My wife Wendy wrote a post to the advanced prostate cancer online support group where she discussed our recent experience re-entering the healthcare system to deal with a non-prostate cancer issue. In the post she shared that I have been diagnosed with a rare cancer, appendiceal cancer, specifically a mucinous cystadenocarcinoma.
We have become very good about educating ourselves about prostate cancer as well as melanoma, renal and thyroid cancers since I have all! All of these cancers, being very common meant that the process of finding information wasn’t difficult, the hard part is sorting out from the extraordinary amount of information what is important and what is not as important. Also, finding competent physicians with good experience is not terribly difficult, especially for those of us with medical insurance who live in urban or suburban locations.
Now, when one deals with a rare cancer the picture is very different. The experience Wendy and I have had on this new journey has added to our understanding of advocacy — particularly focusing on the importance of advocating for the best available care, on researching and understanding treatments, on the options and on the frustration derived from having to make life-saving and quality of life decisions while not relying on any evidenced based research, but instead on a doctor’s gut and experience. Then compound this with the simple fact that there aren’t any doctors who have had very much experience to fall back on.
The scarcity of patients also means that not only are there no doctor experts, there is no interest by the research community or by the pharmaceutical companies. I do admit that this is very understandable as nobody could possibly make a living specializing only in a rare disease.
So, unlike prostate cancer where we urge people to find someone who specializes in the disease we’re looking for docs who’ve seen at least a few appendiceal cancers in their careers. Doctors with even this very minimal expertise are few and far between leaving survivors of this cancer (as well as the other rare cancers) to literally be hung out to dry!
So, as I recover from my first big abdominal surgery and making plans for what I assume will be another bigger one soon to come, Wendy and I continue to do what we do. As all of us need to do, whether we are fighting a common cancer like advanced prostate cancer or a rare cancer like appendiceal cancer we continue to educate ourselves by reading and culling whatever materials are available; gathering questions and then seeking the answers, speaking with any doctor who is willing to share information and reaching out to the few other survivors of this cancer that we are able to locate.
Yesterday Wendy and I returned to the hospital where this diagnosis was made in order to pick up CDs of the scans, surgical notes, and tissue blocks that we’ll take to those docs who sound like they have treated this cancer. As Wendy said, “Yes, we’ve done this before, as have most of the members of this group have had to do, but I was reminded again how vitally important it is for each of us to do this work despite our stress, and how hard it can be sometimes to stand up for what we want and think is best for ourselves and our family, particularly when we know next to nothing about the illness and our. Stress levels are through the roof! We will learn because we must learn and we will seek out other rare cancer survivors, because we both know how much shared information does help — practically and emotionally”.
If you read this blog or participate in the advanced prostate cancer online support group you probably focus your health attention on Prostate Cancer, but Wendy and I have been sharply reminded how important it is to take seriously other symptoms and health care issues we may face as well.
Despite this turn of events, I will continue to write this blog, continue with Malecare to create new and innovative programing to make the lives of men with advanced prostate cancer better as well as add to the already rich programing we provide at Malecare (www.malecare.org).
Joel T Nowak, M.A., M.S.W.
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