I am extremely confused. My 48 year old mother was diagnosed in September 2008 with a small tumor on the side of her tongue. By the end of October she was extremely dehydrated and they inserted a feeding tube into her stomach. The tumor had become so large on her tongue that she could barely swallow. At around the same time they did a CT scan and serval lymph nodes were now involved. They had originally scheduled her surgery for December 5, but realized that the cancer was just too aggressive and moved it up to November 10. After the doctor was involved in car accident they then moved it to November 17. She had a 16 hour surgery, they removed almost her entire tongue and used part of her arm to rebuild and also grafted her upper thigh. They did a complete neck dissection and placed a traech in at the time of surgery. They stated that when they went in the cancer had spread even more into lymph nodes on the other side and down closer to her collar bone. They were not able to get all of the cancer out either. Two weeks ago she completed 7 weeks of radiation (5 days a week) and 3 sessions of chemo. She has severe swelling in her face and was having chest pain and they did a lot of tests this past Friday. They said there is cancer in her lungs. They have started her on anti-bodies once a week. I guess my question is what should we expect? It seems to me that it is just too aggressive for her to fight. I want to optimistic, but not naive.

Hi and welcome to OCF

Thats a lot to deal with in such a short space of time,and it must be very difficult to get your head round.If i am honest it doesn't sound the most encouraging news,but in view of the extensive treatment she has undergone the medics must have felt that there was hope for a good outcome when they undertook the surgery.I am surprised they didn't scan her body for spread before the treatment plan was started in view of the already recognized aggressive nature of the disease,but this particular form of cancer can run a very unpredictable course.

What exactly is the "antibody treatment " she is having?

In terms of what to expect,that depends very much on the doctors opinion on what the likely outcome is going to be,so i would get some more detailed information,and then ask the questions.Is this curable,or treatable ,and what are the options?Whatever the answers there will be someone here who's had trodden the same path and will be able to help.

liz

Initially they said it was both curable and treatable. they havent said since. They scanned her entire body before the surgery.

I am not sure what the medication is called but they said that it will not take the cancer away, but hopefully stop it from growing and spreading further.

The thing that freaks me out the most is that this apparently grew while she was being treated.

jrch26,

That sounds horrible all around! By your mother's age, I'm guessing you're young and now faced with a future without your Mom - something I can't even imagine. Please check and see if the hospital or treatment center has a support group for children of cancer patients that you can join. Having a safety net of people that are and have been there might help you face this a little bit more prepared.

My thoughts and prayers are with you and your mother.

- Margaret

Unfortunately that happens.My husband went through all his treatment and at the end of it he had four tumours in his lungs that weren't there when he started.If the cancer has already got into the lymph glands before it is detected then this is not unusual.It sounds as if the treatment she is getting is chemotherapy of some description,as this can be used to slow down or arrest the growth of the lung tumours.Is she at home?and how is she physically? Has she lost a lot of weight?can she take nutrition by mouth or does she have a feeding tube?is she active or is she sleeping a lot?and how does she feel about all this information?

liz

She lives alone and takes care of herself-she wouldnt have it any other way. She takes everything through a peg tube-nothing orally. She lost 35 pounds but has leveled out since she got the eating under control. She sleeps alot but because of her treatment. After hearing this information her answer to me was that she was super sad! that about sums up the feeling of our entire family.

Oh dear

i am sorry you and your family and especially you mum are getting such disappointing news.I think perhaps some emotional help is what you need,and someone to talk to about what is going to happen in the future,perhaps your hospital will be able to help.
liz

I am sorry for your mom's situation but I would like to know who in the world saw her in Sept with OC and thought Dec was OK for surgery?

I'm so very sorry for what you are going through. I imagine I am close to your age, my mom is 52. I can't imagine how you must be feeling. Your mom is lucky to have you posting here. As you are finding out there are some great people here. Have you been able to do anything to deal with the emotions? Is your mom having a hard time with that? It may be too soon yet. It's so much information in the beginning. Are they planning on doing any surgery for the lungs? Has she gone for a second or third opinion?

She saw her PCP in September who referred her to an ENT. The ENT diagnosed the cancer and said that it would require surgery. She decided to go to cancer center to a head and neck cancer specialist. They are the ones that scheduled the surgery for December.

This is something that we still question. would the cancer have spread as much had they operated sooner? I contemplate that over and over. I have finally come to the realization that I could make myself ill with the "what if's"!!

There is also something that bothers me so significantly that i have started to see a therapist. I am unable to go over and be with my mom. I am crippled with fear. i cant handle any of the medical part of it. I have two younger sisters that are able to deal much better than me so she is not alone. My fear is that this disease is going to take her and I wasnt there.

They said that the spots were inoperable. They have said that the drug she is receiving today (for the first time) will hopefully stop the growth -- fingers crossed. this could be an indefinite treatment.

I really do thank all of you for the support. The case worker at the hospital did not prepare me for any of this.

I see you are PA, I'm in NJ but just moved here. Even still I'm close to PA. Where is she being seen? Fox Chase, Penn? Where in PA are you. It may not hurt to get another opinion.

I'm happy that you are seeing a therapist. It took me a long time to fianally do that and I'm much better now that I did. Don't think of the what if's if you can help it...it will just drive you crazy.

So, you are scared to be with her but scared to be away from her also? Do I understand you correctly? IF so, that is hard and I hope your therapist can help you work through that. It's nice that you have sisters. Have you talked to them about how you are feeling? Does your mom know why you are staying away?

My guess is the case worker deals with this everyday and they don't live with it day in and day out. We're ALWAYS here for you. Feel free to send me PM if you want to vent.

They said it's inoperable? But they still think she has a good chance? Who said that and when?

Hello and welcome to OCF. I hope you are able to find strength here to help you thru this with your mom. Its a difficult situation, and very scary for everyone. We will help you with the support you need. Everyone needs a hand thru this.

It might be a good idea to find a therapist to talk to, alot of patients and their caregivers need to speak to someone professionally. Most also need some anti anxiety meds to help them deal with this.

Im sure your mom is just as scared as you are. She needs you just like you need her. Are you able to call her? Maybe start by calling her and then maybe a short visit while other family members are there.

she is being seen at Fox Chase. She has a team of doctors that specialize in Head and Neck Cancer. They met in the beginning and discussed treatment options. Until this week we thought that it seemed like everything was going as planned. She is unable to communicate. I got her a cell phone and we text message everyday. I try so hard to be there. When she was in the hospital after surgery (25 days) i would linger at the doorway. I was never able to sit and look at her face to face. No one seems to understand the physical feeling that I get when I even start to drive over to her house. i know that is completely a mental thing, i just cant get past it. I DO NOT want to regret this for the rest of my life.

Im so sorry you are going thru so much right now. Please seek out some help for yourself, maybe even medication to ease your anxiety.

You havent said your age, but your mom is young so Im thinking you are too. My children probably are around your age, so I do understand how it affects you. I saw the look in their eyes when I told them I was sick and how they looked at me when I was at my sickest.

Im glad to hear the communication is still there even if its texting. At least thats better than complete silence.

Please try your best to visit your mom even if you cant look directly at her. It will do your heart good to visit and just hold her hand and give her a hug. Just give it a try, cant hurt to try to visit.

I also go to Fox Chase. I'll send you a PM so we can discuss the docs.

What is the physical feeling you are experiencing? It sounds like what Christine mentioned...maybe some anxiety? A lot of people here take medicine for that. Not sure if you want/need to go down that road but I think it's important to learn to around your mom. It will be good for both of you.

Please try and relax......no matter how hard it is. We cannot change the situation because if we could, we would. I know what you are going through. I live it everyday as well as many others here. Please don't beat yourself up with "what ifs". That's all I did at first. Things like: "when his dentures were bothering him, why didn't I force him to go to the dentist" when he started to look rather sickly, why didn't I make him go to the doctor" -- I, of course, told him that he needs a good check-up and he would just ignore me. Now I realize, that he is a big boy and should have gave me the green light and I would have called the doctor. I can't change that now. Your mom and my hubby's situation sound very similar. I believe your mom may be on Erbitux--maybe not. Jim is on that now. His recurrence is also in his lungs and jaw. You can see the tumor on his chin when you look at him. He also had a tumor in his mouth, but he had 5 cyberknife treatments at Shadyside Hospital in Pittsburgh and the dr. said that jim was responding well as the tumor in his mouth has shrunk. The treatments are done, but if the treatment worked, it takes awhile for it to be noticed.(cyberknife)

Now listen to me please. You need to visit your mom for yourself and also for her. I remember when I would visit Jim in ICU, I would look at him for 5 minutes and then leave and I would thank god that he was "out of it" as I could barely look at his swollen face and stapled neck without becoming almost hysterical.

When he first came home from the hospital I was so stressed and nervous about everything and felt incapable of taking good care of him, but, he needed me !! Remember, it's easier to try and be relaxed when you are with her. Talk to her in a way like you would talk to anybody else. Try to make your time around her like a normal situation (as best you can) talk, laugh, and even cry if you want to. Don't be frightened, relax please.

Believe me, I've had more bad days than anyone can imagine, but I try to have normal days as best I can. I think Jim feels better when he sees that I am coping.

I want you to know, THAT WE KNOW, what you are going through. All situations are different, all of us are different, but we all share the same story -- One of Hope. . . Claudia

I try to relax. I am only 26 it is really hard. My sisters seem to handle it so well. I know that each person handles it in their own way. I just beat myself up about not being able to step up to the plate.

My mom had a rough night last night. Apparently the first treatment she received did not agree with her and the doctors at Fox Chase told us to take her the ER. Of course I wasnt a part of that. My sisters both took her. My days are filled with constant worry.

What is your first name so that I can address you ? You are only 26 ? I have a son who is 32 and he still lives at home with us. Anyway, he can't handle his dad being sick. Many times he stays at his girlfriends house for 3 or 4 days at a time and I think to myself "how can he not see his dad for that long". I don't say anything to him even though it bothers me because I don't want him living with guilt. Does he care ? Of course, he does and it is very hard on him. But he handles it by not always being there and yes, he is a wonderful person and a great son. A few months ago Jim got very sick and couldn't walk and was urinating all over the place. I am hysterical crying and he was not at home. I was alone with Jim. I called Dan and was trying to relay what was going on in this hysterical voice and his reply on the other end was "DO YOU WANT ME TO COME HOME"? I was so hurt by him asking that question--"do you want me to come home". He naturally was here in a short time and stayed with his dad and I for several hours at the hospital. So, you see, he can't handle much either. You have your sisters and Dan has me, but remember if we weren't around you and Dan would be there, stepping up to the plate. I am sure your mom knows deep in her heart how much you love and care about her and she knows how hard it is on you. Who knows you better than your mother? Remember honey, take one day at a time, even one minute at a time. How is your mom this morning ? Keep us posted. We all care about you. Claudia

My children only saw robin twice during the eight months of his illness.Although not thier dad Rob had been a part of their lives for 15 years,and as he was only 15 years older than my daughter they were friends rather than step parent/step child.
They just could not cope with the great big bear like loudmouth they knew and loved turning into the weak poorly man he became,so i kept them away from it.They rung every day but even so just hearing what he was going through,devastated them. Neither of them had ever seen someone so young and strong die so quickly,and it has left my son with an obsessive fear of ANYTHING to do with his mouth ,neck and glands

I know this is a hard time for you but you must try and pull yourself together not only for your sake but your Mom's and your family. You must prepare yourself for the worse case and hope that it never happens. You already blame yourself for "not being there" (which is wrong) and if you don't gather yourself now you might just fulfill your own prophecy.

My name is Colleen, thank you all!

I have told my mom that it is hard for me to deal with. She tells me sometimes that she thinks I need to get over it, as a few other people have. I swear before this I was a strong individual and could handle most everything that life threw at me. My grandmother was sick with cancer and I took her to her doctors appointments. For some reason with my mom I just cant do it. i hate saying the word cant. my sisters get so mad at me and I feel badly that they have to pick up my slack but I am truly working on it.

I actually just got off the phone with my sister. My mom is better than last night. She hasnt vomited and her fever is down. She is just experiencing a headache. So hopefully she gets better throughout the day!

Hi Colleen. I am so very sorry that you and your family are going through all of this. I lost my mom a year and a half ago to pancreatic cancer. I am 46 and a lot older than you but I completely understand your feelings of anxiety and not being able to see your mom and feeling like you can't deal with it. My older sister moved in with my parents the last two weeks of my mom's life while she was on hospice. I took half days from work and would just about have panic attacks driving down to their house in Delaware every day. I had to physically force myself to be there. I wanted to be there but at the same time, couldn't stand to be there. It was the constant not knowing how she would look, not being able to see her physically changing etc. It was just so difficult. I used to feel so guilty that I just couldn't handle it and that my sister was living it 24/7. Try to explain to your sisters your emotions and that you are doing the best you can do. I would handle my visits by "doing things" while I was there. I would run errands, do laundry etc. It was my selfish way of avoiding being in my mom's bedroom. I think there are no right or wrong ways to handle it. I did the best I could but still wish I would have been there more. Sending you a BIG hug. Wanda

Thank you so much Wanda. I do exactly what you said. I preoccupy myself with little things while I am there. I make all the necessary phone calls and order her medication and supplies. I try to explain to my sisters that I am willing to help in anyway physically possible, I just can not do the hands on helping that they are able to do. I do know that my sisters say they dont understand why I cant help but they know that I am trying to get over this hurdle.

I do have to say the guilt is seeing my mom on average once a week. (sometimes less than that). I do talk to her daily and she knows that I love her.

Hi Colleen,
My name is Angie, and my husband was said to have an inoperable tumor on his left neck (this is a recurrence for us). Well - that was 5 weeks ago - the Erbitux/Chemo/Radiation shrunk the HELL out of that thing. So they will likely be able to take it out. His came on fast too - had clear scans in his neck every 3 months, then all of a sudden, between scans, this node blew up to 6 cm. They are still very hopeful for us that this can be cured. We are at the Helen Graham Center at Christiana Hospital in Wilmington DE. We had a second opinion at Johns Hopkins, but opted for Christiana since they were willing to be more aggressive.

It is ok to feel the way you feel. I got myself to see a doctor since I was having trouble keeping it together. My thoughts are with you and your mom!

Claudia...you have such a warm kind way about you. Your posts are so sweet to Colleen.

Colleen, I do agree with the others. You need to be there with your mom. I can obviously only speak for myself but I know I would feel guilty if I didn't spend time with my mom. Also, it is important that you talk to her just like you used to. Are you very close to her? Did you used to tell her what was happening in your life? If you did, continue to do so. I'm sure she would love it. Since I am the patient, I know how much I appreciate when people don't treat me differently. My future husband, sister, and mom are the only ones who are good that. I encourage you to be one of those people for you mom. Be sad and cry and yell when you're alone or with your therapist!!

Hi Colleen - I have been following this thread and know that you are in a lot of pain over your feelings. I also see that you were the one that took your grandmother to her doctor's appointments. I don't know how long ago that was but for me once I had walked down the caregiver path once, each new time brought on further dread and anxiety for me. I took care of a lot of stuff for my own grandmother when she was ill, was involved a lot with a couple of dear friends during their illnesses and was caregiver for a significant other who died of heart disease and my mother who recovered from 3 major surgeries shortly after my stepfather's death. When my husband was diagnosed I was completely falling apart (something I don't usually do)...I actually left the ENT's waiting room so I wouldn't scare the other patients. If you are overwhelmed by the situation with your mother, see your family doctor. There is no shame in being overwhelmed by anxiety/fear. I am sure he/she will be able to help. The best thing I did for myself -- and my husband and kids --- was to get some anti-anxiety medication.

Cheryl

Cheryl...that is such good thought. Being a patient I realize how hard it is for you but I guess not to the full extent. I usually tell my family I'm happy to be the patient and not in their position.

Colleen:

Thanks for giving us your age. At 26 you can do this! I was under the impression you were about 18, Im so glad you are older than that.

Please take a couple minutes to put some info into your signature, its located under My Stuff, then profile. It helps if you start a new thread to follow who you are.


Since you are already feeling such guilt, please get over this and go to your mother. Everyday you spend away from her is a day you feel badly. Do you live close? Even doing things like picking up meds or getting groceries is a big help. This keeps you busy and limits your visit time, but still allows you face to face contact. In todays world, technology doesnt replace seeing someone in person. Taking the time and effort to go visit means so much. As an adult, you know what you need to do about this situation, its your choice. Where in PA are you located and where is your mom being treated?

Wishing you and you mom all the best.

Hi Colleen. My daughter is 26 and you remind me of her. She had to STEEL herself to even visit me in the hosptial and I knew that so I ended up trying to protect her and not have her there - because I knew how much it bothered her.

She still has not accepted that I have/had Stage 4 cancer. She has not told a soul where she lives and studies about my illness or treatment - despite getting snide comments about time spent at home. Denial is more than a river in Egypt.

I can tell you (from my experience with my Dad), that you will NEVER regret one moment that you spend with your Mom. You might have to "suck it up" to get through it, but it will be soooooo worth it and so very much appreciated by your Mom. Many years hence you will be very proud of yourself for having found the strength.

You can do it, and it will get easier each time. If you need some topic of conversation to ease the initial discomfort, have a topic planned before you arrive. If you both enjoy a game of scrabble or something - arrive armed with that and soon you will find the uneasiness has passed.

You can do it and will never regret that you did.

Donna

Thank you all for your wonderful advice.

This is difficult for me but much more difficult for my mother. I have to get over it and just go. She lives 10 minutes from my house, there really is no excuse. I have talked to my sisters and they have agreed to go over there with me. I have been assured by my therapist that each time I go it will make it easier for the next. The hardest part I think for me is watching her suffer!

I am definitely being proactive. I havent holed up in my bedroom, I am taking medication and talking to a therapist. I am trying to assure that I am doing everything humanly possible to get over my fear so that I can be there for my mom.

Good for you kiddo! You ARE tougher than you think....being proactive is the first step. My husband and I have 7 kids between us...all between the ages of 26 and 36. Some are actively helping out, some are dealing with this thru phone calls and emails. It's a tough situation and you will find your way

Hi Colleen,

I know how hard it is to see somone you love in that position. It is one of the most difficult things I had to deal with as well with my brother. It did take me a little bit to get used to all the caring procedures, but as Suzanne said, you need to continue to talk to her and make her feel like a person. She needs to see you because she needs to know you are ok too. She is worrying about her family just as much as you are worrying about her.

I know you will get over this, but hang in there.

I don't want to sound harsh or blunt but stop thinking about you and start thinking about your Mom. She's the one that needs you and she needs you now.

Hi Sweetie- I think you are just scared and overwhelmed and understandably so. This is a lot to handle for anyone especially someone so young and carefree. My Mom was very sick at just your age and it was so hard. I wanted to be carefree and jus didn't want to have to deal with it even though I of course also didn't want my mom to be sick or go through what she was going through either.

Thinking of you and I'm here to support you during this difficult time! She will feel your love however much you are there for her.

Take Care and be strong.

KATE

David. Naturally I see your posts everyday. I admire one thing about you. You shoot straight from the hip. We never have to read between the lines. You just say whatever you have to say no matter what it is. By the way, I am complimenting you, seriously..........!!!!!!!!! Claudia

I'm pretty blunt in my life and I agree with David. I know what anxiety is like and it STINKS. I know you can't imagine yourself going there without a panic attack or something like it but YOU CAN. Once you do it, you will be so proud of yourself and then everytime it will be easier. I promise...this is true.

Hi Colleen,
I hope this finds you feeling stronger. I appreciate your fears, and I think you are stronger than you have recognized-just being able to admit your fears is a huge step. I think once you start going you will feel more secure about spending time with your mom again. Please know that you are all in my thoughts.
Where are you in PA? I am in Bucks County.
Donna

Colleen: Just wondering about how and how you were making out. Were you feeling better about spending time with your mom? We all hope so, and I pray for your strength.

Donna

I am starting to feel a bit better. My mom and I exchanged text messages about what was going on inside of our heads. She told me not to beat myself up and that she understands what I am going through. It made me a little less tense. I am going over there tomorrow night. Thank you all!

Good for you Colleen. Hug her tight and cherish that moment. Enjoy your time together and we look forward to hearing how it went.

Donna

That is good Colleen. I'm really happy to hear that you started to talk to your mom...that is awesome. Good luck tomorrow..you'll do great. Be strong and when you come home tell us all about it!!

Thanks for posting an update. Its always nice to hear some good news. Have a great visit, and let it be the first of many. I knew you had it in you

Well I did it!! I went over and spent some time with my mom. She was so happy to see me. I held her hand and we cried a bit. I told her that I was sorry that I havent been there and that I am really trying to work on it. She said that she understands! I feel so much better!

Good!
You only have the one mother.

M

Great. Was waiting to hear how you had done. Next thing to do is to go there OFTEN. The first time was the worst, and now that you have made this progress keep going. It will get so very much easier with each visit and you will NEVER regret those visits.

Donna

Thank you all, it has been so wonderful to talk with people that know exactly what is going on. Most people that I talk with have never even heard of oral cancer, so to have a support network has been extremely helpful and I will be forever greatful!

Way to go. I know you made 2 people very happy.

One mother and one dad,, look out for both and don't make this softy tear up like that. some things just get to me and taking care of parents is one

Colleen, Good girl!!!!

So glad you had your visit with your mom. Im sure you both feel so much better. Next visit will be easier and before you know it things will be almost how it was before.

We are here to help you along. Please lean on us when you feel the need to. This board is the best support system out there.

Hi Colleen...I've been away but had been following this thread before I left. I'm so happy to hear you went and that it went well. Keep it up.....this is a time to be together.

You are so right Suzanne! It made me feel good, and like so many people have said that it will get easier with each visit.

On another note..I think that my mom has gotten to the acceptance stage of this latest news. For the first couple of weeks she sat home feeling sorry for herself, she was completely miserable and slept most of the day. Yesterday she went out, did some laundry and took a walk. She also has showered several days in a row. All positive signs to me-I think that she is ready to put up a fight!

Colleen

Thank you for updating about your mom. Its very difficult to explain the feelings you have when given the awful news that you have "the big C". Im glad to hear she has settled into this new phase. Hope your visits are going smoothly.

I think the fact that she is showering and doing laundry are all great signs. That shows she is dealing with it and can still do the day to day things in life. I'm so happy to hear that Colleen. That just warms my heart for you. Please keep us updated with how she is doing. Maybe you can takes walk with her, it's getting nice in our area now. I walk with my mom sometimes and it's really so nice, such an amazing stress reliever. I'm sure she would appreciate it.

I wish I could take a walk with either of my parents or 3 brothers that have passed on. My mother was like she was energized after she finally agreed and believed the Drs in Pittsburgh that she had cancer. They gave her 3 months to live, which she did almost to the minute, but the only thing she would say to us is, I'm not dead yet and like me, she had to stay busy. We walked thru the Cemetry that was next to my house. That's hers and the rest of my families too. I still have 5 lots and hope it's still 5 20 yrs from now.