Mesothelioma Survivor: What to Expect Before, During and After HIPEC

Treatment & Doctors

Surgery isn’t something the average person signs up for willingly. When I was diagnosed with peritoneal mesothelioma, at first I didn’t know that surgery was an option.

Then I was referred to mesothelioma specialist Dr. Edward Levine, who told me about the HIPEC procedure. Of course, being a newbie on the cancer journey, I didn’t know what HIPEC was. I was given pamphlets and lots of information, but at that moment in time, to be honest, I really didn’t care what I had to do – I just wanted to be cancer-free. 

For those of you who aren’t familiar with HIPEC, it stands for heated or hyperthermic intraperitoneal chemotherapy. During this procedure, after the surgeon removes any tumors, a heated chemotherapy solution is delivered into the abdomen to kill any remaining cancer cells. This helps prevent a recurrence of cancer.

Scared, But Ready for Surgery

Being that I had never had such a serious surgery before, I really didn’t know what to expect. The medical team did a great job of explaining to me each step in the process. I was still scared, but ready to get it done. 

When you’re told you have cancer, I don’t think anything really registers with you after that point. Once I knew I was a great candidate for the HIPEC surgery, whatever information I was told or read pretty much went in one ear and out the other. All I knew was that it could help get rid of the cancer and put me on the road to being cancer-free.

For patients who have been approved for HIPEC surgery, here are some tips that will help you prepare.

  • Ask questions. Don’t be afraid to ask your medical team about any concerns you may have.
  • Journal. Journaling will help you get your thoughts out. I like to call it a brain dump. This will also allow you to go back at a later date and process what’s been happening.
  • Get support. Having support is vital in this journey. Whether it’s a spouse, other close family member, friend or neighbor, choose someone who’s dependable.
  • Prepare for aftercare. Some things to ask yourself are, where will you be going after surgery? And what things will you need? Make a list.
  • Tour the unit. Ask your doctor if you can take a tour of the unit you will be admitted to. This will allow you to meet the team and see where you will be going after surgery.

What to Expect on Surgery Day

Even though it was 14 years ago, I still remember the day I had surgery. I can recall checking into the hospital, waiting in the waiting area and getting called back for pre-op. 

I was pretty fine and in good spirits until I changed clothes and the anesthesia team came in. My mom was by my bedside, and she started crying so I started crying. I can still hear my husband and my mom saying, “We will be here when you come out of surgery!”

About nine to 10 hours later I woke up in the intensive care unit. Actually, I was in a step-down from ICU. After HIPEC surgery, patients usually go to the ICU due to the long duration and seriousness of the surgery. Then, after they’re stable, they will be transferred to a regular hospital room. I was informed that I did really well, so I didn’t have to go to the ICU. 

Remember, every patient is different. Being that I was just 21 years old and never had surgery or any previous conditions, I had a great outcome. Some patients may need to stay in the ICU. It’s best to speak with your doctor about where you will be placed after surgery. 

Post-Surgery and the Road to Recovery

I was in the hospital for about a week and a half. My hemoglobin level was terribly low and my creatinine levels were high. When your creatinine levels are high it means your kidneys aren’t functioning correctly.

The problem with me was that my kidneys were still asleep. My kidney function was impacted due to the amount of anesthesia and the chemotherapy. I was told that if my levels hadn’t gone back down, I would have had to go on dialysis just to jump-start them. Good thing is, I didn’t have to take that route. 

When I was able to stand for the first time it felt as if my stomach was going to drop on the floor. One of the nice nurses gave me a pillow, which aided me as I walked. I held on to the pillow and it became a comfort thing for me.

 Out of all the pain I experienced after the surgery, the gas pain was the worst. I mean, the worst! One thing that really helps the gas to pass is walking. So, I would walk any chance I got, with assistance of course. 

Some things to keep in mind are:

  • Don’t try to rush the process. Take your time and remember that recovery is a journey, not a race.
  • Follow doctors’ orders. Be compliant. This means keeping all of your follow-up appointments.
  • Don’t be afraid to ask for help. If you feel as if you’re not ready to be discharged, please discuss it with your doctor.

Once you’ve been discharged home, things will be much more comfortable for you since you will be in your own environment. It’s important to still rest as much as possible and watch out for red flags such as fever, swelling, etc. Follow your discharge instructions and contact the on-call nurse if you have any concerns. 

As for my recovery, it took me a good couple of months to feel “normal” again. This may vary depending on the patient.

Just as with any surgery, HIPEC has its risks and side effects. Several studies have shown that HIPEC surgery drastically improves life expectancy in about half of the peritoneal mesothelioma patients who have it. As for me, the benefits outweighed the risks! 

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