Just Diagnosed

On May 12th I went to the dentist and she found a large lesion on my soft palate.  On the 13th I was with an oral surgeon who found a second one in the same area and a third one on my cheek.  On the 15th I was getting a pre-op physical and on the 19th I had surgery to remove the three lesions.  The lesions on my soft palate were found to be cancerous and the one on my cheek was not. 

I had a CAT scan and it showed that I looked clean but my surgeon said that I'd need radiation treatments as a precaution.  She had spoken to an Oncologist and made an appointment for me but I felt almost as if I didn't have cancer and thought (I'm apparently very naive) that I'd go once a week for 5 or 6 weeks for 15 or 20 minutes and be done with it.

I went to the appointment feeling really good about things but that good feeling was short lived.  The next thing I know is that I will have 28 to 35 radiation treatments 5 days a week and will be on the table for 30 to 60 minutes and will be held still by that mesh form that they make that covers your shoulders and head that's in turn attached to the table so you don't move.  They're going to irradiate both sides of my head in the cheek area back to my ears and both sides of my neck.

I was told that while the doctor's and technicians will do everything that they can, I'll lose the two primary salivary glands that are toward the back of my jaw.  The result of this will be permanent dry mouth and the probable permanent loss of 75% of my ability to taste.  I'll have dryness of the skin on my cheeks and neck and could have skin discoloration which could range from going tan to blistering.  I can expect a sore throat which will last for several weeks after treatment.  I asked about the sore throat and they said it would be a little more sore than it was then which was 6 days after surgery and I had 50 or 60 stitches in.  I explained that my throat wasn't sore, it hurt.  I was very nicely told that I would be a little more uncomfortable than I was. 

On Tuesday I go in and they make the form that holds me to the table, do a second CAT scan to get the information they need to set the machine up for the radiation treatments and then they're doing a PET scan.  After they do the PET scan they'll determine for sure whether I need chemo along with the radiation (they seemed to be leaning in that direction).  My treatments will begin sometime around June 9th.

When I walked out of that appointment (various people spent 2 hours with me) I was mentally and emotionaly drained.   I wan't anticipating what I'm now looking at as a life changing experience.

I'm 54 years old and am wondering about what others have gone through and what side effects they experienced.

 Thank you for taking the time to read this.

sorry to read of your diagnosis...my s.o. was diagnosed Oct. 2007 and finished his treatment 1 month ago.  his cancer presented itself as two tumors in his neck...he has an unknown primary which means they never found its source...which means more radiation in a larger area than if they knew where to aim it.  he had 9 weeks of chemo followed by 35 radiation treatments along with weekly chemo.  it is a tough treatment to endure...and a long slow recovery after. 

check again with your radiation doctor about the time frame of being in the mask...it was over fairly quickly for my guy and he had an extensive area being treated - i think it was only about 15 minutes in the mask...maybe not even that long...but everyones protocol is different.

he also had a PEG tube put in (feeding tube) it helped him stay nourished and well hydrated...he didnt want it but know feels he couldn't have done it without.  eating becomes extremely difficult and exhausting.  he is still using the PEG for all his nutrition but never stopped drinking water or swallowing pills.

while you wait for treatment to begin and until eating gets difficult i say PIG OUT on everything you like!!!  even with the feeding tube my guy lost about 18 pounds..some of that was extra weight he put on waiting to begin treatment.  he was thin to begin so couldnt afford to lose much.

just keep telling yourself that this is a very curable cancer...the toughest treatment...but it is CURABLE!

hang in there, i hope you have lots of support and this is a great place to put your anxieties in writing, get advice and extra support from folks who have been there.

~meesh

Bill,

     I am sorry to hear that you have been diagnosed with cancer.

     You will be doing the similiar treatment as I went through several years ago. The mask and Radiation, I did not have to do Chemo. I did 30 Radiation treatments. The Doctors have to give you the worst of what to expect. You may or may not have the same results as the next person.

      I was told that I might have a feeding tube for the rest of my life. Did not happen. My taste has come back to about 80 %. My dry mouth hasn't recovered, except when I chew come, others, have theirs back. Think positive about this.

      You are correct, this is a life changing event, but you will continue on, may have to change a few things later on after treatment. The recovery period does take up allot of energy and will power.

      I have only found this board, so, I wasn't able to ask allot of questions here. There are allot of people here that will be able to help you with your questions, so ask away.

      I was diagnosed at the age of 57, I'm almost 61 now.

      My Best to everyone here 

 

On 5/25/2008 BillSea wrote:

On May 12th I went to the dentist and she found a large lesion on my soft palate.  On the 13th I was with an oral surgeon who found a second one in the same area and a third one on my cheek.  On the 15th I was getting a pre-op physical and on the 19th I had surgery to remove the three lesions.  The lesions on my soft palate were found to be cancerous and the one on my cheek was not. 

I had a CAT scan and it showed that I looked clean but my surgeon said that I'd need radiation treatments as a precaution.  She had spoken to an Oncologist and made an appointment for me but I felt almost as if I didn't have cancer and thought (I'm apparently very naive) that I'd go once a week for 5 or 6 weeks for 15 or 20 minutes and be done with it.

I went to the appointment feeling really good about things but that good feeling was short lived.  The next thing I know is that I will have 28 to 35 radiation treatments 5 days a week and will be on the table for 30 to 60 minutes and will be held still by that mesh form that they make that covers your shoulders and head that's in turn attached to the table so you don't move.  They're going to irradiate both sides of my head in the cheek area back to my ears and both sides of my neck.

I was told that while the doctor's and technicians will do everything that they can, I'll lose the two primary salivary glands that are toward the back of my jaw.  The result of this will be permanent dry mouth and the probable permanent loss of 75% of my ability to taste.  I'll have dryness of the skin on my cheeks and neck and could have skin discoloration which could range from going tan to blistering.  I can expect a sore throat which will last for several weeks after treatment.  I asked about the sore throat and they said it would be a little more sore than it was then which was 6 days after surgery and I had 50 or 60 stitches in.  I explained that my throat wasn't sore, it hurt.  I was very nicely told that I would be a little more uncomfortable than I was. 

On Tuesday I go in and they make the form that holds me to the table, do a second CAT scan to get the information they need to set the machine up for the radiation treatments and then they're doing a PET scan.  After they do the PET scan they'll determine for sure whether I need chemo along with the radiation (they seemed to be leaning in that direction).  My treatments will begin sometime around June 9th.

When I walked out of that appointment (various people spent 2 hours with me) I was mentally and emotionaly drained.   I wan't anticipating what I'm now looking at as a life changing experience.

I'm 54 years old and am wondering about what others have gone through and what side effects they experienced.

 Thank you for taking the time to read this.

Bill,

I am very sorry to hear about your diagnosis. This is a life altering event...but generally is very curable. My husband was diagnosed with tonsil cancer with mets to two lymph nodes in April. He has completed week 3 of 6-8 week treatment with weekly doses of Cisplatin (Chemo) for 6-8 weeks and 5 days a week of IMRT radiation. The radiation is daily for the first 18 days then goes to twice daily for 12 doses. The length of time he is on the table for radiation is 15 minutes and receives 62 "blasts'' ---my husband counts them. He also wears a mask with a custom molded pillow under his head. Pain management has been reasonable(3-5 on a 1-10 pain score). He did have one rough day last week, he woke up with 6-7 new mouth blisters and a terrible case of thrush. The docs got him started on a low dose,long acting morphine pill, Diflucan antibiotic, and topical steroid ointment. He was much better within 24 hours. Presently, the chemo is kicking his butt down into a 50-60 hour sleep. I wake him up during normal wake hours every two hours for food and drink, but otherwise he sleeps--"total fatique". Last week he started  battling dehydration with daily IV fluid infusion --2 Liters over two hours. So, next week due to the dehydration and 9 pound weight loss he is getting a gastric tube inserted.

Larry is facing the  most difficult time in his treatment. As his rad/onc doc says,"he will hit the wall". We are just taking one day at a time. It is no picnic, but as many of the writers on this web site say "it's doable".

Hang in there--we are all here to share and compare stories, treatment experiences, suggestions, and cheers of success or words of support.

I do recommend that you go back and read all of the entries of this web site. It helps to know generally what to expect!

Hugs to you,

DeniseB

Hi, Bill. Sorry to hear about your diagnosis. It's a very sobering experience, being told you have cancer, seemingly out of the blue like that. My  trip down that road started last June with a sore throat that I thought was allergies. I finally went to an MD who referred me to an ENT, who made the diagnosis of tonsillar cancer, stage 4a.

I had 3 rounds of chemo (cisplatin, nasty stuff) and 7 weeks of radiation, with that lovely mesh mask you get. I lost most of my saliva and sense of taste from that, but, 7 months out of treatment, I am doing well. I have regained quite a bit of my taste ( some things I still cant taste, like lean meats and red wine) and getting some saliva with Salagen.

I did have a feeding tube for a while, and I hated it, but it was a lifesaver, so if they want you to have one, get it.

This type of cancer is very treatable, and it sounds like yours was caught in plenty of time. There are side effects, but they can be dealt with. Aquafor lotion for radiation burns on your neck, Biotene toothpaste and mouthwash and Salagen for drymouth. You'll have to experiment with foods when you start to lose your tase, everyone is different. BUT, you'll always find answers and support here.

Besty wishes, and good luck with your treatments,

Mike

Apparently, radiation also causes a lack of ability to proofread. ;-)

Best Wishes,

Mike

Bill, Greetings. Read your post amigo- I feel for you and I wanted to share my experience. I am sorry to hear your diagnosis but I want to tell you to get ready to fight. I have a blog that details my cancer fight and a link for you to check out my actual radiation mask. Just finished radiation last Tuesday and they let me take it home as a war souvenir. To see photos and read my article follow this link: http://www.psiplex.com/index.php?categories=Radiation%20Ther Here is my background: Male diagnosed with stage 4 SCC of the tongue and right lymph node in December, 2007. Had Fu5, Taxotere and Cysplatin for 3 treatments (taken off 5FU as it mimicked a heart attack) and Carboplatin for the last 4 treatments through chest port. Just finished 6 weeks(30 straight days)of radiation and finished 14 more "Booster" treatments of reduced radation/reduced field treatments. Underwent surgery for right radial neck dissection which removed the lymph nodes which had contained the cancer. Currently dealing with massive phlegm/mucositis buildup, dry mouth, dry hacking cough, 1st degree burns on neck now healing nicely and scratchy, dry, tickly throat that feels tight and makes it hard to swallow or drink. PEG tube feedings keep nutrients in my body. Just today noticed a bit of lessening of the choking. Each day it will get better. E-mail or contact me through the blog- I will be happy to detail anything you have questions about. Throughout this ordeal, I have lived by my phrase " Face it. Fight it. Survive it." You can do it Bill! The Fight is Within. One Love

Hi,

  I am so sorry to hear of your diagnosis.  My husband just finished treatment for maxillary sinus cancer (SNUC)-very rare, but went through much of the same treatment you have described- 39 radiation treatments and 3 rounds of chemo- 5FU and Cisplatin-these were given every 3 weeks and the radiation was 5 days a week with a 10 day break because he became so weak and dehydrated.

  He also had the mask- very frightening when it was made, but he made it through the treatments- often took Zofran for nausea prior to the treatment and something for pain- Vicodin or Morphine.  His treatments were 7 areas for 1 minute each.  He counted the light as it moved around him.

 Mouth sores and difficulty eating were a problem along with a LOT of mucus production.  Miracle mouthwash and Ulcer Ease mouth rinse helped a lot- especially the Ulcer Ease.  We went through bottles of it.  We bought it at Walgreens.  Crushed ice like from a snowcone maker was something he ate lots of too just because of the bad taste everything had- even water.

  He also had a PEG/PEJ tube inserted and was fed through PEJ portion, because of the nausea.  Initially the feedings were 15hrs. a day, now down to 8hrs.  We run it overnight so he is not tied down to the tube during the day. 

One other thing I would recommend- be sure to stay hydrated.  My husband ended up going for IV fluids 3 days a week-Mon, Wed, Fri. for several weeks until he was able to drink enough water himself.  Without the IV fluids he became very lightheaded and almost passed out several times.  The IV fluids helped a lot- but they will make you "pee like a race horse :-)"

He is now 5 weeks out and the mucus problem is pretty much gone.  Appetite is coming back- he has found watermelon to be easy to eat- slides down easily since his mouth is still pretty sore.  Again spicy foods and acidy food such as tomato/spaghetti sauces hurt, but he sometimes does eat them- just pays for it later!  Bottled water will be your best friend as well.  He always carries several bottles with him due to the dry mouth.

We are still in such a learning phase ourselves yet, that I am sorry I can't be more helpful, but hang in there-these message boards are great support and can really give you a lot of information-from people who have gone through this themselves.

Kathy