Published by
Stanford Medicine

Cancer, Mental Health

The anxious warrior: Life as a cancer survivor

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from cancer survivor Dan Adams.

This past November I had my semi-annual cystoscopy. My visit was an early Christmas present, as I wound up receiving an “all clear” from my urologist. This coming May, if I get another “all clear,” it will mark five years of cancer-free living.

I had a resection to remove a bladder tumor in April 2008. I received an inconclusive pathology report following that procedure and a lot of hesitation from my first urologist. That’s when I sought a second opinion from a urologist at a major university hospital. Another resection and a couple of rounds of immunotherapy, and my bladder cancer was gone.

My follow-up cystoscopies were initially every three months, and now I’m comfortable with a six-month schedule. If something is going on in there, I want to catch it early. I’m not ready to move to an annual checkup. I don’t know if I will ever be ready.

It’s been a bumpy road; a few “red spots” in the bladder that required biopsies and a perforated bladder (those damn catheters) elevated my anxiety above and beyond what might be the norm following a cancer diagnosis. Having a cancer with a high reoccurrence rate also contributes to my feelings of anxiousness.

During the first couple of years in this war with bladder cancer, anxiety consumed my everyday living. Cancer was always on my mind, but I was unaware that anxiety was running my life. It took a long time, but eventually I learned to recognize changes due to anxiety, things that aren’t really “me.” Inattention to details, aimlessly daydreaming and becoming much more emotional were some of the telltale signs. I realized things weren’t right and I sought the professional help I needed. Thankfully, this help and the encouragement and support of a close family brought me through a very trying period.

While my anxiety is more or less under control, I’m still very aware that it’s there – and I’ve come to realize that knowing you have anxiety issues is essential to dealing with them. I know my anxiety level increases as I approach my next cystoscopy, and so I now slow down in the weeks leading up to the procedure and defer major decisions to a less anxious time.

I’m very aware now of anxiety and how it has affected my life beyond cancer. In this nearly five-year battle, anxiety has been the one medical issue, or side effect, that no one brought up; no one mentioned it as an issue to be aware of or offered treatment. I wish someone, in the beginning, had told me that cancer is a game changer, that my life will never be the same. I wish someone had explained that I need to be aware of how powerful anxiety can be, how it can affect your life, your relationships, your work.

I’ve been a bladder cancer warrior for almost five years, but it’s been only the last few years that I’ve come to realize that anxiety – not just the disease – is something I need to conquer.

Dan Adams lives along the Southern New Jersey Shore where he and his wife of 35 years raised three children and recently became grandparents for the first time. Dan is committed to raising awareness of bladder cancer and supporting those who are newly diagnosed through the Inspire/BCAN Support C0mmunity.

15 Responses to “ The anxious warrior: Life as a cancer survivor ”

  1. Don Stranathan Says:

    Thanks for sharing Dan, I an coming up on four years as a stage 4 lung cancer warrior. Keep fighting….

  2. BDennis Says:

    Thanks for sharing your story! And to Inspire and Stanford for providing a means of education and sharing the survivor experience. Best to you in conquering the emotional part. As a survivor of a different life-threatening illness, I’ve invested heavily in therapy and am so grateful for how this has helped. Fear and anxiety can easily get the best of us under “normal” circumstances, but when you throw in a critical illness, it certainly challenges our being. Best to you in your journey …

    Becky
    http://www.bdbrainwreck.com

  3. NPennington Says:

    Doctors should also realize that the caregivers of patients also suffer from this anxiety, wait and see, wait and see, wait and see, never ending testing etc, never a day without worrying about your loved one.

  4. Laura Wells Says:

    I am especially impressed that you, a man, would be so open about anxiety, that is such a large part of the cancer battle. Hopefully, you will give other men the courage to notice their own anxiety and seek some help for it. It’s a little easier for us women :)
    I belong to the metastatic breast cancer group at Inspire, and understand the long term affects of constant worry. We are always worried about spread, and recurrence, and efficacy of treatment. I have learned that, it’s better to “manage” my anxiety than to fight it.
    Thank you for sharing your struggle. We are all in this together.

    Laura Wells
    STAGE IV LIFE Metastatic Breast Cancer Foundation

  5. WhiteStone Says:

    Thanks for sharing. I’m a 4 year survivor of ovarian cancer, and still doing one chemo after another. Anxiety is part of the game but I try to not let it control me. I’m learning to live “as normally” as possible, and enjoy every moment of every day. My faith in God, no matter what comes my way, helps me relax a bit and just “live” each day. For those who are having difficulty with anxiety, counseling is a great help.

  6. Mighty Casey Says:

    I’m closing in on 5 years since Stage IIa breast cancer, with my 5-year mammogram due in the next month. Anxious? Yes. And I know that anxiety will never fully leave.

    It’s certainly abated since my 1st post-treatment mammogram – that was a stress-fest, lemme tell you! – but once cancer and your name are used in the same sentence … everything changes. Forever. And all for the good, particularly if you win the war.

    Life is sweeter, sharper, and more focused during and after cancer. Not that I wish a dx on anyone, but if you’ve had one? You know exactly what I mean.

  7. Barbara Bergen Says:

    Thank you for speaking about anxiety as a topic. I have been dealing with bladder cancer and the side effects of treatments and procedures since 2009. I will start chemo in 2 weeks and then more surgery. I also have anxiety and a very good doctor for it. Medical personnel on the BC side have mostly been very caring individuals. They always offer me extensive medications for pain. I deal with pain very well so I don’t take any. But what I have observed is that even when perscribed for me, hospital personnel have often been reluctant to give me the anti-anxiety medication in a timely manor or at all. I have discussed this with my doctors and there has been some better compliance. Anxiety can be debilitating and hinder recovery. No one should have to fight the medical professionals for perscribed medications and cancer at the same time.

  8. Dan Adams Says:

    Thanks for all the kind comments. A year after I discovered I had a serious medical issue; blood in my urine, I sought help through my GP for anxiety. I believe the biggest issue in dealing with it is recognizing you have an extraordinary level of anxiety, constantly remind yourself it’s there, learn to slow down and being careful in every day activities.
    If the article lights a fire, a small flame will do, in the medical community, then dropping my guard and exposing a perceived “weakness” will be worthwhile, as some will benefit from the start of their journey as their doctors, surgeons and other medical professionals will address the “total” medical condition. That’s my mission.
    Best wishes,
    Battle on,
    JerseyGuy
    (Dan Adams)

  9. Laurel Felsenfeld Says:

    Thanks for bringing up this topic. What I find especially disconcerting is the lack of support by the oncologists to address the anxiety. In every office visit note I am described as “anxious” and on one appointment diagnosed with “mood disorder NOS”. Now, I am a nurse and I dont take too kindly to someone diagnosing me with anything without offering a treatment plan, much less when they dont tell me Im being given the label. My last appointment I confronted my oncologist, asking her how would she feel to read a report and see herself described in such terms if she had the misfortune to get a catastrophic diagnosis. I said frankly doc I was having a damn great day until I had to walk into a building that has in big bold letters “dead rich lady’s name CANCER CENTER” across the entrance. How do you expect people to respond? Handing me a card for the social worker doesnt absolve you from the responsibility to tell me what to expect from my condition, and it should be more than just the physical.

  10. Ian Clements Says:

    A similar story to my own (dx Oct. ’07), tho’ mine was a worse case (G3T3bN3M1) and only given a few months at best to live.

    I monitor via molecular markers. Which, showing an somewhat high value recently led to another check (G2T2a) and intravesicular chemo.

    My anxiety levels are reducing nowadays, as I come to believe the cancer is probably manageable.

  11. Mike Says:

    Dan, thanks so much for sharing. Discovered my bladder cancer in Nov 2012, successfully removed it, but found another small tumor at my 3 month cystoscopy. It was zapped easily, but now as i wait for my next 3 month scope, it’s like i’m always waiting for the ‘second shoe to drop’. Until reading your story, i’ve not thought about how anxiety is affecting my life (and those around me). It’s something i am now going to address with my self and my doc. Thank you!

  12. Eternal_Hope Says:

    Dan,
    I appreciate this post far more than you’ll ever know. I’ve had anxiety issues for the majority of my life, but especially in the past couple of years as I was approaching the post phase of menopause, which led me to seek medical intervention and resulted in taking a daily medication (for which I am thankful).
    Just 9 days ago, my urologist confirmed that the biopsy of a “polyp” at the opening of my left ureter came back as a low grade malignancy in it’s early stages. My husband and I were informed of the high risk for possible hemorrhage of a TURB procedure (due to the tumor location) during surgery as well as a couple of weeks afterwards. We then agreed to have it done on April 30th. Initially, I was the calm, collected and composed one of the three. My doctor and husband were having a much tougher time with the diagnosis than I was. Quite frankly, I somehow just “knew” long before I was even referred to an urologist. However, a couple days later, I became someone I didn’t even recognize. Anxiety? I haven’t been able to sleep and have all but lost my appetite. I can’t remember hardly anything and to make matters worse, it didn’t take but these past few days since diagnosis to wear my system down just enough for me to develop yet “another” UTI which has by far been the worse pain of any UTI I’ve EVER had. Consequently, I was prescribed 10 days of Cipro and taking Tramadol to mask the intense spasms within my entire pelvic region as well as my back, from the kidney area down and radiating around my sides. Needless to say, I am definitely experiencing the perils of anxieties effect and will keep what you’ve said in mind, especially in the days ahead.
    Grateful!

  13. Darrell Says:

    Thanks Dan, your story will help many bladder cancer patients. I had bladder cancer in 1992 and resection of egg size tumor completely inside the bladder. All cystoscopy checks since have been okay. My only ongoing problem is the cystoscopy pierced the Urethra (sp) a couple times and ended up with scar tissue. I have a permanent leakage and have to wear diapers 24 hours a day…which was hard to accept but am okay with it now. In fact I like the idea of not having to worry about restroom availability or cleanliness anymore!
    My anxiety was quelled the first day I was told I had Bladder Cancer. I went straight to the Library and read all I could about it. Learning there was a 95% cure rate settled my anxiety nearly completely and it was never a serious problem.

  14. Mike Says:

    Thank you Dan –

    I’m a 8+ year appendix cancer survivor, but the wolf is always at the door. I can go for long stretches where I’m OK mentally but then Like now, I’m fretting over a 5 lbs weigh loss that I might be sick again. It doesn’t help that I’m still what I believe to be in protracted withdrawal from 6 years of Lexapro use. I guess my life will never be the same.

  15. Bob Says:

    Dan,

    Your situation sounds strikingly similar to mine. I am now 10+ years out. Having a easier detectable and treatable (if caught early)type of cancer certainly helps our situation. I was able to hand-pick my specialist and get treated quickly (TURB and BCG treatments)- yet I had a recurrence followed by another TURB and intravesicular chemo. Also some other fun procedures such as biopsies and a urethrotomy! The first 3 months following diagnosis I read everything I could find on Bladder Cancer. I still scan the literature weekly to see if there is something new that can help me or others. Although I try to lead a normal life the fact that I need to be followed through cystoscopies, CT-urograms, urine cytology, etc. keeps my mind working on the possibility of a new recurrence. I never forget but I suppress it to a great degree except as my procedures become closer I do worry more about it. All in all worrying does nothing to help if you are already doing everything you can possibly do (healthy lifestyle, diet, nutraceuticals, and supplements. Worry about the things you can control and forget the rest! Great advice coming from a family of worriers! :-) I tell my wife it is not worrying but anticipating outcomes! :-) BTW – she doesn’t buy that strategy! :-)

Comment


Please read our comments policy before posting

Stanford Medicine Resources: