Remission - how often does this occur?

I had my surgeries in 2025. I had the cycso and Tubit done in Jan and Feb. In June I had my first follow up. The doctor said he saw some signs that did not look right. He did another Tubit and cauterized the whole area. I then did the 6 BCG. In December I did 3 more BCG treatments. In January I had the next follow up. Doctor said everything looks good. We talked about remission. He would only say that I was to do 6 month exams for the next couple years. If I hit the 5 year mark than he said he would consider me in remission. As I understand that is the bench mark for bladder cancer and many other cancers. My other cancer many many years ago that was my benchmark. 5 Years and no recurance.
I hope both you and I will make it to the 5 year no more cancer period

Hi @peter51f
You must be so pleased knowing that everything looks clear at this point and may it continue as you go forward and have your six-month checkups.

I completed my 6 BCG treatments and will soon be having my cystoscopy. I am hoping I receive the same good news.

Sending my best wishes.

Remission is an interesting verbiage. I am considered to be in remission after a year of immunotherapy and chemotherapy, which was only approved by the FDA in 2023. I am considered to be in the 27% that is in remission however I do not dwell on remission, but dwell in the future. I know my friends and family ask am I cancer free? I always respond. We never know and we live from one scheduled surveillance to the next.

@sperio
I do like your response that you dwell on the future and we all must live with hope.

Perhaps I have permitted my diagnosis to overshadow my life with concern and worry and subsequently am experiencing a degree of depression.

Renewal of hope and a return to the hobbies which I had previously enjoyed is needed.

Best wishes.

@deidre77 you are not alone and a clear majority experience this. And do not allow folks with no cancer history advise you to develop a "good attitude". Allow yourself to have feelings.

My doctors at Mount Sinai use the term full response. I have had 1 occurrence after radical cystectomy in 2023. My cancer had been non detectable after 4 of 6 cycles of chemo and remained so for almost a year. I then had padcev and Keytruda and had another full response after 4 of 6 cycles. I am still receiving Keytruda. I hope for the best and try hard to do what makes me happy and not stressed everyday. I’m writing this as I’m waiting for my infusion appointment with my awesome care team😊 Scans , Signatera tests and side effects are part of my journey and either provide relief or anxiety depending on where I am on the testing schedule. Regardless, I think I finally came to terms with it all after it came back last year. It may happen again and I’m confident that my awesome team will do everything they know how to help me. It’s know it’s hard to make peace with what is happening to us and I am sending healing thoughts your way!

@141emp the combo of keytruda and padcev is a game changer in managing bladder cancer. And Signatura is now a major diagnostic for tumor DNA. You are part of a community taking each day at a time knowing that science is working for us.

For sure! It’s amazing to me that insurance companies (mine at least😡) consider Signatera ‘experimental’. My cancer never showed on scans that it had spread outside the bladder. We found out after tv surgery. Monitoring the success of chemo and then the recurrence helped identify what scans could not do early. Switching to a major teaching hospital with drs who have been conducting successful trials has made a huge difference!

Yes @sperio
I wholeheartedly agree and I feel it is important for our emotional well being and equilibrium to acknowledge our bladder cancer and be able to fully express our feelings.

While those (even in our family) who have not faced cancer tell us to keep a stiff upper lip (well... perhaps not in those words) and keep a positive outlook and remain hopeful are well meaning, it tends to discourage us from expressing our feelings which are important. In this case my fellow members, when I initially received my bc diagnosis, I was in disbelief, shocked, bewildered - and fearful. I absolutely HATE having bc, think it is a scourge and wish I was not so unlucky. In addition, I have self-reproach for having smoked excessively for so many years and been a "chimney" which I believed greatly contributed to my bc diagnosis.

Sure, I had heard of this disease and had become aware of the baseball/football great (Deon Sanders) who had been diagnosed with bladder cancer, had a radical cystectomy and chose a neobladder. I remember feeling so saddened for him. It was only a week or two later that I was given the same diagnosis.

Having had endometrial cancer twenty years ago (radical hysterectomy, oophorectomy and subsequent three radiation treatments) I was no stranger to the disease but somehow, this hit me way harder. That cancer was simpler; since I was 60 years of age then, it meant that removal of that part of my anatomy I no longer needed and having subsequent treatments meant I no longer had to think about it.

With this insidious bladder cancer, those mighty tumors refuse to cease making their presence known. They remain hidden until they wish to create havoc with both body and mind.

Actually, for months following my diagnosis (in late June 2025 when I turned 80) each morning I awoke with a horribly heavy, crushing feeling of dread. It was as though I had a nightmare each morning but was not asleep. My name was no longer Bobbie - rather it was Gloom and Doom. This feeling permeated my entire being and then colored each aspect of my life, unfortunately. How does one move on in a positive way when confronted by a disease when they are healthy for the most part and take no medication? When they are energetic, when they have lots of various hobbies, when they mistakenly think just because they already gave at the "cancer store", they are finished??

I had completed the 6-part induction series of BCG treatments and will undergo a cystoscopy soon. How does the mind accept having these treatments? How does the body accept the various after-effects of these?

It was only about a week ago when I began to psychologically recover my former self. I do not know what precipitated this but I am thankful for it. I try to be strong whereas I had felt like such a weakling in the face of bc. I now consciously limit myself to thinking about the next day and the following day and not let those intrusive thoughts into my head about what lies too far in the future for they are damaging to one's psyche.

Yes @sperio - We need to communicate our feelings, to try to make those who do not understand... understand what we are experiencing and develop empathy for us. We require not pity but merely tender understanding of the effect cancer is having upon us. No platitudes, no empty coined-phrases but rather friendship and unwavering support.

I am grateful for finding this wonderful group of caring members and both @colleenyoung and @sepdvm who give generously of their time to understand and help guide us through the difficult processes of treatment(s) and recovery.

To those who have read this, thank you for taking the time.

Wishing all members success and may each day be drizzled with joy.