Hello everyone,

I am new to the list. My husband was diagnosed with undifferentiated SCC on April 3rd. He had a sore throat that began in January and had been to see our primary care physician 3 different times regarding it. He was put on antibiotics everytime. Then he went to the dentist thinking it was related to his teeth. Finally, I made an appointment with an ENT (took 3 weeks to get in). He immediately found the growth at the base of his tongue, the space in between and just touching the right tonsil, 2cm.. A biopsy and rt. tonsillectomy was done the same week. The Dr. did not remove the growth. During the healing time, Wayne lost about 5 lbs. from the pain of the tonsillectomy. After it healed, we went to the RO and he explained the treatment process, then to the MO for his treatment plan. A PET scan was done and showed trace amount cancer in one right node. No further cancer anywhere...next the PEG, then the portacath and a few teeth removed.
His radiation and chemo began on April 30th. He has had 10 IMRT's at 200 so far, will have a total of 37. He also had his first chemo (cisplatin over 4 hrs. and 5FU over 5 days(, will have one more chemo in 4 weeks. He was mildly nauseaus from the chemo and was given Kytril which worked wonderfully. His main problem has been the metallic taste from the chemo and his saliva glands are drying up. He has maintained his weight so far and is still eating well.

One thing in his favor (or maybe not ) is that I was a certified oncology RN. The RO calls me his coach but, sometimes Wayne I'm sure could find a better term. LOL

The one negative is that everyday, he goes to the MO for the Ethyol SQ injection and then to the RO for the radiation. It is a $50 deductible for each office, every visit. Why in the world it can't be done in the same office is beyond me. I asked and was told that the RO nurses refused to "mess" with it. Oh, well, guess we can't change their system.

I want to say that I am very happy to have found this list. It is a Godsend!

Pam

Hello Pam

Welcome to the Oral Cancer Foundation website. I'm also glad to have found this website and it is a Godsend. You will find it invaluable. Any questions you have, put them in the appropriate forum and fire away. Everyone here are very supportive and caring people.

If you go to the "General Board" forum there are two topics that might help you with this site. One is "To all you newbys", and the other is "How to get the most out of this forum".

I am still baffled by the number of people who take so long to be correctly diagnosed. I do not know why it is not "common knowledge" of all GP and DDS that if any ailment in the oral cavity stays longer than two weeks it should set off all the red flags and bells and whistles and command a vigorous persuit of it's cause!

As far as the RO nurses "refusal to mess with it", you should bring it to the attention of BOTH the RO & MO Doctors. Unless the RO is not qualified to do this procedure I find it ridiculous to have to attend two places. On the other hand, I hate to criticize things I don't know about, but this does seem rediculous. Good Luck in your treatments.

Hey Pam,
Actually, you CAN change the system if you push hard enough and talk to the right people. Find the name and number for the Omsbudman for your insurance, then call them and let them know what is being done to you concerning co-pays. It's crazy what they're doing and someone should be able to help.
Minnie

Pam,

Are you saying that you have to make a $50 co-pay daily at the time of each radiation treatment? I haven't heard of that one before if that's the case.

welcome if there is anything i can do just give me a ring

Hi Pam,

Welcome and we also ran into a separate copay for the ethyol injections which were done in the chemo room and the daily radiation, which was done in another part of the same hospital. Every place seems to have different policies on whether they will allow the RO nurses to give it due to the monitoring of BP involved.

In the end we only had to pay a single copay for each day rather than the double because they billed it as outpatient encounters and our insurance company went along with that...on that particular issue. In other situations we had to pay the copay for every service.

We have some things in common, I had a hospice nursing background and I'm still not sure if that was positive or negative. You've seen too many things both ways. It absolutely does not prepare you to be a caregiver to your husband. It did however, make doing the IV hydration on the evenings that Jack had chemo a lot easier to arrange because they knew I would do it.

That's great that he's still eating well, even if he uses the PEG have him keep swallowing. That made a big difference in recovery for Jack. It does get better.

Hang in there,
Regards JoAnne

Welcome Pam [and by the way, many of the caregivers here wish we had your training, altho I'm sure it puts you in a tough position at times. I'm with Minnie, I would talk to his Docs face to face and let them know that these seperate deducts are straining your finances big time and you need help in dealing with it.Hope you both continue to get along well . Amy in the Ozarks

Pam,

I would like to address a point you mentioned in an earlier post under a different thread. You mentioned that everyone seems to think your husband was a prior smoker simply because of a Dx of an oral cancer. In reading your posts I get the impression that he has Base of Tongue cancer? I have/had Base of Tongue also but was a former smoker. My ENT told me early on that statistics show that 8% of Base of Tongue patients have never at anytime used tobacco products.

Bill D.

Thanks, everyone for the warm welcome.

I am surprised at the number of physicians that are unaware of the statistics regarding smokers / non-smokers with this cancer. Thanks, Bill for the info.

I agree with you, Petey. We were very upset to learn about the growth, especially considering that he went to our primary 3 different times. On the 2nd visit, he should have recommended a ENT. In fact, he never did, I called and asked for the name of one and made the appointment because I couldn't understand a sore throat lasting 8 weeks.