Posted By: Gracie mars Waiting for official diagnosis - 08-01-2014 10:39 AM
My husband of 32 years got his CT scan report on his "my chart" site last Saturday. Large mass on BOT and many large lymph nodes. Likely SCC. PET scan Monday, MO Wednesday, biopsy Thursday, head & neck cancer specialty clinic the following week. Lost 55 pounds in the past year. The first 30 were on purpose after doctor told him he had to lose it due to pre-diabetes. Unintentional 25 pounds over the past few months due to gerd/reflux and sore throat. Went from a big & tall to a string bean. Met with dietician for the weight loss and the appointment just happened to be right after the CT report came in. She advised 2500 calories & 80 grams protein a day. Drinking milk, ensure, boost and instant breakfast to supplement what he can actually eat. Really suffering from reflux and choking when he swallows. Anticipating chemo, radiation. Trying to get things in order at home, since we expect he will feel worse before he feels better. It's emotional, but we are coping ok so far. Trying not to think too far ahead, but want to be as prepared as possible for what we might face. Going out today to buy a big comfy recliner.

Any hints about getting in the calories & protein on a gerd diet (low fat, no chocolate or tomato)?
Posted By: OzMojo Re: Waiting for official diagnosis - 08-01-2014 11:34 AM
Welcome of OCF Gracie. The specialty clinic will set the tone for the next few months. They have three options, radiotherapy, chemotherapy and surgery. It depends on the case but HPV P16 +ve SCCs respond really well to radiation, so thats often the first choice, backed up by chemo. They will make an assessment based on a range of factors specific to your husband's case. There may be some dental work required too, but they'll let you know what you need to do.

In the meantime you have a roller coaster of things going through your minds to worry about. That is completely normal and if necessary you can see a psychologist for some coping tools during the waiting process. It sounds like you're doing the right thing and not think too far ahead.

Its not a time for a holiday, but do what you can to relax and in particular eat well. Eat as well as you can (both of you). Lots of proteins, fresh vegetables and juices. Lots of fluids, keep the bowels going, avoid people with colds and flus, a bit of exercise, just generally do what you can to be as healthy as possible to face whatever comes next. Normally we would say bulk up as much as you can because he will lose weight later. Given his other issues I'd stick with what the dietitian advice. That may change after an SCC diagnosis, but they are the experts. 2500 is good calorie number, you'll hear that many times.

Be careful with what you Google and get from the internet, including here. You can scare yourself silly very easily, and not every headache is a brain tumour! What the internet is useful for is to help you understand the flood of information you need to absorb. I find it best to use the internet to understand what a doctor has already told me, or to frame questions to ask him. Keep a noteboook and take it to every appointment. Jot down questions, appointment times, medication instructions etc.

Every cancer journey is different, but you'll find most of us have driven over the same bumps. We'll be here to support you both. Best wishes for the diagnosis.
Posted By: ChristineB Re: Waiting for official diagnosis - 08-01-2014 11:59 AM
Welcome to OCF. Im very sorry to read about your husbands diagnosis of not just SCC but GERD as well.

Im a little surprised a feeding tube has not been suggested by the dietician. The calories they suggested is the minimum daily needs. Boost makes a very high calorie (VHC) drink that can be ordered thru the Amazon link on the upper right of this page. Most pharmacies can get it as well but they wont always do the special order for their customers. Boost VHC has 560 calories per 8 oz which makes it much less to drink to hit the daily minimum numbers. I do not know how this product works for GERD patients but it is similar to the other nutritional drinks you will find over the counter. Watch water intake as well, shoot for 48-64 oz per day.

If you havent already scheduled a dental appointment make one right away. Treatments will likely include surgery, with radiation and possibly chemo. Your husband will want to have his teeth thoroughly checked and in tip top condition as well as flouride trays made. He will also need a complete blood work up with thyroid and testosterone levels checked prior to any treatments.

Please feel free to ask questions. There isnt much we havent seen on this forum.

Best wishes!!!
Posted By: davidcpa Re: Waiting for official diagnosis - 08-01-2014 12:13 PM
Assuming it's SCC:

Must have cancer cells tested for HPV.

Do get Boost VHC.

More after confirmation.
Posted By: PaulB Re: Waiting for official diagnosis - 08-01-2014 12:38 PM
Good luck with the biopsy results. Only that can prove it's cancer 100%. As David says, if SCC, ask that the biopsy sample be tested for HPV-16, 18, even if they say it's p16 positive, which is indicative that it probably is, but not always.

A recliner sounds nice. I'm glued to mine drinking coffee.

Good luck
Posted By: Gracie mars Re: Waiting for official diagnosis - 08-02-2014 01:18 AM
Thank you for your kind and thoughtful messages. I am so grateful this forum is here. Good information on so many topics, and the most amazing people. Thanks again for reaching out with help and support. It is such a comfort to me to know I can count on the folks here when I need them. Also, a little surprising how a few messages from total strangers would give me such a lift! Seriously, a big bright spot during an otherwise dark time.
Posted By: BillF57 Re: Waiting for official diagnosis - 08-05-2014 08:28 PM
My wife made me milk shakes with Boost to increase calories - Strawberry was my favorite. After radiation treatments to the neck, swallowing was most difficult. I credit Cocoa Wheats hot cereal for saving my life post surgery/chemo/radiation. Angel hair pasta cut up in small pieces was also a great food for me, as my mouth could not open very wide.
Posted By: Gracie mars Re: Waiting for official diagnosis - 08-09-2014 03:46 AM
He had the biopsy yesterday and should have results by Monday. PET scan showed no widespread disease, just the large mass at BOT and two Lymph nodes nearby. We see a specialist for a second opinion next week at a nearby academic medical center with a head and neck cancer clinic. Oncologist at the community hospital says pretty much what I expected after reading these forums... cisplatin and radiation, with peg tube and mediport placed prior to treatment. Also prescribed a new medication for the GERD/reflux. It seems to be helping, which is a big relief.

Thanks to the advice I got here, he has a dental appointment next week. Unfortunately, he is overdue for routine cleaning, so might be playing catch up with that. I will have him ask about fluoride trays. It sounds like the radiation oncologist will determine if any teeth will be in the path of the radiation beams, and those would have to go.

Any advice about choosing where to have the treatment? There is a nearby (30 minute drive) medical center with a cancer center, IMRT, accredited by the American College of Radiology and has Commission on Cancer approval. A longer drive, over an hour, is the academic medical center with a head and neck cancer clinic. Sounds like it might be possible to get some things like chemo infusions and labs done at a local community hospital and travel for radiation. Seems like a complicated decision, and I tend to overthink things.

Posted By: Cheryld Re: Waiting for official diagnosis - 08-11-2014 01:27 PM
I would go where the specialists are. You are looking for a CCC (comprehensive cancer center.) there is help with driving if you need it most places have a volunteer group to help with transportation or a hope lodge to stay at during the week. smile hugs
Posted By: PaulB Re: Waiting for official diagnosis - 08-12-2014 12:12 PM
There is a Hope Lodge in Marshfield, Wisconsin near St. Joseph Ministry Hospital. You can also go to any city in the U.S., depending on insurance, finances, stay at Hope Lodge for free, availability permitting, and have treatment there. I stayed at Hope Lodge in NYC during one of my treatments, and was a great place.

There is also "Joe's House" that have discount lodging, and ACS, instead of Hope Lodges, have a program, forget the name, to stay in certain hotels.

I didn't get too much help with travel with the American Cancer Society my last treatment being I was going interstate, although only 32 miles away, so no volunteer drivers were going my way, and ACS apparently doesn't give any money for gas, transportation in all areas, so I had to hire someone myself, and pay out of pocket.

I did Proton Radiation one place, that's all they do, and chemo locally. Both can be done separately, but I wouldn't recommend it. You would have to coordinate, update, get copies of too many things yourself, not mentioning timing. When you go to radiation you'll be at the center anyway, and chemo is usually given immediately before or after, so you be there anyway, and just makes everything more convienant.

Another option is to have all your chemo, radiation treatment planning done at a top CCC, and do what they propose, locally, if both centers are in agreement to do so, but I would rather stay where the experts are.

Good luck with the biopsy, and hopefully no treatmnt will be needed!
Posted By: neversmoke Re: Waiting for official diagnosis - 08-19-2014 07:11 PM
hi...m sorry to hear this from you. Wish you all the best with future follow ups...
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