Scanxiety Made Me Change My Cancer Surgery Decision

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After experiencing intense scanxiety after my single mastectomy, I decided to go back and have a prophylactic mastectomy.

If you spend much time talking with cancer survivors, there is a term which will eventually come up in conversation: scanxiety. This is the crippling anxiety that comes with each scan, imaging study or screening test. While undergoing treatment, it arose with a new test or scan, either because of new symptoms (therefore trying to ascertain if those symptoms are due to the known or worsening cancer), or perhaps to try to determine how well the treatment is working (hoping to see shrinking of tumors, presumably in response to current therapies).

For people who have cancer which is successfully treated, it is common that there are routine cancer screenings at regular intervals. In the case of breast cancer, I knew of the following options: if a person chooses a lumpectomy or a single mastectomy, she (or he) will still need mammograms on at least an annual basis, and sometimes additional screening tests are necessary as well, such as breast MRIs. For those with dense breast tissue, a common protocol is to have a mammogram and then a breast MRI six months later, each done annually, so there are two breast cancer screening tests per year. Once a person has a double mastectomy, they will no longer require regular mammograms or screening tests, as the breast tissue is now gone (or nearly completely gone, as much as current surgical techniques allow – there will always be SOME breast cells remaining).

I knew that this was the case when I opted for a single mastectomy. The idea that there would be NO screening tests going forward made me quite uncomfortable, and I felt that I wanted the reassurance that came with routine imaging studies.

Let me say that in general, I am a very logical, rational person. I am a physician – I spend my entire work life weighing risks and benefits. Of this test, of that treatment, of not taking specific action and instead just watching and waiting. I understand that there are no guarantees, and that having regular screening tests, even ones that are interpreted as normal by trained radiologists, does not provide 100% assurance that there is no cancer.

With all this in mind, I thought I wanted regular mammograms and breast MRIs on the remaining breast. I honestly thought I would feel better by having them. So, I was totally and completely unprepared for my own extremely powerful reaction when I had my first post-cancer screening breast MRI. To say I was a basket case would be the understatement of the century.

In the 24 hours between having the scan and receiving the results, I perseverated, ruminated and catastrophized about what I imagined the results would be. For 24 hours, my mind was completely consumed by fear, and no matter how hard I tried, I was absolutely unable to rationalize my way out of this primal panic response. I have never had a reaction anywhere close to that before.

This was my first introduction to scanxiety: the unrelenting dread, the slowing of the passage of time, the twisting of reality in my head… Experiencing this just once was too much for me.

Eventually, I opted to have three more surgeries in order to avoid going through this every six months with each screening test. I had a prophylactic mastectomy on the other side followed by two reconstructive surgeries. Certainly, there were other benefits that I gained by having the prophylactic procedure, but one of the biggest advantages in my mind was never having to go through that emotional spin cycle again.

I realize how fortunate I was that this was even an option available to me. There are so many people out there who are living with metastatic cancer who will always need to have scans and tests that can trigger debilitating scanxiety (at least temporarily). I have a massive amount of respect for those who must go through this regularly. Even for those cancer survivors who are not metastatic, each screening test can bring them right back to the beginning of that terrifying journey. There is absolutely a very real degree of PTSD that develops from this entire experience.

So the next time you are talking to someone with a history of cancer, keep in mind that cancer’s effects are quite far-reaching, even after treatment is over, and especially for those people who will be in treatment for the rest of their lives. Offer to lend a listening ear and an open mind – it can help to quell the rising tide of the powerful emotional aftermath of cancer.

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