Posts Tagged oncologist discussion

I Am Furious: Learn From My Cancer Story About Why You Must Become Your Own Medical Advocate

By Pat Wetzel, Founder of the Anti-Cancer Club

Cancer has so many stages, and not just the medical ones.  I’ve been through three rounds of chemo, got a great remission and I’m simply exhausted.  But as I learned, you can never relax. You must step up and be CEO of your own health, not just during treatment, but for the indefinite future.

I’m a reasonably astute medical consumer, or so I thought. I understood all the drugs I took; I understand my disease; I understand the profound impact of lifestyle choices and I make wise ones.  I was even married to a surgeon for 13 years so I have no illusions about the medical establishment.

But beyond recovery, you now have a new task: Following up on all those drugs and radiation that were pumped into your system. Pat Wetzel I am Furious

Your doctor may or may not warn you about the after effects of cancer treatments.  Livestrong and the University of Pennsylvania have put together an excellent tool to help.  This web based app allows you to enter your treatment history and see the most likely long term side effects to watch for. I advise everyone to try this, and to take the results to your next doctor’s visit.  Force the issue of survivorship care, because most likely, it’s not on your doctor’s 5 minute agenda.

Click HERE to access the Livestrong (Survivorship) Care Plan Powered by PennMedicine’s OncoLink.

My story highlights the need to take charge, long after treatment is done. Please share this with others, to help get word out and to hopefully spare someone else my experience.

I’ve been having trouble with my leg for over a year. I presumed it was a tennis injury that just wasn’t healing, so I finally broke down and got some x-rays.

My bones have decayed. Alkylating agents. So I googled the topic and found:

“Therapy of lymphoma with high-dose glucocorticoids and alkylating agents may result in premature bone loss, increasing the risk of vertebral and hip fractures.  In patients at least 50 years of age, 54% of men and 40% of women had baseline osteopenia.”

I am furious.

I’ve been through 2 major rounds of chemo involving Cyclophosphamide and Bendamustine, both of which are alkylating agents. I had NO idea that they might impact my bone density. The FDA warnings have no info. My doctor said nothing. Even after he saw me limping, almost unable to walk, my oncologist didn’t make the connection between the drugs and my bones. Bones aren’t his specialty. Bone docs don’t talk to cancer docs.

I am furious.

Cancer is hard enough. We bone up on the medical treatments (no pun intended);  muster our courage to pour poison into our veins; persevere through sometimes horrendous and even life threatening side effects. But it’s never over. Cancer is the gift that just keeps on giving.

The cancer community desperately needs survivorship care. But when will it be a reality? How do you get information to trickle down to the local provider? How do you install the notion of a totally new type of care into a rigid and inflexible system that is physican-centric not patient-centric?

Einstein once said that you can’t fix a problem with the same energy that caused it. How can we expect physicians who didn’t even believe in chemo brain much less other side effects to provide survivorship care?

I am furious.

Had I known, could I have done something? Some studies are using (still more) drugs (most likely with side effects of their own) to combat the bone loss. Perhaps I could have done more weight bearing exercises. Would that have helped? I’ve been active in sports my entire life. Now what? Am I to lose this too?

No one told me that there was yet another phase to this ongoing nightmare named cancer, where I had to take charge, be brave, figure it all out for myself yet again. I’ve worked through the treatments. I’ve worked to figure out the diet piece. I’ve worked to dramatically change my reaction to stress via daily meditation (I was even more upset before I meditated this afternoon!) I took charge of everything I could because when it comes to cancer, there is no one to figure it out for you. You are on your own.

I am furious.

Cancer takes so much away. We can lose our financial stability that it took years to build; some of us lose our homes, some of us lose our livelihoods. Friendships are strained when no one knows how to relate, and they fall away. This is just the last straw. Losing my mobility has been hard enough, but to find that it may be impacting my skeletal structure is too much.

And the worst part? I can’t get a hip replacement until I can move back into my house. I can’t move into my house because my insurance company, Allied which is a subsidiary of Nationwide (who is NOT on my side) has been stalling for over FIVE MONTHs on paying a claim for water damage that occurred in AUGUST while I was out of town. As a result, I’m living in a rental with little or no furniture in most rooms and a staircase that makes getting up and downstairs an overwhelming experience in total hip pain.

I am furious.

I guess I want to believe that since I toughed it out like such a trooper, I could look forward to a period of life again. I feel betrayed. Perhaps that’s unfair. I would have made the same decision to go ahead with treatment, but I wish I had JUST KNOWN about the long term implications. I just wish I had a clue what issues are related to survivorship and the various drug combinations I’ve had. If I’d been more informed, I could have been more alert to possible problems.

Why in the world does no one address these issues? For me it’s too late; I hope that for someone else reading this it won’t be. Add survivorship follow up care to the lengthy list of things you already have to take charge of. Because when it comes to cancer and health care, you are on your own.

About the Author:

Pat Wetzel

Pat Wetzel, founder of Anti-Cancer Club

Pat Wetzel is the founder of the Anti-Cancer Club.   In 2009, she was diagnosed with a rare lymphoma.  She closed down the investment fund in which she was a partner and focused on dealing with her cancer.

Cancer, she realized, is characterized by a loss of control as medical tests, treatments and protocols take over one’s life.

How does one take control of one’s health, even in the face of cancer?  What are the factors of health in the context of cancer?

Critical research by Dean Ornish, MD, David Servan-Schreiber, MD, Jeanne WallacePhD, CNC, and others all pointed to 4 key factors over which you do have control: Nutrition, Exercise, Stress Management and Connection with Other People.

Pat created the Anti-Cancer Club to shorten the learning curve for others and provide quality, actionable information for crafting a sustainable, anti-cancer lifestyle, one step at a time.  Click HERE for the Anti-Cancer Club website.

Please note the following – The Livestrong Care Plan referenced herein is intended for survivors of adult cancers. The Children’s Oncology Group website, Cure Search, is a wonderful resource for survivors of childhood cancers. In addition, childhood cancer survivors should encourage their healthcare team to review the extensive guidelines for long-term care developed by the Children’s Oncology Group.

Lots To Live For, Inc. delivers comfort during cancer. Please visit our website at www.LotsToLiveFor.com for products to reduce and relieve the unpleasant and uncomfortable side effects of chemotherapy, radiation therapy and cancer surgery.  We also offer a collection of resources to help patients along their cancer journey.

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