The Secrecy and Privacy Still Exists: Part 7

Our journey in the cancer world is into its third month.  One of the biggest surprises I had is peoples’ response to the fact that I am blogging about it.  I often get the question. “Does your husband know? Did he agree? Are you OK with the whole world reading and knowing?”  I do have to say that in addition to these questions, I get lots of good wishes, and those who know make a point to check in personally, which is kind and heartwarming.

For whatever reason, I thought as a society, we had moved onto a phase where we realize that cancer, while it is still a difficult disease to deal with and still claims lots of lives, can also be viewed as chronic illness.  Once you lived through it, you always feel that it is lurking in the dark corners and waiting to come out again. There is also a growing body of science that helps people accept living with slow growing cancers.  For example, it is not uncommon that physicians will recommend monitoring certain cancerous findings (prostate, for example) and not rush into chemo or radiation therapy.  While might be hard to believe not all cancers have to be treated. Some cancer’s clinical experts and specialists might recommend monitoring and treating if situation changes.

I wonder if part of our comfort level with both sharing, and not panicking with treatment decisions, is because we have been here before and we have a knowledgeable, evidence-informed clinical team.  Or maybe, just maybe, we are moving along at a speed with which we are comfortable.

In my last update, I talked about the next step; that of meeting with the radiation oncologist.  I am in awe – we had an appointment less than a week after the referral which we could not keep due to a religious holiday with family.

Lesson 1:  Rush if you have to, but if not make every effort to keep as normal  a life as possible.

I also talked about seeking a second opinion. While we have an opinion regarding treatment from our oncologist, we need to hear the advice of our radiation oncologist.  We got a second opinion from a radiation oncologist  who is experienced in the field and two opinions we have so far are not consistent.  We will need to keep gathering recommendations and then we (mostly my husband) will have to make the decision.

Lesson 2:  If you emotionally can’t handle the uncertainty and ambiguity, think twice about getting a second opinion.  It can be like playing Russian roulette.

Lesson 3:  Being public about your illness, whether cancer or another illness can reduce the stress but it largely depends on how those around you will accept and respond to the news.  Keeping secrets while you are going through difficult times is very stressful and might feed into denial.

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2 Responses to The Secrecy and Privacy Still Exists: Part 7

  1. Sugel says:

    People often wonder if they should get a second opinion when facing a health diagnosis. I can argue both angles. With the extensive data sources available today on the internet, it might be sufficient to search some reliable websites in order to validate a medical recommendation. Also, if you have a long-standing, trusted relationship with your specialist and/or primary care provider (a nurse practitioner or family physician), you might be satisfied with their recommendation and not feel the need for more research or a second opinion.

  2. silver price says:

    Many types of cancers are treated by several different types of specialists. For instance, prostate cancer is treated by urologists, who are surgeons, by radiation oncologists, and by oncologists who use drug treatment. After doing some basic research on your type of cancer, you will probably know what specialists treat it. It often makes a lot of sense to see one of the other types of specialist to get a different perspective. For instance, a surgeon may be convinced that “he got it all” and that you need no more treatment. At the same time, an oncologist may have more detailed knowledge of studies that show benefit from adjuvant treatments such as chemotherapy or radiation. Similarly, a surgeon may have a better idea than an oncologist of whether a tumor is operable or not. Very often, one specialist will call in another for a consultation, so you may not have to do anything to get this second opinion. But I have heard from patients who didn’t get a needed consultation, and who missed out on potentially life saving treatment.

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