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

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.

Thats a lot of knods....geez.

j4mie said:

Hang in there...

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 

What is the survival for this type of cancer...this type isnt a curable one is it? I had hodgken lymphomia, and went through 6 months of chemo only.  4 chem. Through my port, took around 5 hours, this was done every 3 weeks, this was 12 years ago... I was told it was a cureable type of cancer. Im thinking to much here.

I

phrannie51 said:

Betty...different GP's seem to

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

In 4 days, this coming up Monday,  my hubby has his mapping etc ( I think it called that) at 930am, than he will have his PET Scan at 1130am.  Special diet, and they said it will take 2 hours?  Why 2 hours? Do we get the results that day? So this PET scan gives us the whole picture here, where the cancer is right?  Again, im thinking to much, and my anxiety is high right now, my husband is asleep,  where I should be, I dont work outside the home, I do enough work here, im doing laudry... night time is the only time I dont have phone ringing, med time, not just for my husband, but I care for my 88 yr old mom....my mom is difficult, my husband is a piece of apple pie!!!! Dec 2009 is when we started caring for her..been an adjustment for sure..

You know im thinking way ahead here, and im getting scared, etc all over again..... I just want my husband to be ok, id better, do something else here.

Betty Anne

CivilMatt said:

I have walked in your shoes

Betty,

Welcome to the H&N forum, so sorry to hear why it took s bit of time to figure out.  Now that you are developing your team, things will begin to move towards treatments and recovery and believe you me you both will recover and move forward.

I was stage IVa, scc, bot, hpv+ & 1 lymph node (surgery radiation & Erbitux).  The virus they referred to was probably the hpv.  There is mounting evidence to support (good) cure rates if the cancer patient is hpv+.  Regardless, of being + or - , the treatment regimen is similar with very good cure rates for either. 

Thinking about your fears made me relive  the first few months and how I was once a “cancer rookie”.  I don’t know how my name came up in the cancer pool, it just did and the advice I got from my H&N friends made it VERY manageable. 

 In 6 months you will be arm wrestling for the remote and most of this will be behind you.

You will be fine,

Matt

How do you find out if you have the virus or not.  My husbands dr did tell us about it, said having the virus doesnt change thevtreatment, I cant remember how the dr told us, I think its better to treat with the virus.the treatment works better with the virus.

robswife87 said:

Luckily for us

we have the best primary doctor in the world.

She had a feeling something was not right in Sept. 2012 but hubby did not worry about it. I took him in March 2013 as he had the flu and his cough would not go away.

She asked him if he had gotten teh CT scan back in Sept (knowing he had not). She showed me his tonsil and she knew. CT was that night. 

She called 2 days later and had him to an ENT in 2 days. The first ENT said we need to get you to U of M now. I knew some people that worked there and made the call myself. Had him at the CCC in less than a week. 

Every person that had seen him knew right away he had cancer. Yet it still takes time to set up with FNA, bipsies, radiation, chemo, scans, mask. 

It feels like forever but once you start it really does go fast. 

We had things like thrush and feeding tube at 2.5 weeks in. Our medical oncologist made sure he had anything and everything he needed, Nasuea meds, pain pills, magic mouthwash, Mugard, anti-anxiety. If they thought he needed it we had it.

The U of M has the best crew of docs and nurses that you could hope for in this fight. Everyone one of them was empathetic and caring.

Sandy

So far, once I demanded an referral ENT Specialist, we was in his office less than 1 week, rad dr. In 3 days, mapping 4 days, 2 days after mapping the chemo dr.  Boom, boom!! I put up sticky notes every where my husband goes during the day in our house.  Reminders, encouragements, etc....I will change them as needed.

He cried this am, as he read them all and loved them.  Reminds him how lucky he is to have me as his wife of 35 plus years. Thanks to you all

Bettyanne