Hi
My sister had surgery a year ago to remove a rare tumour from her cheekbone and her hard pallet. She lost a lot of bone in the operation and was left disfigured is only now coming to terms with it. She is only 30. Now they have discovered 2 lumps in her neck. She had a PET scan which came back normal so we celebrated this weekend then yesterday her doctor told her she has to have an operation on Monday next 8th. They will cut open her neck and remove the two glands they are concerned about and then they will have a pathologist look at them. If they are malignant they will remove all the glands around it and this could mean taking the muscle in her neck. She is completely devastatated. We all are. She is so angry and sad and said last night that she would rather be dead. My mother is finding this very difficult as my father died at a young age from lung cancer and the past year has been so rough on everyone and we feel like we are back to square one again. What can I do to help or to get everyone through this?

NOB,

I don't know that anyone on this site can tell you exactly what you should be doing. But, we can be here as you and your sister go through this very tough time.

Maybe for now all you can do is go to the main site and read and learn all you can so that you can be your sister's best advocate. This way you can support her in two ways. Your strength and your knowledge.

There are many of us here who wish we'd have found this place earlier in our diagnosis and treatment. I believe we all have learned to ask questions and be an advocate for ourselves. It sounds as if you may be the person who needs to do this for your sister. There is a world of information on the main site.

Good luck and we'll be here when you need to vent or ask questions.

Dinah

Dear Nob,

Don't think the worst without knowing what your sister is dealing with. It is never cancer until they test it and say it's cancer. Go on this forum and look up frequentely asked questions or just read some of the older posts. The more knowledge you have about what your sister has the more you will be able to help her. Remember, Knowledge is power! Try and keep her spirits up and be sure to post after her surgery so we know what she's dealing with. The scarist time is now for your whole family. Once you find out for sure what it is you will make a plan with the Doctors on how to proceed.

Remember you can always come to this forum and ask any questions you want to. You will find the members of this forum are a special group of people who want to help in any way we can. This is the best advice I can give you now. I am praying it turns out to be nothing. But remember she will need a caretaker to help her if it turns out to be some form of cancer. It sounds like you will be that person. Please email me if you want to chat, I will help as much as I can, Daniel

Don`t think the worst, yet.........I think a lot of here have learned how precious life is, disfigurment is no big deal in the scheme of things.........we deal with terrible, awful problems, Frank had his whole lower face removed and now w`re dealing cancer of the sinus..........we as human beings can withstand things we never ever thought we could..........Love and Prayers, Packer and Dee

Hi, NOB

The procedure your describing is not as bad as you might be thinking. Many of us have had the Radical Neck Dissection or a Modified Radical neck dissection (which is what you have described). The method her doctors are using is exactly what I went through and is the right thing. Given her cancer history they are being very thorough and not wasting time by doing a needle biopsy first. Please try to comfort her by telling her about us, we have been through this and are just fine. The procedure sounds frightening but she can expect a recovery that is relatively free of pain and cosmetically less a problem than it may seem. You didn't mention what type of cancer she had before, she may be a candidate for radiation after her surgery.

This undoubtedly is a very tough time for her and your family. If you need anything feel free to ask, we are willing to help.

She should NOT be thinking she would rather be dead. Keep thinking good things, there can be lots of life ahead for her!

Hi NOB,

My father in law just had a left radical neck dissection 12 days ago.The first few days were a little painful,but he is doing wonderfully.He had many reservations about the operation before he had it but he did it!It really isn't as horrible as it sounds.I was a skeptic myself,until I saw him after surgery.As a matter of fact he is sitting at my kitchen table right now playing monoploy with my six year old.I wish you good luck with all you have to endure.There are many wonderful people in this forum that can help you and your sister.

Patty

Thank you all so much for your replies. My sister tends to block people out when she is going through anything and I know next week is going to be so difficult for her. Christmas is her favourite time of year and she so wants to be up and about for it. At this stage we are really praying for 'best case scenario' which will be that once he opens her and takes out the glands they will not be cancerous. Her biggest fear right now is that they will take the muscle from her neck and that she will end up with her head resting on her shoulder and that the nerves leading to her lip & tongue will be affected too. I will keep you updated. I know that it is my sister going through all of this but I am finding it very difficult not to be angry and bitter and jealous of people who are not going through anything like this and who are looking forward to a nice normal Christmas. Is that so wrong of me.

Mark is right. My mother had a PEG tube inserted followed by a modified radical neck on the same day. She went home the next day, only one night in the hospital. The disfigurement was minimal and the biggest side effect she experienced was a decreased range of motion in her right arm. She was 78 at the time.

NOB,

No, it is not wrong for you to be bitter, angry and jealous. That is just being human! You have every right to be angry. I just lost my 29 year old daughter to tongue cancer in October. It is not fair and I am very angry and very disillusioned with the medical community in general. It is so hard to understand how we can give a person a new heart or send men into outer space, but we can't get a handle on curing cancer. It sure boggles my mind!

I know it's hard to do, but please try not to panic. The others are right. A neck dissection is relatively simple. Compared to what your sister has already gone through, it will probably be a piece of cake. Depending on how radical the surgery is and how good the surgeon is, there may be some problems with the muscles or nerves, but physical therapy can be a great help. And if it can save her life, it is worth it.

You can vent all your anger and frustration here as much and as often as you want. We are good at "listening", albeit with an electronic ear.

Rainbows & hugs,
Rosie

Hello again NOB (you gotta change that name )

I have to stress again I had the full Radical neck dissection including removal of the Sternocleidomastoid muscle and removal of the nerve that parallels that muscle. I can ASSURE you my head does work fine

There is very little I can't do exactly as I did before surgery. It takes a while to get back some range of motion but it isn't that bad. Recovery time in the hospital is 4 to 7 days (mine was 5 days and I had a tonsil removed at the same time) She can expect to be up and moving in approximately 1 to 2 days, eating is not a problem except that they start food intake slowly because of post surgery (anesthesia) issues. Taste and tongue function is usually not affected by this surgery. If she needs radiation treatments then taste can be affected (usually temporary).

She should be VERY able to take part in Christmas events including eating, singing, talking and celebrating!

Take care

Hello NOB

I've had radical neck dissectons on BOTH sides, and about the only thing I can't do now that I could do before is raise my arms striaght out. Gives the airport security screeners fits.

First neck dissection was accompanied by partial glossectomy, so healing issues were related to the tongue. Second time around was just the neck dissection on the opposite side of the first where they took out 27 lymph nodes. I went in to work for a few hours the day I got out of the hospital like a dummy.

She'll do fine with the surgery. Should be up and about and doing good by Christmas, with lots of stories to tell.
Bob

thank you all for your encouragement. I am so glad I found you all. I will keep you posted on how she is doing after surgery on Monday. I spoke a lot with sinead last night and she said that her prayer is that when they open her and pathologist looks at glands that they will not be cancerous and that they will close her up. She would be so happy with that. Mark, your right, I should change my login name. My name is Norma. NOB is my initials. Rosie, thank you for your words of encouragement. It can't be easy for you and you are so good to reply to my fears. I have to say that after reading all your replies I am feeling a little more positive today.
Norma