Hi,
My name is Kimberly; I'm 40 yrs old and live in North Texas. I was diagnosed with salivary gland cancer May 9, 2013. I've since completed 35 rounds of radiation August 10. I've had my 30 day follow-up and now I'm waiting for my next appointment for cat scans in December. Not knowing whether or not the treatment has worked, this wait is tormenting! I haven't been given a prognosis, the Dr. said this is a type of cancer that like to come back so it's a wait, see and keep watch thing. The type of cancer I was diagnosed with was mucoepidermoid carcinoma of the sub-lingual gland with peri-neural extension. I've read that it's especially rare for cancer to start in this particular gland not to mention the rarity of any salivary gland cancer all together especially at my age...I'm mentally exhausted with all of this. I have yet to meet anyone with this same diagnosis and not having anyone to offer hope is frightening. Is there anyone here that has received the SAME diagnosis and has beaten this monster? I know each case is unique, I just need to know I'm not alone...

Kimberly:
First off, welcome to the forum. I'm torn between responding and not responding as I know you are looking for someone with your same diagnosis.

But, even if you don't find that someone, I'm sure someone here knows something about your cancer that can help you.

Regardless of whether it's the same cancer as you, we all either have some type oral cancer or are caregiver to someone who does. That means we are very supportive because we have all felt what you feel. Even if you just need someone to listen, we are here.

Hang in there.

Tony

Thank you Tony. I really appreciate you for responding to my outcry. You are absolutely right. I do need support from those that are familiar with this roller coaster of emotions. I don't like to trouble my loved ones with this. Although they are extremely supportive, I feel like I'm troubling them by talking about my situation...I'm so afraid! Thank you again. I didn't realize how badly needed a group like this.

Hi Rare jewel

I too cannot comment on your particular diagnosis but will make a comment on what you are feeling which is common to us all.

Alex was the sufferer (and now the survivor) whilst I was the carer. We both found that the uncertainty of not knowing was the hardest part treatment. Waiting for the very first chemo treatment, waiting for the very first radiation treatment, or waiting for the very first set of results after treatment was pure torment.

Consider this (and forgive me as this is going to sound harsh): You may be inadvertently causing your loved ones more stress by not burdening them. If you are not telling them what you are feeling, then you are possibly denying them the opportunity to help you. Let it be their decision, as they possibly think, just as you do, that not knowing is much worse than knowing - even if it is ugly.

Alex too thought he was doing the right thing by not burdening me with his fears and issues. Alex's motivation was mostly to protect me but it achieved the exact opposite by making me feel left out. His unilateral (and wrong) decision not to burden me was almost the undoing of our relationship as I came to resent his apparent refusal to let me help.

There was also a small niggling fear at the back of Alex's mind that if he laid too much of the crap on my plate, I might run for the hills. Until he was made to understand that leaving me in the dark was way worse than anything else he could dish up, we were headed down a very dark path indeed. Luckily, we DID have it out and things worked out for us.

I guess all I am asking is to please consider how your attempt to protect your loved ones might be perceived.

Now all that said, we all understand how stressful life is for you right now and your first priority is yourself. Even if we can't help you with the details of your diagnosis, there is plenty of practical help and emotional support here.

I personally used this forum as a place to vent as well as a place to get a sense of what needed to be done when I had to go into battle on Alex's behalf. I discovered that the craziness that was going on in our life was normal (or at least common anyway ) which was very reassuring for us both.

Hi there... As others have said the word cancer in and of itself has the ability to terrify and paralyze, and it's so hard not to focus on the fear.

However, Cancer doesn't define you and you shouldn't let it. The best way to deal with it is give it it's due, satisfy yourself that you have done the best and all that you can to try and prevent it from coming back, (eat healthfully, go for your treatments, see the top drs at the best facilities, and try and live a healthful life - give up smoking - if you do smoke - etc.. and try to get some 'me' time - exercise, meditate, and enjoy the people around you.) Get to know what is normal in your recovery and don't wait if you have any concerns. Once you have done all of this then you have to say - the rest is up to fate, and don't dwell.

Enjoy the time you have now, because all any of us have is now. Cancer dx , or no. Many people who've never had cancer die daily. So live your life to the fullest. hugs and welcome. And I am sure there is someone here with a salivary gland cancer dx.

Thank you. I took your advise and spoke to my husband today and told him that I was afraid. He was so gentle with me and held me as I cried. This has been extremely difficult...I have always been the caregiver and now I'm the patient, so I clearly understood exactly what you were saying. Thanks again for reminding me of that.

Thank you. In 2011 I was diagnosed with Lupus and was forced to altered my lifestyle. I have never smoked or abused/misused any type of drugs. My eating habits are a lot better but can use more improvement. It's not so much what I'm eating, It's that at times I don't eat. I've never been a big meat eater and when I do eat meat it's mostly chicken, turkey or fish. Rarely fried mainly baked or grilled. I do take supplements and juice. I need to be more consistent when it comes to exercise; I do Tai Chi. Stress is my enemy so I try to avoid it as much as possible and do my best to manage it when it can't be avoided. Tai Chi helps with this. I know death is the inevitable it can't be escaped so I'm not worried about dying but I am concerned how others will adjust whenever it happens. I know no one is ever totally prepared for it when it happens unless hospice is involved. From my experience hospice had a way of making me deal with the loss before it happened and it better prepared me for when death occurred. My desire is too live life one moment at a time and enjoy every moment with my loved ones. So far so good:)

By the way I would love to talk to you more about being a vegan and transitioning to a vegetarian. Thank you for your response. It's definitely thought provoking!

Pm me any time - I am a complete vegetarian - the vegan ism I am still working on. I try not to take medication, unfortunately thanks to chemo or rads (more likely chemo ) I have to have cheese occasionally - I'm highly allergic to the casein in it so it does for me what many laxatives cannot, (sorry if that is too graphic) other than that and the rare egg - I live a pretty vegan lifestyle. I do a lot of organic, avoid white flour products (frankly most bread products), sugar and pretty much all prepared foods. Though I have a passion for some gardien products. having had lupus you are forced to adapt a healthier life style no doubt this puts you in a great situation to fight this. hugs.

I will. During my hospitalization my lupus meds were discontinued. This was a blessing in disguise because I really wanted to come off of those meds. I was taking chemo which suppressed the immune system. It was in pill form and several other drugs including steroids for over 2yrs. Now I'm not taking anything on a daily basis other than my supplements. I'm trying to lose the weight I've gained and regain the self esteem I've lost. Could you recommend anything that would help in my transition? Books, websites, recipes...etc? Thanks for making yourself available I really appreciate it!