was offered that option last year but my uro understands that some of us are being really cautious and want to continue with check ups. We agreed on every two years for me. Next check is the fall of 2022 unless I think something is happening. I will probably cut loose when I’m at the 15 year clear mark. For the time being I want to stay connected to my uro a bit longer because I really like the guy and how he works and don’t want to start over with someone else if I cut loose and then have a problem. The thing that I’ve garnered from all of this is that the farther apart the recurrences are the better chance of success but that being said some people have recurrences in the beginning even with BCG treatments and then as they progress through treatment they too, experience success.
I will admit that my fear of recurrence lessened as I “graduated” to each level of checks. So now, I don’t really think of my cysto appointment other than a routine check like going to the dentist or eye doctor. I do still get the heebies a couple of days before but it is more from the type of exam it is versus fearing a recurrence.
All the best going forward. If you are at 18 months clear from your original diagnosis you are doing really well. (((HUGS)))
Hi Edwin;
I am like MarySue to have a positive mindset ; to feel I am all well after getting a clear cysto.
For those who I choose to tell ( I have been very selective from day one as I am extremely sensitive to people’s vibes and I want only positive around me to not get depressed). My immediate family of three sons and their wives knows this about me so only they know plus my banker, my lawyer ; my dentist and a couple of my sons friends as they just lost their mothers to cancer and my sons needed their own support.
So I say: I’m one and a half years in – so far so good – I’m all clear and am on a three year treatment plan as long as I stay all clear every checkup. Done. I mean really who knows the bigger plan of things and outcomes….. I take it a day at a time in a hope and faith that’s very big along with my daily affirmations that I’m healthy , strong and able. Fudge the cancer diagnosis. Sorry. The old saying : Could die being hit by a bus. As Kris Carr (Sexy Crazy Cancer) says- let’s thrive with Our lives irregardless what we have. I’m not in denial- I just don’t want to tell friends as I want our conversations to be of our good. I hope to be like the others on this forum with their years of cancer free!
For instance before I was diagnosed a girlfriend had said cancer is a death sentence and so she does not know about me.
I know; I know; is there a chance of being in denial? Sometimes the “right” denial serves.
Do I get scared? Of course- I’m freaked before every cystoscopy. My urologist said he’ll continue the checkups for 10 years. I’ll just have to do what I need to do to go the next step- towards healing. As we all are doing in this situation.
Sorry – I went off on a rant- sure it’s good to reveal things but it’s nice I get to choose what makes me feel good. I could even say in comparison to the cancer that my sister had that mine’s a good one . My daughter-n-love had it all googled the day I was diagnosed- she said- it’s treatable so that’s good!
Staying positive is my gig; yes can be annoying to some friends sometimes. I had one co- worker who disliked me but she got canned for her negativity. I’m not saying being positive always wins ( trust me I know this as a pro kickboxer).
Anyway : I hope the best for everyone going through their stuff. Yes it’s alot to deal with especially when in pain and going through treatments and for those who are having a worse time with it. I pray for you all. I dearly hope we all get through this as best as we do.
Lotsa Love 💞🍀- Tana
Good morning Tina.
I understand keeping your bladder cancer private, as it can cause people to look at you and treat you differently.
I took a different approach and told all my family and friends what was going on with me. I did get some awkward moments but most everyone was supportive and interested in what was going on. It is interesting how most people know almost nothing about bladder cancer and its treatment. So I educate them.
Interestingly as time went by, and the treatments became routine everyone would just ask, how are you doing, when is your next checkup. I would say last check up is all clear, next one in 4 months, bringing an end to that topic.
I do have an active life style, ” as much as covid will allow”. My first operation had to be delayed as I was in Cuba when the Covid shutdown happened and my operation date was within my 2 week Quarantine time upon arriving back to Canada. We were supposed to spend this past winter in the Caribbean but we were stopped by Covid not Cancer. I live by a lake and spend as much time outdoors as possible.
This helps me maintain a positives outlook and most days I don’t even think about my Cancer. ( See I just did the, I have Cancer thing without even thinking.) I’m working on it. Educating yourself about the good, bad and ugly of Bladder cancer keeps everything in perspective for me.
Thanks for the comments. Stay safe Ted.
Thanks Ted for your reply as that is what I didn’t want ( for people to treat me different). I had hoped I wasn’t coming on too strong of my take. I totally get the educate people thing and that’s a good point. If someone mentioned they were seeing blood in their urine or other symptoms I’d definitely help them.
My three sons fuss over me enough which I’m truly grateful for the caring.
And on we go hey- sounds lovely to live by a lake! I was all set to book for Cuba myself when Covid struck.
Blessings – you stay safe; too!
Tana
I have told my family and close friends about my bladder cancer and BCG treatments. Explaining the timing of the treatments and the cystoscopies. Everyone seems to understand the process. I check-in via text afterwards with a “still cancer free!” Though this February it was “F$@k cancer! Recurrence”. TURBT again tomorrow. I hope to be cancer free again.
Xandra
Hi Mary Sue,
I’m wondering myself what to say as I haven’t received the true pathology report yet from my TURBT last Thursday. I tell friends and family that the Urologist said it was low grade and noninvasive….but get the question, “Was/is it Cancer” and “Will you need treatment”? I tell them pathology will tell the tale in a few weeks, but if it is, it has been removed, so it’s not anymore. I see the Urologist July 27th to discuss.
It’s worrisome, but keeping positive.
Danielle
Hi Danielle:
There is not much else to say until you do get the results of the pathology report. What you have right now is a tentative diagnosis. If your doctor has used the words “Low grade, non-muscle invasive” he is talking about it potentially being cancer and that he thinks it is early stage and non-aggressive. And as you already know, the pathology report will confirm if he is correct. As to whether you will need any type of follow up treatment, he will let you know at your next appointment. Even if he does recommend something like BCG treatment, you still have to wait until your bladder heals from the TURBT which takes 4-6 weeks in most cases. You shouldn’t have treatment if your bladder isn’t healed because a drug agent like BCG could really inflame an unhealed bladder and also you run the risk of systemic infection from the drug entering your body through the surgical wounds. Low grade bladder cancers can have a variety of follow up treatment protocols. Some uros will adopt a watch and wait and just have you come in for regular cysto checks, other will recommend treatment like BCG. Again, some of those decisions maybe based on the pathology report and the doctor’s own treatment protocol preferences. That is what is up for discussion at your appointment. If you do have more than one option he will lay it out at the time and I always suggest asking questions around the pros and cons of any treatment options.
As for me, my first urologist wouldn’t confirm that the tumours were cancer until the pathology results were in. Looking back, as annoying as the wait was, I think he didn’t want to say anything ahead of time in case he was in error and then I would be more upset at a second diagnosis and be really peed off at him.
One thing I do suggest going forward is keeping the explanations very simple and basic. I made the mistake of going into detail one time with my sister-in-law and I had a hard time getting her to understand how BCG works when instilled in the bladder. She kept insisting that I should have systemic chemo because just doing a drug in the bladder wouldn’t “get it all.” She didn’t understand that the cancer that I had was very superficial and in my case the systemic chemo wasn’t the right choice because it wasn’t necessary nor was it the correct agent to do what was needed. I also had to tell her that my doctor was the expert in this situation not us and I had to trust that what he prescribed was the best course of action for me. Best of luck on the 27th. (((HUGS))))
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