Melanie queries about long term survival rates following cancer. Vickie suggests that the condition is perhaps ever present even when one is medically declared "free from cancer". So capricious and pernicious is this disease who can blame them.

But for myself, (and I have 3.5 years to go before hopefully) when given the five years "all clear", I believe I will by that time have beaten it. I firmly believe this, perhaps because I want to believe it, but mainly because I know I could not continue living with an
ever present fear. I have experienced enough of that to date.

Query: How do the oncologists determine, seemingly with certainty, whether a tumor is a primary or other?

A suggestion: A general complaint from cancer sufferers is that we are not sufficiently briefed about post treatment effects. However, we do know that these vary greatly between patients...therefor can we expect doctors to list all possibilities? I remember being fearful when listed with only those most likely to effect me.

I like Bill's decision to suffix each post with the diagnosis, etc of his condition. I'm thinking of doing same.

Always with hope and regards, Fridge

Fridge...

You articulate it well when you say, "I know I could not continue to live with an ever present fear". That is exactly what I've been feeling (and you have sensed it in my written words). Thank you. For what it's worth... My husband and I were told that the five-year mark is a mile stone, but not necessarily all "all clear". However, if YOU believe that, then I believe it right along with you. In 3.5 years, I plan to still be monitoring this message board and we shall celebrate your five years together by swapping notes... It will be "good riddance" to this Satan-disease!

I was told one interesting tidbit from our ENT last visit that I wanted to share with you. He shook my husband's hand for being one-year-cancer-free and made the comment, "90% of recurrences happen in the first year". At face value, that sounded pretty darn good!

Your query about certainty of a tumor being primary... excellent question. My husband did not have a full body scan done at the onset... (It's not done 'til after treatment so far as I know), so I also wonder how they knew for sure that the base of tongue tumor was primary. I'll try to remember to ask the question next visit to his oncologist.

Luckily, our cancer treatment team did a good job in describing post treatment effects. (Although no words or warnings can truly prepare a person for the horrors that you and I both now know about.) After laying it all out on the table, his radiation oncologist said "I'm gonna put you through hell and back, but my goal is to cure you". The only thing they didn't touch on was how radiation to the tongue base can affect the esophagus. (My husband developed a radiation-induced stricture that was so bad he was completely unable to swallow for eleven months. It was a long time before they discovered that it accounted for most of his swallowing issues. It's now open and he's eating fairly well, thank God.)

Goodness, I do go on and on. (I'm a former medical secretary and type as fast as I think, so my notes get lengthy quickly!)

Let me say, Fridge, that I appreciate how you think and the issues you bring to the board. And, I really like your spirit. You're A-okay!

Thinking positively today,

Melanie

Hello to all, I would like to say something about being "all clear" of CANCER. I made it past the "5" year mark. I almost made the "10" year mark. In those "10" years once I had made it past the "5" year mark I had no clue-no idea-no thoughts about CANCER. I had beaten it! I won! I showed it that not everyone dies. Not everyone had a "reaccurance". I was CANCER FREE!! Then I blinked. Then I breathed. Then I was told. I had CANCER again. The fear that I speak about isn't "OH MY GOD" everyday. The fear comes and goes with each MRI or each Pet Scan. When the Doctor's office calls and says we need to book you in for an appt. about your scan. One would have to be a complete fool to not FEAR something that lives inside ones body ready, willing and fully able to end your life. I am a survivor. I do believe that I have BEAT this CANCER 4 times now. After all I was diagnosed with this the first time in 1989 and I am still here. I honestly feel that anything after all this is gravy. By that I mean I have been given more time than I was ever supposed to have had. The first time I was told I had 3-5 years tops. The second time I was given months. Now I am "CANCER FREE" once again like I mentioned in another post. I will take those words and I will run with them. I pray to my GOD that I never ever have it again. The damage that had been done in all these years can never be repaired. My body is broken, I don't look the same. I don't talk the same. I can't do all the things I once did however I am still here. My spirit runs wild. My heart is still full of love. My mind I still can find peace. I can still enjoy the sunrise and the sunsets. I can still see all the beautiful things that God has created for all of us to see. I appreciate everything and everyone more than I could ever imagine. I thougt that I was a good person before CANCER--I am a better person now than I ever was before. WHY--because I was given a second, third a fourth time to get it right...I take NOTHING for granted --and I do mean NOTHING. I live life now--not a day passes that I DID NOT live it! This is my life, my thoughts, MY CANCER. I don't expect anyone else to feel like I feel. On this site I have learned. I listen. I feel. On this site, I can let my hair down, so to speak. I can let it all out and not have to worry, at least that is what I thought. This site is my haven, to vent. To cry. To scream. TO learn. You know what---it is yours also....Vicki Lynn

This message has been edited. Last edited by: Vicki Lynn,

Hi Miss Vicki Lynn,

I did find your cancer story and read every word. Honestly, it made me more afraid than I already was but, somehow, I don't think you'd be at all surprised by that. It is what it is... Your story is mindboggling, brutal, and makes me seriously question the existance of a loving merciful God. I don't know what to do with the anger that continues to build up in me. Your story just made me even more livid! Yes, it was inspirational to read... yet tormenting down to the pit of my stomach that you have endured pure HELL... and my husband has a 50-50 (flip of a coin) chance of a recurrence too, and maybe going through some of the same unspeakable horrors that you did when the cancer returned... and returned. You are a beautiful human being and all this crap should NOT have happened to you... period! God has a lot of explaining to do if I ever make it to the pearly gates! I am totally amazed at your will to live and rise above the hand you've been dealt, all the while being subjected to nothing short of hell on earth by anybody's estimation. Your spirit moves me. The way you reach out to others on this site with straightforwardness and phenomenal "grit", while you deal with your own physical and mental monsters every day. Truth is, (and you seem to have accepted it years ago), you have no choice in the matter. I suppose it's as simple as that. Through unbelievable circumstances and against all odds, you lived. Therefore, you go on. What else can you do but just exactly that. Every new day (be it viewed as a gift or a curse) forces you to "deal with it" as best you know how for another 24... things that 99% of the population would not even begin to be able to comprehend. Let me say that you seem to do it with an almost inhuman degree of resolve (that I personally know nothing about... yet). The strength that you have had to muster up each day for so long must come from a resevoir deep in your soul of souls that the average person never has to tap into in the course of an entire lifetime. Maybe we all have the untapped well of strength, but most are never forced to discover it. While I am in awe of you, I am also crying for you (and others who have suffered beyond words with this imprisoning evil dispicable disease). I am so mad!!! To not have the cancer myself, I have never been so angry at any one thing in my entire life. And I KNOW you feel the same... a thousand times moreso.

I am realizing more and more that the will to live is enormous... immeasureable... probably the strongest, most powerful element of the human brain and spirit (certainly yours) above all others combined, and with very few (if any) limits or boundaries. Perhaps some brilliant person in the world should study the subject... the way I have studied you, Vicki Lynn, through your words of hope, wisdom, and unbridled honesty shared generously on this message board.

Thank you.

Melanie

Melanie,

I would like to discuss my attitude to this wretched cancerous ailment I have experienced. This so in the hope it may be of help to you and your husband.

Even in this forum with its main focus on head and neck cancers we known the levels of seriousness vary greatly between patients. Of course, serious all conditions are, reaching down to the horrendous as experienced by our own Vickie. Like you, I am in awe of the lady.

Like others I suffered the trials of surgery followed by radiotherapy and the punishing aftermath of treatment but was spared chemotherapy. With knowledge from this forum I consider myself among those falling within the lesser scale of seriousness of the disease. I certainly did not feel that in the early days.

My best advice was from my oncologist who said I should attempt to live a normal life as possible notwithstanding all that was happening to me. Good advice indeed and I practiced this to good effect.

I try to consider my present situation NORMAL. I just live with the lack of taste buds, dry mouth, occasional jaw spasms etc. These are on the back-burner as I concentrate getting back as near as possible to my 'old life'. And do you know.....it's working!

Call this attitude either 'hope' or 'positiveness' or both. Whatever, it means little to me so long as I feel as I now do. So, whatever is going to happen to me in the future , at least it is not affecting me now.

I hope others may find this same route.

Many regards,

Sqamous base of tongue cancer.
Diagnosed June 2004
Radiotherapy August/September 2004 (6 weeks)

My mouth cancer arrived in 1990 with surgery in about two months. (It was hard finding a surgeon in Florida who was willing and had a success rate.) My mother who pressed the doctors for information after the surgery was told that I should be able to return to work as others had. But they said the survival rate was only 5 years at that time. It is now 2006, so I guess I beat the odds. I truly do not believe that the doctors know the future for any of us. I really believe that my good outcome was due in part the cysplatin chemo. My mother had breast cancer in 1989 with surgery, radiation and chemo and is still alive today. She never asked how long she would live or if there would be a return of it elsewhere. She is a reader and read everything available at the time and since. She even went to the hospital medical library in Florida and Mobile, Alabama. Since I hve also lived in Little Rock, Arkansas and now Florida again, I find most doctors even at Universities do not know or share the statistics.
Cathy

Cathy,

Wow, you surely have beaten the odds! Your story does lend a lot of hope. As does your mom's. Thanks so much for sharing. It did me a world of good today. May I ask what type/stage of mouth cancer you had, and what surgery did they do? Also, did you get radiation?

Thanks!

Melanie

<<Query: How do the oncologists determine, seemingly with certainty, whether a tumor is a primary or other?>>

I was occult (hidden) primary which was never found. I had a single secondary lump (a node about a small grape size) of whatwas called poorly differentiated Squamous Cell Carcinoma.

My understanding of this was cleared up one day when I said to a radiotherapist, 'Maybe the secondary lump is really the hidden Primary'. 'Oh No' she told me. She went on to explain that this couldn't be as the secondary cells were different to primary cells. That the secondary cells were just that - secondary cells. In my case primary cells were probably microscopic and may have been anywhere hence the wide span of radiotherpay treatment all over neck and face. However as I had so much radiation directed at the tonsil area (3 1/2 years ago)they think now that is possibly where my primary was. I have never been sure whther or not to be glad or sorry the primary was unknown. In some parts of the body it might be much harder to treat the area.

FWIW I was given the choice to have just my neck done or my neck and face. I opted for both as I learnt from reading the internet you have one good chance to get it. This was also what the female radiotherapy consultant said she would have. I think it is worth asking what treatment route would the consultant themselves take.