falling apart, stage 4/ aggressive treatment radiation and chemo for 6 weeks

Hi Betty,

Very sorry to hear about your experience with oral cancer. Your anxiety from what you have been through so far is totally normal. Getting run around and delayed to be referred to a cancer center must have been so frustrating. It is a big milestone to now being cared for by professionals at a cancer center.  It is horrible to learn the cancer is beyond the tonsil but it is better to know the true extent of the disease now and be under the care of those who recognize and have the experience to treat it. 

You have many common questions and concerns. Take a couple deep breaths and start reading the posts here and you will be gain lots of answers. There is a superthread up top that directs you to lots of good topics. Another site, Oral Cancer Foundation is excellent and directly supported by medical and scient proffessionals. All their material is reviewed and vetted so it is the place to go for accurate information. 

good luck, don

Hi Betty,

I (as caregiver) am one of the people P refers to above as in the middle of treatment. My husbands diagnosis was very similar to your husbands. Pat, my husband, also went to the Dr. complaining for a while until the Dr. ran out of any other ideas but to do a FNA. By the time we finally understood that it was tonsil cancer, my husband had had a swollen lymph node for several months. Anyway, we are here now, he is receiving treatment (complete tonsillectomy, neck dissection with removal of 29 nodes and 16 more rads to go until we get to ring the finish bell), and so far all is well. 

As people have mentioned above, it is pretty common for this type of cancer to be more advanced by the time it is finally diagnosed, and it is very treatable most times even though it is advanced. In our exoerience so far, the time spent waiting from the diagnosis to the actual start of treatment is one of the worst times. So, my best advice to anyone who is just starting the journey is to hang in there, try to take one day at a time and don't fret if you do have a set back (most of the people on here have had a set back or two before being able to start the 'plan of attack') Lastly, prepare for what is coming the best you can (Super Thread - first post on the page). We're all here if you have any other questions!

Jamie

ps- one more thing...there is a thread on here about how long everyone has survived. I find it very inspirational, and when I am having a 'down day' thinking about everything we are going through I go back and look at it. It might help ease your mind a bit to read through it, it's proof that life really does go on 

debbiejeanne said:

betty, i had cancer of the

betty, i had cancer of the larynex so i can't offer advice but i wanted u to know i'm sorry u and ur hubby are going thru this and i am putting u both n my prayers.  there r several here w/the same type of cancer as ur hubby and they hang around and tell their stories to help newbies like u.  the key is, they're still here!  from reading their stories, i know tx is rough, but i also know they made it thru and ur hubby will too.  ask any and all questions u may have.  someone will b able to answer.  keep us posted and know that we are here for you.  maybe ur hubby will want to join too.  it may help him to read about others who have go down the same road he is preparing to travel. 

God bless.

dj 

hang in there. I was you in March. Rob had swollen lymph nodes in his neck for about 8 months and I mean noticealby large. We pretty much knew on March 8 after a CT scan. Treatment started April 15. It felt like forever.

We had almost the same diagnosis but lymph nodes on both sides, spot on throat, both tonsils. He is now 5 months out of treatment and doing great. 

We got the all clean yesterday after another scope and the final report on the PET from last month. 

You will be busy as anything for the next couple of months.

I don't think it will be 6 months of treatment, more like 6-7 weeks of chemo and radiation. 

Come here often with any questions, concerns or just want to cry and scream. We have all been where you are in one form or another. 

This is the best bunch of people you will talk with.

Sandy

bettyannew said:

hi

Yes its 6 to 7 weeks, oops, I said it wrong.  Im very tired, not sleeping well, havent in months, worried on his throat and ear issue.. I dont understand, I looked down his throat, it looked like cancer, does a leg or arm has to fall off before your primary doctor listens to the patient.  To get his attention....all the test came back negative for strep...still prescribed him a z pack....the cancer dr asked, did the z pack work.  No, didnt make it look better, and he didnt feel better....

be better at different things.  The first primary care Doc I saw, was very concerned about a spot on my calf...it turned out to be SCC, also and he removed that....when I pointed out the lump in my neck, he gave me antibiotics....I wasn't nevous about my leg at all...glad that they removed the skin cancer, but my head was scearming..."YEAH...but what about this thing on my NECK!!!"  This was at Urgent Care.  When I went back to get the stitches out of my leg, I pointed out my neck again....what did he do?  He refered me to another GP in their regular office (which took 2 weeks)....and what did that Dr. do?  Felt my neck for 3 seconds an referred me to an ENT (that took a month to get in).....He did a needle biopsy, and I found out I had SCC of the throat within two days....Ah..but the run around wasn't over....it took another month to get into an Oncologist and the Radiologist....and I had to refer myself (both specialists thought I was crazy at first when I did my own calling).  It wasn't till I got here, that I found out that this is so so normal for our disease. 

The neck dissection is where they go in and take out lymph nodes....some have many taken out, some have only a few.  Some Drs. (as in my case) wait till after rads and chemo, and the first PET scan after treatment to decide if they will go in and take them out.  Some do the surgeries before.  I'm sure your husband will get his tonsils out before treatment, but I can't guess what the plans are for his lymph nodes.  My nodes were completely cancer free after treatment, and have remained that way for over a year.  Your husband will have a PET scan before they do any of this so the surgeon can see what areas are affected.

I know you feel like you have been dumped in a foreign country....you don't know the language or the customs....but if you hang out here, we'll translate for you.....Again....let me tell you that your hubby will be ok.....This is very tough treatment (my Onc told me that the only other cancer treatment that is worse than what we go through is Bone marrow)....

For the time being feed him all his favorite meals.....tell him to eat seconds.....this is a time to put on some weight, as most of us lost weight during chemo and rads.....eating does get difficult, and many of us ended up with PEG tubes (a tube that goes directly into the stomach....we just poured our water and our Ensures down that).  But it's all temporary....Matt said that 6 months from the start of treatment, and you'll be arm wrestling over the remote again....he's right on the money.....this is but a bump in the road....you'll be sailing on pavement once again.

p

phrannie51 said:

Betty...I'm sorry you had to look for us

but am so glad you found us!!  There are many people here who have had tonsil cancer, and tongue cancer....and are alive to tell their stories.  What you describe....the delays, the zpac's, etc. are pretty much in everybody's story....weeks and months from the first trip into a Dr. to final diagnosis.  I started going to the Dr. the first of January 2012, and finally got diagnosed in March....yet treatment took another 6 weeks to get started.  For most of us, it was a swollen lymph node that got us going to a Dr. in the first place.  It's going to be ok.....the Drs. have a handle on it now, and for the next couple weeks you're going to be in a whirlwind of activity getting a PET scan, mask made, chemo scheduled, rads scheduled....etc etc.

This cancer is very survivable....and tho the treatment is hard it is doable....On this forum you'll find people just starting, like you guys....people in the middle of treatment, and a whole bunch of folks who have already been through it.  The Drs. take care of the medical end of things....we will tuck you under our wings and help get your hubby through treatment the best way he can.  One of the most wonderful parts of hanging out on this forum, is that you'll get many ideas, so if one thing doesn't work, there are 20 in the wings waiting to be tired.

I had nasopharyngeal carcinoma (SCC behind the nose).....I had 7 weeks of radiation concurrent with Cisplatin chemo every three weeks....then I had another 3 chemo treatments (Cisplatin and 5FU) after radiation was over.  I started treatment in April, and the last chemo came the end of August....I was back to work full time in mid-October. 

Do stick around this board....we'll help you and hubby get through this.  Nobody ever came here not scared....but that passes....to be honest, emotionally from now till the day treatment begins is the hardest part of all this to get through, but you will.  Keep coming here and talking it out....we can ease some of that fear....and help you get prepared for what is to come.  It IS going to be ok....

BTW....I was 61 when I was diagnosed.....we're young enough to handle this beast

p

Hi P.

I have the exact cancer as you described and in the middle of undergoing the exact treatment as you have gone through.  I'm interested to know what factor did the doctors used in giving you additional 3 chemo (Cisplatin and 5FU)?  Did they do a scan and the cancer wasn't clear so they had to add on the additonal chemo?

Thanks.

PM

bettyannew said:

question

What is neck dissection?  29 knods removed, all in the neck. Tonsil removed on both sides.  Was the surgery before radiation or after.

Neck dissection is when the neck is opened up and lymph nodes, and sometimes (and in my husbands case) other surrounding tissue/muscle are removed. In my husband's case there were 29 lymph nodes in the same area as the one node that was infected that were removed. He did have 'clean margins' after everything removed was biopsied...this was excellent news.

Surgery was first. After surgery he was given a couple of weeks to heal and then we started in on the dental work. He ended up with a couple of fillings and a root canal which was one of those 'setbacks' I talked about above. Lo and behold, the night before he was to start radiation treatments he had another tooth crack. After the tooth crack we did get to go on with treatment as planned, but he does have another root canal to look forward to now after radiation is complete and he is feeling up to it  

So, the timing was surgery in beginning of Sept., dental work toward mid to end of Sept. and we started rads around mid Oct. He is scheduled for 30 rads and today we reach the much anticipated half-way mark!!!

Once a plan is in place, and the wheels start turning, they really do turn fast...so try as best as you can to start getting your home, and yourselves, ready for this now. I have a teenager in the house still, so I was concerned with making sure that she would have a homecooked meal on the table each night. I made a boatload of casseroles (in foil pans, and we eat on paper plates ) that I can throw in the oven after a long day and it has been a great help!

Let me know if I can help you with any other questions!

Jamie