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Joined: Sep 2018
Posts: 6
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Joined: Sep 2018
Posts: 6
Hello everyone,
My name is Susan. My Mom, who is 65 years old, was diagnosed with Stage 4 squamous cell carcinoma of the tongue in July 2018. The cancer invaded 90 percent of her jawline and also involved two lymph nodes in the neck. ENT doctor started with 2 rounds of chemo, then she had surgery on September 10 to remove the cancer, jaw reconstruction, and the two lymph nodes. During surgery she had a tracheostomy and the cancer doctor said she could be with it for a few months. She was recently moved to a specialized facility to help her wean off the ventilator. She's not completely on the ventilator, but needs support from it, otherwise her respiration is too high. Timetables have shifted with the weaning (went from 3 to 6 weeks). The cancer doctor wants to start radiation 6-8 weeks from the date of surgery. I'm just concerned if she's not off the vent, this could complicate matters. Surgically, she is healing very well, tongue has good pulse and color, jaw looks great, but she is experiencing a lot of anxiety and spikes in blood pressure. She was somewhat sedated in ICU for several days after surgery, but this new facility is approaching the anxiety and increased respiration from a pain standpoint. They removed bone from the fibula in the left leg for the jaw. According to doctors, this would be more painful than having part of her tongue removed and jaw reconstructed. I'm just worried that her history of COPD will prevent her from getting off the ventilator and what this means for her future.

I was referred to this board by someone I met on Facebook. He is an oral cancer survivor and said this would be a great place for advice and support. I'm all new to this and while I try to stay positive, seeing her struggle like this is very difficult. I can't imagine what she's going through.

Thank you for reading. I look forward to learning your stories.

Many blessings, Susan


Daughter of 65 year old with SCC of tongue and jaw
T4N2M0 - diagnosed July 5, 2018
2 rounds chemo with Cisplatin, Taxotere, fluorouracil - August 2018
Partial glossectomy, mandibulectomy with fibula free flap - September 10, 2018
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Susan, welcome to our family. It sounds as though your mother is going through an enormous ordeal. It's wonderful that she has a daughter like you to take care of her. I'll leave the advice for the people who have been through that particular treatment.

We're all with you and your mom.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18

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