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When is the Right Time to Change Your Treatment?

When is the Right Time to Change Your Treatment?

After being diagnosed with high-grade T1 bladder cancer in 2017, I was launched into a conversation with my doctor after my TURBTs that at the time I was ill-equipped to deal with. There didn’t seem to be many options for treatment on the table and to be honest, I wasn’t prepared to make such big decisions that early in my diagnosis. So, rightly or wrongly with my minimal research and still coming to terms with having cancer, I opted for what I felt at the time was the least invasive.

Why I chose BCG

I was choosing between the options to remove the bladder, chemotherapy or BCG. I didn’t know much on any of these options and didn’t want to even consider the removal of my bladder, and I was fearful of words such as chemotherapy. I opted for the BCG because it seemed the impact on my daily life would be minimal. Whether or not this drug was going to be effective on killing off the cancerous cells was low on my list of priorities at the time.

Fears of the cancer becoming more serious

So, fast forward 18 months, and I’m thinking I need to consider changing my treatment. I say this because over the 18 months that I have been treated with BCG, I’ve had two recurrences, followed by procedures under general anesthesia to remove the tumors. Both biopsies have come back classifying the tumors as low-grade superficial, and as a result of this, my medical team has decided to continue to treat me with the BCG. My reservations with the BCG is that if I continue to have recurrences, the next tumor that returns could be more serious, leaving me with restricted options, such as the removal of my bladder, which I fear more than the cancer itself!

Listening to my doctor’s advice

I’ve discussed this with my doctor, and he is under the impression that although I have had two recurrences, my treatment is going well and to continue with BCG. So as always, I’ve taken on their advice and stayed with the current treatment plan, which is to receive weekly doses of the drug, followed by another cystoscopy after 3 months to see if any tumors have returned.

My doctor’s reaction to seeing me outside the treatment room

Around the time of my third weekly visit to the urology department, which is based in a major general hospital, I decided to pick up a coffee from the cafeteria. While leaving with my purchase, I could see my doctor entering the same cafeteria. Happy to see him outside of the treatment room or the surgical theater, I made a point while passing him to say hello. He literally looked at me with a complete blank and with absolutely no recognition of who I was and only politely offered a very weak response back me. I was slightly taken aback by this, because for some reason I expected him to fully recognize me, mainly because he and his team were playing such a huge role in my life, literally!

Am I just another tick in his box?

While traveling home, I started to reflect on what had occurred within the cafeteria. I was listening to and basing my entire treatment plan on the judgment of a doctor that didn’t even know me. So how deeply is he really looking into my treatment options for the best possible outcome? Am I just, as I imagine, another tick in his box? The truth of the matter is that although he is a very important person to me, I am one of many hundreds of patients that he deals with, which means my patient number and treatment plan is all he will possibly recognize and be familiar with. Knowing this has left me feeling even more unsure with my current treatment plan. The realization that I am truly just another statistic within a very large bladder cancer system is annoying. It may be naïve of me, but I would like to think that the one person making some very big decisions on my life knows me a bit more on a personal level and a lot more about how I’m feeling, or at the very least recognize me in passing, considering I’ve been under their care for 18 months now.

Taking control of my care

What’s become very evident with all of this is that I must at all cost take control of my treatment, my care, and my future. Unfortunately, we can become just a statistic to the professional bodies, and if I were to perish from this disease, my loss to the medical fraternity is not going to be any big deal. So, I’ve shifted my views on loyalties to any one cancer care provider. I intend to go where it’s best suited for me and have just recently told my current primary care provider that I intend to seek a second opinion on my treatment plan from another cancer institute.

Determined not to be complacent in my treatment

It may well be that the second opinion concludes that my current treatment is the best at this stage of my journey, but at least I would have heard it from a second party, which will hopefully make me feel a whole lot better. The fact that there are many more treatments available now in the bladder cancer world dictates that I must consider all options, even if my current provider does not. I’m determined not to be complacent in my treatment, and I’m armed with a lot more information and knowledge today than I was 18 months ago. So, I’m taking back a little bit of control for my treatment, my care, and my journey.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • larryk
    11 months ago

    Not only does it make sense for a second opinion, but sometimes a third or fourth. My original urological oncologist at Rutgers Cancer Institute, who removed my kidney due to cancer, and was treating me for bladder cancer which developed following the nephrectomy, referred me to a well known Memorial Sloan Kettering doctor for a second opinion after 2 rounds of BCG both failed (second round included interferon). At 56 years old, MSK doc wanted to perform a Radical Cystectomy including prostate and urethra removal in August 2018. With such a radical recommendation, I asked my Rutgers doc for additional recommendations. One was from Penn Medicine, the other was from Columbia/NY Presbyterian. Both had options for me but I chose Columbia. I underwent a new treatment that resulted in my December 19, 2018 biopsy pathology coming back negative for the first time in over a year. If it were not for my digging to find a different doctor/recommendation, I would be without my bladder right now. There will be maintenance treatments and regular cystoscopies for the next year, but it is well worth the effort! I may not always have such good news, but for now I still have my bladder and currently have negative pathology!

  • Alina Ahsan moderator
    11 months ago

    Hi @larryk thank you for sharing! I totally agree that it can be so helpful to seek even a third or fourth opinion, especially when the recommendation is so radical. I really commend your diligence and dedication to finding a treatment that worked for you!
    -Alina, BladderCancer.net Team Member

  • RunnerPDX
    11 months ago

    Noel –
    Nice article and personal timeline. Thank you for sharing, this sounds scary, depressing and frustrating.

    It’s surprising that you have had two recurrences in 18 months time. That sounds awful, painful and traumatic. Not to mention what it’s doing to your family.

    I am sorry that your doc didn’t recognize you when he saw you outside the treatment room, but I can only offer that he probably has more on his mind than we might realize. There are times when I mix up my kids names, and when I have forgotten names of folks I see frequently, and plenty of “memory lapses.”

    However, I would be equally as troubled by your recurrences as you are, and do wonder how they determine if the immunotherapy is indeed working, what is the time frame, or the short term and long term outcomes that are statistically relevant.

    I just completed my first 6 BCG treatments. I found that the side effects became successively worse, but since I ignored them it was my wife who pointed out this out beginning with treatment number 3. This was also my third go-round with early stage bladder cancer, though it’s been over ten years since the first diagnosis, and four TURBT’s.

    I had always felt truly fortunate, but at the time of this latest diagnosis, I was truly depressed. More so than I could ever recall being. I knew exactly what was coming, how it would feel, how I would feel, how my family would react. I just did not want to go through that. Not again.

    But, you know what? I did. (yes. it sucked, just like i thought it would.) But, now that is past, the BCG is done (for now). I feel a bit better every day, and while I am surprised that I was so depressed, I am also glad my state of mind has changed.

    But, when I read your story, I thought I saw a strong positive attitude. It is inspirational, and I wish you the best, and look forward to hearing about which alternative treatment you move forward with.

  • Noel Forrest moderator author
    11 months ago

    RunnerPDX! thank you for your great response to my article. Its amazing how you’ve summed up my thought process in your first paragraph…scary, depressing and frustrating.

    I’ve always been a very positive person and remain so on my cancer journey. Its never an easy road, even when you think things are going well because you always fear that things can quite easily start to go bad. My BCG experience has been frustrating and very challenging, but I have in no way given up hope that it will come good for me.

    I do agree with you totally on the doctor situation with him not recognising me. They are under a lot of pressure and who knows what was on his mind at that precise moment. It did however get me thinking about taking more control of my treatment, which is never a bad thing! My medical team have never put a limit on how long BCG will be given to me. The recurrences have always shown the tumours to be non-invasive-superficial, which the medical team view has a positive step forward. I didn’t feel as optimistic, which was a first for me and like you felt pretty depressed with the latest recurrences, but things have changed since and I’m back to my positive self and await my next scope scheduled for early March.

    It is very difficult on the family and my life is in limbo, with the stop, start process of living with cancer! I’m happy to read that you have got through your latest round of BCG and your thought process is changing. We are only human and allowed are moments as its very difficult to consistently see the positives to difficult diagnoses, particularly in your case having been on this journey for 10 years!! I applaud you for your obvious insight and strength, which is an inspiration to me and something I hope to replicate on my own journey.

    I will definitely keep you updated with my outcomes and please can you do the same. I have also started on a low key course of alternative treatment and will assess its success after my scope. I have attached link if you wish to read. Again, thank you so much for engaging with me, its always a pleasure to know there are others out there with similarities – Noel, (BladderCancer.net Team Member)

    https://bladdercancer.net/?p=3499

  • RunnerPDX
    11 months ago

    Thank you. Keep your outlook bright, and know that we have you in our thoughts, and will follow your success!

  • Alan
    11 months ago

    Thanks Noel – I agree with you, I just got a second opinion also.

  • Noel Forrest moderator author
    11 months ago

    Hi Alan, thank you for the feedback. its important that we have ownership of our treatment so if it gets to the time to make changes, we feel confident to do so. How did it go for you with the second opinion? Noel, (BladderCancer.net Team Member)

  • Alan
    10 months ago

    Hi Noel, sorry for the delay in responding.

    Thank you for sharing your journey with us, I feel the same as you do as I do not know if I’m going in the right direction or not. I can’t tell you how many sleepless nights I have had since be diagnosed last November and I’m sure your experiencing the same thing.

    I also have had many up and down times and trying to be strong and positive is difficult some times but my faith in Jesus Christ has helped me to be positive.

    I went to the University of Minnesota Urology department for a second opinio and they confirmed that I had HGT1 non muscle invasive bladder cancer and that I should continue and have my first series of BCG treatments which I will start March 13.

    I have had two TURBTs and still very sore down there a month after so I hope and pray I can make it through 6 weeks of BCG treatments.

    So based on my consult with the U of M I am continuing to be treated at the Mayo Clinic in Rochester MN and have bugged my doctors weekly and they have always responded to me for which I am very grateful.

    Noel thanks for being a good friend and sharing your treatment and experiences with me. I am going through the same frustration as you are and I do not want to be a statistic.

    We both have families and need to fight this with all the power we have no matter how painful it is. Our problem does not go away with surgery we need constant surveillance to keep this in check.

    I have been to two ostomy group meetings and have met many people who have had their bladders removed and they are doing very well and this will be my last option to live or having the cancer spread.

    Thank you my friend and reach out to me any time.

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