Jaw Cancer Journey: Surgery, Rads, Chemo, & More

2019 was off to a challenging start. My mother, who is 62 and lives in Europe, was very suddenly diagnosed with aggressive and advanced squamous cell carcinoma (SCC) of the lower left mandible with spread to lymph nodes (PT4PN3B in cancer lingo). One day, we are celebrating New Year's Day in Florida, the next week we are looking for the best specialists in Europe to perform tumor resection and fibula free flap reconstruction. Long story short, we ended up in Heidelberg University Hospital and the 8-hour surgery was performed on Feb. 12 2019 by an amazing team of maxillofacial and plastic surgeons. Precisely 6 weeks following the surgery we started on a 6-week Intensity Modulated Radiation Therapy (IMRT) with once-weekly chemotherapy with cisplatin. This forum offers great information for patients and caregivers, so I'd like to contribute to it with another story as it unfolds. I hope it would be of help to those embarking on a similar journey now.

THE SYMPTOMS AND DIAGNOSIS

My mother has had oral Lichen Planus (autoimmune disorder causing ulcers in the mouth) for over 10 years. It went mostly unmanaged, as doctors kept telling her it cannot be cured. In hindsight, it should have been treated, but alas... My mother has never smoked and is otherwise in very good health, so the theory is that the unmanaged lichen evolved into SCC. Her ongoing symptoms of pain, gum disease, etc. masked the developing tumor. In early December 2018, she noticed enlargement of a lymph node on her neck. It did not respond to antibiotics and kept growing, which led to a visit to cancer specialists in early January, who made the diagnosis upon examination. The biopsy results a few days later confirmed the diagnosis. Armed with the biopsy results and a CT scan, we began the search for best possible treatment. Research and fortuitous connections led us to the University Hospital in the German town in Heidelberg. I left my family in the US and prepared to spend the next 3.5 months in another country, navigating a new medical system, and praying I can get by with English as my German is limited to a couple of words.

THE SURGERY

There is much written already about mandibulectomy and fibula free flap reconstruction on this forum and elsewhere. My mother's went by the book, as far as the surgery was concerned, even with the advanced stage and spread of the tumor. She was seen by her maxillofacial surgeon (who is the head of the department) a week prior to surgery. We had sent the CT scans made in her home country ahead of time, so the team already had the full picture (literally). Following the examination, the team ran blood tests, ECG, dental Xrays, and scan of her left foot to confirm the blood supply and ensure they can use the fibula and surrounding tissue. They also took photos of her face from different angles to help with preparation for the surgery. The surgery began prompty at noon and my mom was wheeled out to ICU at 8 pm. She was awake the next morning. The first two weeks of recovery were rough. She had a nasal gastric tube for feeding and a tracheostomy for breathing (lots of swelling in the mouth and neck). Both were supposed to be temporary. The implant did very well - no blood supply issues. However, it is on the larger side due to the extent of cancerous tissue that had to be removed, so it is pushing her tongue back into her throat making breathing harder and eating impossible. We are being assured that transplants shrink significantly over the course of a few months and if you start off with a smaller one, there is a risk that it may end up pulling on other tissues, or even separating. So, long-term we are keeping fingers crossed for great results. Short-term, we are stuck with tracheostomy, PEG (they had to convert the nasal tube to something that can last a few months), and constant drooling. There was another reason to keep the tracheostomy and that was the upcoming radiation, which is expected to bring back swelling in her mouth and neck - the doctors just did not want to take any chances with difficulty breathing during radiation. All in all, my mom spent 4 weeks in hospital, but keep in mind that hospital stays in Europe are generally longer than those in the US. We also needed a bit of time to set up the equipment and supplies needed for the trach and PEG feeding in the apartment we are renting.

In the meantime, the leg is healing nicely. They kept the wound open (no skin graft) for the first weeks to ensure good healing and no infection. We started conversations about a skin graft a couple of weeks ago, but by that time we had to start radiation and my mom decided against the skin graft - she did not want to have one more procedure to deal with. Functionally, there is no issue. Esthetically, she will have an ugly scar on her shin, but oh well. A few days after the surgery, she was given a "boot" for walking, as well as crutches. She never took to the boot - she found it too heavy to even lift her foot and it was pressing on the wound in a very painful way. So, she just used a walker and then the crutches for a couple of weeks. She has been walking without assistance since week 3 post surgery. She limps a tiny bit because she finds that the movement in her ankle is somewhat limited. But there is no pain and we hope physiotherapy will help restore the full range of motion in her ankle.

RADIATION PLANNING

The pathology results following surgery showed the tumor was fully resected (which was a medical miracle given the spread), but with close margins. It also showed extracapsular spread (ECS) on 2 of the 25 resected lymph nodes. So, these results were the queue for the doctors to recommend 6 weeks of IMRT at 60Gy (due to close margins) and 5 doses of once-weekly cisplatin (due to extacapsular spread). We ran this recommendation by a couple of specialists in the US, who fully agreed with the approach. So, the Heidelberg radiology team took over my mom's treatment and prepared the mask and dental splint to protect her remaining teeth on upper jaw. She started daily fluoride treatment a week before start of radiation. In Germany, patients undergoing chemoradiation treatment spend weeks 1, 5, and 6 in hospital. During week 1, doctors monitor treatment, perform blood, ECG and hearing tests, and administer the chemo in the hospital room. Weeks 5 and 6 are expected to be the roughest for patients and they prefer to have them in the ward to help with side effects.

RADIATION AND CHEMO TREATMENT WEEK 1

My mother started her treatment on a Tuesday, exactly 6 weeks post surgery. By then she had healed nicely and had gotten used to the trach and the PEG. She found the mask very tight and uncomfortable and was terrified that she would start caughing while getting her radiation, but by the third treatment she was a pro and handled things nicely. On Thursday evening of that week, they administered the first dose of cisplatin. Had some trouble finding good veins and the first vein ended up rupturing. Thankfully, it was with the hydration solution, not the cisplatin. They switched to another vein for the cisplatin and let me tell you, I was watching every drop go in praying that the vein will hold up. I knew the horrible problems that can happen if cisplatin escaped the vein and got into surrounding tissues. In fact, the doctor told me if that should happen, they will have to take my mom in an ambulance to the surgical clinic. I did not translate that part to her and she was blissfully unaware. But as soon as the cisplatin dose finished, we decided to get a port for the subsequent chemo treatments. She is having that procedure done in time for her next chemo treatment. One of the prep drugs they gave her through IV was anti-nausea and anti-vomit. Well, whatever that drug was, or maybe my mom got really lucky, but she had no side effects from the chemo whatsoever. NONE. I brough her back to the rental apartment the next day. The only medications she has been taking this week is antiacid, stool softener, and twice daily Novalgin drops against mild pain. Overall, week 1 was easy, but we are gearing up for what is in store for us.

We are in the middle of week 2 now and I will post an update next week. Spoiler alert: side effects are slowly ramping up.