Hello,

My name is Samantha Dominick, and my 71 yr old mum has just been diagnosed with tongue cancer. I am an only child and will be her primary care giver. I am terrified. I live 1hr away from her and have two small children and a husband. I am so afraid that I will not be able to give her what she needs, and that she will suffer because of that. She has been sick for a year, but has refused to see a doctor until recently. We have not found out a stage yet, but the tumor is at the base (under) of her tongue and is 3cmx4cm...she is 5'6 and weighs 84 pounds! We have appointments with a radiology oncologist and an oncologist next week...I'm sorry that this is cominig out so disjointed, but I think that I am in shock...She is already so sick, that I'm am afraid of any treatment. I have been skulking around this sight all day, and I have gotten an imense amount of comfort, so I thought I should just introduce myself. I am so overwhelmed and scared, and I don't know if I can do this by myself. Thank you for being so honest and open, it has helped so much!

Samantha,

I'm so sorry this diease has hit your family. Wherever your mother is being treated (and I hope it's a CCC--I see you're from Boston and Dana Farber is where I would have gone if I could have gone there easily), she (and you) wil need the help of a hosptial social worker as well to be sure she gets the support she needs when you can't be there for her.

It sounds like her being so thin is also going to be of real concern, since people going through treatment for this often lose weight. It sounds like you are going to the appts with her next week and that's good. Take a long a list of questions to ask and a tape recorder so you don't have to be writing down every bit of the answer and you can go back and listen later to be sure you haven't forgotten anything they told you.

There is lots of information and wonderful support available here. Come back and let us know what the doctors say and ask questions or just vent whenever you need to.

Nelie

Samantha,
You aren't alone. I am an only child too and was the primary caregiver to my father as he battled lung cancer a few years ago - so I truly know how scarey the situation can be. I remember being in shock with dad. Being an only child and caring for a parent plus your family is a lot to put on your shoulders. Go ahead and call the oncologist's office and ask for the social service contact (most usually have one) - this person is an angel on earth. There are so many resources available to help our parents. I wasn't aware of many of these agencies and volunteers until after I made myself sick by trying to everything for dad (plus kids, husband & work). You'll be surprised by the support that is available to your mom. Take things one day at a time. Cancer is such a big scarey thing for anyone and no one wants to see a precious loved one in pain. When my husband was diagnosed, a dear friend told me that "Faith is a mighty and powerful sword". What I have learned in the past six months is that the sword gets heavy and you have to allow others to help you hold on to that faith.

Hang in there - and remember you aren't alone. Keep us updated on your mom's health.

Hang in there, put aside your fear, we are here for you 24/7..
Sounds like your mother may have some nutrition issues. Weight loss can be expected and it appears she cannot afford to lose any more weight. A Gastro doc can install a PEG (percutaneous endoscopic gastrostomy),(feeding tube), in short order. It might could occur in conjunction with her initial surgery.... She is going to need the extra nutrition.
Darrell

Samantha,

I'm sorry you've found yourself in this situation, but as you're already discovering from this site, you're not alone. To emphasize a point that Nelie made, I would strongly recommend that your mother be seen at a major cancer center (if she's not already). Since you're in Boston, which is where I received all my treatments, feel free to send me a private message if you want to ask questions specific to this area. There are also several other people regularly on this site who had their treatments in Boston more recently than I did, and can probably give you suggestions as well.

Cathy

Samantha,

Thanks for writing and sharing your story. It can be terrifying and shocking when someone you love gets a cancer diagnosis. I think many of us who are care takers run on pure adrenaline, at least at the beginning.

There are often so many things going on in our busy lives - children and work, for instance- that it seems like it would be impossible to take on another big responsibility. BUT, after the shock and disorientation lifts and the doctors and you and your Mom map out what steps you will take from here, you will find that it is possible to get through it- step-by-step, day-by-day, sometimes hour-by-hour.

I agree with the Darrell who suggests a PEG might be good for nutrition but, at least if my husband is an example, it's a good idea to realize that some people take a while to adjust to the tube. However, it really, really has made all the difference for his weight.

The people on this site have been a wonderful support for me and I would love to have the chance to share with you any info I've learned along the way..
Mary

Thank you all so much. I am so releived that I have found this site. I sat in front of my computer crying, reading your responses because I have been trying so hard to be brave for my mum, and my family. I don't know if I can express my appreciation, so thanks. My mum will be treated at the Peabody Cancer Center which is connected to Dana/Farber, her radiology oncologist is the head of the department, specializing in treating head and neck cancers. I only know this because I am a research junkie, and have been doing the only thing that I can do right now, research. The ENT guy has said that surgery is not an opton, that the tumor is embedded in the root of her tongue and would require complete removal of her tongue (which totally freaked her out!) The treatment course will be radiation and chemo...she has reluctantly agreed to a feeding tube(when it gets bad enough(!?!?). This is actually the first time that I'm saying all these out loud, so thank you for listening. Over the next couple of weeks we'll know more and I think that will help. Just having a plan.

Thank you all again, it really helps to know that I'm not alone.

Sam

Sam, I sent you a private e-mail, but just wanted to post here as well. The feeding tube will be crucial to her to keep her weight and strength up, I am glad she agreed to it. Get good instructions on how to use and care for it, and write down everything you can, so you can refer to it later. Best wishes to you both, keep in touch!
Andrea

Sam
My husband also had base of tongue cancer ,with a very large tumor.
He had chemo/radiation, no surgery, we were assured that the latest test results found no difference in recovery numbers.
Please don`t think because she is not having surgery it puts her at a disadvantage.
There are lots of knowledgeable folks on here who will be more than willing to help you through this.
Take Care
Marica

I can truly understand how you are feeling at this time. When my sister was diagnosed with SCC Stage IV on the tongue, it was the first time I'd heard of oral cancer! Like you, as caregiver, I coped with the shock by spending almost 2 days exclusively on the computer reaserching the subject and many subsequent days getting comfort and clarity from this forum.

My advice would be to try and stay on top of things, prepare questions in advance of your meetings with oncologists and use the wealth of knowledge that this fantastic forum offers to clear your head of anything that's bothering you, even if it seems trivial. Rest assured that you are not alone in this although you are an only child as you've just subscribed to a really big family here.

God Bless
Emily

Sam, Your mum's situation sounds just like mine. I too had a large tumor at tongue base, plus mets to the lymph glands. My treatment plan was chemo and then radiation - no surgery. I am nearly three years past my diagnosis and still doing great.

The treatment will be tough and have some scary effects. Be prepared for the real risk of weight loss - lots. Nutrition is critical. My peg tube saved me repeatedly. Weight loss creates weakness which makes treatment tougher - or impossible. Find some good skilled care for her - to help you. Be involved in the decisions that get made about her care. Ask lots of questions. There is much you can do to help her through this - primarily: Don't try to do it all yourself. You need to be the cheerleader, the coach, the advocate and the memory. If you wear yourself out being all that AND the primary care taker - there won't be enough of you.

Your mum can do this. You can do this. Come to this site often and the knowledgeable folks here will coach and encourage you - and her. Get her on here too if you can. Fight hard. Be strong and be smart. Tom