newly diagnosed…

Take a deep breath.  This is not a death sentence.  About 6-10% of melanomas are found like yours – without a primary site.  Anyone who has melanoma in their lymph nodes will be stage III regardless if they had a primary site or not.  You can't fine tune the staging yet without more information.  Stage I and stage II are only used if you have a primary site and they can measure the depth of the lesion.  I'm sure you'll probably have some scans to see if there are any other areas of interest.  Just take this one step at a time.  The terminology can be overwhelming.  I suggest you write down the questions you have for the melanoma specialist and take a copy with you to your appointment.  Then you can make sure all the stuff you are thinking about now will be answered.

Best wishes,

Janner

Take a deep breath.  This is not a death sentence.  About 6-10% of melanomas are found like yours – without a primary site.  Anyone who has melanoma in their lymph nodes will be stage III regardless if they had a primary site or not.  You can't fine tune the staging yet without more information.  Stage I and stage II are only used if you have a primary site and they can measure the depth of the lesion.  I'm sure you'll probably have some scans to see if there are any other areas of interest.  Just take this one step at a time.  The terminology can be overwhelming.  I suggest you write down the questions you have for the melanoma specialist and take a copy with you to your appointment.  Then you can make sure all the stuff you are thinking about now will be answered.

Best wishes,

Janner

OK, Boobt2boot, one the "odds" aren't just awful.  And you're letting this run away with you when you can feel it growing.  Sometimes life just bites. No rhyme or reason.  Don't drive yourself nuts trying to look for a reason, especially when all the old standbys don't seem to fit in your case. 

I don't know if you're a praying person, but I am (comes with the territiory) so if you're going to be reading anything, read this…over and over:

God, I need peace and I need calm. My mind and my fears and nerves are starting to get the best of me.  Everything I'm reading is causing me to see boogeymen everywhere. Please help me feel hopeful in this time and grant me strength. Right now Wednesday seems so far away.  Will it ever get here? Will I get answers to me questions? Why is this happening? I don't understand and I want to but nothing makes any sense.  Help me God. Help me.  If I get angry, help me. If I panic, help me. If I can't sleep or function, help me. Grant me clarity and wisdom and help me fight against this gnawing at my mind and soul.  I feel helpless and powerless. In your mercy. Amen.

Boot2boot, that's the first time I've done that on this board and I don't know, really I don't know, I may get told that I can't or shouldn't do that here and if so I won't again.  But Boot, I want to help you get a grip.  HAve you got family or a friend nearby you can go stay with?  I'm concerned about you Boot. You don't need to be by yourself.

Carol

OK, Boobt2boot, one the "odds" aren't just awful.  And you're letting this run away with you when you can feel it growing.  Sometimes life just bites. No rhyme or reason.  Don't drive yourself nuts trying to look for a reason, especially when all the old standbys don't seem to fit in your case. 

I don't know if you're a praying person, but I am (comes with the territiory) so if you're going to be reading anything, read this…over and over:

God, I need peace and I need calm. My mind and my fears and nerves are starting to get the best of me.  Everything I'm reading is causing me to see boogeymen everywhere. Please help me feel hopeful in this time and grant me strength. Right now Wednesday seems so far away.  Will it ever get here? Will I get answers to me questions? Why is this happening? I don't understand and I want to but nothing makes any sense.  Help me God. Help me.  If I get angry, help me. If I panic, help me. If I can't sleep or function, help me. Grant me clarity and wisdom and help me fight against this gnawing at my mind and soul.  I feel helpless and powerless. In your mercy. Amen.

Boot2boot, that's the first time I've done that on this board and I don't know, really I don't know, I may get told that I can't or shouldn't do that here and if so I won't again.  But Boot, I want to help you get a grip.  HAve you got family or a friend nearby you can go stay with?  I'm concerned about you Boot. You don't need to be by yourself.

Carol

It is going to be a long weekend for you. Sometimes research is good, sometimes you need to take a break.  You need to remember that you are not a statistic. There are so many people that are a success story. Many of those people have left this site and moved on with their life. 

Some of the things that I do when I'm stressed and can't get a clear head:  work in the garden , exercise, meditate (I'm not that good at that but I try), call a friend, read a mystery, listen to a book on tape, and quilt. I cannot watch TV without something to do with my hands.  

You will most likely find sleep doesn't come.  Don't lay in bed with your mind spinning. Get up and find something to do that occupies you until you feel you can get some sleep.  My Dr. has told me that most cancer patients have a difficult time sleeping. Once he told me that I found it easier to request sleeping pills. 

Once you have a plan in place it does get easier.

Linda

It is going to be a long weekend for you. Sometimes research is good, sometimes you need to take a break.  You need to remember that you are not a statistic. There are so many people that are a success story. Many of those people have left this site and moved on with their life. 

Some of the things that I do when I'm stressed and can't get a clear head:  work in the garden , exercise, meditate (I'm not that good at that but I try), call a friend, read a mystery, listen to a book on tape, and quilt. I cannot watch TV without something to do with my hands.  

You will most likely find sleep doesn't come.  Don't lay in bed with your mind spinning. Get up and find something to do that occupies you until you feel you can get some sleep.  My Dr. has told me that most cancer patients have a difficult time sleeping. Once he told me that I found it easier to request sleeping pills. 

Once you have a plan in place it does get easier.

Linda

My hubby was just diagnosed 2 weeks ago and his situation was much like yours. A lymph node in his right armpit just grew like crazy in a little over a month. It was sudden and shocking, and the diagnosis moreso.

The people here on this message board are great; really helpful and supportive. My hubby felt so much better just hearing from other people who are fighting the same fight he is. 

We have definitely found that having me go along to all his appointments has been helpful, because, as the patient, it's hard in the heat of the moment to remember all the things you wanted to ask and everything you've been told. And just having someone there for moral support helps, too (or so hubby has told me!).

Take a deep breath. And do NOT obsess over the odds; it wil drive you crazy. Besides, every person's case is different. You are not a number or a statistic. You do not have an expiration date stamped on your forehead.

Just know that you are not alone. There are lots of people on this website alone who are willing to listen, ask questions, be supportive, empathize wih you. 

Best of luck, and keep us posted.

Michelle (wife of Don, his staging is not complete yet, but at least Stage IIIC)

My hubby was just diagnosed 2 weeks ago and his situation was much like yours. A lymph node in his right armpit just grew like crazy in a little over a month. It was sudden and shocking, and the diagnosis moreso.

The people here on this message board are great; really helpful and supportive. My hubby felt so much better just hearing from other people who are fighting the same fight he is. 

We have definitely found that having me go along to all his appointments has been helpful, because, as the patient, it's hard in the heat of the moment to remember all the things you wanted to ask and everything you've been told. And just having someone there for moral support helps, too (or so hubby has told me!).

Take a deep breath. And do NOT obsess over the odds; it wil drive you crazy. Besides, every person's case is different. You are not a number or a statistic. You do not have an expiration date stamped on your forehead.

Just know that you are not alone. There are lots of people on this website alone who are willing to listen, ask questions, be supportive, empathize wih you. 

Best of luck, and keep us posted.

Michelle (wife of Don, his staging is not complete yet, but at least Stage IIIC)

Well, at least you don't have to wait till Wednesday! You sound like a different person today. A "take charge, I can beat this and I can do anything!" spirit works wonders, and you can't beat prayer!  (God works; prayer's a tool).

Glad you've got a support system after all there with you, you sounded soooooo alone last night.

The tape recorder is a great idea, but you can't hold it's hand, so be sure to take a person, too. All the best to you 2B!

Grace and peace,

Carol

Well, at least you don't have to wait till Wednesday! You sound like a different person today. A "take charge, I can beat this and I can do anything!" spirit works wonders, and you can't beat prayer!  (God works; prayer's a tool).

Glad you've got a support system after all there with you, you sounded soooooo alone last night.

The tape recorder is a great idea, but you can't hold it's hand, so be sure to take a person, too. All the best to you 2B!

Grace and peace,

Carol

I feel that your melanoma onc will want to do more tests, especially a full PET
scan. I would tend to be cautious about rushing to get a second opinion, as most
oncs that I have met are reasonably competent. As for questions to ask, why
don't you just make a list of anything that is worrying you before your
appointment?  If the onc is any good, you will probably find that most of them
will be answered without you having to ask.

Please feel free to post the details of your test/scan results here so that the
veterans in this forum can tell you what they think.

Here is a link to old post that is about cases where the primary melanoma cannot
be found: http://www.melanoma.org/community/mpip/all-who-have-unknown-primaries

This is a direct link to a medical article about lymphadenectomy (lymph node
removal): http://www.ncbi.nlm.nih.gov/pubmed/18235114

Good luck for your appointment on Tuesday.

Frank from Australia

It sounds like the itchy mole on your shoulder could have been the primary
lesion. How long had it been bothering you? Was it very big? Melanoma cells can
spread via the lymphatic system and/or the bloodstream depending on the depth of
the initial lesion.

They could do a biopsy, but they may prefer to rely on the results of a PET
scan. This scan will show if the melanoma has spread any further. Here is some
info about the PET scans:
http://www.oncolink.org/experts/article.cfm?c=4&s=36&ss=116&id=1846
This article says that "… PET imaging is a useful non-invasive test for
detection of sub clinical lymph nodes and metastasis. It is also very useful
in evaluating suspicious findings on CT scan or MRI".

I don't know if a biopsy is essential, but it might be done to confirm the
diagnosis of the neoplasm under your armpit.

Hope this helps.

Frank from Australia

It sounds like the itchy mole on your shoulder could have been the primary
lesion. How long had it been bothering you? Was it very big? Melanoma cells can
spread via the lymphatic system and/or the bloodstream depending on the depth of
the initial lesion.

They could do a biopsy, but they may prefer to rely on the results of a PET
scan. This scan will show if the melanoma has spread any further. Here is some
info about the PET scans:
http://www.oncolink.org/experts/article.cfm?c=4&s=36&ss=116&id=1846
This article says that "… PET imaging is a useful non-invasive test for
detection of sub clinical lymph nodes and metastasis. It is also very useful
in evaluating suspicious findings on CT scan or MRI".

I don't know if a biopsy is essential, but it might be done to confirm the
diagnosis of the neoplasm under your armpit.

Hope this helps.

Frank from Australia

I feel that your melanoma onc will want to do more tests, especially a full PET
scan. I would tend to be cautious about rushing to get a second opinion, as most
oncs that I have met are reasonably competent. As for questions to ask, why
don't you just make a list of anything that is worrying you before your
appointment?  If the onc is any good, you will probably find that most of them
will be answered without you having to ask.

Please feel free to post the details of your test/scan results here so that the
veterans in this forum can tell you what they think.

Here is a link to old post that is about cases where the primary melanoma cannot
be found: http://www.melanoma.org/community/mpip/all-who-have-unknown-primaries

This is a direct link to a medical article about lymphadenectomy (lymph node
removal): http://www.ncbi.nlm.nih.gov/pubmed/18235114

Good luck for your appointment on Tuesday.

Frank from Australia

You will know pretty quickly if you trust your melanoma specialist.  People go for 2nd opinions for various reasons. Many times if your specialist cannot offer you a treatment then many will move on to another Dr.  Some specialists help you find treatments at different centers and some will only discuss what  they can offer. 

Many large cancer centers have a tumor board. They discuss your case amongst a team and your presented after they meet with the options.  With my last 2 recurrances my Dr. called me and discussed what was going on and asked for my opinion. Then I got a phone call afterwards telling me the recommendations. I have to travel so for some this is done in person. I see 3 different Doctors at the cancer center.  My melanoma specialist, an oncology surgeon who happens to also be an immunologist, and a urology oncologist (my mel went to the bladder twice). Each one of these men are special as well as their nurses.  I'm having some issues right now and my local Dr. ordered an ultrasound and they discovered that my gallbladder is bad, also discovered incidently a few enlarged nodes.  I e-mailed my melanoma specialist late Thursday night, by Friday morning I had an answer (I also found out he was on vacation!) he asked me a few details and I e-mailed him back. His follow up e-mail was to wish me well with my surgery!  His nurse called me 2 hours later. He had e-mailed her and asked her to follow up.  It's important to have a good repore with your Dr. and to be able to reach them to ask those inbetween appointment questions!   He had me mail him the CD of my latest scan and he is going to compare it with my last exam I had there.  I had given the local hospital a copy of my last scan but on the report they state that they had nothing to compare with…. grrrrrr    

I also have a local oncologist just incase there is an immediate need.  When I contact any of my Drs. I can tell that they immediately know who I am and they remember my information.  This doesn't happen with just one visit.  I hope that you and your Dr. are a good fit for each other!  One question you might want to ask is if their hospital doesn't offer a trial for you (if needed) are they willing, or do they have staff that is willing to help you find a place that does offer the right treatment.

Keep a personal copy of all reports and cd's of scans. Get a big notebook and keep everything together. 

Let us know how it goes!

Linda

You will know pretty quickly if you trust your melanoma specialist.  People go for 2nd opinions for various reasons. Many times if your specialist cannot offer you a treatment then many will move on to another Dr.  Some specialists help you find treatments at different centers and some will only discuss what  they can offer. 

Many large cancer centers have a tumor board. They discuss your case amongst a team and your presented after they meet with the options.  With my last 2 recurrances my Dr. called me and discussed what was going on and asked for my opinion. Then I got a phone call afterwards telling me the recommendations. I have to travel so for some this is done in person. I see 3 different Doctors at the cancer center.  My melanoma specialist, an oncology surgeon who happens to also be an immunologist, and a urology oncologist (my mel went to the bladder twice). Each one of these men are special as well as their nurses.  I'm having some issues right now and my local Dr. ordered an ultrasound and they discovered that my gallbladder is bad, also discovered incidently a few enlarged nodes.  I e-mailed my melanoma specialist late Thursday night, by Friday morning I had an answer (I also found out he was on vacation!) he asked me a few details and I e-mailed him back. His follow up e-mail was to wish me well with my surgery!  His nurse called me 2 hours later. He had e-mailed her and asked her to follow up.  It's important to have a good repore with your Dr. and to be able to reach them to ask those inbetween appointment questions!   He had me mail him the CD of my latest scan and he is going to compare it with my last exam I had there.  I had given the local hospital a copy of my last scan but on the report they state that they had nothing to compare with…. grrrrrr    

I also have a local oncologist just incase there is an immediate need.  When I contact any of my Drs. I can tell that they immediately know who I am and they remember my information.  This doesn't happen with just one visit.  I hope that you and your Dr. are a good fit for each other!  One question you might want to ask is if their hospital doesn't offer a trial for you (if needed) are they willing, or do they have staff that is willing to help you find a place that does offer the right treatment.

Keep a personal copy of all reports and cd's of scans. Get a big notebook and keep everything together. 

Let us know how it goes!

Linda

Why, Archer!  You're sounding like an old pro at this!  Good for you and good for your missus!  She's lucky to have a former zombie like you in her corner.  I couldn't have gotten through it like I did without mine.  All of our spouses, or other loved ones, who stick with us through all this are heroes.

2B, and Archer & Mrs. Archer, have a blessed Sunday and keep us posted.

Hi,

Sorry you have had to receive a melanoma diagnosis but glad you have found your way to this site and bulletin board. I'll let others explain the difference in testing but of note is that my melanoma oncologist orders my PET scans WITH a CT scan at the same time…they are used to contrast and compare each other. Brain MRI's are not an automatic test docs order, usually there are symptoms or some underlying question, or they are required to enter a clinical trial.

I am long divorced and not "partnered up"….I feel comfortable going to medical appointments by myself but my mom usually goes with me. She is a retired LPN from the medical center where I receive treatment. She also lives 10 miles from the medical center and I travel 90 miles one way to get there. I often stay with my folks before treatments, after treatments, surgeries, appointments, etc over the last five years. Its good for all of ours mental health!!   I worked as a hospital social worker and also as a pediatric medical social worker for 10 years so I feel quite comfortable around doctors, hospitals, and discussing procedures, etc. Every doctor I have encountered has commented that I am a very well informed and educated consumer/patient. Plus I have learned how to make the most of a "doctor's time"…not that I have ever felt pushed out the door by my cancer team. I go to visits with questions, sometimes written down, especially in the beginning, but I always have questions and we are sure to discuss what those are. iIask for everything to be explained to me if I dont understand it, I have copies of all my medical records (usually every 3 to 4 months write and ask for all the records and yes I pay a copying fee per the medical center protocol). I do not get the CD's of scans, ie PET/CT scans, MRI's etc…I do always get the results though. I keep all appointment letters and EOB's (explanation of benefits paid) from my insurance company.

Good luck with your Tuesday appointment!

You can read my profile for further history if so desired….

Vermont_Donna, stage 3a

Hi,

Sorry you have had to receive a melanoma diagnosis but glad you have found your way to this site and bulletin board. I'll let others explain the difference in testing but of note is that my melanoma oncologist orders my PET scans WITH a CT scan at the same time…they are used to contrast and compare each other. Brain MRI's are not an automatic test docs order, usually there are symptoms or some underlying question, or they are required to enter a clinical trial.

I am long divorced and not "partnered up"….I feel comfortable going to medical appointments by myself but my mom usually goes with me. She is a retired LPN from the medical center where I receive treatment. She also lives 10 miles from the medical center and I travel 90 miles one way to get there. I often stay with my folks before treatments, after treatments, surgeries, appointments, etc over the last five years. Its good for all of ours mental health!!   I worked as a hospital social worker and also as a pediatric medical social worker for 10 years so I feel quite comfortable around doctors, hospitals, and discussing procedures, etc. Every doctor I have encountered has commented that I am a very well informed and educated consumer/patient. Plus I have learned how to make the most of a "doctor's time"…not that I have ever felt pushed out the door by my cancer team. I go to visits with questions, sometimes written down, especially in the beginning, but I always have questions and we are sure to discuss what those are. iIask for everything to be explained to me if I dont understand it, I have copies of all my medical records (usually every 3 to 4 months write and ask for all the records and yes I pay a copying fee per the medical center protocol). I do not get the CD's of scans, ie PET/CT scans, MRI's etc…I do always get the results though. I keep all appointment letters and EOB's (explanation of benefits paid) from my insurance company.

Good luck with your Tuesday appointment!

You can read my profile for further history if so desired….

Vermont_Donna, stage 3a

Why, Archer!  You're sounding like an old pro at this!  Good for you and good for your missus!  She's lucky to have a former zombie like you in her corner.  I couldn't have gotten through it like I did without mine.  All of our spouses, or other loved ones, who stick with us through all this are heroes.

2B, and Archer & Mrs. Archer, have a blessed Sunday and keep us posted.