August 28, 2000
A Few Lessons Learned
The following words of wisdom from a cancer survivor to a newly diagnosed friend may be of use to others facing a cancer diagnosis.
We were so sorry to hear of your preliminary diagnosis. As you know, it has not been that long ago that we were faced with having to hear and react to similar news. I know that you are most likely in the information and sensory overload mode right now, but the mind and heart are wonderful things. They kind of shut down when faced with seemingly overwhelming events and let information and emotions trickle back in only as we are able to assimilate and deal with them. When I received my diagnosis, I did not even know what an oncologist was, and I was stunned when the radiation oncologist who performed my ultrasound told me I needed an immediate appointment with a surgeon; I said A SURGEON!!! Aren't we skipping a few steps here? How quickly I learned.
I can tell you that your life will never be the same, and that's not entirely a bad thing. Still the best description I have heard of what I and so many of my friends have gone through is Instant enlightenment at gunpoint. Your priorities will quickly shift and you will take inventory of many things. You absolutely will no longer have time for or tolerance of any pretense or trivialities and you will savor what is true and clear.
- A few lessons I learned that may be of help:
1. Definitely get a second opinion before settling on a treatment protocol.
- This is too important to rely on only one doctor's opinion. I think you will find that cancer treatment is a very quickly changing field with new therapies and advances coming along almost daily, and it is important to find out who is the leader in the treatment of your kind of cancer and seek that person out.
- 2. Join a support group if possible.
- There is no substitute for getting together and talking with people who are going through exactly what you are. I joined an in-treatment group very shortly after my diagnosis, and I have stayed with this group all the way through treatment (almost a year of surgery, chemo and radiation), a post treatment group (where I found out that this is where the real work starts), and now monthly meetings on our own. During the in-treatment meetings, I found the group to be an invaluable source of information re treatment protocols, clinical trials, surgeons, oncologists, as well as coping strategies. I have never been a group type person and when my surgeon's nurse visited me in the hospital post surgery and gave me the contact information, I took it but thought I would not use it. After getting the news that my cancer had spread into my lymph nodes, I told David "I think I am going to need some help with this" and went to a meeting that very evening. It provided, and continues to provide, significant support and I have formed several life long friendships with women in my group.
- 3.Integrate as many forms of western/eastern treatments as possible.
- My approach was, and still is, that I want to be able to look at myself in the mirror and say I have done everything possible to beat this. That is why I elected to have a second round of chemo with what, at the time, was a new drug in breast cancer treatment but is now part of standard treatment. I also saw, and continue to see, a Chinese herbalist and acupuncturist. The herbal treatments were an important part of combating chemo nausea and the acupuncture treatments helped me sail through radiation treatments with very few side effects. I also participated in guided imagery classes and listened to guided imagery tapes. Meditation and yoga were also important parts of my treatment regimen.
- 4. Don't rely too heavily on the internet for treatment information. While it is a wonderful source of information, the internet also has a lot of information that is either not completely accurate or just plain wrong. I found that educating myself became almost a full time job, and I read many books and talked to many people who had been or were going though treatment. I feel it is very important to actively participate in your treatment and this is only possible if you come up to speed very quickly. I had to push my oncologist to support me in my second chemo treatment, for instance, and this would not have happened if I had not insisted. The myth of expertise surrounding the medical profession is sometimes all too pervasive and can result in passivity in the face of medical opinion. This was another real strength of my group, and in listening to different women's stories, it as clear that those who were actively engaged in their treatments were better served.