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Had my first laryngoscopy today..........scared.....doctor says looks like cancer

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Hello..I have never posted before but have been looking on this site since my doctor said I had a nasopharyngeal mass and one in my voicebox (right arytenoid mass it said). I don't ask enough questions at the doctors office. I had my laryngoscopy today and the doctor said the nasopharyngeal mass was a cyst but that the other one looks like cancer (I was still in recovery-he spoke with my husband). When I had asked him in his office if he could just "take out" instead of biopsy he said the one by voicebox could cause permanent damage to my vocal cords/voicebox and it needed to be biopsied.(smoker 20 years).
Since the "holiday weekend" is here he said he "might" get results on Tuesday, otherwise it would be next Thursday...the waiting is going to be the worst.
I have had a sore throat for just about 2 months.....kept thinking it would go away. Finally went to primary who gave me antibiotics which did nothing........then he sent me to an ENT.
I am such a mess with worry......scared if it is cancer.....I am terrified of treatments.
We decided last month to downsize on house for financial reasons, thinking it would take at least 6 months to sell on this market-it sold on Thursday-at least we got the contract on Thursday..supposed to close mid July. I have not even "looked" at other homes yet as I have not been feeling well. I still have til next Wednesday to "back out" of contract.....if this is cancer I can't imagine trying to find a house AND move in the next 6 weeks.
I would imagine since the doctor said it "looks like cancer" that he knows it is......does everyone find this to be true? Anyone ever hear of arytenoid mass and treatments if it is cancer. I am sorry to "babble on"......just hoping someone can help me.
I think you all are wonderful people on here to help other people through with your own experiences.

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

what, welcome. You aren't babbling, you are where we have all been and we behaved the same way. I hope it is not cancer but if it is, you will find the people here will be a big help to you. I don't know about thearytenoid mass but as for the voice box, you sound exactly like me. I was hoarse for 2 months, we to primary who treated me with antibotics, then went to ent after I didn't get better. Final result, cancer of voice box. I was scared to death. I didn't find this site until after my treatment so I had no idea what to expect. You have found it before trmnts and that will help you know what to expect. I had 35 radiation treaments with the last one being 10/22/09. I had a feeding tube put in as most people do. Most people have it put in before trmnts start as they say it is easier on the body. You will need it if you have radiation because side effect from that is a swollen throat which will prevent you from being able to swallow well. The first problem for me was the neck being burned so bad. It was literally as tho I had walked out of a fire. The pain was awful but Aquaphor sab helped with the pain and the healing of the skin. After a few treatments, I was unable to eat and all nutrition went thru the feeding tube as did my daily medications. When I would try to eat real food, the taste was awful as the radiation also messed up the tastebuds. They started coming back in April, 2010. I also got the tube out in April 2010. I usually eat chicken or ribs with bbq sauce or honey mustard. It gets old but at least I'm eating. I lost 75 lbs during this battle but I am here and I am starting to get strong again and back to myself. Most refer to ourselves now as our "new normal" which is correct. I don't think we ever get back to the way we were before the big c, but the new normal is better than living with C. Come here to find out what others have to say. This is where I found out what questions I needed to ask, such as, what is the primary, is there a secondary, what will trmnts be, etc.
I wish I could help more. The people here will answer all your questions, if possible, and they will be your friend. You can come here for support or if you want to vent, scream, ect. Everyone here has either beeen there or is going thru it so we truly understand what you are going thru. This site got me thru all my hard times, especailly when I felt all alone b/c nobody knew what I was going thru. We are will to be your friend/family and help you thru your battle too. You will survive this!
God Bless,
Debbie

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

We are alike in our symptoms.......my voice had also gone to very "hoarse" in the past 2 months. Right now I cannot speak for one week the doctor said. I wish I had asked more questions before the laryngoscopy...I very rarely go to the doctor and get "anxious" while I am there so I look forward to running out the door instead of asking questions.
I keep thinking (and crying) that these doctors KNOW what cancer looks like and he said that that's what it looks like........so they just have to see biopsy report to say "definite"?? In other words they won't say it is until actual biopsy is done?
I am beyond "terrified" of treatments that I have read about........my sister had cervical cancer which the cancer came back 3 times in other areas......she is now cancer free for 5 years. Thank god. She had radiation and chemo throughout each and I wondered then how she could go through it all (pain and sickness). She is amazing to me.
When I hear about the burns from radiation I say to myself I cannot do it.
I do not deal well with pain AT ALL......and that terrifies me most.
I am 44 years old and have a 19 year old son and 25 year old daughter.
I have seen online people saying "primary" and "secondary".......and don't even know what that means. I am by no means a "stupid" person.......but if he says it is cancer I won't even know what to ask him...........I know that does sound stupid but I know I won't know what questions I need to ask. I wouldn't even know how to go about finding a good oncologist or medical center. I am from New Jersey.
My husband is awesome.......he is scared of course. But a wonderful man.........I am lucky in that respect. I'm afraid our financial situation will be much worse if I do have cancer....if I can't work during treatment.
My mind is in a million places and I don't know what to do.
I made the "mistake" of not wanting to worry my family......so I never told anyone that I was having a problem. I figured it would be benign and they would worry for nothing. The only one that knows is my husband and kids. Now I wish I had told someone......so I could "talk" to someone. I don't think I should go through with the sale of my home.....just not enough time to find someplace and pack and move in the next six weeks.
If it is cancer, do they start treatments right away or is it ANOTHER wait? I doubt I could "focus" on the process of buying another home right now.
Most importantly.....do you find that most doctors do their best to keep your pain at least manageable? I am SO scared of that. When you are actually having the radiation treatment done-does it hurt then while it is being done? Sorry for so many questions........I am just SO scared. My name is Jill

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Jill,

First let me express how sorry I am that you are going through this cancer ordeal. Unfortunately cancer doesn't discriminate - it doesn't care who it affects.

Second, calm down, I know it's not easy but you are going to make yourself sick from worrying. Yes, the waiting is the hardest part and with your diagnosis, treatment schedule and test results you will do more than your share of waiting. But it is all necessary waiting. The doctors want to make sure their diagnosis is correct and they will consult with other doctors (medical oncologist, radiation oncologist and usually and ENT) before deciding what your treatment plan should be.

I can't tell you about pain management, as I never needed pain pills before, during or after my treatment. I do know that the doctors will prescribe you what you need for pain as they DO NOT want you suffering. I was diagnosed one year ago this month with NSCLC in my left lung and two weeks later (after having a PET scan) I was diagnosed with SCC of the larynx/voice box. Originally my ENT thought I would have to have my voice box removed but the oncologist wanted to try radiation and chemo first - thank God!! I had almost completely lost my voice and was afraid I would never talk again. After my first chemo session my voice started to return and it is now back to normal.

I had 35 radiation treatments and 2 days of chemo every three weeks. I was amazed at how well my body handled all of this. There was never any pain, just some redness on my neck, like a bad sunburn, but the doctors gave me special ointment to use which kept it from burning or being painful. It would itch occasionally but that was all. My chemo drug was cisplatin which my doctor called the "big guns" because it is one of the strongest chemo drugs available. I'm pleased to say that I didn't even lose my hair from the chemo, everyone was shocked - especially the doctors and nurses as they were the ones who kept telling me that it would fall out. I really didn't care whether it did or not, all I cared about was getting better. I had some nausea for 2 or 3 days following each chemo session but they have drugs for that also. All in all the treatment was very doable, the one side effect that hit me the worst was the fatigue. I wanted to sleep all the time. After completing treatment for the laryngeal cancer I then had to do Stereotactic Radiosurgery for the lung cancer, this type of radiation treatment is more targeted and does not kill off the good cells like traditional radiation does. They had to use this type of radiation because of the size and location of the tumor, it was very close to the pulmonary vein in my lung.

The cancer center where I received my treatment has a web site and they have a list of questions that you should ask your doctor. I will try to paste the link to another post later as it was very informative - their whole website was incredible.

Now that I have told you about my treatment experiences I also have to tell you that everyone reacts to treatment differently. If you read other posts on this forum you will understand what I mean. Some people have several side effects while others have few if any side effects from the same treatment plan. We can only tell you about our experiences, we can not tell you how your body will react.

You said you had not told any of your family, maybe you should reconsider your decision so you will have a bigger support group of people you can talk to. Having family around you at this time will probably help to calm you down and I'm sure they would want to know what was going on so they could be there for you and your family. As to whether or not you should sell your house at this time, this is another area where your family could help you by offering you their advice or opinions.

Please stay calm Jill, take a deep breath and keep telling yourself - I CAN do this. A lot of us thought we would not survive the treatments and are here now to tell others that it is completely DOABLE!!

I will get back to you with the link I mentioned that has a list of questions you should ask your doctor.

Take care and stay strong - we are all here for you.

Glenna

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Thank you for describing your treatment and side effects from them. I have been reading some on here and people do seem to have different reactions...some worse of course than others. I have been making myself sick over it.....I had to wait 3 weeks for the laryngoscopy-that was nerve wracking in itself....and I knew ahead of time that I would have to wait for biopsy results of course. I do have to take a deep breath and tell myself I can do this if it is cancer......I have been telling myself that I can't do it......that I couldn't go through what some of these people have gone through......that they are awfully "strong" people(hope that is the right word). I think if it is cancer I wouldn't be able to handle the stress of moving on top of it--let alone FIND a house.
I cannot seem to focus right now at all.....I am thinking of a million things at once......which IS the problem. I guess this is relatively "normal" after you are told you may have/have cancer?
That is amazing that you went through all of your treatment and never needed anything for pain..and a blessing for you.
I would really appreciate you sending me that link......if I had known questions to ask before I did the laryngoscopy I might not be feeling so "lost" right now. I would have more information for myself.
I plan on telling my family now-whether it be before or after I get my results I am not sure.
I didn't want them worrying for the whole time with me. I was of course hoping it would be something I would get a prescription for and it would go away.
I know you said fatigue was a big one for you-do you mind if I ask if you worked prior to treatments and if so..were you able to work during treatments?
It is a great thing to know that there are people like yourself who are so willing to help others who are going through treatment or just beginning.Thank you again for sharing your experience with me. Jill

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Jill, you already sound better than you did in your first post ;-) Reading all the info that everyone has given you seems to have helped you relax a little. That's what we are here for - to help others who are just starting this journey. You also seem to be getting a more positive attitude - YES, YOU CAN DO THIS instead of I can't! Your attitude will help you through this if it is cancer, you have to keep telling yourself that you CAN. Another good thing to do is stay away from negative people,you will find many people who will tell you horror stories about "someone" they knew who had cancer. Don't listen to them, unless they actually experienced cancer themselves they have no way of knowing what a cancer patient really goes through. We, on this board, do know first hand and can give you our real life experiences and advice.

Yes, thinking of a million things at once is normal when facing a possible cancer diagnosis. I had to keep writing myself lists of things that I needed to do and questions I wanted to ask because my brain was on overload and I couldn't remember my thoughts for more than 5 minutes.

Regarding working prior to treatment, yes, I was working for a temp service prior to my diagnosis. I had been laid off from my regular job, due to the economy, and the only work available in my area (I live in a very small town that is not close to anything). I kept putting off going to the doctors because I had no health insurance but finally had to break down and go when I had almost completely lost my voice and started coughing up blood. My medical oncologist said I could not work through my treatments so the hospital where I was being treated had their financial assistance department fill out all of the paperwork for me to apply for SSD and Medicaid. This assistance was a godsend as I would not have been able to receive the treatment without some type of financial assistance. The hospital assists a lot of uninsured people every year, they now have it set up so I receive 100% coverage for anything Medicaid does not cover. It was hard for me to accept "charity" at first until all of my friends reminded me that I had worked for over 40 years and always taken care of myself and my family, now it was time for me to accept help. I still feel bad and plan on "paying forward" all the help I have received. I want to do volunteer work at this hospital as soon as I have the strength, I would like to volunteer in the Cancer Center at the hospital so I can help other cancer patients through some of the hard times they are going through. I have read many posts from people on this site who never stopped working through their treatment and I am in awe of all of them.

Someone mentioned selling your house and possibly renting for a while - that may be an option you want to consider especially if this does turn out to be cancer (which I am praying it isn't). Depending on where you have to go for treatment, it may be easier to rent a place closer to the treatment center.

I know everyone here is praying for you that it is not cancer, but if it is we will all be here for you with advice, encouragement and a shoulder to lean on when you need to vent or cry.

I am not going to go into detail on any of the things you will need to do like drink plenty of water, eat as much and as often as possible, etc,etc... until you have received the results of the biopsy. If it isn't cancer then you won't need to know all of the DO's and Don'ts of life during treatment. It really is doable so don't worry yourself about that now.

If you want to send me a private message at any time feel free to do so. I usually check the posts in the morning and again in the evening and will reply as soon as I can.

Take care and stay strong - Glenna

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Do not apologize for asking questions. My dad is going through treatment for tongue cancer and is doing the chemo and rad. He is half way through and doing better then most. His neck is starting to get red in places. His worse is on his ears. We put aquphor lotion really thick on his ears and pure Aloe gel all over his face. He does this three times a day.

His throat is just now starting to bother him. He says he has a little trouble swallowing, needs to take little bits and tiny sips of water. He is determine not to have a feeding tube and at this point the doctor does not think that he will. He also drinks 3-4 Boost or Ensure a day to make sure he keeps his weight up.

He also has had some trouble with mucus in his mouth. He uses a mixtue of 1/4t. baking soda, 1/8t. salt mixed with on cup of warm water. He rinses his mouth off and on all day and all night. This also helps prevent sores form chemo.

He says he feels nothing while getting the rads. The mask his has to wear is tight and uncomfortable but only bothered him once when the nurse dropped it on his head :0

He is only taking over Tylenol for the pain and using Magic Mouth wash for his throat before he eats. The doctor however has told him to ask if he needs something stronger.

As far as the chemo it has not bothered him at all. He made sure to follow the directions closely about the nausea medicine and takes it as directed.

Before he started rads he had to go in for a stimulation session where they made his mask and did another CT. This allows them to program the machine to get everything line up. It took two weeks for them to finish that and then he got started.

I wish you all the best and know that you can get through this and you will get better. My dad was told yesterday that his cancer appears to be almost gone and that it is a mircle that he is responding so well at this point in treatment.

Having family close and being able to talk with someone is important. Know that you can post on this board any time you need to talk or ask a question.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Jill,
Here is the link I mentioned in my previous post

http://nhoh.com/NewlyDiagnosed.asp?documentID=23015&TierID=1312&Section=&ParentLinkID=

If this link doesn’t work just type in www.nhoh.com and it will bring you to the New Hampshire Oncology and Hematology website. This is where I was treated and I absolutely loved their website, I learned so much more about both of my cancers by browsing through all the different information they had on their site.

I hope this will help answer some of your questions and relieve some of your concerns.
Hopefully the hospital or treatment center where you will be treated has a website also so you can read more about your type of cancer and the treatment options.

Sorry but you will have to cut and paste the website address, I don't know how to make it show up as a link that you can just click on. I'm not that computer savvy ;-(

Stay strong and keep posting so we can help you through this nightmare.
Glenna

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Thank you for sending the website to me......I am not that computer savvy either to be able to send a "link" so I am used to copying and pasting myself!!
I went for a walk around the neighborhood thinking about JUST my family(or at least I tried to just think about that)...I can't decide if I should wait for biopsy result at this point or tell them sometime this weekend. I really worry about my mom......she went through it with my sister for a total of 4 times...and she has my stepdad who is in mid-stages of alzheimers...I have a big family who I know would be there for me.....its just now I feel bad I never said anything to them. I know if it was my daughter,niece,whatever (god forbid)I would want to know. Any suggestions? Thanks again for the website...I will let you know once I look at it. Jill

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Your dad sounds like he is doing really well with treatment! Thank you for telling me about how he takes care of himself with mouthwashes and lotions, etc. These are all things that will help me if this is indeed what I am going to have to go through. It's nice that you told me about how they set up machines and how long before they actually start treatment. And I am SO glad to hear that he feels nothing while getting the radiation.....as you can imagine I have thoughts of laying there feeling like I am getting burned. As you have read, I am not good with pain at all, and without knowing anything to expect your mind wanders to how you feel while they do treatments. Yours is the second posting that said they are not taking any pain meds which makes me feel better.........I know not everyone is the same as Glenna had told me but it still calms me some to hear not everyone has a bad time with it. I just wish I was a bit stronger and had some faith in myself?? that I will be able to overcome my fears and do the treatments if I need them. I am sure I will be on here posting.........I hope your fathers treatment continues to go well for him and it sure sounds like he has a great support system at home!! He is blessed!! Jill

MarineE5
Posts: 744
Joined: Dec 2005

Jill,

As Debbie mentioned, this is a wonderful site to find the information that you seek.

I'll try to answer some of your immediate questions about pain. First, the main thing is to stay ahead of the pain during radiation. There are many options to handling this. I can only state what I did and it worked. I was instructed by the Nurses to put Keri unscented lotion on my neck each day, several times to keep the skin soft and it helped keep my neck from blistering and getting tight.

When you receive the radiation, it does not hurt while the machine moves around. It is the accumulation of the Radiation that works on your body that causes the discomfort. The tissue becomes red on the outside and your throat will swell somewhat on the inside. As Debbie mentioned, it will become a bit difficult to swallow, but you should always be able to swallow water. You don't want to loose that motion at all cost. The Peg tube is a plus in the battle to keep your weight up where it needs to be, also the nutrition that you will need to fight this.

As far as the throat goes, there is a home solution that you can make up for rinsing and gargling to sooth the discomfort in your mouth. It is 1 teaspoon of Salt and 1 teaspoon of Baking Soda in 1 quart of room temperature water and mix. Use this to rinse/ gargle as often as you feel you need to. I used this and it worked very good for me.I also increased the amounts to 1 tablespoon of each and it didn't bother me to do so. Others here have used what is known as " Magic Mouthwash " Your Doctor will write a script for it and many here swear by it as well. The Doctors will do everything they can to keep your pain level down.

The next time you go to the Doctors and anytime after that for that matter, take someone along with you to absorb everything that is being said. Take notes and have your questions ready before hand. Ask questions here and see what you might want to check with the Doctors about. Make sure you and the Doctors are on the same page.

How fast things happen depend on the results of any biopsie. I understand that allot is on your mind right now and your mind is racing faster than the cars at the Daytona 500. But, try to calm yourself alittle bit. Stressing out isn't going to change what will happen to you. You CAN do this, as you will find, we have been down this road as well, some here have traveled it more then once. And they return here to give sound advice to ease the road for others with their experience.

My Best to You and Everyone Here

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Your reply was calming, informative and certainly appreciated. How did you know my mind is racing faster than the cars at Daytona 500......was it my posts or is that the way everyone reacts? I know I have myself stressed, worried, scared as I am sure EVERYONE facing this must feel.....but the mind racing I was questioning if it was just me. I am trying very hard to just "focus" on one thing at a time and it is a huge fight with my mind.
Thank you for letting me know how it is that the radiation machine works as far as it being an accumulation.....the burns scare me but like you said, if you use lotions it will lesson that side effect. I am sure there are "many" things that people use to alleviate or avoid some side effects completely.
Another post sent me a website to go to that tells you questions to ask your doctor...90% will be questions I never thought of before I am sure.
I really do need to bring someone with me to the doctor.....and a list of questions. I feel like when I leave the doctors office I don't know much more than when I got there. I am SO hoping that this isn't cancer.....no one answers this one question i have.......if the doctor told my husband it looks like cancer.......aren't they already sure and just need the biopsy to confirm that?
Thank god for people like you who have traveled this road as you said.......and come back on here to help the rest of us......hope you know how much it is appreciated. Jill

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

Jill,
You have a lot going on. To help organize your thoughts, it is a good idea to sit down and make a list of things you have to do : house sale, rent (or buy) another maybe close to a treatment centre if it turns out you need treatment. Re-do the list a few times once things start to fall into place. Also make notes of questions to ask your doctor and rewrite them also to organize best.

Take your not Pad to the Doctor and take someone if you can to help. Take notes so you can remember what happened. Write down your answers as you go. This should take some of the pressure off as the items you write will settle into your mind and organize themselves which should reduce your stress. Keep this note book with you always and use it to jot things down.

I would let my family know if I were you. I didn't and regret it. You can survive this ordeal. There will some rough patches ahead but it's doable.

Scambuster

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Thank you for the advice about a notepad!! It makes sense......as I think of things to ask the doctor......then organize it later to bring to doctor.
It would also help me weigh out my options on what to do as far as selling....I could rent for a while....don't necessarily have to buy another right away.
I think I definitely need to bring someone with me to the doctors......I am hoping it isn't cancer but if it is I think bringing someone will be most beneficial to me......at least for a while.
I am sorry you never told your family and regret it.......I am going to tell mine....just didn't want them worrying if it all came out okay.....now I am not sure I made the right decision on that but I can change that.
This doesn't sound like its going to be an easy road if I do have cancer.....but so many say it is doable. I have to have some faith in myself....Jill

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

Jill, as said here, it is hard to slow your mind down, but please try. You will need to keep yourself well for the treatments if it is cancer. One thing that may help with the doctor's questions is to buy you a small, handheld tape recorder. I used that b/c as you said, it is hard to focus so you probably won't remember to much of what he says. My memory was never too good anyway...lol.
As for the pain, so have it and some don't. I did pretty bad. But aquaphor eliminated it completely. Others said it didn't help them so it is different w/each person. My neck being burned is the only pain I had but I did have a lot of trouble swallowing and that just really got better in April, my last trmnt was 10/22/09. That is also when I was able to eat without the food getting stuck in my throat. I was just back to see the ENT and he said the swelling in my throat has gone down some but it is still pretty swollen deep in the throat which is why food still gets stuck sometimes.
As for you not knowing what questions to ask, I didn't ask ANY because I didn't know what to ask. I'm not a stupid person but I was ignorant when it came to the cancer. It was THIS site that taught me what I needed to ask. Look here for the questions.
For telling your family, I'll just say that like you, if it were one of my family members, I'D WANT TO KNOW B/C I'D WANT TO BE THERE TO HELP THEM. It is a tough decision but put yourself in their shoes. Just something to think about. I do belive them knowing and being able to help you as you travel this road will be a huge help to you.
Jill, we will all being praying for a good result but if it is cancer, YOU WILL GET THRU IT. And we will be here to help answer your questions, listen to you vent, let you cry on our shoulders, and whatever else you may need. So, with all of us here and the big family you have, you will make it. And we will be here to hear that you made it thru your trmnts and are on your road to recovery!
Primary is where the cancer started and secondary is where it spread to. In my case, I only had the primary. Friends, if this is wrong, please post the correct meaning for Jill.
Hang in there, Jill, and take good care of yourself! That is very important. Have faith in yourself, your family and GOD.
God Bless you my friend,
Debbie

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Hi Debbie.....I had a really bad day today.....think I felt better yesterday when I was on the website more. I am frustrated with myself, I am very "edgy", and I am a worrier so that is not helping either. I finally broke down and told my sister......she is of course upset with me that I didn't tell her....she can't understand why I didn't tell her sooner. She is not mad, she is just upset she couldn't be there for me. She is a cancer survivor herself.
Your last treatment was October-and you couldn't swallow well until April?
I am the same way with doctor appointments.......I walk out knowing not much more than when I walked in......I think it would have helped alot right about now if I knew a little more before I had the biopsy. The tape recorder is a good idea!!
Thank you for explaining primary and secondary..........I had no clue what that meant.
Would you mind telling me what aquaphor is?
I am so bad when it comes to pain.....I don't think anyone is ever "good" with pain....I think some have a higher tolerance to it or something.....but it terrifies me.
I am trying so hard to "focus"...but it is so difficult right now.
Being on "voice rest" is not easy either.....I talk when I get too anxious...then it gets sore. Of course I have things I want to "talk" about with my husband....
Thank you for posting to me.......all of you are so helpful and caring......I hope you are well today and always.......Jill

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

Jill, I'm sorry you had such a bad day. I understand how hard it is not to worry about something so serious but please try to calm yourself. It is important for you to save the energy you are burning.
I was also on voice rest. I used a note pad and wrote what I had to say. It gets aggravating but it is better for the throat. You may want to try that. I could swollow the entire time, I just couldn't swollow solid, like food. Like you, I cannot tolorate pain, I am a big, big, big sissy. The aquaphor is a sab that is used for burn patients. It worked wonders on my neck. You can get it at most pharmacies. I'll be honest with you, my neck was so burned that I cried several times from the pain but once I got the aquaphor, it helped immediately. Like I said, it didn't help so others on here so if it doesn't work for you, ask your doctor what else you can try. I know many here have posted others medicines they used that helped them. I didn't understand the primary and seconday either. What I know, I truly learned from comeing to this site. Honestly.
Jill, it worries me a little that you are not able to focus or stop thinking/worrying so much. That takes a lot of energy and you will need your energy. If you like to ocean or birds singing or other relaxing sounds, maybe you could buy a cd of those sounds and just lie down and listen to the music/sounds. Personally, I love the ocean so when I get like that, I listen to my ocean cd and it does help me. Just a thought.
I'm glad you told your sister. I understand her being upset, you're her sister and she loves you. She wants to be there for you. Aren't sisters wonderful! I have 2 and I couldn't imagine my life without them. They still worry sick about me and I'm 7 months post treatment. Your sister knowing and being there with you will help you a lot.
I hope this has helped a little. Keep posting and asking questions, I know someone here will be able to answer them. Remember, you have two families now, your immediate family and US! We will be here for you also. Now, take 5 deep breaths, listen to a calming cd, and try to calm yourself some. I hope you have a much better day tomorrow. :0)
God Bless,
Debbie

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I wanted to welcome you here, but I of course I am sorry that you had to seek this forum out. I am hoping that you don't have cancer, but if you do you have found a veritable font of excellent information, support and people who truly know what you are going thru.

I had SCC HNC stage 4 with an unknown primary. I had a modified radical neck dissection and they removed 23 lymph nodes 3 were cancerous and they also took my salivary gland. I wish I found this forum before my treatment.

It is normal to feel everything you are feeling. When I was so scared of the unknown, I just channeled my stress into making things KNOWN. Doing as much research as I could, getting 3 opinions, and reading, and asking questions. I had been on medication for clinical depression, and General Anxiety disorder since 2006. I started in October of 2008 with a swollen lymphnode. At first I really thought it was no big deal, I waited like a month before I went to the doctor. Once she gave me antibiotics and nothing happenend and the lump got bigger I knew I was in trouble. Believe me I know what it is to worry ones self into a tizzy with the past of my depression and anxiety. I managed to only have a few normal moments of my 5 stages, and kept myself in check with taking my medication, and doing extensive reserch. I also tried to prepare my body before my radiation by trying to gain weight, boost my immune system with juicing and vitamins, and get my mind and faith in sync with a lot of prayer.

Most of us did not know any of these terms either. You can always look thru past topics here on the board using the search function, or post any questions that you have, and we will answer them. Yes treatment is not easy and the side effects are tough, but we are here to tell you that we have come thru the other side.

I wish you the best and I hope that you will keep posting if you need us. I am glad that you have your husband with you. Feel free to send me a private message with any questions you have. Or if you just want to vent. There are many good and caring people here that can help...never feel alone.

When I needed to make decisions on things during treatment, I did a lot of talking and a lot of prayer. I am one of those people that needs to hear myself and talk out loud to make decisions. I have a very small handfull of friends, but I did mostly go thru my treatment on my own which was hard. Lean on your family and talk to them only you can make the decisions that are best for you. I hope you can lean on them during treatment too.

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Thank you for saying that everything I am feeling is "normal".....I can't make a decision on anything right about now.......can't even decide if I should tell my family now or tell them after I get the results at this point.
There are so many terms that people use that I have to try to figure it out by going back over it or looking it up via internet....once I know if I do have cancer I can then research like you did and learn about it and the treatments etc. but just posting here I have already gotten many helpful suggestions.......what a wonderful group of people!!
Going through your treatment mostly alone must have been so difficult.....and frightening.
I have a bad habit of keeping things to myself....worries etc......doesn't do me any good I know that.....just make myself sick.
I wish the doctor had spoken to me yesterday after the laryngoscopy....but I was still "out of it". He just told my husband that the one mass was a cyst and that the other "looks like cancer". Guess they really don't know much until they get the biopsy back....not much information if you ask me but I have never been through this before so maybe that is "normal"??? I don't know how to "private message"..how do you do that?
Thank you again for saying what I am feeling is "normal". Jill

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

Welcome to our little family here on CSN, I am Sorry to hear the news about your cancer but you have found the right place for help and support.

God be with you

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Thank you for welcoming me here.....there are alot of wonderful people on this site. Jill

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

Welcome!! :D

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Thank you!! Jill

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

1. left of page in first box under the csn tab, click on My CSN Space.

2. underneath your screen name you should see tabs. Click on EDIT.

3. From here you can click on About Me. that should be in blue first thing under the edit tab. You can check what applies to you and fill out whatever info you wish.

4. Next, to the right of About Me, you can click on Picture to add a picture of you, or other clip art or picture which will appear with your screen name in the blue box every time you post.

5. Continue to the right to edit Preferrences.

6. Last you can take the Survey if you wish.

7. When you are done with that, you can click back on the My CSN space tab to the left of the Edit tab. From there, you can add things to Expressions. Like pictures, songs, poetry, etc. It will not only stay at your profile, but will also be posted in the expressions gallery for others to see. I am not sure about "Resources". Then the last choice is for if you would like to make a Blog.

Hope this helps.

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

Jill- take note of Scam's advice: think-out the questions you will want to know from your ENT Dr.- stage/severity, condition of larynx post-treatment, etc. If it is C, then you will need to ask, or write, questions of your Onco and Rad- what their treatments will physically bring you, etc. By staying active on this forum, we'll help you with the questions, and the etc.- if it is C.

You asked about pain, and the Drs. Yes- this is 2010, and all you should have to do is be very open with your Drs. on how you are physically handlling things. The C-positive kinda puts one on a different playing field, so to speak, in regards to Drs. and pain meds.

Now, you are at a place we have all been. Your Dr. says it looks like C, but he won't know for certain until the biopsy results. CT and Pet Scans have a lotta false-positives. The time of not knowing if it is, or isn't, C can be very stressful, so what you are feeling is most normal. HOWEVER, don't think for a minute that you can't go thru what we all have. Yes, it do get rough, but the chances of surviving H&N are enormous. If it is C, you will have to come to accept that fact, but also to accept the fact your are gonna survive the battle ahead.

I had two tumors on the left-side of my neck (11/08), and they used Chemo and full Head & Neck Rads to eliminate the tumors, and hopefully destroy any other C that I have. Rather than remove your growth, they might just try to treat you in the same manner.

This is a good place to stay active on, if you have C, as we'll help you stay on top of the game with info learned from experiences, and research. And Prayers, Jill. Welcome, and

Believe

kcass

what a mess's picture
what a mess
Posts: 18
Joined: May 2010

Thank you for welcoming me.......whether or not I have cancer I know I have "fallen upon" a group of people that are truly amazing. I went and got a "personal notepad" to start taking notes......if I have cancer I need it.......if it isn't cancer it might keep me sane until I get the results, and actually help me make some other decisions that I need to in regard to housing situation. Today was not a good day.......I went out for a walk a couple times......felt better later yesterday as I had been on this site quite a bit and was feeling a bit more positive. It is a little more difficult to "talk" to hubby as I am on "voicerest" for a week.......when I get too anxious I talk.......then it gets sore so I stop.
I am going to "try" to tell my sister tonight........I have told no one in the family I am having this problem. I don't even know how to tell her......or if I should just wait for results......but my gut feeling is I should have told them before......she is a cancer survivor of 5 years.......and an amazing person.
THANK you for talking about the pain meds.....since I don't handle pain well I have experienced some doctors who are not too willing to write out scripts......like when I broke my hip in 2007 it took the staff "24 hours" to get back to you. I had broken my hip and broke right through pelvis.......I actually called them one time to give me a "less strong" script as I wanted to be more "aware" and was getting physical therapy in my home. They said I had to wait til I ran out of stronger script before getting a less strong one!!?? I guess all doctors have to be "careful" with scripts.....but I was asking for a LESS strong one!! Guess alot of people are addicted....I was also dealing with an office of "bears"....the only reason I stayed was the doctor was great and worked hard to getting me back on my feet.
While I knew cancer was one of the reasons I was getting laryngoscopy done........now that it is actually a "threat"..that it "looks" like cancer........I am devastated. Not sure I am saying this right....I guess I really didn't believe it was possible? Sorry for babbling.....thank you again for making me feel better about pain meds. Jill

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

Jill, I'm sure your sister will be glad you told her (if you did) so she can help you thru this. I thank God she is a SURVIVOR and I'm sure you will find her knowledge and experience with her battles a blessing as she helps you thru your battle.
Take care and God Bless.
Debbie

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

you can private email someone by adding them to your friend list by clicking on the little person icon by their name by their post. on the upper left hand side on the top you can click on CSN email. click on write a new message and hit the my friends arrow and hit the persons name that you want to write to. Or you can type it in there. Type your message and hit send.

sorry about that. i apparently was not paying attention to what i was doing.

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