My little sister (23) was diagnosed with cancer in the right side of her tongue this past December. She endured radiation treatments and brachy (sp?) therapy. Two weeks later, her tumor reappeared on her tongue this time bigger. In May, she had the tumor removed and a flap constructed on her tongue. Her doctor assured my family that she was cancer free at the end of the surgery. In July, she began to experience pain and this past Wed (Aug 4) we found out that her cancer has returned to the same place and now is in her neck and throat, which affects her breathing and eating. She has a trach in and will need it basically forever and a feeding tube in her stomach.

We were told that there are no other surgeries that can be done. Her choices are chemo, experimental drugs, or nothing. She does not want to experience chemo, despite the fact that it could save her life. I fear that she has lost her hope in beating this. Is there anyone who experienced a similar situation and underwent chemo and the chemo worked? How did you keep your hope and will to fight? I desperately want her to fight, but ultimately I want her to be happy and out of pain. Any advice would be welcomed. I don't know if there's anything that I can say to her to restore her hope. I think she feels so defeated by her cancer. I know I can't possibly understand what she is going through. She doesn't know anyone her age who has had all of the surgeries and treatments fail. I think she is getting tired of fighting. How can I help her see that she can still beat this?

God Bless

Dear AMK, Damn this is hard for someone so young......the emotions get all mixed up, and the mental aspects are probably more difficult than the treatments. Coping with the idea that this can be life threatening is hard for everyone. Supporting loved ones during such times, goes beyond just survival. It can mean getting at some level to the point of accepting what might happen and then living each moment to the fullest.

I wish I had a miracle drug to tell you about ......but I don't. I will hope and pray that your sister will do better. Please tell us more about her story.

Dear AMK, Oh my heart is just breaking for your family esp, little sister..How tradgic is this. Cancer doesn't care who we are, what we are, how old we are..It just doesn't care. I promise you this, I will pray and pray and pray again for her.. GOD BLESS YOU!!!!!!! Always, Miss Vicki Lynn..

Dear AMK,

Welcome to the OCF site. I'm sorry to hear what your sister is going through, especially at such a young age -- sadly, there are quite a few people here who were caught totally off-guard with this illness in their 20's and 30's.

Is your sister being treated at a major cancer center? This is extremely important, particularly where her cancer has been spreading so aggressively.

Do you know what type of radiation she had? My understanding is that if she had IMRT at the original site, it would not preclude her from having additional radiation at a different site now (there are others on this board with more experience on this who can probably give you a fuller explanation). It would also help us to know the stage of the tumor that was removed, and whether she also had lymph nodes removed at the time.

I'm not sure I understand the chemo option you mentioned. It seems that with most head and neck cancers, chemo alone is not effective, but it is often used in conjunction with radiation to enhance the overall treatment.

I know it can be so overwhelming when you have to confront a disease like this and try to deal realistically with treatment options in a very short time frame. You will find a great deal of support and information here, and I hope it can give your sister some much needed encouragement. Please stay in touch and feel free to come back with more questions.

Cathy

Oh my gosh, I HATE this horrid disease!!! If there is anything I can do, please let me know, I live in Maryland, maybe not too far from you. Love, Carol

For those of you unaware, AMK is Kim's sister. Kim posted a few weeks back before this latest reoccurance. If you revisit her post, it will give you further details into her situation leading up to now.

AMK - It sounds to me that Kim is terrified of Chemo. She's been through hell and back, and she probably thinks chemo is worse than everything combined.

I opted out of chemo b/c the thought scared me to no end. I had visions of sickly little children hoping to see Fenway Park. Then I went into a Support Group where four young woman, like myself, WERE going through chemo (coincidentally all for breast cancer). After watching them each week, I realized it WAS something I could do. No, it's not fun, but it's also not unbearable.

Is she home from the hospital yet? Perhaps a social worker can visit her room and talk to her. Not try to convince her to do something different, but give her a chance to voice her thoughts and feelings out loud (or typed/written if she cannot talk yet). She can also return to the hospital and talk to them in their private conference rooms.

Another option is meeting/talking face-to-face with someone whose options/chances were little w/o chemo. Your doctors s/b able to find those people. There are individuals on this board that undoubtedly live nearby, have had chemo, and would be willing to speak with Kim.

Because of the major surgeries she went through, she may feel there's not quality of life, even if she did live. Perhaps this isn't something she's realized herself yet. Again, your doctors should be able to find someone that went through major surgeries and are quite happy with their new normal. And again, someone on this board may be willing to volunteer.

With everyone trying to talk her out of her decision, she may subconsciously be trying to rebell against it all. Perhaps by talking to her, getting her to start exploring her true reasons for giving up, she may change her mind.

From what I recall, she has not had radiation to her neck. As Cathy mentioned, this should still be an option to her. I can give you the names/number of Boston head/neck specialists and both Dana Farber and Mass General. Perhaps a phone conversation with someone there can provide you with additional insights and suggestions.

AMK, I would glady talk to her over the phone, even if she's just listening and cannot speak. Or if you have other suggestions, I am entirely willing to participate in them (as I'm sure most board members here would too).

Please keep us posted, we're a very caring bunch and truly want to help Kim however possible.

Sabrina

They have certainly made a lot of progress in chemotherapy since our relatives had it. They can control the nausea (if it even causes it) Even hairloss isn't a given thing. Some new chemos actually target specific molecules.

I am very sad to hear about your little sister. I will keep Kim and the family in my prayers.

AMK,

I too will be praying for Kim and your family. I definately agree with the others who mentioned that she should get more opinions as far as radiation etc...Are her current doctors at a comprehensive cancer center?

Please know that there are many of us that will be praying for her on this site.

Love,
Dani

Thank you all for your wonderful prayers and caring responses. Yes, Kim had radiation only in her tongue. However, the tumor is back again in the same spot and it has spread into her neck and throat, actually causing her to have difficulty breathing.

She is home from the hospital today with some bad news. She knew that she would have a trach (probably for a good while), but the button that would be attached so she can talk does not work because of her flap. She cannot talk, and the doctors don't know if she will able to until the trach is gone.

ALthough we (my family) aren't sure what will be involved in the chemo treatment, Kim has agreed to talk to the doctor on Thurs. She has expert doctors who made very horrible mistakes, even her last doctor. I believe she is being treated at a Cancer hospital. This was her 3rd time there. I am unsure of the stage of the cancer, but we do know that it has spread and is very aggressive. She had her lymph nodes out when she had 2/3 of her tongue removed. It just seems like nothing has worked out for her.

I am questioning the quality of her life. She is 23 and can't talk, eat, or breathe normally. Is this any way for her to live? I just don't know if I can handle losing her. I've heard of so many miracles happening to other people and I pray that one happens for her. I was hoping that if she had a positive "I will not let this cancer get the best of me" attitude, she would beat this, but it doesn't look like there is any way to restore her hope. It really hurts me to watch her going through the pain. I even feel guilty. Although I would never want what she has (no one does), I feel like it should've been happening to me - her older sister, and I would gladly take it from her if I could.

I'm sorry to ramble on. Thank you again for all of your kind thoughts and prayers.

Amk...You are welcome to say all you want here and it's not rambling. I'm so sorry things are so hard for your sister and for you. Watching someone you love suffer is incredibly hard. You mention her attitude...if positive attitudes alone saved people, my husband would still be alive today. Even doctors thought he could beat his cancer because he was fighting it with everything he had. So, encourage your sister to be strong and you continue to be there for her, but also allow her to feel how she feels. I'm sure you are already doing that. You sound like a great sister.

If you are questioning her quality of life, I'd say she is, too. Help her communicate with her doctors if you can by asking some tough questions about her options and the probable outcomes. At this point she is probably feeling quite powerless, which would make anyone want to give up.

I'm sure she is glad to have you in her corner. Keep seeking information on her behalf. Knowledge is power.

You are in my thoughts and prayers,

Christine