“It’s growing again” — My second second opinion and the decision to have surgery

In my previous article, I wrote about how I achieved “remission” through chemoradiotherapy.

About a year has passed since then. Once again, I have reached a point where I must take action.

The signs were there all along

Around February 2021, I started noticing discharge from the scar (surgical site).

It stopped after a while, so I didn't pay much attention to it. However, around May, I also started bleeding. It stopped immediately, but from that point on, the discharge became constant. Since I kept being told that there were “no issues” during my regular check-ups, I continued to “wait and see” while managing it with over-the-counter feminine hygiene pads.

——Looking back now, I wish I had spoken up sooner.

It was around September 2021 when I finally decided to consult my primary doctor, thinking, “This is definitely strange.” They immediately scheduled multiple tests, including an endoscopy, CT scan, MRI, and pathology exam. Tests are tough, aren't they? Drinking MoviPrep over an hour, enduring the noise of the MRI, and the waiting time—it’s all exhausting. Even though I’m used to it, having multiple tests all at once is always hard.

Then, in October, the results came in.

“The primary tumor is growing again.”

Even though there were no problems in the previous tests...

“You will have to have your anus removed.”

After receiving the diagnosis of regrowth, the explanation from my primary doctor was clear.

“An abdominoperineal resection (permanent colostomy) is necessary.”

About two years ago, I had prepared myself for this once, but then I received hope from a second opinion that it “might be possible to preserve it,” and I managed to reach remission through chemoradiotherapy. It felt like I was back to square one.

——So it really comes to this, huh.

Strangely, I didn't panic. Perhaps, deep down, I had been thinking that this might happen. However, I couldn't accept it right away.

“May I go and get an opinion from another hospital?”

When I said that, my primary doctor readily agreed. Their response at that moment deepened my trust in them even further.

The second second opinion

In November 2021, I went to a cancer specialty hospital in Tokyo (Hospital D).

I had a consultation with a prominent doctor. The conclusion was the same as that of my attending physician at C Cancer Center.

“Considering the goal of a complete cure, removing it entirely is the best option.”

—I knew it.

But these words helped me let go of my hesitation. Two experts had reached the same conclusion. To waver any longer would only delay treatment.

I decided to have the surgery at C Cancer Center. It was closer than D Hospital, and above all, I had trust in my attending physician, who knew the entire history of my case.

Resignation

On the way back from the second opinion, I felt a shift in my mindset.

“I will have a permanent colostomy. There’s no point in struggling against it anymore.”

It had been about two years since my initial diagnosis. I had spent that whole time acting on the desire to “preserve my anus.” But this time, strangely, I had no doubts.

What was different from the beginning? I think it was the “amount of information available to choose from.” Over two years, I learned the reality of treatment, experienced two second opinions, and kept researching various things, which allowed me to form my own judgment: “If the condition allows for surgery, resection is the best way to ensure a good prognosis.”

That is why I did not hesitate.

There is no regret in a choice you have researched, asked about, and accepted for yourself.

I won’t say I have absolutely no regrets, but this is an important thing I realized through cancer treatment.

Preoperative preparations and an incident during testing

In preparation for the surgery, several tests were performed, including a CT scan, MRI, and endoscopy.

I went through the familiar tests as usual, but this was the first time I had an allergic reaction to the CT contrast agent.

I lay down in the CT scan room, the contrast agent was injected, and I felt the usual sensation of my body getting hot. Up to this point, it was normal. I was instructed by the machine’s voice to “hold your breath,” so I did. At that moment, I started coughing and couldn’t stop. The test was immediately aborted, and I was taken to the treatment room. I experienced coughing, fever, difficulty breathing, itching, and flushing. I felt unwell for a while after the test, but it improved over time. I was a bit surprised, but I learned that allergic reactions can occur when the use of agents like contrast media increases. From then on, it was decided that I would basically not use CT contrast agents.

Also, when the admission ward explained the hospitalization schedule, they said they would contact me “by the day before admission” without giving me any estimated timeframe, which honestly left me feeling uneasy. I think most people would be troubled if they were suddenly told the day before, “You are being admitted tomorrow”... Anyway, I thought it was problematic not to have a confirmed date until the day before, so I consulted my attending physician and was easily given a schedule. It seems the admission ward cannot provide a schedule on their own because they don’t know if a bed will be available until the very last minute.

Don’t hesitate to ask about things you don’t understand or are troubled by.

Ask about everything right away. This is also one of the things I learned during my treatment period.

Conclusion

It was about two months from the discovery of the regrowth to the decision to have surgery.

Looking back, I am glad I took action during this period. By getting a second opinion, I was able to face the surgery feeling that I had done everything I could.

Next time, I will write about the day of the surgery, my hospital stay, and my recovery.

Thank you for reading until the end.

[Related Articles]

I have compiled a separate (paid) article about the two second opinions I actually received, including why I sought them, the costs, preparations, and the questions I asked and the answers I received on the day.

※ This article is a record based on the author's personal experience and does not guarantee the accuracy or effectiveness of any specific system, procedure, or medical practice. The information provided may vary depending on the time and circumstances. The author assumes no responsibility for any damages or disadvantages that may arise from the information in this article, so please make your final decisions at your own risk.