Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools—We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.
"How worried 'should' I be?", ponders one cancer survivor.
Cancer is a worrisome diagnosis. How long is long enough to live? Someone in their nineties may not be having mammograms anymore because they and their doctors are not worried about them dying from breast cancer. Where is that line in the sand? How old is old enough to not worry? I would guess it varies from person to person. If you are a cancer survivor, do you think you worry too much or not enough? What do you think about your level of worry compared to what your family thinks about it?
The right side of my face has felt kind of numb for a couple of days, and I happened to stumble across the article Lying in Wait, where a breast cancer survivor's facial numbness turns out to be cancer recurrence and metastasis. The odds still are in my favor and I quietly wait and worry.
As a breast cancer survivor with a recently discovered genetic cancer mutation, I go to the online Facebook support group for my mutation and learn that many of the women with my mutation (PALB2) are also being regularly screened for pancreatic cancer. No one wants to be overly cautious but everyone wants to be cautious enough. Have I had any pancreatic screening done? No. Well... not yet. Isn't finishing the procedures from my double mastectomy with reconstruction enough right now? Well... maybe.
My oncologist, who is a breast cancer survivor herself, has gently suggested that for cutting edge research and treatment for breast cancer patients with the PALB2 mutation, I could go to the Mayo Clinic or I could go to the local university. Neither option is exactly geographically convenient. Do I really need to go? I am considering it.
As a cancer survivor, I have always figured that if a person has a garden-variety cancer or other health problem, it is enough to get it addressed at a competent geographically convenient place. If the health problem turns out to be more unusual, then I figure it becomes time to find the best specialized specialist who has had more experience with the unusual. Still, now that I am in that boat, I find it hard to face, and I wonder if the people around me would support my choice.
Do your family members think that you worry about cancer and death too much? I think some of mine probably do, and yet fortunately they are not walking around in my shoes. Lindsay Norris, an oncology nurse turned cancer survivor, writes about this difference in perspective from, as she puts it “both sides of the port”.
I am glad that the people around me don't have to understand or "get it". Still, sometimes it makes me hesitate to discuss my fears and worries. I don't want to bring down their day. I don't want to be perceived as a negative person. The result is that sometimes living quietly with these worries just feels lonely.
In the end, like so many things in life, individuals’ choices and responses fall on a continuum. Each of us has a responsibility to our own physical and mental health to make the decisions we need to for our personal circumstances. Maybe what I really wish is just that we would be less "judgey" of each other and more supportive and accepting of each other's choices. Have you struggled with this too?