In Need of Support

Alana,

I know you scared and you are doing what every one of use did when we were first diagnosed – turning to the internet and doing research.  WELL, STOP!  I don't know where you dug up the stats for nodular mel because I couldn't find them specifically for Nodular Mel.    And I know you have been told this before, you are not stage 4 you are Level 4.  Stage 4 means it has migrated to your organs, level 4 is just an old measurement of depth.  Right now all that you really know is that you are probably stage 2c with nodular melanoma, if you are lucky that is as far as it will go. 

The survival rates you are viewing are based on very old data.  They do not reflect all the newer drugs that have been approved in the last 2 years.  So they are not an accurate reflection of what may happen to you or me.  If you want to educate yourself than read all the information available on this site, not survival stats. 

What you should be doing right now, if you want to help yourself,  is reading about and preparing for the probability of a Sentinel Biopsy.  Hopefully that will be clear.  And you can go on with you life.  But take one step at a time.  You'll be in excellent hands. 

Good Luck,

Mary

Stage 3a

Alana,

I know you scared and you are doing what every one of use did when we were first diagnosed – turning to the internet and doing research.  WELL, STOP!  I don't know where you dug up the stats for nodular mel because I couldn't find them specifically for Nodular Mel.    And I know you have been told this before, you are not stage 4 you are Level 4.  Stage 4 means it has migrated to your organs, level 4 is just an old measurement of depth.  Right now all that you really know is that you are probably stage 2c with nodular melanoma, if you are lucky that is as far as it will go. 

The survival rates you are viewing are based on very old data.  They do not reflect all the newer drugs that have been approved in the last 2 years.  So they are not an accurate reflection of what may happen to you or me.  If you want to educate yourself than read all the information available on this site, not survival stats. 

What you should be doing right now, if you want to help yourself,  is reading about and preparing for the probability of a Sentinel Biopsy.  Hopefully that will be clear.  And you can go on with you life.  But take one step at a time.  You'll be in excellent hands. 

Good Luck,

Mary

Stage 3a

Alana,

I know you scared and you are doing what every one of use did when we were first diagnosed – turning to the internet and doing research.  WELL, STOP!  I don't know where you dug up the stats for nodular mel because I couldn't find them specifically for Nodular Mel.    And I know you have been told this before, you are not stage 4 you are Level 4.  Stage 4 means it has migrated to your organs, level 4 is just an old measurement of depth.  Right now all that you really know is that you are probably stage 2c with nodular melanoma, if you are lucky that is as far as it will go. 

The survival rates you are viewing are based on very old data.  They do not reflect all the newer drugs that have been approved in the last 2 years.  So they are not an accurate reflection of what may happen to you or me.  If you want to educate yourself than read all the information available on this site, not survival stats. 

What you should be doing right now, if you want to help yourself,  is reading about and preparing for the probability of a Sentinel Biopsy.  Hopefully that will be clear.  And you can go on with you life.  But take one step at a time.  You'll be in excellent hands. 

Good Luck,

Mary

Stage 3a

Of course you're scared. We've all been there. The shock of hearing your diagnosis is devastating.

I'll share with you what a dear friend shared with me: "You were forced into a sudden change to the routine in your life. No one likes a change in routine. It's scary and disconcerting to lose that control. But once you get used to the new routine your confidence comes back and it's business as usual."  He was right. i was a basket case far worse than you are — even coming to this site freaked me out. But after some few changes I am back to my normal routine. You will be back to yours too.

But you really need to stop reading stuff on the Internet about melanoma for now. Much is scary but much is also outdated. That's the best thing you can do for yourself: stop reading about Melanoma on the web. Go to Facebook, play Farmville, Angry Birds, Candy Crush Saga, whatever — just stay away from medical web sites for now.

If you're not eating, not sleeping, etc., don't be afraid to ask your primary care physician for something to help you cope with your diagnosis. It doesn't have to be permanent, just until you get your life back.

You need to just step back and let the docs at Hopkins do their thing. Seriously, you are at one of the top melanoma centers in the country. Yes, it's nice to be proactive and educate yourself, but it's best to wait until after they've removed the rest of the tumor and staged you.

Hang in there. {{{{Big Hug}}}}}

 

Of course you're scared. We've all been there. The shock of hearing your diagnosis is devastating.

I'll share with you what a dear friend shared with me: "You were forced into a sudden change to the routine in your life. No one likes a change in routine. It's scary and disconcerting to lose that control. But once you get used to the new routine your confidence comes back and it's business as usual."  He was right. i was a basket case far worse than you are — even coming to this site freaked me out. But after some few changes I am back to my normal routine. You will be back to yours too.

But you really need to stop reading stuff on the Internet about melanoma for now. Much is scary but much is also outdated. That's the best thing you can do for yourself: stop reading about Melanoma on the web. Go to Facebook, play Farmville, Angry Birds, Candy Crush Saga, whatever — just stay away from medical web sites for now.

If you're not eating, not sleeping, etc., don't be afraid to ask your primary care physician for something to help you cope with your diagnosis. It doesn't have to be permanent, just until you get your life back.

You need to just step back and let the docs at Hopkins do their thing. Seriously, you are at one of the top melanoma centers in the country. Yes, it's nice to be proactive and educate yourself, but it's best to wait until after they've removed the rest of the tumor and staged you.

Hang in there. {{{{Big Hug}}}}}

 

Of course you're scared. We've all been there. The shock of hearing your diagnosis is devastating.

I'll share with you what a dear friend shared with me: "You were forced into a sudden change to the routine in your life. No one likes a change in routine. It's scary and disconcerting to lose that control. But once you get used to the new routine your confidence comes back and it's business as usual."  He was right. i was a basket case far worse than you are — even coming to this site freaked me out. But after some few changes I am back to my normal routine. You will be back to yours too.

But you really need to stop reading stuff on the Internet about melanoma for now. Much is scary but much is also outdated. That's the best thing you can do for yourself: stop reading about Melanoma on the web. Go to Facebook, play Farmville, Angry Birds, Candy Crush Saga, whatever — just stay away from medical web sites for now.

If you're not eating, not sleeping, etc., don't be afraid to ask your primary care physician for something to help you cope with your diagnosis. It doesn't have to be permanent, just until you get your life back.

You need to just step back and let the docs at Hopkins do their thing. Seriously, you are at one of the top melanoma centers in the country. Yes, it's nice to be proactive and educate yourself, but it's best to wait until after they've removed the rest of the tumor and staged you.

Hang in there. {{{{Big Hug}}}}}

 

Alana,

Not much more to say than to echo the advice you have been given here, but I  wanted to send some supportive thoughts your way! I remember the feeling of panic that I first felt in the weeks following my father's diagnosis in the fall.

After attending second opinion appointments with my father, one of my key takeaways was that some oncologists seem unable to give news in a compassionate or empathetic manner and things they say/their attitudes have to be taken with this in mind — this doesn't mean they aren't working hard to help and don't know what is going on. But one oncologist actually handed us a chart that showed Dad's life expectancy going down over the next five years and tried to explain it to him. As people have mentioned on here, those statistics do not take into account new medications and regardless are incredibly negative and inappropriate to explain when a person has just been diagnosed with cancer and has asked for help dealing with anxiety. Luckily/finally, an oncologist from Stanford told Dad to stop researching online (his point was that the internet is full of scary statistics that are completely overwhelming during the adjustment to the initial diagnosis, not that it would not be helpful or appropriate to research treatments after staging was completed or find supportive communities like this one). From reading your profile on this site, it seems like you have been dealing with one of the oncologists lacking in empathetic communication skills — don't let them get you down!

I want to also echo that it may be helpful to find another medication that helps you relax and get some sleep during this adjustment time. I understand that you have some possible med conflicts but hopefully you can at least find a sleep aid (Ambien or klonopin?) if you are having trouble falling asleep/staying asleep at night. Taking care of yourself, reducing anxiety, and getting enough rest are really important. Like someone else on here said, these meds hopefully won't need to be long term but may be really helpful right now.

Best of luck tomorrow (I think I saw you have a meeting 6/4?). Deep breaths! It's scary and terrible but at the same time it's also a new normal that we have all tried to adjust to and even within this "normal" there are many opportunities for love and joy in life.

Doro

Alana,

Not much more to say than to echo the advice you have been given here, but I  wanted to send some supportive thoughts your way! I remember the feeling of panic that I first felt in the weeks following my father's diagnosis in the fall.

After attending second opinion appointments with my father, one of my key takeaways was that some oncologists seem unable to give news in a compassionate or empathetic manner and things they say/their attitudes have to be taken with this in mind — this doesn't mean they aren't working hard to help and don't know what is going on. But one oncologist actually handed us a chart that showed Dad's life expectancy going down over the next five years and tried to explain it to him. As people have mentioned on here, those statistics do not take into account new medications and regardless are incredibly negative and inappropriate to explain when a person has just been diagnosed with cancer and has asked for help dealing with anxiety. Luckily/finally, an oncologist from Stanford told Dad to stop researching online (his point was that the internet is full of scary statistics that are completely overwhelming during the adjustment to the initial diagnosis, not that it would not be helpful or appropriate to research treatments after staging was completed or find supportive communities like this one). From reading your profile on this site, it seems like you have been dealing with one of the oncologists lacking in empathetic communication skills — don't let them get you down!

I want to also echo that it may be helpful to find another medication that helps you relax and get some sleep during this adjustment time. I understand that you have some possible med conflicts but hopefully you can at least find a sleep aid (Ambien or klonopin?) if you are having trouble falling asleep/staying asleep at night. Taking care of yourself, reducing anxiety, and getting enough rest are really important. Like someone else on here said, these meds hopefully won't need to be long term but may be really helpful right now.

Best of luck tomorrow (I think I saw you have a meeting 6/4?). Deep breaths! It's scary and terrible but at the same time it's also a new normal that we have all tried to adjust to and even within this "normal" there are many opportunities for love and joy in life.

Doro

Alana,

Not much more to say than to echo the advice you have been given here, but I  wanted to send some supportive thoughts your way! I remember the feeling of panic that I first felt in the weeks following my father's diagnosis in the fall.

After attending second opinion appointments with my father, one of my key takeaways was that some oncologists seem unable to give news in a compassionate or empathetic manner and things they say/their attitudes have to be taken with this in mind — this doesn't mean they aren't working hard to help and don't know what is going on. But one oncologist actually handed us a chart that showed Dad's life expectancy going down over the next five years and tried to explain it to him. As people have mentioned on here, those statistics do not take into account new medications and regardless are incredibly negative and inappropriate to explain when a person has just been diagnosed with cancer and has asked for help dealing with anxiety. Luckily/finally, an oncologist from Stanford told Dad to stop researching online (his point was that the internet is full of scary statistics that are completely overwhelming during the adjustment to the initial diagnosis, not that it would not be helpful or appropriate to research treatments after staging was completed or find supportive communities like this one). From reading your profile on this site, it seems like you have been dealing with one of the oncologists lacking in empathetic communication skills — don't let them get you down!

I want to also echo that it may be helpful to find another medication that helps you relax and get some sleep during this adjustment time. I understand that you have some possible med conflicts but hopefully you can at least find a sleep aid (Ambien or klonopin?) if you are having trouble falling asleep/staying asleep at night. Taking care of yourself, reducing anxiety, and getting enough rest are really important. Like someone else on here said, these meds hopefully won't need to be long term but may be really helpful right now.

Best of luck tomorrow (I think I saw you have a meeting 6/4?). Deep breaths! It's scary and terrible but at the same time it's also a new normal that we have all tried to adjust to and even within this "normal" there are many opportunities for love and joy in life.

Doro

Hi Alana,

I had a nodular melanoma on my chest, check out my profile for details, but it was deep and ulcerated.  There was nothing in my path report that said polypoid but from what I understand polypoid is agressive.  Hopefully you caught yours in time where it hasn't traveled through your body.  Unfortunately mine grew for 2 years before I got my WLE, my excision is on my chest with quite a huge scar, he took all the tissue down to the bone and 2cm surrounding the primary, I lost about 1/3 of my right breast.  My WLE was back in June 2011.   My SLN came back negative, but unfortunately my melanoma traveled through my blood system and 1-1/2 years later or so I felt a lump on my arm.  I knew it was melanoma, I got a pet scan and realized it had traveled to my leg, arm, lungs, and brain.  I've had Whole brain radiation and will be going back for SRS (gamma knife) radiation in a week for the brain tumor.  I'm on Zelboraf which has been working for me for almost 6 months.  They have now approved the MEK inhibitor so I may be adding that to my meds, or I'm thinking about going into a trial, there's a lot of breakthroughs happening.  Then there's ipi (yervoy) or bio chemo, or chemo.  

This is my story, we're all individuals with different results to our primaries.  They say if your stage 1 and catch it early you most likely won't recur but there are people that do, then there's nodular, ulcerated polypoid melanomas that are bad and they say you will most likely recur and there are people that don't.  I can tell you that stressing about it will not help, you have been diagnosed with a very scary cancer, now you have to deal with it, stay positive, and try to get into a clinical trial or some doctors are prescribing yervoy before any recurrences to help keep it away.  Someone told me 8 months ago that if your dealt with melanoma in your life right now is the time to have it.  Just a few years ago there wasn;t nearly the options that are available to us now.

My best advice I can offer is take each day at a time, make plans, live your life, don't let your fears control you, and stay positive.  We all are faced with challenges in our lives some are harder then others but we have to fight.  Your getting ahead of yourself, you need to get a pet scan which they will probably do after 6-8 weeks post surgery.  What I don't understand is why you haven't already had the surgery.  After my path report came back, I was in surgery 2 days later!!   

Hang in there Alana, there's plenty of hope for you and everyone else.  Keep us posted on your surgery and scans.  Ask away on the forum, you can't ask too many questions. We're all here for each other. 

Please take care

All my best, Denise

Hi Alana,

I had a nodular melanoma on my chest, check out my profile for details, but it was deep and ulcerated.  There was nothing in my path report that said polypoid but from what I understand polypoid is agressive.  Hopefully you caught yours in time where it hasn't traveled through your body.  Unfortunately mine grew for 2 years before I got my WLE, my excision is on my chest with quite a huge scar, he took all the tissue down to the bone and 2cm surrounding the primary, I lost about 1/3 of my right breast.  My WLE was back in June 2011.   My SLN came back negative, but unfortunately my melanoma traveled through my blood system and 1-1/2 years later or so I felt a lump on my arm.  I knew it was melanoma, I got a pet scan and realized it had traveled to my leg, arm, lungs, and brain.  I've had Whole brain radiation and will be going back for SRS (gamma knife) radiation in a week for the brain tumor.  I'm on Zelboraf which has been working for me for almost 6 months.  They have now approved the MEK inhibitor so I may be adding that to my meds, or I'm thinking about going into a trial, there's a lot of breakthroughs happening.  Then there's ipi (yervoy) or bio chemo, or chemo.  

This is my story, we're all individuals with different results to our primaries.  They say if your stage 1 and catch it early you most likely won't recur but there are people that do, then there's nodular, ulcerated polypoid melanomas that are bad and they say you will most likely recur and there are people that don't.  I can tell you that stressing about it will not help, you have been diagnosed with a very scary cancer, now you have to deal with it, stay positive, and try to get into a clinical trial or some doctors are prescribing yervoy before any recurrences to help keep it away.  Someone told me 8 months ago that if your dealt with melanoma in your life right now is the time to have it.  Just a few years ago there wasn;t nearly the options that are available to us now.

My best advice I can offer is take each day at a time, make plans, live your life, don't let your fears control you, and stay positive.  We all are faced with challenges in our lives some are harder then others but we have to fight.  Your getting ahead of yourself, you need to get a pet scan which they will probably do after 6-8 weeks post surgery.  What I don't understand is why you haven't already had the surgery.  After my path report came back, I was in surgery 2 days later!!   

Hang in there Alana, there's plenty of hope for you and everyone else.  Keep us posted on your surgery and scans.  Ask away on the forum, you can't ask too many questions. We're all here for each other. 

Please take care

All my best, Denise

Hi Alana,

I had a nodular melanoma on my chest, check out my profile for details, but it was deep and ulcerated.  There was nothing in my path report that said polypoid but from what I understand polypoid is agressive.  Hopefully you caught yours in time where it hasn't traveled through your body.  Unfortunately mine grew for 2 years before I got my WLE, my excision is on my chest with quite a huge scar, he took all the tissue down to the bone and 2cm surrounding the primary, I lost about 1/3 of my right breast.  My WLE was back in June 2011.   My SLN came back negative, but unfortunately my melanoma traveled through my blood system and 1-1/2 years later or so I felt a lump on my arm.  I knew it was melanoma, I got a pet scan and realized it had traveled to my leg, arm, lungs, and brain.  I've had Whole brain radiation and will be going back for SRS (gamma knife) radiation in a week for the brain tumor.  I'm on Zelboraf which has been working for me for almost 6 months.  They have now approved the MEK inhibitor so I may be adding that to my meds, or I'm thinking about going into a trial, there's a lot of breakthroughs happening.  Then there's ipi (yervoy) or bio chemo, or chemo.  

This is my story, we're all individuals with different results to our primaries.  They say if your stage 1 and catch it early you most likely won't recur but there are people that do, then there's nodular, ulcerated polypoid melanomas that are bad and they say you will most likely recur and there are people that don't.  I can tell you that stressing about it will not help, you have been diagnosed with a very scary cancer, now you have to deal with it, stay positive, and try to get into a clinical trial or some doctors are prescribing yervoy before any recurrences to help keep it away.  Someone told me 8 months ago that if your dealt with melanoma in your life right now is the time to have it.  Just a few years ago there wasn;t nearly the options that are available to us now.

My best advice I can offer is take each day at a time, make plans, live your life, don't let your fears control you, and stay positive.  We all are faced with challenges in our lives some are harder then others but we have to fight.  Your getting ahead of yourself, you need to get a pet scan which they will probably do after 6-8 weeks post surgery.  What I don't understand is why you haven't already had the surgery.  After my path report came back, I was in surgery 2 days later!!   

Hang in there Alana, there's plenty of hope for you and everyone else.  Keep us posted on your surgery and scans.  Ask away on the forum, you can't ask too many questions. We're all here for each other. 

Please take care

All my best, Denise

I wanted to add that you are NOT a pest!  There were times when I posted on here endlessly.  I needed support from people who understood, and they were certainly to be found here.

As others have said, the information that you get online is often not current and unhelpful.  And with melanoma in individuals, there are so many unpredictable things – genetics, response to a particular treatment, etc., – that it makes projecting an outcome simply impossible.  You just can't say, and neither can any set of statistics, how YOU are going to do.  There is hope, regardless.  There are people on here who, statistically, shoudl have been dead long ago.

We understand how terrifying this can be, this time before you start to do anything to fight the disease and feel like you are just waiting for bad news.  It can be a time of real darkness, feeling powerless, and very bleak.  But you are taking good and important steps, getting good advice, and have the will and drive to fight.  That is all hugely important and will help you greatly.  And please post whenever you feel you need to; also, many of us would be happy to email with you if you would like more support or chances to just talk.

 

Lori, caregiver to Will

I wanted to add that you are NOT a pest!  There were times when I posted on here endlessly.  I needed support from people who understood, and they were certainly to be found here.

As others have said, the information that you get online is often not current and unhelpful.  And with melanoma in individuals, there are so many unpredictable things – genetics, response to a particular treatment, etc., – that it makes projecting an outcome simply impossible.  You just can't say, and neither can any set of statistics, how YOU are going to do.  There is hope, regardless.  There are people on here who, statistically, shoudl have been dead long ago.

We understand how terrifying this can be, this time before you start to do anything to fight the disease and feel like you are just waiting for bad news.  It can be a time of real darkness, feeling powerless, and very bleak.  But you are taking good and important steps, getting good advice, and have the will and drive to fight.  That is all hugely important and will help you greatly.  And please post whenever you feel you need to; also, many of us would be happy to email with you if you would like more support or chances to just talk.

 

Lori, caregiver to Will

I wanted to add that you are NOT a pest!  There were times when I posted on here endlessly.  I needed support from people who understood, and they were certainly to be found here.

As others have said, the information that you get online is often not current and unhelpful.  And with melanoma in individuals, there are so many unpredictable things – genetics, response to a particular treatment, etc., – that it makes projecting an outcome simply impossible.  You just can't say, and neither can any set of statistics, how YOU are going to do.  There is hope, regardless.  There are people on here who, statistically, shoudl have been dead long ago.

We understand how terrifying this can be, this time before you start to do anything to fight the disease and feel like you are just waiting for bad news.  It can be a time of real darkness, feeling powerless, and very bleak.  But you are taking good and important steps, getting good advice, and have the will and drive to fight.  That is all hugely important and will help you greatly.  And please post whenever you feel you need to; also, many of us would be happy to email with you if you would like more support or chances to just talk.

 

Lori, caregiver to Will

Alana,

First of all… NO apologies needed or accepted here for posting often!! These are incredibly difficult days while you are waiting for a plan and for more information. Trying to get your head around what you have been told. I found that early after my disagnosis, I scoured the internet for information…. I also found that while SOME information is helpful, in order to be able to know what questions to ask, etc… too much information can be downright debilitating. The statistics were dire for me back in 2002 when I was diagnosed with amelanotic melanoma ( particularly aggressive). AND, the stats were even more dire in 2005 when I had my first distant metastasis. My point in saying that is — this is 2013 and I am still here and feeling well. Statistics are just statistics- YOU are an individual. This board is a tremendous resource. Ask specific questions and have your list of questions written for the Drs, but delving in to too much on line can just be utterly overwhelming. And, as others have mentioned – the satistics  " they are a changin!!" . The numbers have not caught up with all that is happening on the front of melanoma treatment. Wish I could offer you some more specific information, but these are just a few things I learned early on. I am sorry you do not have strong support, that would cerainly be a help. But, consider this place a circle of family and friends who will offer their ears and their experiences to help you.

One day at a time,

Tina

Alana,

First of all… NO apologies needed or accepted here for posting often!! These are incredibly difficult days while you are waiting for a plan and for more information. Trying to get your head around what you have been told. I found that early after my disagnosis, I scoured the internet for information…. I also found that while SOME information is helpful, in order to be able to know what questions to ask, etc… too much information can be downright debilitating. The statistics were dire for me back in 2002 when I was diagnosed with amelanotic melanoma ( particularly aggressive). AND, the stats were even more dire in 2005 when I had my first distant metastasis. My point in saying that is — this is 2013 and I am still here and feeling well. Statistics are just statistics- YOU are an individual. This board is a tremendous resource. Ask specific questions and have your list of questions written for the Drs, but delving in to too much on line can just be utterly overwhelming. And, as others have mentioned – the satistics  " they are a changin!!" . The numbers have not caught up with all that is happening on the front of melanoma treatment. Wish I could offer you some more specific information, but these are just a few things I learned early on. I am sorry you do not have strong support, that would cerainly be a help. But, consider this place a circle of family and friends who will offer their ears and their experiences to help you.

One day at a time,

Tina

Alana,

First of all… NO apologies needed or accepted here for posting often!! These are incredibly difficult days while you are waiting for a plan and for more information. Trying to get your head around what you have been told. I found that early after my disagnosis, I scoured the internet for information…. I also found that while SOME information is helpful, in order to be able to know what questions to ask, etc… too much information can be downright debilitating. The statistics were dire for me back in 2002 when I was diagnosed with amelanotic melanoma ( particularly aggressive). AND, the stats were even more dire in 2005 when I had my first distant metastasis. My point in saying that is — this is 2013 and I am still here and feeling well. Statistics are just statistics- YOU are an individual. This board is a tremendous resource. Ask specific questions and have your list of questions written for the Drs, but delving in to too much on line can just be utterly overwhelming. And, as others have mentioned – the satistics  " they are a changin!!" . The numbers have not caught up with all that is happening on the front of melanoma treatment. Wish I could offer you some more specific information, but these are just a few things I learned early on. I am sorry you do not have strong support, that would cerainly be a help. But, consider this place a circle of family and friends who will offer their ears and their experiences to help you.

One day at a time,

Tina

Hi Alana,

Like everyone else says – don't look stuff up the stats are not up to date. My husband had amelanotic nodular melanoma. It was pink and the doctors missed it too. They literally thought it was a bug bite. I'm not going to lie, when my husband was diagnosed I had to get on an anti-depressant. I was stressed out of my mind, but then I found this site and I held on to the hopeful stories. There are people out there that are fine with Stage 3 and Stage 4 and they don't post anymore, they are just getting on with life. 

When my husband was diagnosed 6 years ago at Stage 3. They only had interfuron and clinical trials and at stage 4 the choices were IL-2 or clinical trials for IPI. He did advance to stage 4 but he is still here. They have so much more in treatment offering today than they did in 2008. Don't get crazy on the internet and try not to get hopeless before you even know what your dealing with. Make sure someone goes with you to your appointments because I noticed my husband due to stress was not really hearing what the doctors were saying. You need a strong advocate by your side to help you make good choices. The people on this site know exactly how you feel, so don't worry about how many times you post.

Good luck!

Rebecca

Hi Alana,

Like everyone else says – don't look stuff up the stats are not up to date. My husband had amelanotic nodular melanoma. It was pink and the doctors missed it too. They literally thought it was a bug bite. I'm not going to lie, when my husband was diagnosed I had to get on an anti-depressant. I was stressed out of my mind, but then I found this site and I held on to the hopeful stories. There are people out there that are fine with Stage 3 and Stage 4 and they don't post anymore, they are just getting on with life. 

When my husband was diagnosed 6 years ago at Stage 3. They only had interfuron and clinical trials and at stage 4 the choices were IL-2 or clinical trials for IPI. He did advance to stage 4 but he is still here. They have so much more in treatment offering today than they did in 2008. Don't get crazy on the internet and try not to get hopeless before you even know what your dealing with. Make sure someone goes with you to your appointments because I noticed my husband due to stress was not really hearing what the doctors were saying. You need a strong advocate by your side to help you make good choices. The people on this site know exactly how you feel, so don't worry about how many times you post.

Good luck!

Rebecca

Hi Alana,

Like everyone else says – don't look stuff up the stats are not up to date. My husband had amelanotic nodular melanoma. It was pink and the doctors missed it too. They literally thought it was a bug bite. I'm not going to lie, when my husband was diagnosed I had to get on an anti-depressant. I was stressed out of my mind, but then I found this site and I held on to the hopeful stories. There are people out there that are fine with Stage 3 and Stage 4 and they don't post anymore, they are just getting on with life. 

When my husband was diagnosed 6 years ago at Stage 3. They only had interfuron and clinical trials and at stage 4 the choices were IL-2 or clinical trials for IPI. He did advance to stage 4 but he is still here. They have so much more in treatment offering today than they did in 2008. Don't get crazy on the internet and try not to get hopeless before you even know what your dealing with. Make sure someone goes with you to your appointments because I noticed my husband due to stress was not really hearing what the doctors were saying. You need a strong advocate by your side to help you make good choices. The people on this site know exactly how you feel, so don't worry about how many times you post.

Good luck!

Rebecca

Hi,

First of all, I know its hard, but you have to stop obsessing.  You have think you need to fight and beat it.  You need to be agressive about your disease. 

We all go through our response when we hear the news, but a level 4, not stage 4 is pretty good, when it comes to finding out you have this disease.  I have a friend who was a level 4 and she learned about this in 2002 and she had surgery and has not had any further disease since. 

I learned about my disease in 1984 and I had two small children.  I was upset, but I handled it with denial until my recurrence in 2005 then I got angry.  Not toward anyone, but the disease and I think I just didn't want it to get the best of me. 

I wish the best of luck to you and hopefully you'll have a full life. 

Cindy VT

Hi,

First of all, I know its hard, but you have to stop obsessing.  You have think you need to fight and beat it.  You need to be agressive about your disease. 

We all go through our response when we hear the news, but a level 4, not stage 4 is pretty good, when it comes to finding out you have this disease.  I have a friend who was a level 4 and she learned about this in 2002 and she had surgery and has not had any further disease since. 

I learned about my disease in 1984 and I had two small children.  I was upset, but I handled it with denial until my recurrence in 2005 then I got angry.  Not toward anyone, but the disease and I think I just didn't want it to get the best of me. 

I wish the best of luck to you and hopefully you'll have a full life. 

Cindy VT

Hi,

First of all, I know its hard, but you have to stop obsessing.  You have think you need to fight and beat it.  You need to be agressive about your disease. 

We all go through our response when we hear the news, but a level 4, not stage 4 is pretty good, when it comes to finding out you have this disease.  I have a friend who was a level 4 and she learned about this in 2002 and she had surgery and has not had any further disease since. 

I learned about my disease in 1984 and I had two small children.  I was upset, but I handled it with denial until my recurrence in 2005 then I got angry.  Not toward anyone, but the disease and I think I just didn't want it to get the best of me. 

I wish the best of luck to you and hopefully you'll have a full life. 

Cindy VT

Dear Beautiful Lady,
I am not sure which melanoma is actually the worst. I was told that mine was one of the worst and fastest spreading when I was finally diagnosed in 2006 after 3 ½ years of complaining to my GP and being misdiagnosed and then being slow rolled for another 8 months by general surgeons. I strongly suspect I was either stage III or IV before I ever saw any surgeon. I was told in February 2007 that I would have major breathing problems within 30 days and would be very unlikely to be here in six months. Was given less than a 50% survival odds for 6 months! Read my profile.
Yes, you will be quite scared for at least a year. It takes that long to figure out if we are really still alive. After the SLN biopsy you will have a better understanding of where you actually stand in this fight. No matter what is the worst you learn from the SLN biopsy YOU are an individual! Your odds are so much better today than when I was diagnosed.
Don’t let the fears rob you of the joys of those grandchildren or else Melanoma will have won even if it does not end our lives. You may have read of my friend Charlie on here that has been an active Stage IV patient SINCE THE EARLY 1990’s. Learn and fight!
I can say that I have had many grandchildren arrive and even great-grandkids come along since I was expected to be dead! I still have innumerable tumors but get to harass those wonderful grandchildren! Remember that statistics are for large numbers of people. I am NOT a large number of people, I’m ME, an individual. You are also an individual, and no, I do not accept any apologies for anyone posting about melanoma problems and worries here. That’s why we are all here, to learn and to express our fears and to help others.

Dear Beautiful Lady,
I am not sure which melanoma is actually the worst. I was told that mine was one of the worst and fastest spreading when I was finally diagnosed in 2006 after 3 ½ years of complaining to my GP and being misdiagnosed and then being slow rolled for another 8 months by general surgeons. I strongly suspect I was either stage III or IV before I ever saw any surgeon. I was told in February 2007 that I would have major breathing problems within 30 days and would be very unlikely to be here in six months. Was given less than a 50% survival odds for 6 months! Read my profile.
Yes, you will be quite scared for at least a year. It takes that long to figure out if we are really still alive. After the SLN biopsy you will have a better understanding of where you actually stand in this fight. No matter what is the worst you learn from the SLN biopsy YOU are an individual! Your odds are so much better today than when I was diagnosed.
Don’t let the fears rob you of the joys of those grandchildren or else Melanoma will have won even if it does not end our lives. You may have read of my friend Charlie on here that has been an active Stage IV patient SINCE THE EARLY 1990’s. Learn and fight!
I can say that I have had many grandchildren arrive and even great-grandkids come along since I was expected to be dead! I still have innumerable tumors but get to harass those wonderful grandchildren! Remember that statistics are for large numbers of people. I am NOT a large number of people, I’m ME, an individual. You are also an individual, and no, I do not accept any apologies for anyone posting about melanoma problems and worries here. That’s why we are all here, to learn and to express our fears and to help others.

Dear Beautiful Lady,
I am not sure which melanoma is actually the worst. I was told that mine was one of the worst and fastest spreading when I was finally diagnosed in 2006 after 3 ½ years of complaining to my GP and being misdiagnosed and then being slow rolled for another 8 months by general surgeons. I strongly suspect I was either stage III or IV before I ever saw any surgeon. I was told in February 2007 that I would have major breathing problems within 30 days and would be very unlikely to be here in six months. Was given less than a 50% survival odds for 6 months! Read my profile.
Yes, you will be quite scared for at least a year. It takes that long to figure out if we are really still alive. After the SLN biopsy you will have a better understanding of where you actually stand in this fight. No matter what is the worst you learn from the SLN biopsy YOU are an individual! Your odds are so much better today than when I was diagnosed.
Don’t let the fears rob you of the joys of those grandchildren or else Melanoma will have won even if it does not end our lives. You may have read of my friend Charlie on here that has been an active Stage IV patient SINCE THE EARLY 1990’s. Learn and fight!
I can say that I have had many grandchildren arrive and even great-grandkids come along since I was expected to be dead! I still have innumerable tumors but get to harass those wonderful grandchildren! Remember that statistics are for large numbers of people. I am NOT a large number of people, I’m ME, an individual. You are also an individual, and no, I do not accept any apologies for anyone posting about melanoma problems and worries here. That’s why we are all here, to learn and to express our fears and to help others.