Hello, friends -

It's been a while since I posted. I'm 9 years out after treatment (surgery, radiation, chemo) and feeling fantastic. No issues here. However, a good friend of mine was just diagnosed with BOT (SCC) and is already experiencing swallowing and speech problems. She has found an oncology team in Boston, thank goodness, and has been told she will be getting 7 weeks of radiation and chemo (with a feeding tube, to be placed soon). I've spent a few hours with her to help her through this scary pre-treatment time, and I have told her about this forum. At the moment, I think she's too overwhelmed to do anything except worry.

There are things I know and things I DON'T know about oral cancer (I had palate cancer, not BOT), so I'm here to find some help with the stuff I don't know. My own cancer experience was different from what hers will be -- I had no PEG and no PORT, so I can't speak to those. She's VERY worried about her prognosis (last text was something about 1-year survival rate, but it wasn't clear...) and, frankly, about the whole thing. She is feeling very much alone (hence my telling her about all of you!). I'm going to be helping her as she goes into treatment, and she has a couple of friends who can fly into Boston to help her out during her 7 weeks of treatment. She will return here to stay with another friend who lives near me during recuperation, as she lives in the south and cannot go back -- uncertain of timeline.

What should I tell her as far as reaching out on this forum goes? I don't know what stage cancer she has -- will find out tomorrow, when I have some time with her. I know that makes a huge difference in what lies ahead. In the meantime, though, I am hoping she can get some modicum of reassurance or at least a sense that there are many others who are or have been in her shoes! I'm wondering about the PEG, PORT, and nutrition in general. I don't think any of us can give her more specifics until we know the stage, but maybe some of you with BOT can tell me more that I can pass on to her. I am hoping that eventually she will join the forum and find some comfort and friends here. I did during my treatment (and before and after!), so I know she will, too.

Thanks, all. I'm praying and supporting her as best I can. Any thoughts or suggestions would be greatly appreciated!

-Chris

Chrissy,

Has your friend been diagnosed with base of tongue cancer and NOT cancer at the base of the oral tongue? I ask because there has been some confusion in posts about that. Base of tongue is way back, in the throat and is not really visible. If that’s what she has, she might want to find out it is HPV-related. The treatment won’t be different, but my understanding is that HPV related SCC responds better to treatment.

Having a feeding tube, in my opinion, is a good move. Rads will impact swallowing about halfway through. My husband couldn’t even swallow a sip of coffee when the pain set in. A PORT is probably not necessary at this point. If she is getting chemo, it may be the three big bags (so, only 3 times) or she might get weekly, smaller doses. It’s manageable without a PORT unless she is scared of needles.

Once you find out about the treatment plan, you might want to consider if she will need a humidifier to help combat the dry mouth, a Waterpik to get rid of the gunk when the saliva thickens as a result of radiation and skin cream (this one is a MUST).

The hospital will probably arrange for a dental exam before radiation starts, as well as a hearing test (if the chemo is going to be platinum-based), a mask for the radiation treatments. They will probably give her advice about what kind of skin cream to use.

She will need to be driven to and from radiation because the fatigue is overwhelming after a while. So, getting that sorted out now is helpful.

Please let us know what other questions you may have. We are here to help. It is a tough treatment but it is doable.

Im so very sorry to read about your friend! Receiving an oral cancer (OC) diagnosis is the last thing any of us want for anyone close to us. Your friend is very lucky to have you helping her!!!

The following link has hours of reading that will help your friend to learn more about her illness. There are all kinds of important topics covered .... diagnosis, treatments, nutrition, etc. Im sure your friend will better understand what she is facing after reading some of the topics in the link. As you know theres a million and one little things patients pick up as they go thru diagnosis, treatments and recovery phases. We all know a bit of info that when shared usually is enough to give other inquiring members a much better understanding of OC, treatments and/or recovery issues. For example, I have picked up way more feeding tube info than I ever thought I needed to know.

Main OCF Site, Understanding section

I hope your friend will decide to join our forum. Her identity is protected as all of our members respect everyones confidentiality. We only know what she will decide to tell us. It sounds like your friend will depend on many others to help her get thru whatever she is facing. Besides our forum, I suggest your friend call the American Cancer Society (available 24/7/365) and ask about their patient/driver program. Transportation back and forth for treatments and appointments is usually something most patients can not do themselves. There are many survivors and caregivers across the US who volunteer their time and vehicles to help others get to their appointments. I have used this and greatly enjoyed meeting survivors who really did understand what it was like going thru cancer and its treatments. Its nice to be able to talk freely with someone who you have a common bond with. I only used their service a couple times but was so impressed at the kindness of strangers that I became a volunteer driver myself and occasionally driver someone who needs a ride. The driver program can take a few weeks to set up so its best to call right away and get her paperwork started. The ACS also gives patients a voucher of up to $300 either to help cover their medication costs, a wig, transportation costs , or a combo of whichever the patient chooses.

Anyone who offers your friend help should be added to a list of peoples names and full contact info. Tell the generous helpers when the time comes you will let them know what they can do to help. Being that your friend will be away from home, there are things in both locations that will need attention so I suggest starting 2 lists of helpers. If she owns a home she would need someone to upkeep her yard, check the house, if she is leaving her vehicle home periodically start her car, etc. For where she will be staying, she will need prescriptions picked up from the pharmacy, positive activities like getting a manicure or pedicure, going to get her hair done, an occasional dinner out, etc are all things that can help your friend to stay positive and also give her a little boost. As your friend goes the treatments, the little things I mentioned can become big things that your friend will look forward to and give her a sense of normalcy.

At her treatment center your friend should ask what other services are available to patients. There may be counseling, nutrition sessions, patient/survivor groups, etc. When meeting with different doctors, she needs to ask as there are far too many other medical things doctors cover often forgetting to mention other things that help patients besides conventional medical treatments. Some facilities also have financial aid if thats something she may need info on. But she must ask herself or likely will not know about these other things. They may also have a wall of brochures available and the facilities website should mention other helpful things available.

Her intake is one of the most important things in having your friend successfully get thru the treatments and recovery phases. As you know, I can be a bit of a nag about intake but Im always doing it for the patients own good. I fell into a viscous downward spiral where I suffered so much more than I should have if I put more attention on my intake. I nag others so they can avoid the pitfalls I suffered thru. Intake is one of the things patients tend to view as significantly less important than it is. Your friend needs to begin immediately watching her intake. She should start eating all her favorite foods, desserts too without being concerned about putting on a few pounds. If your friend is on the average or slim side adding a few pounds prior to any treatment would be a very good idea. Every single day from right now thru at the very least your friend hits her one year anniversary of finishing all her treatments she need to take in a bare minimum of 2500 calories and 48-64 oz of water daily. If the patient is taking in 2500 calories and 48-64 oz of water every day and they are losing weight, their intake needs to be higher. Taking in 3000 calories or even more during their cancer battle sounds like a huge amount but its not to a cancer patient whose body is working overtime trying to fight the cancer and rebuild itself. No skimping and thinking tomorrow is another day, tomorrow they'll do better... tomorrow never comes and it becomes a game of playing catch up where its impossible to catch up. Intake, following doctors orders, and managing pain are all the key things necessary to getting thru everything that is coming up, regardless of what treatment plan the patient has.

Hopefully your friend will join our group and we can help get her thru whatever she may be facing. Its best to interact directly with the patient and/or their caregiver so they can freely post their concerns and we can help as well as any additional questions that arise with the natural flow of conversation. Theres really nothing special to tell your friend before she joins OCF. Any stage or cancer technical info are things that can get discovered after joining. Those things will help us to better help her. The further along she goes with her diagnosis and treatment plan being created the more info she will have and learn about. We're like a huge long lost family around here. Best wishes to your friend and all those great people she has helping her to get thru her battle.

Thank you, Gloria and Christine, for your thorough and thoughtful responses! I spoke with my friend on the phone earlier, and she said her head is positively swimming with questions, worries, and concerns about how she (SHE) is going to get everything arranged, e.g. helpers, drivers. I assured her that we, her friends, are going to do everything that is within our grasp, and that her job at this time is to let us help her and to start the journey toward healing. (She hasn't started treatment yet, as I think I said in my first post, but the journey for me, anyway, started right after diagnosis!)

Some info I forgot to put in my first post: She is HPV+ and has been told that that's a "good" thing (oh, and yes, it's BOT at the throat level. She's already having some trouble swallowing and speaking). She's also a diabetic (adult-onset, I believe), and so there will be special nutritional needs now as well as during and after treatment. Her medical team will certainly address that.

I'm going to share with her just how wonderful this Forum is -- it was and is a special sort of family for me, and it could be for her, too. If she could connect with a few of you who have BOT and HPV+ experience, I think she would find some relief and comfort and community. That is so very important when you feel like no one around you really understands what's happening to you (and you don't understand it, either! Totally disconcerting!).

Thanks again for your responses. I appreciate everything you offered up, and I'll be sure to start doing things that I can do, like getting lists of people together to help both at her home and at her treatment location. You all are the best!!

If someone can go with her to doctor appts and take notes and/or record what the doctor says is very helpful. I had my husband and/or my sister go with me to ask questions and record the doctors. I found this helpful because, of course, your head is swimming and you might not get all the information. My nurse recommended Miaderm for the skin as well as Aquaphor. Miaderm is made locally to me but can be purchased on Amazon. It worked well and I am still using it. The Aquaphor was great towards the end when the burn got really bad. Make sure she knows to ask for pain medication during rads as soon as she needs it, as well as lidocaine or Magic Mouthwash so she can drink something. Hopefully she will join us so we can give her love and encouragement!