Rosemary:

I echo Brian's eloquent remarks above. Every minute counts in late stage cancers with nodal involvement, especially when there more than one involved. Think of it as an equation...for every node involved the urgency factor goes up as does the speed of information gathering (this part is awful!) and the number of options to explore. In a weird way, clients with Stage 1 and Stage 4 cancers have more direct options (such as adding chemo) than those is Stage 2-3 where the "gray zone" looms large and rampant debates ensue over amount and type of radiation and the value of chemo.Thsi is partly why you are hearing our take about being assertive and getting as many opinions as you need to feel comfortable with your treatment choices.

I share your sense of being overwhelmed-Dave and I are both nurse practitioners and we feel consistently overwhelmed. But, Brian is on the money-you love Heather and if you can help co-pilot the bus she is driving toward wellness you will be offering her the best you can as someone who has cared for her well being since infancy.

I think it is good that your pursued the heme/onc route. I strongly endorse asking for adjuvant chemo and if not, ask for solid rationales as to why not. Heather does seem to be a solid candidate for Cisplatin and her previous good health and age support her tolerance of what will surely be a tough regime.

As for the dental trays, Dave went for his exam and impressions and received the trays within a week.Don't let that hold up starting treatment. The key question to ask the dentist is also if he/she is comfortable following Heather during the course of the treatments when some expediency might be required if she develops a dental issue during treatments. We found that having a dentist (just like an ENT ) who is well versed in oral cancer diagnosis and treatment protocals is essential to the process.You also haven't shared what kind of surgical procedure Heather actually had but make sure the dentist is comfortable navigating the landscape of her post-surgical mouth. ASK! ASK ! ASK!

I'm thinking it might also be helpful if you give us a bit of background about Heather's diagnosis and her surgical course. Do you have one MD who is is charge of coordinating care?

Another thought- ask to meet with a radiation oncology nurse and/or an oncology nurse practitioner who specializes in pain control during treatment. He/she can also address the psychosocial side of living with cancer as a young adult and help her stay emotionally afloat during the treatment process.

Many nurses also do therapeutic touch and massage therapy which is helpful both physically to reduce neck swelling but psychologically.

Hang in there...we'll help you through it,

Kim