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Vals tonsil Cancer (update)

Val12's picture
Val12
Posts: 27
Joined: Oct 2009

Hello all

I would like to thank everyone who has helped me with advice for this cancer.

I had my appointment the other day with my ENT. He brought all the info from my biopsies,MRI, and quadroscopy together to discuss what comes next.. Yep the appointment started with " We are going to have to make you very, very sick to make you better. On a scale of i to 4 you are stage 4 tonsil cancer."

He told me I have choices in treatment but he does not want me to decide until him and I have met with the rest of the team, radioligists oncoligists etc.Which won't be until Jan 8th. ( Cancer Institute outpatient closed 2 weeks for the holidays).Basically the choices are:
1 surgery, radiation/chemo
2 radiation/chemo then surgery
3 double radiation/chemo and a small surgery

I think from what I hear I will go with 1, but will wait and hear what they all have to say. Anyhow thats another h"Hurry up and Wait" thing for me.

Anyhow he had more bad news for me,it seems the MRI shows that I have a small benine tumor in my brain, he was just going to watch it but decided to put me in touch with a neuroligist to watch it also and give me abit of peace of mind.

As I said before I thank you for any advice you give me, I have started gaining some weight for those of you who have urgerd me to EAT, and I will continue through the Holiday season. , ( about 15 pounds so far).

Anyhow for a person who normally loves Christmas, I am having a bit of a hard time with it. It is alwys with me and I would love be able to just enjoy the holiday. I guess in this "New norm" I will just try and keep busy to help keep the "cancer out of Christmas" We are going to try not to metion it till after the New year.

From my family to all of yours Have a Merry Christmas and all the best for a happy healthy New Year Thanks Val

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Val, I am not sure you are asking for advice about options here, but as a result of my personal experience, I would also lean toward option 1 unless directed elsewhere by your medical team. Despite some issues I have had as a result of the surgery on my tongue, even when I have moments of doubt I ultimately come down on the side of, 'yeah, getting it out, removing it, leaving as little as possible to nature and chance, was the best way to go."

Perhaps I can say that more easily now because things are going better and I have been without cause for concern for some time now.

Your doctors, I am quite hopeful, will help you make the best decision in that regard, and the location of your cancer is certainly different from mine, maybe even the type. Those things matter. Of particular importance: if you do go the surgery route the results are not so likely to impact your life and lifestyle dramatically, I don't believe.

As for the eating to gain weight thing, I appreciate where people are coming from: there will come a time, perhaps, when eating will be a problem for you, regardless of the path you choose. Surgery can cause scarring (both permanent and temporary); rads can cause scarring (both permanent and temporary); and, between surg and chemo and rads, you will take a short-term sort of beating, that's for sure.

So, yes, eating is good for you. Still, my advice is that you combine the eating with exercise, if you are up for it, so that whatever weight you gain is healthy weight rather than pounds for pounds' sake.

Even a walk around the block may qualify.

Part of the reason I say that is that I notice chemotherapy is on of your lists of options (as is to be expected) and chemotherapy concoctions typically include a steroiod (mine, in two different cases, included decadron ... I have been told at one time that it was to help alleviate nausea and at another time to help with appetite.)

The thing is, decadron and probably some other steroids as well, seem to increase the appetite, whether that is their intent or not, particularly among women, and that statistic is not formal, Val, but just something I have heard from ladies in here time and again, while I do not hear it from men (that may be cultural, though: us guys tend not to worry so much about weight gain, I think: 15 pounds to a woman is noticeable; 15 pounds to a man is 30 large hamburgers :)).

I can certainly understand your concerns regarding the benign tumor in your brain. I hope that your doc has that right and that it proves not to be a major issue. Even so, since tumors grow even when they are not otherwise malevolent, I am sure that this is on your mind (pun not intended).

I thank you for the expression of season's greetings, Val, but more so for the indominitable spirit you express throughout the post.

Best wishes for a Christmas surrounded by loved ones, with a hopeful new year ahead!

Take care,

Joe

Val12's picture
Val12
Posts: 27
Joined: Oct 2009

Thank you so much for your thoughts, this is such an emotional time, and I find when I come in here to let my emotions out, there is always someone here who can calm me down abit, so thank you.I am a fighter but am getting sick of being kicked back down, once I am up, like the tumor thing, and yes it does scare the hell out of me. I saw my mother go through a brain tumorin 2007.She was diagnosed the end of April and died the following August 10th. Funny thing about it she had part of a lung removed because of cancer... she was considered clear, the doctor said he took enough to make sure he got it all, had CT?PET after and was clear..nothing showed up in her brain at all the Nov. before tumor appeared. They told us it was not metastisized from the lung cancer , that it was a second primary.... so you can see that it bothers me greatly.
Anyhow I hate the emotions, so I try come in here and vent. My family knows I am very emotional and I hate worrying them with my meltdowns. Thank you again for your calming advice/thoughts I do really appreciate them.
Sunshine and smiles Val

Val12's picture
Val12
Posts: 27
Joined: Oct 2009

Thanks for all the advice and comments. I am going to go with #1 also. My doctor does not want me to decide until I hear what the radioligist has to tell me... he wants me to know all my options first, but I have heard to many people who have said the had infection with the second way. I just want to get it done and over with. Anyway thanks to all of you.
I hope you all have a Merry Healthy Christmas and New Years Val

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Val,

I was diagnosed on a Thursday with Tonsil Cancer, had scans done the next day. I then met with the 3 doctors ENT, Onocoman 1 (Chemo) and Oncoman 2 (Rad) on the same afternoon in a board room setting. We had the results and mine was contained but with faint take up in 2 lymph node next to the Left Tonsil. I was a little astounded at the time that they were happy to proceed either way so I slammed the questions at them. From the answers, i thought Surgery followed by Rad/Chemo was best. I asked each one if that's what they would do if they were me. They all responded yes. I was on the theatre table on the following Monday. I recall a previous post to you about the slow pace your Doctors were moving but I guess it depends on the system you have to work with.

I had IMRT for 7 weeks twice a day (70 hits) and was given Erbitux weekly which they call 'Target Therapy' for some reason instead of Chemo. I started the Load dose of Erbitux the day I was discharged from surgery and commenced the IMRT and regular Erbitux the following week. It was all go go go.

I am 10 weeks out and happy to say my PET CT 2 weeks ago showed no uptake at all.

The treatment was hard going for me for many reasons especially weeks 3 -5. I had the PEG in week 3. Everyone responds differently but I would suggest working on your immune system with diet and supplements as well as putting on weight. It's a bit catch 22 as the healthy diet usually makes it hard to put on weight. Your immune system is critical for recovery and long term survival as well as the emotional and treatment side of what's coming - so try to address these areas as you have read in this forum.

I hope it all goes well. There is no reason you for you not to get through all this and continue with your life almost as it is now. There will be some changes, but you can live with them and overcome what is ahead.

All the best and enjoy Christmas with your family.

Scambuster in Australia

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I think if I was in the boat with you I too would choose opt #1 it seams like the one that makes the most since to me. Decisions like these are not the easiest ones to make so I suggest not trying to make them all by yourself find someone to talk to and tell them all that is on your mind. You say you always love Christmas but now you don’t feel so much like it, this is very normal for someone going through cancer just watch out for dispersion, keep doing anything that takes your mind off the cancer, things you enjoy doing, things that make you happy. On another note your body’s immune system normally fights the cancer in you and destroys it before it has a chance to start growing, when the immune system gets weak it can’t do its job and we become sick. Do things to help you body help its self and remember prayer is one of the best things you can do and have other doing for you. I wish you all the best, God bless

train-nut
Posts: 101
Joined: Jun 2008

Val,

I remember it well. I had been really focusing on recovering from throat cancer (did your option #1), went in to get the results of the first post treatment scan and he tells me the throat looks OK but I have a brain tumor. Talk about getting "unglued". Turns out it's benign, is called a meningioma, probably has been there a long time, is unlikely to grow. Many people have these things and don't know it. They usually don't cause any problems. Most are discovered when looking for something else. Have a Merry Christmas and look forward to many, many happy and healthy New Years. Rich

seahaven
Posts: 10
Joined: Oct 2009

Val,
I too have tonsil cancer. I went with your option #1. I had my surgery three weeks ago and start my Rad tomorrow. I will be doing my Chemo during Rad treatment. They removed 42 glands and nodes from my neck. It was a breeze. I have some limited motion of my head and my shoulder is numb but it really isn't too bad. It was suggested that because of the amount of Rad I am getting that I take a hard look at my teeth. After much prayer, I had them removed two weeks ago. I now have dentures and it really isn't too bad either. We are all different and will have a different reaction to treatment. I wish you the best and will be praying for you.

ed

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

number 4 i guess
I had a big lemon sized neck lymph node and a large tonsil into the base of tumor.
It was so large they decided not to operate and to shrink it with some induction chemo first.
I got 6 weeks of Taxol plus Erbitux plus Carboplatin
Then I got 7 weeks of radiation with doubles on fridays plus i got Cisplatin chemo daily on weeks 1,4, and 7 of radiation.
Then i got the radical neck dissection .. i kind of liked the operation last because they could test all the material they took out.
I believe the radiation is whats kills the stuff.
Because i was so advanced they wanted to shrink it with chemo first and it worked . I am a year and 3 months out and feeling great except for taste buds arent perfect.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

The problem with the surgery coming 'last', in some cases, is that the other treatments (the rads in particular) may adversely affect the tissue that the docs will want to get to with the surgery.

This, I presume, is all dependent on where it is, along with the hope that they do not have to do surgery at all if the other treatments work.

I was offered the opportunity to forego surgery, as an instance, but with the proviso that if I did so, following rads and chemo there would be no changing my mind: for the surg they had in mind for me, it would be too late.

As you indicate, though, Victor, they had other reasons to go the other way with your case.

Great to hear from you, by the way. It seems like it's been awhile.

I hope that all is well.

Take care,

Joe

Val12's picture
Val12
Posts: 27
Joined: Oct 2009

Thanks again I was told that with either #1 or #2 I will need the surgery... with #2 though I would maybe not need the radical tonsilectomy ( maybe not sure) I have been told by many that radiation is hard ont hte tissue that needs to heel, that alot of times infection can set in and thet have to go in and repack or put tubes back in... ENT says not to worry about the staging , he says it is very contained and that 5 years out he is pretty sure I will be cancer free.... but wants to treat it very agresively now.. I really think #1 is right for me. Val

Val12's picture
Val12
Posts: 27
Joined: Oct 2009

Thanks again I was told that with either #1 or #2 I will need the surgery... with #2 though I would maybe not need the radical tonsilectomy ( maybe not sure) I have been told by many that radiation is hard ont hte tissue that needs to heel, that alot of times infection can set in and thet have to go in and repack or put tubes back in... ENT says not to worry about the staging , he says it is very contained and that 5 years out he is pretty sure I will be cancer free.... but wants to treat it very agresively now.. I really think #1 is right for me. Val

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Excellent remarks from doc, Val!

Docs don't say things like that unless they have something to back them up (and so they do or would not make such statements).

Frankly, I prefer an aggressive doctor, and am glad to hear, for your sake, that yours is of that ilk.

Take care,

Joe

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

You where and still are one of the people who helped me more than i could have ever asked for.
I dont type and communicate my thoughts very well . But i try to steer people to be aggressive .
I am doing very well 1 year and 3 months out.
Never would have believed id be this good a year and 3 months ago.
Take care Victor

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Actually, Victor, you communicate quite well and always have. Lest you not understand, you are a beacon, each and every day you go forward with happiness and success, to those just now entering into this or plodding through it.

So your words matter to all of us.

Feliz Navidad, my friend!

Take care,

Joe

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

Option 1 wasn't available to me as my tumor was way to big. I was stage IVN0 tongue cancer. I was told to do surgery first would be a total glossectomy and a laryngectomy leaving me with no tongue and no voice box so they wanted to shrink the tumor. This involved 46 radiation treatments and 10 weekly chemos. After I finished this treatment the surgeon told me I had to have 85-90% of my tongue removed. Once I was healed enough to have the surgery along with gain some weight back, I went under the knife. But the good news was that they only did 6 deep tissue biopsies and only found scar tissue and dead cancer cells. So the radiation and chemo did the job and took care of the tumor. The doctors did take the base of my tongue and fastened the rest to the floor of my mouth. I can live with this.

You have to listen to the doctors as to what they feel the best plan is as far as treatment for your cancer. They are the experts and we are just people that have walked the walk.

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