Following Up

I just called to make my yearly follow-up appointment at Stanford Cancer Center for the Hodgkin’s Lymphoma I had 7 years ago. When I finished treatment, I went back every 2 months, then every 3 months, then every 4 months, then every 6 months. I’ve been going once a year now for about 4 years now. I always have very mixed emotions going there. On the one hand, even though the cancer center at Stanford has been completely redone since I was treated (it used to be in the basement of the hospital and now it is in a gorgeous new building with high ceilings, harpists, a library, a cafe, a pharmacy…and I’m sure the infusion center is lovely too…well, as lovely as that can be anyway), it still feels so very familiar. Being back there is both a triumph in my recovery and survival…and a stressful and worrisome experience. Not that I really worry about my lymphoma coming back, because at this point my oncologists say that I am back to same risk that the normal population has of getting the disease. I worry about some of the long-term effects from the chemo and radiation that I received showing up. Lung cancer. Breast cancer. Heart disease. But mainly I worry about the breast and lung cancer. 

This year, I have to have a mammogram and MRI (since I am 35 and, as we have all learned from Christina Applegate’s experience, in dense breasts, breast cancer sometimes goes undetected with mammograms so MRIs are recommended for women under 40 who are at high risk for breast cancer). Many of the ladies on this website know far, far more than I about breast cancer. But what I do know is the early detection is key and if you know you are high risk, you just have to be educated and do the exams that will catch it. 

So this year, my follow-up appointment will be a bit different, due to this additional test. I’m actually not sure of the statistics about how likely it is that I will develop lung or breast cancer…and I don’t think I want to know at this point. It is enough to be doing the testing and the prevention piece of things. I don’t want to live in fear or in the shadow of what might be later on. I just want to enjoy my life and do the things I can do to manage the risk. Wish me luck!

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8 Responses to Following Up

  1. Good luck, try not to worry unless you have too. I know it is easier said than done. It is good that you are getting an MRI.

  2. imstell says:

    Linsey, We had a very good friend pass away 3 years ago from the very thing you are worried about. Only she’d had Non-Hodgkins. It took 30+ years for any complications to develop for her. They told her that was common. At the time I was shocked to hear that… but I’ve learned so much since then.

    Thirty years seems like a great run to me… but I can’ help but wonder if she ever lost that same dread. I’ll be thinking of you.

  3. Good luck at your exam. Say “Hi!” to Stanford for me. I was treated there in ’93 and ’94 in two clinical trials. The staff was excellent (and the treatment that saved my life is now the most common drug used for lymphoma – Rituxan).

    As for “not wanting to know.” you are not alone. Two quick thoughts: Most survivors do NOT develop serious late effects, and ignorance is not bliss when it means closing the window of opportunity to improve your health.

    You don’t need to learn anything right this second. Since you are being followed at Stanford, you are in good hands for post-treatment followup.

    I speak and write a lot about dealing with the fear associated with learning about late effects. There are ways to deal with the anxiety, so that you can benefit from being knowledgable. If you want to email me (address is on my website), I can share some references for books that might be helpful.

    You might consider planning something special for after your checkup. My husband and I used to walk in Muir Woods. Heavenly.

    With hope, Wendy

  4. Jenster says:

    Good luck!! I like Wendy’s idea of a walk in Muir Woods. I haven’t been there in years…

  5. meg wolff says:

    I came over from Jen’s blog, from John Michael’s. Phew! I wrote a blog post about Christina Applegate last week too. She was on Oprah. Best wishes on your doctor’s visit. Been there and never looked forward to them either. Bringing a friend helped me somewhat. XO & hugs to you.

  6. Harpist says:

    I think it is so great that there are harpists there. Music, particularly harp music, can be very therapeutic.

  7. linseykrolik says:

    Thank you for all your kind words, ladies! I really like the idea of a walk after my follow up appointment.

    I have gone by myself to these appointments for the past few years, but I think I’ll bring my husband with me this time. Although he is fearful too – maybe more fearful than me…in fact, I sometimes don’t even tell him about the appointment until after it is over or maybe the day of, since I don’t want him to worry. He starts looking at me funny and every time I cough he jumps. I think in many ways it can be harder to be the caregiver. But I think it would be good for us to do this one together.

    Thanks again! And I’ll keep you all posted about my testing and results – hopefully it will all be clear sailing :)

    Linsey

  8. When I had my mammograms before I had cancer, I was always relaxed. After all, I was young and the mammogram was “just a formality.” Afterwards, it was much scarier, though I worked hard to stay relaxed.

    It’s a great idea to plan something fun afterwards!

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