Is it always just a matter of time?

Posted By
Anonymous
3/21/2014 11:04am
Activity
Replies: 24

It seems like lately there have been a lot of cases where someone was diagnosed years ago and told they should be ok and just to follow up with regular exams, etc. . . only to have it come back years later at an advanced stage.  Is it only a matter of when (not if) with this disease once you are diagnosed at any stage? 

Let me ask you this question.  If you are years out and DON'T have any type of recurrence, would you really be posting on this website?  Some come back and post a NED anniversary, but most go on and live life.  You see the exceptions here.  At all stages, there are a small percentage that recur.  It's just that on a site like this, those small percentages seem larger than they really are because those are the people looking for help/feedback/info.  So no, it's not just a matter of time.  For a small percentage, they will recur.  The good news is the advance in treatment options if it does recur.  In the last 3 years, big leaps have occurred in treatment options.  So there are more options if someone does have a recurrence.

Best wishes,

Janner

Stage IB since 1992, 3 MM primaries

Anonymous - (3/21/2014 - 2:39pm)

I sure would love to see something from all of those who are years out without any type of recurrence, posting on this website and letting us know!

 

 

 

Anonymous - (3/21/2014 - 3:52pm)

I was diagnosed with Stage IIB in July of 1996.  I had a WLE, no SNB as they were not routinely done back then; no further treatment other than skin checks every 6 mos.  No recurrence; I have had quite a few biopsies over the years with none being more than moderately atypical.  I just check in once in a while to see how folks are doing. 

Anonymous - (3/21/2014 - 4:40pm)

I was diagnosed stage IB in Sept 2009 living life and have went on to have 2 children and no recurrence. Negative SNB. I check in now and then!

Anonymous - (3/21/2014 - 7:00pm)

I was dx in 2005 at stage 1C,  stage 3 in 2009, and stage 4 as of 9/2014. Mets in lungs,chest, leg & brain. I am the other side of the story starting at Stage 1C and now Stage 4.

My feeling is that melanoma is always in your body once you are dx with Melanoma. Why do some progress and other don't. I think it is all up to a person immune system.

The only thing that you can do is Pray.

 

Anonymous - (3/21/2014 - 7:03pm)

That's disappointing, I always thought that the excision surgery "cured" most early stages and cut the cancer out. . to learn once you're dx with melanoma it's always in your body is very scary for sure

Anonymous - (3/21/2014 - 7:04pm)

So it's just waiting for your immune system to ever be down or not as active, to pounce and take control? 

Anonymous - (3/21/2014 - 7:05pm)

Is there some kind of new staging? I have not heard of stage 1C or do you mean stage 1B?

Anonymous - (3/21/2014 - 7:30pm)

That would explain the "only a matter of time". . your body can't keep it at bay forever, if it's always in your body once you're diagnosed, at some point eventually then it will progress. 

My father (born in 1917) used to tell this joke about a very conservative man who had a beautiful daughter.  He worried incessantly that his daughter would get pregnant before she got married.  When his daughter was 18 and not married she came home and told him she was expecting.  He responded "Thank God! Now I don't have to worry about that anymore!".    

It isn't much of a joke but it does illustrate a point.  What if melanoma comes back?  Will you regret the years that you wasted worrying about it?  What if it doesn't return - the more likely scenario - and you die of old age?  There is no way of predicting what will happen with cancer, but it is easy to predict a negative outcome if you worry.

I am not making light of your concerns.  Melanoma is an awful diagnosis but if you find that your anxiety is debilitating and has been for a long time you need to get some outside help - a support group, counseling, something to help you overcome this and enjoy life again.

keeping you in my prayers

Fen

Anonymous - (3/22/2014 - 6:48am)

I think that's exactly right, but I think that's a normal thing with this disease.  I think Kim K said it best recently, "A funny thing happened though.  Becoming stage 4 messed with my head big time since I then had 2 little girls age 2 & 4.  After the dust began to settle, I actually felt a weight lifted off of me because I couldn't get worse than stage IV.  The shoe dropped so I didn't have to worry about it since it was here.....  Weird, but I am more relaxed now than before."

 

 

It's not always a matter of time; there are those of us who have done well long term.  I was 34 years old when I was diagnosed with Stage 4 disease in 1991.  Now, I'm 58 years old and have had no recurrence.  Many complete responses to treatment are durable.

I understand your concern.  I was diagnosed in 1995 stage IIB.  Progressed to stage4 almost five years later and 11 months after that Brain Met.  I am currently 12 yrs. NED>  I don't dwell on it.  I just live life, and keep putting one foot in front of the other.  None of us know what tomorrow brings.  Try to take each day as  a blessing.  Hagn touhg.

Love and Light

Carole

Janners response made me sit back & think - you are right, you only see the exceptions here. Most folks not dealing with recurrences or initial diagnoses are out living their lives. 

Love all the other warriors coming out and posting their years of NED even after a stage IV diagnoses!  

Always have hope, faith & a positive attitude!

Anonymous - (4/2/2014 - 1:02pm)

I don't know, how many times can we keep seeing all of these cases, one after another, of stage 1 in 2008 or 2009, etc...only to now be stage 4. . . can't be these are all "exceptions" when there keep being more and more such cases always popping up

When Larry had primary removed in 2007 the dermatologist told us there was only a 3% chance he would ever have any problems from Melanoma. He had all of the skin checks and we lived our lives.I am very sure there are thousands of people in the 97% of people who are living there lives and know nothing about this board. I am very thankful for the 5 years we had before this disease took over our lives.

Anonymous - (3/23/2014 - 2:54pm)

i'd like to hear stories from some of those 97%

Hello. I think like you. It is only a matter of time unfortunately. Sooner or later the melanoma kills you. And as long as you live is a poor quality of life. Even if you are stage 1 melanoma returns, he's a beast.

My husband was diagnosed when I was 38 years old, Stage 3a in 2012, since that day our life is hell.

His options were to watch and wait or pegylated interferon. The wanted to sacrifice and do pegylated interferon for 2 years.

Your chance to live before was renewed every 6 months. Now at last I PET showed bright areas on multiple nodes, then their ability to continue living was renewed only for 1 month because my husband repeat the pet again in a month. So you think this is life? Do not know if'd be alive for 1 month, then you can make plans? We can not even think about having children ....

this beast is a disease that kills you physically and mentally ....

 

I personally do not know anyone who has had melanoma  and die of another illness. If anyone knows anyone please tell your story.

Regards

gaby

Gaby,

Your pain makes me very sad.  I know it is real and I know I can do nothing to ameliorate it....but I wish I could.  People do die of other things while having a melanoma diagnosis.  Does that it make it better?  I don't see how.  But a man very dear to me on this very forum died not long ago from a heart problem, Audgator.  I liked him very much.  Now he is gone.  But....he is with me still.  That is my hope, that someday....when I am gone....I will still be in someone's heart.  If that happens...then I will live on.  We all come with an expiration date.  Everyone of us. You too.  It may be melanoma...it may be something very different.  However, I've been dealing with melanoma since 2003.  It may take me from this planet someday....but it will NOT take me away...TODAY.  Don't let it take you.  Don't give melanoma one more victory that it may or may not gain.  LIVE each day.  ENJOY each day.  NONE OF US knows when we will have another.  I wish you my very best and hope that you will be able to find some peace.  If you're lucky you and your husband's fight will be long.  That will take strength.  Save yours for the fight you may need to fight.  Sincerely, celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Anonymous - (3/23/2014 - 9:57pm)

My husband was diagnosed with Melanoma 25 years ago. No recurrance.  His father was diagnosed with melanoma and died of a different cause 20 plus years later. So yes, people live on to not have a recurrance and to die of other issues.  That news guy, Sam Donaldson, was diagnosed many years ago with 3b, he had one recurrance in a node, had the nodes removed, no other treatment and he is still around about 2 decades later.  

Anonymous - (3/24/2014 - 2:22pm)

and Senator John McCain

My mother was diagnosed with Stage III melanoma in her 60s.  She died 31 years later of another illness.  No recurrence.  97% of Stage I melanoma patients survive 5 years.  Not much worse than the general population I believe.  I may be wrong but I don't believe that melanoma hangs around the system of all those whose disease is caught early. Rather depressing unsubstantiated presumption.

 

Anonymous - (3/25/2014 - 10:13am)

i certainly hope that is unsubstantiated - would be scary otherwise

Anonymous - (3/25/2014 - 3:35pm)

15% of patients whose lymph nodes are negative for tumor cells at the time of surgical intervention eventually develop metastatic disease. Several theories have attempted to explain this. The parallel evolution theory of cancer development alludes to the ability of cancer cells to disseminate at an early genomic state prior to overt tumor formation. In addition, tumor cells may not actually be disseminated through lymphatics, and the circulatory system may play a larger role than we currently know.