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Needing some advice please!

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

Hi All,
So I am waiting again for another appointment with my ENT. It seems that is all I have been doing is the waiting thing. I was diagnosed with "Cancer" September 24 and I am still waiting. I have my appointment Dec.15 with my ENT to discuss the next step.. Am very confused, isn't it supposed to be the sooner you are diagnosed the better?
Yes I was originally diagnosed in September but have been trying to get answers since July. I was bit by a wood tick and thats when all my tests, blood work, lymph node ultrasound etc. all started. Anyhow that is where my frustration is coming from.
Now I am researching my head off on treatments, trials and surgery. I have not been sent to the Cross Cancer Institute at this point so have not talked to an oncoligist. My ENT says that this cancer tumor is contained and is very treatable, but I still have no idea what stage this cancer is at.Hopefully he will tell me on the 15th.
I do have a few questions and was wondering if anyone could help me out:
1) Since I am seeing and discussing with my ENT the next step, does that mean he will want to do the radical neck disection and surgery before treatment?
2) As for radiation has anyone had any experience with Brachytherapy?
3)Is Cistipan and FU5 the common chemo treatment for tonsil cancer?
4) Is 7 weeks of radiation common for tonsil cancer?
ealthboards-halfpint1954- Edward

Anyhow if anyone can answer any of these questions for me I would really appreciate it. I am doing ok most of the time it, but still have my melt downs every now and then. Of course Being snowed in with 20cm snowstorm this weekend does not help.. Hopefully we will see some sunshine soon.
Thanks Val

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

...as soon as you can. I am amazed your ENT hasn't scheduled you for a PET/ CT Scan like NOW !!

I saw my ENT guy on a Monday when I found a suspect growth in my throat, he took a biopsy (Growth on Left Tonsil) results came back Thursday with bad news - it was Cancer, straight in for a PET / CT on Friday (Yes the very next day) and I went into surgery early the following Monday. I was stage I with some 'shadow' uptake on 2 nodes on the same side.

The ENT Surgeon took out the tumor from inside and didn't radicalize as they rarely do the radical neck dissection these days with the new IMRT & Chemo now available. If that was on the cards. I would again say he would already have you on the table.

After my surgery i was in for about 10 days, I started the Erbitux and a week late commenced IMRT which ran for for 7 weeks and I was given Erbitux once a week throughout. This is a common treatment for Tonsil Cancers. I am in my 9th week out of treatment and doing OK. They call Erbitux 'Target Therapy' more often than calling it Chemo. The side effects vary for everyone. I had a bad facial blister and peel for a couple of weeks. There are other longer term side effects possible, but that was the main one for me.

As I had IMRT (Intensity Modulated Radiation Therapy) I was zapped twice a day for the duration (70 hits). Some centers with standard RT will administer the RT once a day (35 hits). I gather IMRT is a better option but that means 2 trips a day 5 days a week as the twice daily treatments need to be minimum 6 hours apart.

Yours may be different but I would be pushing to get a Scan ASAP so you know what and where. Time does make a difference. If your guy isn't moving, find one who will. You are talking about your life here so don't worry about offending a doctor who is dragging his feet.

Another option is to go straight to an Oncologist you know from friends or at a renowned Cancer Clinic etc especialliy one that deals with lots of Head and Neck cases if you have that option and work the other way. Your ENT guy sounds a bit slow to me.

Some Oncologist will opt to treat the tumor with radiation and maybe Chemo first to shrink it, then do surgery. Others like mine, did the reverse. I did participate in the decision and I felt more comfortable to cut the tumor out while it was contained. If the radiation and Chemo work well you may even avoid surgery altogether.

There's a lot more I could write here but I think your priority is to get some faster action from your doctor(s).

Hoping you get things moving along.

Let us know how you go !

Regds
Scambuster

pk's picture
pk
Posts: 192
Joined: Aug 2009

Scambuster is right on. My husband was diagnosed on Aug 1st - had his biopsy, pet scan, feeding tube placed, and had his mouth guards made all within just a little over a week and started radiation on Aug. 9th. We live in a smaller community just outside of Minneapolis with a very progressive hospital and oncology dept. so that helps, but I think you need to find someone who is more proactive. PK

ljoy's picture
ljoy
Posts: 83
Joined: Dec 2007

I'm a four year survivor of Stage 3 tonsil cancer. I agree that you need to contact a cancer center for medical and radiation oncologists to evalutate your case. A pet/ct scan is one of the first steps. I did have the lymph node removed from my neck (which is how I discovered my cancer) and tonsil surgery prior to treatment. Radical neck disections are not commonly done now days. Chemo and radication treatment is very successful in curing tonsil cancer. (Squamous Cell)

I was evaluated and diagnosed at M.D. Anderson Cancer Center in Houston but returned to my home and a small cancer treatment facility for treatment. I had 5FU, Cisplatin and 39 radiation treatments with IMRT. Erbitux is also used instead of Cisplatin since it has less side effects. The number of radiation treatments will be determined by the radiation oncologist but seems to average in the 30's.

This is a great site for assistance. If you can give us more details about your diagnosis and where you live lots of people will jump in to help you.

My best to you and keep us posted on your progress.

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

Hi All,
Just want to clear up a few things about Canadian Medicare as to the American Medicare.
In Canada it is true we do not pay for medical out of our pockets and it is considered free. In saying this we cannot book an appointment with a specialist, like you our neighbours to the south. We have to be referred by our family doctors. So we cannot just change ENTs or Oncologists etc. I have not seen an Oncologist as yet because my ENT is a Cancer only ENT and is the head of the cancer specialist team. I consider myself lucky that he is considered on of the top in his field in N. America. I is the director on a lot of boards, and a professor. His training is extensive and he is a fellowship doctor, and has doctors from all over the world coming to train under him, so I cannot complain about his credentials.
It took my doctor 2 weeks to get me a consult appointment with the ENT, and then it was another month before I saw him. (Diagnosis of cancer Set.14, appointment with ENT Nov.2nd, cancer of tonsil diagnosis) I could not have CT/PET because of a stupid allergy that I have to dyes, so did have an MRI on November 4th. I then had a Quadroscopy/biopsy Nov. 27th. My next appointment is Dec.15th to discuss the next step.
After saying all this at my next appointment, if I don’t get satisfaction with a treatment/ surgery plan for soon as possible I will blow my cork, and the tears will automatically come, hopefully he will have me in the hospital very early in the new year for something. I do know once this ball gets rolling then I will be fine and on my way to healing, but it is so frustrating in the meantime.
Anyway I think we, neither, Canadian or American have the perfect Medicare system. Here we have to hurry up and wait, with the slowness of the system, our chances may not be as good as making it through, or we cannot just change specialists when we are not satisfied, because of the length of the process. On the other hand in the States, where Medicare is so expensive, that not everyone can afford health care. I say this because of an Dr. Oz show last week where they had a free clinic in Texas, and the people with cancer and other diseases that cannot afford health care, anyhow I hope you get my drift here.
I think we all have to pray a lot and hope for the best. I think most of our medical people are wonderful, no matter where we are. In Canada I do know that a lot of the healthcare workers are very overworked. Thanks for listening to me.
Sunshine and Smiles Val

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

Hi Val

First I had to read your posts several times to glean some info but it seems like you have Head and Neck cancer to "One Tonsil" as your primary site. If this is the case your prognosis is very good and your doctor is correct about it being contained. If thats the case your staging would look like this using the TNM staging system:

T indicates the size of the main tumor?
N describes the extent of spread
M metastasized to other organs of the body

The letters numbers 0- thu 4 indicate severity
The letter X means 'cannot be assessed"

So if you have cancer in one tonsil now and that is all you know, keep in mind you dont know metastasize yet because of not being scanned but your ENT feels its contained.

T1 if your tumor is 2cm across or smaller-which your ENT can visually see
NX nearby lymph nodes cannot be assessed-imnfo not known or "NO" no spread

MX distant spread cannot be assessed
Mo no distant spread

Your best possible staging based on your info at this point is
T1N0MO- The tumor is 2 cm across or smaller and has not spread to nearby structures, lymph nodes, or distant sites. If this is your staging your outlook is very good if not excellent, remove the tonsil/s and possible radiation and some chemo just to make sure? Based on what you describe it would seem surgery to remove tonsils is your first course of action. Generally the more modalities of treatment implored are indicative of more severe disease. Also keep in mind that they can be done in any order depending on your doctor.

Because of your unknown information I agree that your ENT is moving too slowly, he should at least have biopsied the tonsil by now?

At this point your cancer is very curable based on the info you provide. Don't let him procrastinate, insist on something being started now, the sooner you have a plan the better you will feel. I certainly don;t see a neck disection by your description.

As a comparison my diagnosis was T1N2bMx,I underwent 39 Rads, with cisplatin chemo and a se
lective right side neck disection.

T1-the cancer primary was known and under 2cm, base of the tongue.
N2B-the cancer had spread to multiple lymph nodes on the same side as the primary tumor, but non larger than 6cm across.
MX- presence of distant spread cannot be assessed

Once you know the staging then you can research treatment protocol for that level of disease.

These are strictly my personal opnions from having gone through this.

Good luck, I think you've got it beat!

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Took them 7 weeks from my first ENT visit, which included a needle biopsy on the upper-tumor, to the first day of rad and the chemo pumps. It seemed like a long time, but it did include a surgical biopsy in 5 places, PS, and installation of port and feeding tube; and, of course, the fitting of the dreaded mask. This is a time you will long remember of- use it to grow stronger. Can be done. Believe.
Cannot comment on tonsil- mine was Nasopharyngeal. Trust the advice of Ratface, Joe and Hondo, etc. on this forum. They have been there.

kcass

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

Thank you very much for you knowlege.
My first biopsy was on my neck, lymph node was found malignant, could not have CT/PET cause of dye allergy, but am told yes it has metastisized. My doctor has already said I will need probably modified neck disection for ot as the cancerous node is encompassing the sterionoid Muscle and is very fixed.I had the MRI, quadroscopy and biopsy of the tonsil done on the 27th of November. So now I am just waiting for Dec.15th, and to discuss the next step surgery. It does seem like a long time but all in all it has been only 3 months since original dx to my next appointment, and I am finally on my way. Thank you thank you thank you again for all your info. Sunshine and Smiles Val

CajunEagle
Posts: 352
Joined: Oct 2009

While you are waiting for something to happen, start being pro active by EATING...EATING...EATING. Try to gain at least 25-30 pounds. It's really hard to believe when you are in treatment how all meals and food just look awful. You try to force yourself, but you just can't eat. The worst part is the dreams of cheeseburgers..steaks..pizza... (actually, mine was crawfish, jambalaya, and gumbo). One part of your brain says gobble it up. The other part says YUCK.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Val

CajunEagle is right. I lost roughly 18% of my body weight. But heed the words of Hondo- eat right (fresh produce/fruit). And maybe start on the Ensure/Boost. Pizza- oh yeah.

Advice I will never stop giving, because of what I went thru: get the meds and all info from the Drs. beforehand. If Morphine and Magic Mouthwash will possibly be in play, which your Drs. will either confirm or deny- then get them ahead of time, or at least the prescrips done with the Pharmacy. Walgreens likes a 24-hour lead time for the MM.

If money is an issue, Val, then I might be an authority. Kept a record of the Provider charges, and what the Provider accepted from United Healthcare as full payment- Chemo and Rad got 35% of what their charges were, by contract with UH, and that was okay with them!
I got it all down on paper, including the itemized bills from UH. 35%, Val. That still might run into a lotta money, as UH paid over $68K for my charges in 2009, which included the ops. for biopsy, and Port and feeding tube installations, and 4 days in the hospital in week #6, but it all came to a 35% acceptance by all the Providers. If you need documentation of this, I will provide for you. All you gotta do is ask. but there's no way anyone should feel responsible for anywhere near full Provider charges. WE ARE ALL IN THIS TOGETHER, Val, and I was outraged at the charges submitted by Chemo and Rad. Know you are in Canada, which is socialized med, but what I say goes for everyone.

You're in our prayers, Val.

kcass

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

I have already gained 18 pounds since July, and am still gaining.... Normally 5'5" and 123 pounds and am up to 141 pounds.... Have been petite all my life so this is quite a change... Everyone says I look very healthy and comfy now... I am eating and enjoying it all, alot of avacado with everythingmmmmmmmmmm. I am going to enjoy it while I can... Not looking forward to treatment but am ready to get going Thanks Again Val

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