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I am scared and very confused please help me

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

Hello I am new here, I was diagnosed with cancer in my lymph nodes in the right side of my neck in September. I still do not know what the primary is and the stage, because I am allergic to dyes and can not have a CT PET scan. Today finally I have an appointment for a MRI, but am told it is not as good for soft tissue problems. Also I will be seeing the ENT in just over a week from now. I know he will endiscopy me thouroghly, and we will find out where the primary is... My question is if they can not find the primary how will they be able to treat me? Like I said I am new to this and very confused, also I am scared stiff.I do know they will be doing a radical neck disection for the lymph node removal. But don't they have to know the primary first to be able to treat the metastic lymph nodes properly.If anyone can give me abit of insight for my journey ahead I would greatly appreciate it, I am very confused and scared stiff Thank you Val

TIM_WWJD
Posts: 38
Joined: Jan 2009

Val
First it is very normal to be scared so don't let that get you down. I was diagnoised with stage four tonsil cancer January 5th of this year. One thing I would recomend is getting another opinion. Most doctors recomend you do this so you get all your options. I was given an option to not have surgery to remove the cancer but to go through a series of chemo that was pretty intense but I avoided the surgery and posible side effects of that. It worked on shrinking the tumor and shrunk my lymph nodes. It really helps to also have someone come with you to your appointments. My wife was the biggest help through all of this. There is so much to be prepared for but don't get too overwhelemed. As for the PET scan I had one but my radiation doctor said he really prefers using the MRI and CT scans so don't be too concerned about that. Everytime I offer advice on this site I always suggest that you get all the information you can. Also make sure you keep hydrated and weel nutritioned. You will suffer the side effects much less. I learned the hard way and it was tough to get back on track. You are posted to the head and neck section so if the primary is in your neck be sure to get a PEG tube for feeding. I have heard a few people who have "toughed itout" but I wouldn't recommend that. I have heard there was worries about losing your swallowing ability but all you have to so is keep practicing even if your not eating. So you know there can be life after this. i am four months out of treatment and things are so much better. I am back to work part time and aside from a few little side effects things are normal. I credit most of this to prayer and my wife keeping me in line. Good luck with this and if you have questions post them here there are dozens of experts who will help you out. Please give as much detail on your cancer once they find the primary. It helps people who have a similar type get back to you.
Tim

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

Tim provides great advice re accumulating as much information as you can, and in bringing along someone a bit more objective and clear-minded to help with recording that information so that you can later go over it, try to comprehend it, and come up with new questions, which you should also write down, so that you have them available to ask at your next meeting with the doctors.

I would add that any number of folks who have written on this site describe a situation similar to your own, where the primary is unknown but cancer is clearly evident. What you are experiencing in this case is not uncommon: without the primary to go after, your doctors want to attack the cancer they DO know about. In doing so, they may very well discover the primary, and even if they do not, depending on treatment, they may eradicate it.

The great news is that, even if they do not locate the primary now, they are on the prowl for it, and it will nto hide for long. Yes. That is good news. It means, hopefully, that when they discover it, it will not have spread to unmanageable proportions.

I had tongue cancer with spread to lymph nodes in the neck. I underwent surgery that included both replacement of part of my tongue AND a radical neck dissection. There are some continuing inconveniences, four years later, but they are probably moreso because of the tongue surgery than the radical neck surgery. I am glad to be here.

When they do the dissection, even if they do not immediately locate the primary, Val, they should be able to determine the type of cancer, which is likely to allow them to narrow their search.

At this point, it sounds as though you are in good hands, with some folks who want to treat your cancer aggressively (I am a proponent of that).

Best wishes.

Take care,

Joe

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

All the advice given thus far is spot-on. I would add only one thing: Find the best doctor/hospital/cancer center that is available to you. If it means traveling, so be it: It's your life you're talking about.
I could have received my treatment at my podunk hospital here in Delaware, but I did a bit of research and wound up going to Johns Hopkins -- and I'll be forever thankful that I did. The quality of care and the expertise there are miles above what was available here, and I truly believe that I'm alive and doing as well as I am today because I went to Hopkins.
Hang in there. You'll get through this.

--Jim in Delaware
Stage III SCC right tonsil, one lymph node involved; 30 rads, 6 cisplatin treatments, modified radical neck dissection

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

Thank you all for you comments and reassurance. I finally will be seeing my ENT on Monday YEAH!!! A lot of my anxiety is because it has now been 6 week since being diagnosed with cancer.
I have researched doctors here, and have found mine probably to be in the top 2, and have talked to many people who have had him. I am near Edmonton, Alberta, Canada. We have the Cross cancer institute which I know by past experience is one of the best, so am secure in my mind that I will have the best of care,
Thanks again for all your advice Sunshine and Smiles Val

PS Will let you know what the final diagnosis is :)

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

Thank you all for you comments and reassurance. I finally will be seeing my ENT on Monday YEAH!!! A lot of my anxiety is because it has now been 6 week since being diagnosed with cancer.
I have researched doctors here, and have found mine probably to be in the top 2, and have talked to many people who have had him. I am near Edmonton, Alberta, Canada. We have the Cross cancer institute which I know by past experience is one of the best, so am secure in my mind that I will have the best of care,
Thanks again for all your advice Sunshine and Smiles Val

PS Will let you know what the final diagnosis is :)

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

Hi all thank you for all you comments and advice,.
I have my appointment with the ENT today and he visually found the cancer, with the help of an endiscope. He said the bad news is I have tonsil cancer in the right tonsil.... the good news is it is very treatable. He is sending me back to my GP for preop tests tomorrow, then an MRI on wed. Then he will schedule day surgery for a quadroscopy. Onece this is done . He can say for sure it is tonsil cancer.After that is done we can discuss the options with Cross cancer Institute in Edmonton. ( They are fantastic! Anyhow I am a happy camper and am happy this is finally starting.Things are looking uo here Thanks to all pf you Vak

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

Hi all thank you for all you comments and advice,.
I have my appointment with the ENT today and he visually found the cancer, with the help of an endiscope. He said the bad news is I have tonsil cancer in the right tonsil.... the good news is it is very treatable. He is sending me back to my GP for preop tests tomorrow, then an MRI on wed. Then he will schedule day surgery for a quadroscopy. Onece this is done . He can say for sure it is tonsil cancer.After that is done we can discuss the options with Cross cancer Institute in Edmonton. ( They are fantastic! Anyhow I am a happy camper and am happy this is finally starting.Things are looking uo here Thanks to all of you Val

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Similar to Jim, I was diagnosed with stage III SCC to my right tonsil in January of 2009, with a tumor on the side of my throat as well. I had nine weeks of Cisplaten, Taxotere, and 5FU, followed with seven weeks of Carboplaten and 35 radiation exposures.

As of June 18th all signs and scans show no cancer, ya... The cancer appears gone and the tumor shrank away during the second cycle on the initial nine weeks of chemo.

The tonsil biopsy showed it was HPV derived which is actually fairly common now. It's actually becoming more prevalent than tobacco related throat cancers, that's scary.

Hang in there, you are in the right place to become knowledgable and gain support.

God Bless,
John

bri777
Posts: 10
Joined: Nov 2009

Dear Val,
I know it is hard but do your best to walk through this journey without fear. I have been through two neck dissections, a trial drug, (peg-intron) and now after 2 years of clear health a recent episode of a reoccurrence. I have a very strong faith and a network of people who are supporting me. That is key. Surround yourself only with positive people that love you and are supportive. I am dealing with melanoma which is a very tough type of cancer. I had two sets of lymph node sacs removed along with part of my saliva gland. The results were not bad. I have permanent numbness of the left neck and shoulder but that is a small price to pay for getting the cancer out of me quick. I was followed up with interferon treatments which were tough but that was my only option I felt was worth while at the time.
Do you know what type of cancer you are dealing with? That is very important. Get a biopsy quick if you haven’t already. Simple and not that painful if they biopsy a neck lymph node. Educate yourself with every bit of information you can get and do not settle for one opinion. I am on my third opinion right now and just last night decided on what course of action I want to take. It can be a head spinning ordeal but keep yourself up and know that there is ALWAYS hope. Dr's will tell you the worst case which is not always your case! If you have any friends in the medical community ask for their advice. Some of my Dr’s dropped the ball through the process and I received good advice from some nurses who are my wife’s friends. Yes.. they can be great information givers as they see and know a lot.
You are in a difficult time right now but you can gather the strength and get through this. Get a fighting attitude! I have a wife and a 5 yr old son to fight for.
I can’t emphasize enough about educating yourself through this process and knowing every option. I recommend getting on cancer research web sites and the hospital websites with excellent reputations for cancer research. Moffitt, Dana Farber, Cleveland Clinic, MD Anderson to list a few. I am mixing conventional meds and non conventional for my treatment as my diagnosis is really a tough one. Stay positive and don't allow a negative attitude to creep in. That is self desructive and doesn't do you any good. You are strong enough to get through this and you are going to survive! Stay focused.
I will pray for you and believe you will come through this clear and a much stronger person.
God bless you.
My faith in God has been a powerful strength for me.
Bri777

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

Thank you all again for your comments and advice!

I finally had my appointment with the ENT last Monday, so I do have some more info. He did and endiscope and found I have a tumor on my right tonsil. He said it looks very contained, and he said it is very treatable, and then told me I would be around for a long long time.I also had an MRI but the results are not back yet.( Wil find out on Monday)My ENT has also scheduled me for day surgery to do a quadroscopy and biopsies. With the info from all of this he will be able to tell me more abot the cancer I have, stage etc. After this is all said and done he will set me up with the cancer institute here to help me find the course of treatment that is right for me.
I just want to get this ball on the road, and get started back to a healthy me. My cancer has metastizized in my lymph nodes on the right side. Thanks again Val

bri777
Posts: 10
Joined: Nov 2009

Val,
Sounds like things are progressing. My ENT was the most encouraging of all my Dr's. He is great. You will be amazed that one day you will look back and be able to smile...Really! I can even now with dealing with a really bad current situation. You will be a mountain of strength for others and have a deeper appreciation for life and what it has to offer. You are a survivor! You will make it through this.

Bri

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

Hi
I got my MRI back, and do not quite understand it all, thank goodness for researching on the internet to help me understand it. So here goes:
I have a squamious cell carcenoma of the right tonsil, T2 and measures 1.5 in diameter. The cancer has metastisized to the lymph nodes on the right side(2.4 Cm). Also I have an additional enlarged lympth node noted, slightly deep to the parotid gland, ( in the cheek) 1.8 cm. A small polyp identified in the Trachea was also noted.

There was a comment on the second page of the report that I am not quite sure what it means and am researching it, so if you know and could help me out on it I would greatly appreciate it.

"There is a small mass-like area of density noted along the posterior aspect of the posterior horn of the right lateteral ventricle measuring 7 mm in maximal diameter. This does not enhance but may represent a small epenymoma"

I am not sure what that means but it concerns me because my mother died of brain cancer just over 2 years ago... I will find out what this means and let everyone know.

Anyhow I am pretty sure this will keep me busy for the next however long. I know "don't go there till you get there" but certain things will drive me nuts if I don't find out. (the researcher in me).

Also I got a phone call from Dr. Seikalys office (my ENT) to tell me that my quadroscopy and biopsy day surgery would probably be on Nov. 27th, so that will be another step to wellness done.

Sunshine and Smiles Val

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

How are you doing now,Val? I am new here to, and I find all of the people here are so kind and helpful. I was just treated for cancer at the base of my tongue and onto the lymph node. I have been finished now for 25 days. I wish you luck, as it sounded like you were sooo scared. I think everyone is at start. I know I was so scared I didn't know what to do!!!

Cindy in B.C. Canada

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

Hi Cindy I am doing fine now, the ball is rolling, it took longer for my diagnosis cause of being alergic to dyes, so could not have a CT?PET scan, the not knowing is the scariest part. I just have a quadroscopy/ biopsies and some other stuff done this last Friday, and got some good news,Dr. Seikaly said that the cancer is contained and small, he took a big chunk of it in the biopsy. He said the scoped from my stomach up and everything else looks great. I have an appointment with him in 2 weeks so we can discuss the next step, and he will finally be able to stage my cancer, it has metastisized to my lymph nodes on the right side so I am hoping that they will be able to do the surgery soon after Christmas. Anyhow I am on my way and since my original diagnosis was September14( lymph node biopsy). It has been a long process for me... I am very possitive and am happy to finally be getting answers Thanks Val

naturenaw
Posts: 26
Joined: May 2009

I also had SCC of the right tonsil and it was spread to multiple lymph nodes on both sides - stage 4.

I am here today to tell you I have survived it, you can do it! Here's a few things you can do...
Since you seem to be a researcher, you'll want to keep in mind on the internet that much of what you see for prognosis is worst case scenario and there's lots of bad stuff out there. If for instance you don't have any of the risk factors (for example, you're not a smoker, etc.) then your prognosis may be much different than what you research. So just keep that in mind when you do your research.

Major suggestion for you to do - EAT LOTS and NOW!!! Gain as much weight as you can BEFORE going into this process of treatments. Think GAIN GAIN!!! The process can take it's toll on your ability to eat for quite a while so think like a bear storing up for the winter!! Perhaps this won't be an issue for you but it was for me since I am small to begin with.

If you do get a stomach tube to help with eating during recovery, still try to eat and drink on occasion and try to use those muscles so they won't "forget" how to swallow and atrophy.

Pray lots and surround yourself with people who matter the most!

Look into IMRT (Intensity Modulated Radiation) instead of standard radiation. It can help save parotid glands, and aid in less dry mouth after this is all done. Although if you have some cancer in the parotid gland, they may just have to treat it harsher anyway. But it's worth asking about. If it's not available where you live (it wasn't available in our town but was available an hour away), ask where is the closest location that does have it.

Keep a sense of humor handy! Celebrate milestones too! My kids (they are young) had a "party" for me when I completed my last radiation treatment, just the kids and husband and my parents and they made a "pin the radiation on the cancer cell" game for us to play (their version of Pin the Tail on the Donkey). The radiation was little lightning bolts and the cancer cell looked like a big ugly black tick with a mean face. i really did get s sense of satisfaction out of seeing that ugly black tick cancer cell with those bright yellow lightning bolts plastered all over it!!

and then pray even more!

Best wishes!

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

that little party and game was brilliant and I commend your whole family who took the time
to do it. This has been their battle as well.
Just wonderful!!

santa6
Posts: 29
Joined: Oct 2009

Val, I was diagnosed June 11, 2009 with same thing - HPV derived. Make sure they test you for that. We did numerous series of biopsies, CAT Scans with dye, PET scans with dye, MRIs, etc and found nothing. Surgeon removed the cancerous lymph in right neck and took 15 surrounding lymphs and another dozen or so deeper biopsies that he could only do while I was out this long. Everything came back clean except of course the cancerous lymph.

All that means is they will have to treat the whole area from just below your eyes down to your collar bones. Means possibly more loss of saliva and or taste than if they could isolate the treatment, but I was told the prognosis is very good.

HodasDaughter
Posts: 2
Joined: Nov 2009

Hello everyone. Two weeks ago I was diagnosed with stage 3 tonsular cancer. Have had my PET and am getting results on Thursday. I am blessed with supportive family and friends and a great team leader in my oncologist at Ingram Cancer Center here in Nashville. Just started reading the comments and am getting great comfort from them. Have a long road but I come from great gene stock and am determined to come out on the other side a winner. Say a prayer for me, please.

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

P Cindy I am a fellow Canadian, from just outside Edmonton Alberta, ( Elk Island) :)

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Hello fellow Canadian!! lol!! My daughter (and Grandchildren) live in Calgary. I sure miss having them around.

I am so glad that you are feeling more comfortable with things. And things are going a bit smoother for you. You'll do just fine!

Do you have any snow yet?

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

Hi there we got hit last weekend, about 15 C Winter is here.... and freezing!!! I guess Calgary even got more then us Val

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