Nerry's Journey with Squamous Cell Carcinoma, Oral Cavity ...

I couldn't believe this was happening to my husband. He had had pain in his tongue for over a month. He thought it was an ulcer and we went to a surgeon who offered to remove it. The pathology report then came positive.

After the results of the initial biopsy came out, my husband underwent surgery in which part of his tongue was removed, along with the lymph nodes. The surgeon had to remove a proper safety margin after the biopsy. The surgery itself went smoothly; however the side effects and the impact to daily life were a huge shock to my husband and I.

The surgeon said that he didn't think that my husband needed radiation. We sent all medical reports and history to IGR in France and they seconded the opinion of the surgeon, with a recommendation for close follow up after 3 months. We also sent them to the US to a friend who sent it to a doctor there. The doctor thought we should do Radiation. We sent them to Germany and they thought we should remove the lymph nodes on the other side as well. Finally we decided to take the surgeon's and IGR's opinion and we didn't do anything.

We thought that treatment was finished at that stage

My husband started experiencing pain again. We saw the surgeon and he said it was normal after such surgery. 2 weeks later when the pain increased we visited the doctor again and he recommended a Fine Needle Aspiration. The results were negative; however he said he wasn't confident about the results. We travelled to Paris, IGR, and met with the surgeon there. He confirmed that the cancer was back. He recommended an aggressive course of treatment: Chemo therapy followed by surgery followed by Radiation concurrent chemo therapy. We went back to Egypt to start Chemo therapy. The medical oncologist there convinced the surgeon in Egypt to have a biopsy first because he was had doubts that it was back. My husband agreed to do the biopsy, which turned out positive. He then started the chemo treatment, but unfortunately he acquired a fistula

My husband acquired a fistula, so we decided to go back to Paris to resume treatment. In addition to the usual side effects of chemo therapy; nausea, hair loss, fatigue and fever there was the complication of managing a fistula.

In addition to the usual side effects of chemo therapy; nausea, hair loss, fatigue and fever there was the complication of managing a fistula. Everything he ate through the mouth went through the fistula.

he had to depend on a feeding tube until the fistula healed and he was able to eat through his mouth again. 3 weeks later the fistula recovered and he was able to eat through his mouth; however the doctor recommended to keep the tube because of the side effects of surgery and radiation.

After he finished chemo therapy. He did a PETCT. The doctors told us he responded very well to the treatment that they choose not to proceed with surgery, because it's huge and will have a great impact on his life. They chose to proceed with Radiation. He had a total of 35 sessions spread over 7 weeks. He didn't feel much during the first 2 weeks.

We were excited that the treatment was over and were so eager to go back to our country. We had been in Paris for 4 months.

Unlike the chemo therapy side effects, unfortunately the side effects of Radiation are permenant. Swallowing problems and mouth dryness are the main side effects of Radiation. His speech is slurred as a result.

One month later, my husband started experiencing pain again. we did a CT and MRI and we sent the results back to Paris. They told us to go back to the IGR because they needed to do a biopsy, because they had suspicions the cancer was back. We did another FNA that proved to be positive again. The surgeon confirmed that surgery was inevitable.

He started chemotherapy to control further growth of the tumor.

He started experiencing panic attacks for fear that the cancer was back. When we went back to Paris, we met with a psychiatrist at IGR and he started taking strong anti depressants.

He had a fever of 41 degrees and was hospitalised for 3 days trying to manage the fever

unbearable pain. he was on very strong pain killers that made him sleep almost all day and night

It was a huge surgery, lasted for around 11 hours. They removed part of the mandible, tongue and all his teeth on the right side and they did reconstructive surgery as well. They took bones and muscle flaps from below his left arm. He had to stay at the hopsital for 5 weeks.

The intern at the hospital told me that the tumor was very close to the artery and there was a very high chance the doctor will not be able to proceed with the surgery. At that time my husband was in so much pain he was sedated and didn't hear what the intern said. I tried to reach the surgeon but it was around christmas time and I wasn't successful. 2 weeks later, 5 days before the surgery, my husband was hospitalised because of very high fever and the surgeon passed by. He explained that the MRI showed that the tumor was very close to the artery. He was going to start the surgery by trying to remove the tumor away from the artery. If he was successful he would continue with surgery, if not then he wont continue. In that latter case, there wouldn't be anything they could do and my husband would only have a few months to live!

He had to depend on the ryle for 2 weeks before they fixed him a gastrostomy as it turned out that he needed it for the following six months.

He was so confused when he was waking up after surgery. He thought he died and they put him in a plastic bag. He tried to get up, which was very dangerous for him so they had to tie him to the bed. This made things worse for him

The pain was so strong. He was using a morphin "cassette" as they called it. It was a device that connected to the port and every time he felt pain he pressed a button and the morphin was injected immediately.

His whole face was swollen. it gradually decreased in size over 2 months.

The following day after surgery, the surgeon asked to meet me. He told me that he was able to remove the cancer and the surgery was a very difficult one. There was a very high chance it will come back.

during the first 2 weeks after the surgery, the outer skin of the flap turned black.

after 5 weeks, he was dismissed from the hospital, with recommendation of close follow up after 1 month. We had to remain in Paris for fear that there would be any further complications

3 weeks after surgery, he had to do another skin graft. This time they took the skin from his thighs. It took his thighs 4 months to heal and left a large scar.