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| Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | This is a topic that is very patient-doctor specific. There are doctors who prefer to not divulge too much detail while others offer more. Doctors are far more scientist than therapist so it is not surprise they do not ooze empathy.
Then there is the patient, covering the spectrum from bag on head to full face at the fire. Some really are so scared they have zero interest in knowing what is going on and really do not want to know any of the details. Then there are those (like me) who got as much education as fast as possible and went to every meeting with a list full of questions.
As to post treatment issues, many of the staff who see you through treatment just do not follow you along afterwards. And those that do are mostly trained to get you through treatment.
Finding professionals who specialize in post treatment issues is a challenge. I am just now 3 years post and still see both my MO and ENT. Fortunately, my only post treatment symptom is the typical tight neck muscles where the radiation was targeted. Neither really offer any specific recommendation - just a nod acknowledging they've heard it before.
Dental issues is something you definitively need to advocate for yourself. The main thing is to ask if the dentist or oral surgeon has treated a fair number of oral cancer patients who were radiated. From what I've seen here those who were treated with surgery only or chemo but no rads generally don't have post tx dental issues.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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