Hyperthermic Intraperitoneal Chemotherapy (HIPEC)
What is HIPEC?
Hyperthermic intraperitoneal chemotherapy (HIPEC) is an innovative method of delivering a high concentration of heated chemotherapy directly in the abdominal cavity to treat specific cancers (e.g. appendix, stomach and ovaries). Following the cytoreductive surgery, this solution is added to the abdominal cavity to destroy microscopic tumor cells that may remain after surgery. Heat helps kill the cancer cells and enhances the effect of chemotherapy.
Why Would I Want This?
You’re likely going to have an advanced stage of cancer (stage 3 or 4) where your treatment options may be limited, and you want to be fight back aggressively (usually against an aggressive cancer). Chemotherapy delivered through HIPEC causes fewer side effects than intravenous chemotherapy that runs through your bloodstream.Used in conjunction with cytoreductive surgery, HIPEC can improve survival and quality of life, and may be more beneficial than chemotherapy alone.
How I Learned of HIPEC Treatment
After several months of increased abdominal bloating, irregular bowel movements and other minor issues, I finally went to the doctor and was diagnosed with likely having ovarian cancer, after receiving the CA-125 blood test results.
The CT scan revealed the source of my issues, two tumors on the exterior of my uterus. The abdominal fluid was so intense it pushed into my right lung cavity, which put me at a stage IV diagnosis (“the cancer has left the abdomen and is free to move about the body!”).
To state that this diagnosis was an overwhelming shock is an understatement. Cancer? Stage four? What?! I immediately reached out to the smartest people I know in the medical field and knowing the severity of the diagnosis they said “you are young and healthy and should go with the most aggressive treatment you can find to attack this very aggressive cancer”.
I had several procedures over the years at Mercy Hospital in Baltimore and was always happy with the care I received there. I was initially connected with oncologist, Dr. Ledakis, who was a calm, caring and knowledgeable voice. He knew what I was up against and gave me confidence that we could fight back. He mentioned the potential of using the HIPEC treatment with surgery, so of course I did online search to learn more about it.
“You are young and healthy and should go with the most aggressive treatment possible to attack this very aggressive cancer."
I was stopped in my tracks when I saw a video testimonial from a patient that had received HIPEC 10 years earlier – and it was my friend Helen! I immediately reached out and she was amazing at helping me understand how HIPEC helped her and what recovery might be like. I am not sure I would have been so confident in having the HIPEC treatment had Helen not mentored me. View Helen's HIPEC story here.
My HIPEC Surgery Experience
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​Back when I first diagnosed, I had a dual-line port implanted for chemo treatments, but it never quite healed up correctly. After a PA on the surgical team wanted to just give me more antibiotics, I insisted that a surgeon look at it. One glance from across the room and the surgeon declared it had to come out, immediately. We removed it the next day and thankfully so because there was an infection behind the device that could have been extremely problematic with my surgery. Having no port was not an issue, for the surgery they just tied directly into my artery.
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In preparation for the surgery a friend had recommended a meditation book-on-tape, “Preparing for Surgery” by Martin Rossman. The concept being that if you are calm going into the surgery, there will be less stress, less bleeding and better outcomes. If nothing else, it was so damn soothing every time I listened, I fell asleep!
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I checked into the hospital the day prior. More colon cleanse! Different people from the treatment team told me what to expect and details about the entire procedure. They pre-marked my body, should they have to install in ileostomy bag system during surgery (oh please, I did not want that to happen!).
The next morning at 6:15am they came to take me to pre-op and I could say goodbye to my partner, John. From there I only have John’s Caringbridge posts and the surgery notes to know what happened. By 7:45am I was in the operating room and the first cut was at 9:10am. John went home (we only live 10 minutes from the hospital) and the nurse called him several times with updates throughout the surgery.
Coming out of surgery 9-hours later I was less a few things than I went in with. I had a radical hysterectomy and they removed my spleen, gallbladder, appendix and omentum - all nonessential things where cancer can potentially come back. They cut out a piece of my lower rectum, where a tumor was pushing against it and did a resection, thankfully it came back with no cancerous cells.
In addition to the HIPEC, one of the most important components of this procedure is having a surgeon that is incredibly meticulous. Dr. Sardi removed every organ in my abdomen, inspecting it for any visual cancer and cutting it out.
One day after surgery.
One week after surgery.
The first couple days after surgery were rough. Tubes and drains are everywhere in your body. You are tired, but getting up and walking the halls is important and helps the healing.
By day 5, I was out of bed, eating solid food and walking the my hospital floor halls solo.
By day 8, I was home!
I remember waking up the next day in ICU. It was my 43rd birthday. I purposely scheduled the surgery for the day before to determine if there was going to be anything worth celebrating, and there was! Overall the chemo and surgery were deemed a success with no complications, much of the cancer had shrunk or disappeared from the chemo.
There is no doubt this is a major surgery, probably one of the most intense you can have, outside of being in a shock trauma unit. While in ICU they get you moving quickly. Standing up from the bed with a 15” scar was a terrifying thought, but those amazing ICU nurses are the perfect combination of tough and lovingly supportive. With that, I was standing, wide- eyed and quickly moved to a chair.
Things didn’t go so smoothly when I went to get back into the bed. I remember standing up, holding onto the walking aid device and then boom – black out! Apparently, my blood pressure dropped and I fainted. When that happens in ICU, it’s a big deal. Code blue - everyone comes running into the room and here comes the crash cart. John had just left the room to get a coffee and as he is walking back, he sees all of the commotion and then realizes it’s outside of my room. He thought I had cardiac arrest and died. Yikes, happy birthday! I had a couple of blood transfusions and was much better after that.
The surgery and pathology reports are fascinating, I still have a challenge reading through all of it. I went in with an initial peritoneal cancer index score of 13 and came out a zero! Although I had responded well to chemo, one tumor mostly shrunk while another was still about 8” in diameter. Several lymph nodes were also removed and at the end of surgery there was no evidence of any residual disease.
The biggest news from the pathology report was that not only did I have ovarian cancer, but I was also diagnosed with carcinosarcoma. A type of cancer that is very rare, only 3-4% of people have it, and it’s aggressive. There is very little research about it and no known cure. I certainly was not expecting this and it will hang over me for the rest of my life.
Food
Yes, hospital food is as bad as you can imagine. Completely inedible (the salt alone will kill you) and it's just not healthy. Not to mention, it was making a delicate stomach and GI system worse. I had a daily standing order of oatmeal, plain yogurt (which they never had, only with all the sugar in it), fresh fruit and any available steamed vegetables with no sauce. The staff in the kitchen were very nice, but thought I was crazy. Mostly I had food brought in from home.
Trauma
When a doctor removes every organ from your abdomen, it takes some time for things to find their place again. I could feel my intestines talking to me “Yo! What the…who rearranged ALL the furniture, I can’t find the door!”. Translating that to mean my stomach would get full quickly, it was a challenge drinking a lot of water and my digestive system just had no clue how to get things moving again. This is major trauma to your body, and you are going to need to be patient.
Rest
There is ZERO rest to be found in a hospital after this intensive of a surgery. The nurses and technicians were absolutely amazing at Mercy, genuinely caring. But they are there to do a job and will wake you at every moment to take tests or blood, administer drugs and bath you. Your best strategy is to do everything you can to get out of there as soon as possible to get home to your own bed.
Hospital Tips
My Recovery Experience
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It’s interesting, I do remember all of this, but much of the intensity and pain evaporates over time. You mostly just recall that you went through something incredibly difficult, but that ultimately you survived. When reading through Caringbridge posts, I am taken back to distinct memories and feelings that are still a bit overwhelming to revisit.
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All hospital rooms at Mercy are private and very spacious, it was actually a fairly comfortable place. I was in a tremendous amount of pain. I had 4 abdominal drains, one large drain in my lung, a Foley catheter and tube down my nose to drain my stomach. My throat was very sore, it was hard to swallow.
I had 2 more blood transfusions, which help with my energy and overall mental state. Physical and occupational therapists would visit me ever day and I would have visitors help me walk down the halls. Once I could manage with the stomach pump turned off for a couple hours without getting nausea, they were able to take out the tube through my nose – such a relief! Out came the catheter and lung drain (ouch!). I was onto liquid foods and solids foods by day 5.
I had access to a morphine drip where I could hit a button if I needed the extra pain medicine, but honestly I didn’t really feel much when I used it (there is a lock on it so you can only access it every few minutes) and I was concerned about the addiction issue. They took it away a few days in. I was managing well by alternating acetaminophen and ibuprofen throughout the day.
Many friends came to visit me, we set up a Google sheet where people could schedule themselves so that John could get a break. It was very enjoyable for me to get out of bad and talk with people.
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Day 8 after surgery and I was finally cleared to go home. I was completely disconnected from all devices and feeds. I was walking freely and even climbing stairs! Blood work wasn’t perfect, but good enough to be sent home with 2 drains in my abdomen that were still pretty active. As it was explained to me, the chemo in your abdomen causes something like a big blister and that’s why the fluid keeps coming.
Getting in the front seat of the car was an adventure in itself and the slightest bump on the ride home was anxiety inducing!
I was constantly craving fruit; I could not get enough watermelon and cantaloupe. I think it was my body telling me it was dehydrated. My stomach was still trying to find its place and space, causing me to have limited capacity. I felt like I had bariatric surgery where my stomach was made smaller, which meant I could either drink water or eat a little, but could not do both. This eventually got better.
Recovery at Home
There is never anything quite as perfect as being home, in your own bed after an ordeal like this. I was finally getting some good sleep (about 12-14 hours a day), but on my back only and getting the hang of moving without using abdominal muscles.
I was so apprehensive about showering. The thought of water hitting my fresh wound was more than I could bear. Not to mention, I still had 2 abdominal drains. We got a chair for the shower and thankfully we had a hand-held shower head.
My drains had to be emptied throughout the day and the amount of fluid documented. I continued to alternate acetaminophen and ibuprofen for about the next 3 weeks and eventually ramped down to none.
I was up and moving independently and was walking around the house every few hours of the day, I wasn’t ready to venture outdoors yet. My head was feeling clear, but blood counts were still low and I would get short of breath quickly and had low energy. In the mirror my skin looked a little gray and flat, even my lips.
I was struggling with my digestive system. My appetite was good, I would eat small meals throughout the day, but it was a challenge getting things to move through. This caused me a lot of discomfort and cramping pain. The resection in the lower rectum added to my issues, I had to be very careful with the scars and a potential hernia.
The worst of all of this were the daily shots I had to give myself to prevent blood clots. The entire front of my body was so banged up and the 55 metal staples, I just couldn’t jab myself. It really wasn’t too painful, but I would get so worked up over it that finally John had to take over and give me the shot for the next 30 days.
About 3 weeks post-surgery I went to meet with Dr. Sardi, where he shared the full pathology and surgery reports. The level of detail is considerable and rather overwhelming. It’s hard to read and realize that all of that happened to you, your body; it feels like you are reading about someone else.
At this point I got really upset and started crying after the doctor left. There is a realization that after all of this, all that I have been through, it may never end. There is no cure for this. It’s not “your leg was broken, you went through surgery, wearing a cast and now you’re as good as new”. I am never going to hear that. There are no series of steps that will get you over some imaginary finish line.
And doctors don’t make it any better, they don’t want to give you false hope – yes, it went well, we removed all of the cancer that we could see and pathology shows that some of what we cut out did not have any cancer at all. But that is no promise that they got it all, that it’s not still there or that it won’t come back. The realization that I have been through hell and it still may not be enough just came crashing down on me. I’m not the overly emotional type, but this overtook me like a tidal wave.
2 months later - playing golf!
I would highly recommend HIPEC surgery. With such a high recurrence rate for ovarian cancer go at it aggressively...
3 months later - celebrating the holidays!
Months Forward
Heading into month two I was moving better and walking more, but still not eating enough, continuing to lose weight and have low energy. Staples were removed and the incision was looking good. Nothing is scarier than if you have to sneeze and no big laughs are allowed. If I overdo it I will feel the pain in my abdomen the next day.
I went in for an iron and blood transfusions, which did wonders. You don’t realize how poor blood quality and anemia can affect your mental state. I was having some pretty dark thoughts and boost in red blood counts was a salvation. I have never loved people that donate blood more in my life. A small gesture that is a literal lifeline.
One month after my surgery was my first night out of those and to a restaurant. It was amazing to put on real clothes and lipstick! It was a lovely evening until the end when we had to leave quickly because my body decided it was time for the bathroom, now. This unpredictability with my GI system would stay with me for the next 7 months.
The latest addition were hot flashes, resulting from the radical hysterectomy. At first ,I didn’t know what was going on, why was I so hot when sleeping? Well I know now!
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Getting stronger every day! My mental focus and stamina continued to improve, and I started doing some weight training again. I was back cooking and made a fabulous Thanksgiving meal. Still some pain around my scar, no pants with a waistband, but most of the healing issues are internal now. The incision gets tight and I have to consciously sit up straight and stretch.
My first CT scan looked clear and my CA-125 test was down to 7.
Still having GI issues, was getting much better, eating full meals now, but then constipation started the last week. Don’t know what is up with that, but I’m trying all the options. It makes you very unhappy.
I was thrilled when I was able to swing a golf club and play 18 holes exactly two months after leaving the hospital. This was not something I thought would possible so quickly.
As the months continued so did the healing. I struggled on and off with constipation and diarrhea, but was able to get that under control. By 6 months after my HIPEC surgery I was feeling very much back to being myself. I was swimming, increasing my weight resistance training and feeling like I was getting my life back.
“HIPEC has been used for years in some abdominal cancers, but researchers are just beginning to test it on advanced ovarian cancer. Mercy says it is the only U.S. institution investigating CRS with HIPEC in women newly diagnosed with ovarian cancer to see if it could be a new standard of care.”
– Dr. Armando Sardi featured in the Washington Post.
More About HIPEC Treatment
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I had several procedures over the years at Mercy Hospital in Baltimore and was always happy with the care I received there. I was initially connected with oncologist, Dr. Ledakis, who was a calm, caring and knowledgeable voice. He knew what I was up against and gave me confidence that we could fight back. He mentioned the potential of using the HIPEC treatment with surgery, so of course I did an online search to learn more about it.
I was stopped in my tracks when I saw a video testimonial from a patient that had received HIPEC 10 years earlier – and it was my friend Helen! I immediately reached out and she was amazing at helping me understand how HIPEC helped her and what recovery might be like. I am not sure I would have been so confident in doing the HIPEC had Helen not mentored me.