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Dealing With Surveillance Check-ups After Receiving the All Clear

Dealing With Surveillance Check-ups After Receiving the All Clear

I’ve had some difficult moments on my cancer journey. Dealing with cystoscopies, TURBT and BCG treatments is never easy. The process and my treatment were made very clear after diagnosis and my ultimate aim, like all others with non-invasive bladder cancer, was to eventually after treatment hear that you are clear of cancer. I received this conformation from my urologist, 6 weeks after completing my BCG treatment, which was 6 months into my cancer journey. My euphoria was unfortunately short lived, because there is the issue of dealing with surveillance check-ups after receiving the all clear.

Monitoring and maintenance after the “all clear”

Cancer as we know can be a very stubborn disease and doesn’t always give up without a fight. So, to prevent the recurrence of cancer I was advised to continue with what my medical team called ‘maintenance‘. I was really looking forward to leaving all that treatment behind me. It’s exhausting having to battle with my emotions in respects to what I have to go through before and after every procedure. Plus, I’ve just recently got my body back into shape, both inside and out and for the first time in months I was able to sleep through the night without the need to urinate and more importantly wasn’t passing blood, or in any pain whilst urinating.

Battling anxiety

The maintenance work I was told will last for a minimum of 2 years. So again, I’ve been receiving BCG and will have 3 doses, one per week, every 3 months. I will then six weeks after my third BCG, receive a cystoscopy to look at the condition of my bladder. If this shows no evidence of cancerous cells/tumours, then I will go through this process on another four occasions throughout the year. Some people may say, and most likely those that have never had cancer, “it’s a small price to pay, if you’re cancer free” and yes, they are absolutely right. My problem is that I’ve never had an issue with having cancer. My issue is the way in which I have to receive the treatment. I hate, and I know it’s a strong word, but I do hate the fact that I get anxious before certain treatments, because I’ve never suffered from anxiety before being diagnosed. I’ve been in some scary situations in my life and my work is also high risk and neither have ever worried me. I pretend to my family, the nurses and all others that I’m fine, but I’m never going to be fine with this and to make matter worse, there is nothing I can do about it.

I plan to be more stubborn than my cancer

My treatment is working and at all cost to me whether I like it or not I plan to be more stubborn than my cancer. This self-willed, stubbornness of mine is a burden I think will be carried by me throughout my cancer journey. What I mean by this, is that I’m reluctant, in fact defiantly not prepared to show any form of weakness to this disease, even if the situation is called for. A psychologist would explain that it’s not a weakness to be scared or anxious, but a natural reaction to a real fear. For others yes, but for me, it’s a weakness and something I struggle to acknowledge. Although I have been getting better at opening up about my fears, particularly to my wife, which is a pact we made when I was first diagnosed. I have many people that look up to me, no more so than my 2 daughters and granddaughter. I really don’t like seeing them sad or concerned, and definitely not over me, so I will hide my pain from them. I also feel obliged to show friends and family members, that this fight with cancer can be achieved with a smile on your face. Even though at times my smile is so fake!

Being cancer free isn’t making me feel free

Although I am clear of cancer, it still feels like my life is on hold. I have to plan everything around my treatments and recently had to negotiate with the urology department on appointment dates so I could get to go away on important business. I’m not sure if I’m more frustrated now, than when I actually had the cancer. Being cancer free isn’t at the moment making me feel free. I’m still in treatment, I’m still going through painful days, and I’m still bleeding for a certain amount of time after my BCG vaccines. It’s amazing how initially I thought the maintenance work would be a blessing. It’s as though I’m having the option to taste a little freedom, but with a gentle reminder in the shape of a little dark cloud looming overhead. Telling me this is a marathon you’ve entered, not a sprint, so pace yourself, because its a very long road. What’s ironic is that my reaction to being told you have cancer, and then months down the road, being told you are cancer free, was pretty much the same. I felt neither happy or sad on both occasions. It’s as though deep down I knew a lot would be played out in both cases, so not to get myself to excited.

So where do I go from here?

On reflection, or in time, I’m hoping that I’m able to look back on my cancer journey and smile about these moments. My thoughts, my views and my opinions has evolved with me over the length and time of this cancer journey. I refer to myself as ‘work in progress’. I don’t have the answers and I won’t know the end result until I get there. So where do I go from here? That’s easy, I continue doing what I’ve been doing over the last 9 months, which is, to try my best to look at the positives within my journey. Pretending to be OK with my treatment and being a super hero to my family and friends, by showing them you can succeed in the face of adversity with a smile on your face, even if at times that smile is fake.

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

  • SophIzzy7
    9 months ago

    Noel Forrest, if I were to write my journey it would be considered plagiarism for how similar we tackle our acceptance, treatment, and daily life with family and friends. The anxiety is always present and heightens with every follow-up. Something I’ve accepted as a way of life at this point. I’m still in the 3-month cycles – the first was positive with no new or recurring tumors. I felt cautiously optimistic. During my second follow-up 3 months later, again no new or recurring tumors, but the urine pathology showed suspicious high-grade urothelial carcinoma. I was placed back on a 3 cycle BCG regiment and scheduled for cytology within 3 months. That cytology again showed no tumors in the bladder, but a malignant tumor in my left ureter which the doctor successfully removed. I’m scheduled for another cytology on 19 April. It’s been a rollercoaster ride, but I’m determined to keep ahead of this and accept the anxiety. Those of us battling bladder cancer know the high odds of it returning and must stay diligent and persistent with the treatment proposed by our urologist. Hopefully, with new clinical trials, new medicines, and surgical procedures all patients will have viable treatments alternatives and a brighter future in their fight with bladder cancer.

  • Sarah Wallin moderator
    8 months ago

    Wow, @sophizzy7, it sounds like your experience mirrors Noel’s a lot. Anxiety with this cancer is normal, and reading about other’s experiences can be really comforting and validating. I’m sharing with you another article about anxiety and bladder cancer (https://bladdercancer.net/living/anxiety-affects-community/). It can be really tough to get a bad report. I hope that you are doing alright with your next check coming up on April 19th. Keep us updated on how you’re feeling about it and how it goes. We are here for you. -Sarah (BladderCancer.net Team Member)

  • lroscoe
    9 months ago

    This post describes my situation exactly! I am so glad you shared this Noel. “Although I am clear of cancer, it still feels like my life is on hold” – absolutely! I think we were diagnosed at about the same time – I have another cysto next week as a follow up to my 2nd 3-week maintenance BCG. People either treat me like a cancer patient, which I am in a lot of ways, while others say “you are just being treated to prevent cancer.” Also true, but misses the point that while we are incredibly fortunate to get the “all clear” after cystoscopies, our lives are on hold indefinitely it seems, and we are very much cancer patients. Thank you so much for this!

  • Noel Forrest moderator author
    9 months ago

    Hi Iroscoe! Thank you for the feedback on this article and it’s great to hear that you can relate to how I feel. You are completely on point when you say being clear of cancer, is like having your life put on hold. Thankful of course for being clear, but always fearful of a recurrence! Staying vigilant is vital at this stage of our journeys and continuing to eat and live healthy is a must. I wish you well with your continued recovery and please keep in touch with how things are going for you. Thank you for sharing Noel, (BladderCancer.net Team Member)

  • LarryD
    9 months ago

    Noel, thanks for sharing, it helps the rest of us know if we are felling the same that we are not alone and it is “normal”. I am waiting for my first check up after doing 6 treatments. I have a 2 month “break” before they go back in and see what is happening. I feel free to not be tied down these 2 months, so I get it. I am preparing myself to be tied down to treatment again, your sharing helps. As they say we will see, I realize this is a journey. Thanks again, LarryD.

  • Sarah Wallin moderator
    8 months ago

    @larryd, I’m glad that Noel’s story was able to help you feel less alone. I hope that you’re able to keep some peace of mind in the days leading up to your first check up. We want you to know that this community is filled with others who’ve been there and are in the journey too, so feel free to reach out whenever! -Sarah (BladderCancer.net Team Member)

  • LarryD
    8 months ago

    Thanks Sarah!

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