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Newly diagnosed, scared and confused

klortie
Posts: 13
Joined: Jan 2010

I went to my GP in July and complained about a large lump on the left side of my neck. He prescribed antibiotics. In October I went back and the lump was larger than ever so he referred to an ENT and ordered a CT scan and ultra-sound.
The ENT placed me on antibiotics and biopsied the lump. (the CT-Scan results showed a similar mass on the right side of my neck as well and the ultra-sound revealed an 8mm nodule on thyroid.
The biopsy results revealed no abnormalities so, back on antibiotics for 3 weeks. As for the thyroid, both the ENT and GP felt is was too small to worry about at this time and they would recommend monitoring every 6 months.
After 3 weeks the ENT was surprised that the mass was still there, as large as ever so he recommended removal. This was done Dec. 18th and subsequent pathology report showed squamous cell carcinoma, unknown primary. Subsequent PET scan showed uptake on tonsils, lymph nodes on right side and left side of neck, and back of throat.
Since then, I've seen a radiologist and Onc. A porta-cath and PEG have been installed and last week, the ENT removed my tonsils and also biopsied the back of the tongue, nasal passages, and endopharynx. Unfortunately nothing revealed the source of the primary.
I'm scheduled to begin 8 weeks of chemo (Carboplatin and Taxol) once a week and radiation daily.
I'm under the impression this is pretty standard treatment for this type of cancer, but again, I'm very new at this and am relying on the docs for advice. This site has been a revelation to me with how many good people are going through something similar (and in many cases, much worse). I'm hoping some folks can help me understand what to expect once the treatments begin and post treatment as well. The doctor did say there is still a chance that I may need a neck dissection following chemo/rad, but we will cross that bridge later.
I'm 51, never smoked and am (was) in excellent physical health until this happened.
Any guidance and advice would be greatly appreciated. And thank you to all of you kind folks who take the time to shepard those like me through this.
Ken

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I just commented on another thread about how good the information is on this site. Strait from "survivors" of tongue cancer. You have the tools to be armed for the fight of your life right before you. I do not offer much advice other than to say... do what these people talk about. I did not know how to communicate, medicate, or facilitate the onslaught of feelings and pains that we to befall me. Reading the entries has given me understanding as to where I went wrong and why it took so long for me to get better. I am three years in recovery and could not imagine going back to work as a heavy equipment operator working seven days a week for months at a time. Fortunately I do not want to work ... so I am lucky!.... thanks to my wonderful family I do not have to work either.

I am sorry that you have this cancer. It is doable!! Take care and read... it will help in every step of the way. someone has written about or felt most everything that you are or will be going through. Ask and they will give you information to help you make good informed decisions with your doctors on your way to recovery. Good luck and God Bless!!!

Pearlspapa
Posts: 4
Joined: Jan 2010

Ken,
My husband was diagnosed Sept 21st, after they removed a lump that was hiding cancer in the lymph node. He had the tonsilectomy,the biopsies,PET scan.. apparently the usual steps. They did not locate the primary on him either. From these boards, it appears to be far more common then we were lead to believe. Mike started at 218 lbs, and today, two weeks after his final treatment he is around 174lbs at 6'1". It has been quite a journey. While I don't want to scare you, you do need to know,it is a rough road.
My mantra is now "this may be us up, but it will not beat us"
Mike realized one day in chemo he was sitting across from his old High School Center (circa 1971 Mike was QB) Jim and he both sat a little higher, their chins more determined as they discussed their current situation. Yesterday, I brought Mike home after (12)days in the hospital from, basically radiation poisening. My sister in law, who has been a God send, and I walked down to say hello to Jim. His wife and he were very stoic as they told us the Dr informed them they were no longer trying to "cure" the cancer, just contain it.
I also met a wondeful little woman from the next room. When I asked her how things were going, she gave me a sad smile and said "we are grasping at straws" My point here is; while this may be the hardest thing you will ever do, you CAN do it. and you can live through it. Treatment for Head and Neck cancer is one of the most difficult, but it also has one of the best rates of survival AND CURE. That is what you have to stay focused on Ken, the cure.
Good Luck and God's Speed
Deb....Pearls mama ;)

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

Welcome to CSN we are very glad to have you with us, great post about your husband, please continue to give up-dates on how Mike is doing. I too am 6’1” and was 230lbs at first treatment, I went down to167lbs, I am now 185lbs and doing great.

Take care and may God continue to bless and be with you both.

klortie
Posts: 13
Joined: Jan 2010

Deb:
Thanks very much for the guidance. It is truly appreciated. The story about your husbands high school buddy hit home with me. I was at the Hospital having my PET scan and bumped into an old friend who was there for the same procedure. He informed me he has lung cancer and, unfortunately his prognosis is very poor.
Last week a very dear friend of ours lost his daughter to a drug overdose. These tragedies just serve to remind me not to feel sorry for myself. And then I read some of these posts and realize how truly fortunate and blessed I am to have a strong family support group and the influence and wisdom of all you who have been where I'm headed. It's comforting to know that so many people have been through similar situations and are willing to share with those of us who are scared and confused.
Thanks again and God Bless.
Ken

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

Be strong and keep positive focus on the light at the end of the tunnel, cancer is just a path in life some of us take to get to the other side. Life after caner is just as good a few little things may change but it just makes you appreciate all the things that God has giving us a little more.

I got you in my prayers

klortie
Posts: 13
Joined: Jan 2010

Hondo:
thanks again for the prayers and I like your philosophy about cancer. If there is a silver lining, I hope it does lead me to appreciate what I have much more. I've been doing nothing but thinking and am quickly coming to the conclusion that I have all the important things in place and am ready to face this.
Thanks again for supporting so many of us and I hope I can do the same when this is over.
Ken

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

Hi Ken,

I would question your doctors about the use of Erbitux (Chemo) as it is a target therapy and from my experience and reading what others have endures has fewer and less nasty side effects. Also if you use IMRT (Intensity Modulated Radio Therapy) as opposed to the regular RT, that can be advantageous and lessen the effects to surrounding tissue.

Am am 14 weeks out and doing fine. I had Left tonsil removed and then The IMRT and Erbitux for 7 weeks.

By week 3 I was losing 3 kgs a week, too much so we decided to have the PEG. I was commuting to the treatments but the pain got too bad and I was admitted for the final weeks partly due to the fact i had to live away from home. Weeks 4,5,and 6 were the worst. Week 7 they reduced the dose and made a new mask.

Post treatment was very bad for 2-3 weeks as you 'don't get any better' and will still under the effects of the treatment so be prepared for that. Depression can be an issue to watch out for.

Educate yourself and check all the treatments and medications you get so YOU have a bit of control and let them know how you are doing. Communication between the doctors (and nurses) can go wrong so let them know if you feel there are communication issues.

Keep hydrated, keeping using your faculties as much and as long as possible ie talking, swallowing, eating.

Before RT I would use a nasal spray to clear my nose (you get high levels of mucus during treatments) and that would make for more comfortable breathing with your mask. Relax during RT -they usually have music so zone out and imagine the cancer cell getting chewed up like a pac-man.

Read back on some old threads here to get more info.

Remember you CAN get through this and look back from a very different place you are and will be in.

Take good care and keep in touch with the crew here.

Regds
Scambuster
(Unedited...in a rush)

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

Ken- from what you wrote in opening this thread- it does sound good= found early.
You will get good advice via this forum. I would suggest that you urge your Drs. to be aggressive, but would caution you when it comes to removal beyond that which is common, such as the tonsils. The combo of chemo and rad can eliminate much. Does come with a price, but one that is acceptable. I went thru full head and neck rads with Cisplatin and Flourouracil pumps, and it was not easy- but all went okay, and I'm now a 14-month Survivor, and even returned to work a month after my last rad, in early April. You will get thru this. And heed all advice given on this forum. Nobody, here, is here for any reason other than to help.

Believe.

kcass

Monikat
Posts: 2
Joined: Feb 2010

Hi Scambuster,

I wanted to ask you how you did with Erbitux. My father has tonsil cancer (stage 2, squamous cell carcinoma) and is doing IMRT and cisplatin. Unfortunately he's had some bad effects with the cisplatin. When they gave him this drug, he had severe pains in the kidney, which have subsided and has lost some of his hearing. He is supposed to have a total of 3 chemo treatments with this drug and I'm nervous that he will lose his hearing completely and will have kidney damage if he gets more. I spoke with his oncologist and he mentioned reducing the dosage of the chemo and giving it more frequently or switching to Erbitux. I did some reading on Erbitux and although many posts here say that it has less side-effects and is safer, I read the info on the drug makers' website and am concerned as it can cause cardiovascular/lung problems, such as cardiopulmonary arrest and interstitial lung disease. According to their data, 4 out of 208 people died after usage of this drug from cardiopulmonary arrest or sudden death. That's a scary number to me. And since my dad was sensitive to the cisplatin, I wonder if he would be sensitive to Erbitux also. He has high blood pressure but overall was healthy before this cancer. Can you tell me about any side effects you had with erbitux?
Thanks for any help or comments you might have. This website is wonderful!
Cheers,
monikat

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Hi, Ken
First let me say I am sorry about your diagnoses it is a shock I am sure, but just know you did one of the best things by logging on here. These people are amazing and will help you get through this journey.

My name is Kurt and I have SCC of the tongue (Primary) and 3 lympnodes on right side of neck and 1 on the left. I am 15 days past my treatment of 35 rads and 3 chemo (Cisplatin). I hate to think what these past 2 months would have been like if I had not met these wonderful people.

Right now let me tell you to eat a lot and have your pity party's and get yourself mentally ready to take this head on. Once treatment starts there is no time for pity. You have to be strong and ready to do what needs to be done. I am not going to say it was a picnic but I am fortunate that my time during treatment was not as severe as what I have heard from people here. The reason is simple, I listened to everyone on here and did what they told me to do. For now I will say is start getting on a very regime schedule. I don't know what your lifestyle is but you are going to have to very disciplined. For the last 2 months I have been on a schedule that is 24 hrs a day. I sleep 1 1/2 hrs at a time. I do not go more than that time with out doing something that is helping me fight this horrible disease. From mouth rinses to tube feeding to lotion to swallowing exercises. Seems like I am doing something every ten minutes. I know we will communicate more in the future and don't want to overload you right now. Your in my prayers Ken and I think I can speak for everyone on here that you have many friends now who want only to help you on this journey.

Kurt

klortie
Posts: 13
Joined: Jan 2010

Well, all the support, advice, experience and guidance is an eye opener! Although some of what I've read is scary, most is ultimately positive (once you get through the actual treatment).
I am going to see the radiologist for a simulation tomorrow morning. I am scheduled to get my 1st rad treatment Wednesday the 20th and 1st chemo dose Thursday the 21st!
My cancer center has set me up with a nutritionist who I am seeing Monday. Today I had a dental appointment and got good news! No cavities! Mom would be proud.
Seriously, there is sooo much to consider and take into account regarding overall health. I never would have made the connection with dental health to cancer treatment! But, this is all part of my education about this insidious disease.
And Kurt, although I've already lost about 20 pounds (mostly due to not being able to eat after the initial surgeries) my doctors are hopeful that the extra weight I am carrying will help me through this. Good luck to you and everyone else going through this.
Thank you to everyone who responded to my post and added me to your prayer lists. You are all on mine! I will keep things updated as they progress. But I want to stress how much having this support network out there means to me.
God Bless.
Ken

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

How did it go with the Drs. today? Was a feeding tube suggested? If so, I would advise having done. If so, I would suggest you try the 4.0 forumula- requires fewer feedings/day, and is cheaper.
Have your Drs. talked to you about the prescrips that may be needed? Mainly: magic mouthwash, and whatever they suggest for pain? Going in, Ken, this is critical. And all thru treatment- you must let the Drs. know how you are doing, and let them help you all that they can.

Ken- yes, it is kinda scary. But such is life. All of us have survived it. And we are all here in support of continued life. At this point, my best advice is to take all preparations necessary with the Drs., which includes the meds, and to tunnel your focus to the successful end of treatment. I was able to do so, and only had positive thoughts thru it all- I knew I would emerge from my ordeal successfully; and, even in the roughest of times, I never doubted I would live that fact. You will also live that fact, Ken. There will be times when the going gets rough, though. I lived on morph and ice, and 4.0 formula feedings x 4/day, in weeks 2 and 3, and 5 and 6, with typical two 1/2-tabs of Xanax/day. I experienced what I did, as you will what you are to. Enough said about that. When you have completed your treatment regime, Ken, you will find yourself, I suspect, to be a better person than you are, now. This is also part of the experience we all share, Ken.

Keep us informed on how you're doing, and if you need answers to questions.

Godspeed, Ken. And- Believe.

kcass

klortie
Posts: 13
Joined: Jan 2010

Hi Kent:
i did have a feeding tube inserted on the 6th (also a porta-cath). Thanks for the recommendations onf feeding formula. That's going to come in handy when I begin feeding via the tube.
As for the mouth rinse, they gave us literature suggesting we make our own using baking soda and salt and water. Also, my dentist gave me some fluoride paste to brush on at night.
Thay haven't discussed pain medication at all, but given what you've told me, I'm going to broach the subject myself with them tomorrow. I actually hadn't even thought of that! I guess too much new information to digest at one time. So thanks for the guidance.
And thanks for sharing your experience. While not pleasant, I can only hope I get through this as you did and I am convinced I will conquer this.
Thanks again and have a great day.

Ken

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

You will get thru this and come out on the other side with a great sense of accomplishment. My husband, Bob, was diagnosed the end of July with cancer at the base of his tongue and 1 lymph node. He had a cat scan, biopsy and then was referred immediately to a radiation oncologist and chemo oncologist. He had a feeding tube placed( wasn't given the option not to), a PET scan, and treatment started. Once a week Erbitux and daily radiation. This went on for 7 weeks. He used the feeding tube for the later part of the radiation treatments and for about 2 weeks post treatment. He now eats EVERYTHING altho taste is still compromised. He also has had a 3 month post treatment PET scan that came back totally clean. It is a hellish treatment, but you'll make it thru. There are many people here who will be able to encourage you, pray for you and answer tons of questions. Keep posting! PK

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Ken

I am about to go through the same thing, but am going to have the mass removed first
via the neck dissection. Also tonsillectomy. Hang in there, keep posting and know that
these people, and I with them, are praying for you and they DO care.

Steve

klortie
Posts: 13
Joined: Jan 2010

Steve:
Best of luck with the surgery and treatment. I opted for the treatment first, although I did have a mass on the left side (one remains on the right side) and the tonsils removed. If treatment fails I will then have the neck dissection afterwards.
I will pray for a fast and full recovery for you. Please keep me posted as to how you are doing and I will do the same.
Ken

klortie
Posts: 13
Joined: Jan 2010

PK, Thank heavens for your husband's recovery! That means so much to hear as his situation very much mirrors mine. It's great to hear of his recovery and I'm so happy for you both.
Thank you for the prayers and support and I will pray for your husband's continued good health.
Thank you.
Ken

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

Get it!!!!!!!!!!!!!!!!!! Accept no substitutes. :)

There were times that I numbed my mouth and throat for 20 minutes just to be free of the pain for 20 minutes. It's a little slice of heaven. I had all of the oxycodone that I wanted and I still went to the magic mouth wash. Most pain killers don't really remove the pain they just put it off in the distance and make you indifferent. The Magic Mouth Wash will remove it for a little while and sooth the blisters. Get it.

Also, ask your dentist for about 1/4 of a big bottle of the fluoride rinse that they give you after a cleaning. The gel packs burn and a toothbrush will make you bleed and you will stop doing it. I was able to keep rinsing every day until late in week 5 of the IMRT.

Good job with the feeding tube, I delayed and it wasn't good (20 pounds lost in 2 weeks). Ask for all of your pain meds to be in liquid form so you can inject them through the feeding tube. Don't dose more than 5 OZ of hydrocodone a day or the tylenol will poisen your liver. Switch to a different drug. Be honest withthe docs regarding pain and insist on getting good treatment for it.

Also, always take someone with you to Dr. appointments, they can help you remember all the information you will get. Write down questions you have when you have them and then take the questions with you to the Dr. Appointments. There is only about 1 appointment with each Dr. per week no mater how often you go in, most of the time you will be with technical staff and nurses. Insist on good care and if you aren't getting it change doctors. If you just take what they give you will get what you get.

Wayne
[4 yours past treatment for SCC of the left tonsil and 2 lymnph nodes]

klortie
Posts: 13
Joined: Jan 2010

Hi Wayne:
Wow! Thanks for the tips! As much as I dislike the feeding tube, it seems like it was perhaps the right way to go.
I also did get the fluoride rinse just last night from my dentist so that's good to.
And thanks for the information about the amount of pain killer to dose. My wife does accompany me to all of my appointments. She takes copious notes and (thankfully) is much more organized than I am.
Congratulations on your continued good health and I hope to be a colleague soon!!
Take care.
Ken

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