› Forums › General Melanoma Community › Melanoma Back for a 2nd Round…12 years later
- This topic has 30 replies, 5 voices, and was last updated 11 years, 6 months ago by
delora.
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- November 30, 2013 at 7:18 pm
I'm definitely reaching out for anyone with a similiar experience. I had melanoma 12 years ago discovered on a mole on the back of my right leg. I had to have my lymph nodes removed because the sentinnal node was positive. I could only do a month of interferion. I got bit by something at the beach a couple months ago near my cancer site. When it was gone, I was left with what felt like a cyst. After a buddy of mine told me he thought spiders had laid eggs in my leg (haha), I went back to my surgeon. He took out the cyst…melanoma. The new oncologist is puzzled. Reoccurances in the same site don't happen 12 years later. I am scheduled for PET Scan and Brain MRI on the 5th. My blood work in the Drs office looked good. My lungs sounded clear. I'm confused. I'm scared. I'm a single mom of two kids 21 and 7. My oldest has already lived through this nightmare. My 7 year old has no idea what's going on, which is great. I'm 38. I am just waiting; trying to keep my mind focused. I have my moments. Has anyone had an experience like this?
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- December 1, 2013 at 6:10 am
Hi Delora,
This board is usually pretty slow on the US weekends, so others will probably chime in here too.
I wanted to say that I currently am in a similar position. I am stage 3a. 5 years ago I had the surgeries, high dose interferon and GM-CSF, and then was declared NED! Now just last month I noticed a changing "bug bite" looking thing near my SNLD scar. A week later 2 more funky things pop up. Now yesterday, I had them removed via excisional biopsy and am now awaiting the path results. I'll know more next week Sat. I'm confused and scared too.
But what I've learned from this site, is that mel is very unpredictable, and play dirty – doesn't follow the "rules". So the best defense is having a melanoma specialist on your team, staying active and viligent (you caught it! Well done!) and not getting ahead of yourself (I know easier said than done).
Go easy on yourself, surround yourself with supportive people- people who remind you that you are loved, and breath. Take this one day at a time.
Anyway this is my plan.
As I pray, I will remember you, too.
Julie, not in SoCal, but rather in Bangkok.
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- December 1, 2013 at 4:15 pm
Thank you for the message Julia in Bangkok. What brings you to Bandkok? I imagine it's beautiful there.
I'm glad you had the biopsy. Hopefully, it will be great news for you. The waiting is tough right now. I guess there is a possibility it has spread, and I am just sitting here doing nothing. But you are right. One day at a time is all I can get right now. I'll be thinking of you and will remain hopeful that you receive some great news.
Delora
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- December 1, 2013 at 4:15 pm
Thank you for the message Julia in Bangkok. What brings you to Bandkok? I imagine it's beautiful there.
I'm glad you had the biopsy. Hopefully, it will be great news for you. The waiting is tough right now. I guess there is a possibility it has spread, and I am just sitting here doing nothing. But you are right. One day at a time is all I can get right now. I'll be thinking of you and will remain hopeful that you receive some great news.
Delora
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- December 1, 2013 at 4:15 pm
Thank you for the message Julia in Bangkok. What brings you to Bandkok? I imagine it's beautiful there.
I'm glad you had the biopsy. Hopefully, it will be great news for you. The waiting is tough right now. I guess there is a possibility it has spread, and I am just sitting here doing nothing. But you are right. One day at a time is all I can get right now. I'll be thinking of you and will remain hopeful that you receive some great news.
Delora
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- December 1, 2013 at 6:10 am
Hi Delora,
This board is usually pretty slow on the US weekends, so others will probably chime in here too.
I wanted to say that I currently am in a similar position. I am stage 3a. 5 years ago I had the surgeries, high dose interferon and GM-CSF, and then was declared NED! Now just last month I noticed a changing "bug bite" looking thing near my SNLD scar. A week later 2 more funky things pop up. Now yesterday, I had them removed via excisional biopsy and am now awaiting the path results. I'll know more next week Sat. I'm confused and scared too.
But what I've learned from this site, is that mel is very unpredictable, and play dirty – doesn't follow the "rules". So the best defense is having a melanoma specialist on your team, staying active and viligent (you caught it! Well done!) and not getting ahead of yourself (I know easier said than done).
Go easy on yourself, surround yourself with supportive people- people who remind you that you are loved, and breath. Take this one day at a time.
Anyway this is my plan.
As I pray, I will remember you, too.
Julie, not in SoCal, but rather in Bangkok.
-
- December 1, 2013 at 6:10 am
Hi Delora,
This board is usually pretty slow on the US weekends, so others will probably chime in here too.
I wanted to say that I currently am in a similar position. I am stage 3a. 5 years ago I had the surgeries, high dose interferon and GM-CSF, and then was declared NED! Now just last month I noticed a changing "bug bite" looking thing near my SNLD scar. A week later 2 more funky things pop up. Now yesterday, I had them removed via excisional biopsy and am now awaiting the path results. I'll know more next week Sat. I'm confused and scared too.
But what I've learned from this site, is that mel is very unpredictable, and play dirty – doesn't follow the "rules". So the best defense is having a melanoma specialist on your team, staying active and viligent (you caught it! Well done!) and not getting ahead of yourself (I know easier said than done).
Go easy on yourself, surround yourself with supportive people- people who remind you that you are loved, and breath. Take this one day at a time.
Anyway this is my plan.
As I pray, I will remember you, too.
Julie, not in SoCal, but rather in Bangkok.
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- December 1, 2013 at 12:43 pm
Delora, I'm sorry to hear about your situation. Yes, unfortunately, I've had a similar one–recurrence from Stage I after 10 years. Very surreal experience, to say the least. Here are a few random thoughts:
1. If you're not already with him/her, get with the top melanoma specialist in your area. I liked my melanoma specialist (I was with him for 10 years), but I left him shortly after my diagnosis for the top doctor in my area. I wanted someone on the bleeding edge.
2. From a glass-half-full standpoint, there are a number of treatment options today that simply weren't around 12 years ago. So, if you had to have a recurrence, better now than ever before. You can read about those options in this forum.
3. You should have a tumor tested for the BRAF mutation (basic advice in this day and age), but you should also have a full biopsy (and not just a fine needle biopsy) because many trials require a tissue sample. It sounds like this is already in process for you.
4. This forum and the forum at the site for the Melanoma International Foundation (MIF) are quite good. The founder of MIF, Catherine Poole, who moderates the forum, is also very generous with her time and knowledge. I understand that MRF has similar resources (trial finder), but I haven't used them personally.
5. Once you formulate a path with your doctor, consider consulting with a doctor at a top national melanoma center. In my case, I consulted with a doctor at Sloan.
6. We have a 4 year old daughter. Shortly after my diagnosis, we started having her see a child therapist. Not so much for "right now"–but if things take a turn for the worse, we want her to already have someone she knows and trusts. We also discuss the cancer from time to time in 4 year old terms.
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- December 1, 2013 at 4:23 pm
Thank you for all of this infomormation. How would I find the best melanoma specialist in my area? I have a new oncologist who is Preseident of the tumor board here in Charlotte, NC. He is taking my case to his group. That seemed like a positive sign to me. Both my surgeon and Gynoclogist say he's the best, but maybe they are all good golfing buddies 🙂
I will definitely find out about the BRAF mutataion. I think those results are back in, but I didn't know to ask about that. I get my second set of blood test reults tomorrow as well.
My new doctor seemed so thoughful. You could tell his wheels were turning. He said he knew I wanted to hear a plan, but he needed to think, get test reults, and do a lot of collaboration before coming up with a plan. I liked that idea.
As for my daughter, that is the hardest part. If I wasn't a single mom, maybe the decisions would not be so hard. If anything were to happen to me, she is going with my best friend and her husband. It's hard to choose someone outside of your familly, but that would be the best choice for her.
Thanks for replying. The days are short and long at the very same time. I think only you guys understand what I mean.
Delora
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- December 2, 2013 at 12:03 am
Delora,
Right there in Charlotte , there IS group that are on top of it with melanoma…..they have kept me alive since 1996 since I went to stage IV after a nine year remission.
Yes, you read that right, I was Stage three in 1987, had surgery and thought no more of it until it came back in nine years later.
Dr. R L White at Levine is a surgical oncologist and specializes in melanoma, and has some skin in the game…….his father died due to complications from melanoma.
I would uirge you to seek him out.
http://www.carolinashealthcare.org/levine-cancer-institute-melanoma-skin-cancer-program
Dr. White and his group ARE on top of their game, participate in, and have acess to the latest clinical trials, partner with some of the best specialists in the country and have some of the best diagnostic equipment and techinicians available in the area.
Also, North Carolina is very fortunate to be one of few states that have three Comprehensive Cancer Centers….all with heavy Melanoma research.
University of North Carolina at Chapel Hill in Durham http://unclineberger.org/skincancer
Duke University in Durham http://www.dukecancerinstitute.org/research/programs-and-groups/disease-site-groups/melanoma/
Wake Forest Baptist in Winston Salem http://www.wakehealth.edu/Comprehensive-Cancer-Center/Melanoma.htm
I have been to all four places, and Carolinas Medical Center fit me best, but all are centers of excellence.
Hope this helps.
Charlie S
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- December 2, 2013 at 12:03 am
Delora,
Right there in Charlotte , there IS group that are on top of it with melanoma…..they have kept me alive since 1996 since I went to stage IV after a nine year remission.
Yes, you read that right, I was Stage three in 1987, had surgery and thought no more of it until it came back in nine years later.
Dr. R L White at Levine is a surgical oncologist and specializes in melanoma, and has some skin in the game…….his father died due to complications from melanoma.
I would uirge you to seek him out.
http://www.carolinashealthcare.org/levine-cancer-institute-melanoma-skin-cancer-program
Dr. White and his group ARE on top of their game, participate in, and have acess to the latest clinical trials, partner with some of the best specialists in the country and have some of the best diagnostic equipment and techinicians available in the area.
Also, North Carolina is very fortunate to be one of few states that have three Comprehensive Cancer Centers….all with heavy Melanoma research.
University of North Carolina at Chapel Hill in Durham http://unclineberger.org/skincancer
Duke University in Durham http://www.dukecancerinstitute.org/research/programs-and-groups/disease-site-groups/melanoma/
Wake Forest Baptist in Winston Salem http://www.wakehealth.edu/Comprehensive-Cancer-Center/Melanoma.htm
I have been to all four places, and Carolinas Medical Center fit me best, but all are centers of excellence.
Hope this helps.
Charlie S
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- December 2, 2013 at 12:10 am
Thank you Charlie. I actually saw Dr. White back in the day. I forgot all about seeing him until my new oncologist somehow knew that. I guess I will wait until I get these scans done to see what I am dealing with.
Thanks again Charlie! I appreciate all of this information.
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- December 2, 2013 at 12:10 am
Thank you Charlie. I actually saw Dr. White back in the day. I forgot all about seeing him until my new oncologist somehow knew that. I guess I will wait until I get these scans done to see what I am dealing with.
Thanks again Charlie! I appreciate all of this information.
-
- December 2, 2013 at 12:10 am
Thank you Charlie. I actually saw Dr. White back in the day. I forgot all about seeing him until my new oncologist somehow knew that. I guess I will wait until I get these scans done to see what I am dealing with.
Thanks again Charlie! I appreciate all of this information.
-
- December 2, 2013 at 12:03 am
Delora,
Right there in Charlotte , there IS group that are on top of it with melanoma…..they have kept me alive since 1996 since I went to stage IV after a nine year remission.
Yes, you read that right, I was Stage three in 1987, had surgery and thought no more of it until it came back in nine years later.
Dr. R L White at Levine is a surgical oncologist and specializes in melanoma, and has some skin in the game…….his father died due to complications from melanoma.
I would uirge you to seek him out.
http://www.carolinashealthcare.org/levine-cancer-institute-melanoma-skin-cancer-program
Dr. White and his group ARE on top of their game, participate in, and have acess to the latest clinical trials, partner with some of the best specialists in the country and have some of the best diagnostic equipment and techinicians available in the area.
Also, North Carolina is very fortunate to be one of few states that have three Comprehensive Cancer Centers….all with heavy Melanoma research.
University of North Carolina at Chapel Hill in Durham http://unclineberger.org/skincancer
Duke University in Durham http://www.dukecancerinstitute.org/research/programs-and-groups/disease-site-groups/melanoma/
Wake Forest Baptist in Winston Salem http://www.wakehealth.edu/Comprehensive-Cancer-Center/Melanoma.htm
I have been to all four places, and Carolinas Medical Center fit me best, but all are centers of excellence.
Hope this helps.
Charlie S
-
- December 1, 2013 at 4:23 pm
Thank you for all of this infomormation. How would I find the best melanoma specialist in my area? I have a new oncologist who is Preseident of the tumor board here in Charlotte, NC. He is taking my case to his group. That seemed like a positive sign to me. Both my surgeon and Gynoclogist say he's the best, but maybe they are all good golfing buddies 🙂
I will definitely find out about the BRAF mutataion. I think those results are back in, but I didn't know to ask about that. I get my second set of blood test reults tomorrow as well.
My new doctor seemed so thoughful. You could tell his wheels were turning. He said he knew I wanted to hear a plan, but he needed to think, get test reults, and do a lot of collaboration before coming up with a plan. I liked that idea.
As for my daughter, that is the hardest part. If I wasn't a single mom, maybe the decisions would not be so hard. If anything were to happen to me, she is going with my best friend and her husband. It's hard to choose someone outside of your familly, but that would be the best choice for her.
Thanks for replying. The days are short and long at the very same time. I think only you guys understand what I mean.
Delora
-
- December 1, 2013 at 4:23 pm
Thank you for all of this infomormation. How would I find the best melanoma specialist in my area? I have a new oncologist who is Preseident of the tumor board here in Charlotte, NC. He is taking my case to his group. That seemed like a positive sign to me. Both my surgeon and Gynoclogist say he's the best, but maybe they are all good golfing buddies 🙂
I will definitely find out about the BRAF mutataion. I think those results are back in, but I didn't know to ask about that. I get my second set of blood test reults tomorrow as well.
My new doctor seemed so thoughful. You could tell his wheels were turning. He said he knew I wanted to hear a plan, but he needed to think, get test reults, and do a lot of collaboration before coming up with a plan. I liked that idea.
As for my daughter, that is the hardest part. If I wasn't a single mom, maybe the decisions would not be so hard. If anything were to happen to me, she is going with my best friend and her husband. It's hard to choose someone outside of your familly, but that would be the best choice for her.
Thanks for replying. The days are short and long at the very same time. I think only you guys understand what I mean.
Delora
-
- December 1, 2013 at 12:43 pm
Delora, I'm sorry to hear about your situation. Yes, unfortunately, I've had a similar one–recurrence from Stage I after 10 years. Very surreal experience, to say the least. Here are a few random thoughts:
1. If you're not already with him/her, get with the top melanoma specialist in your area. I liked my melanoma specialist (I was with him for 10 years), but I left him shortly after my diagnosis for the top doctor in my area. I wanted someone on the bleeding edge.
2. From a glass-half-full standpoint, there are a number of treatment options today that simply weren't around 12 years ago. So, if you had to have a recurrence, better now than ever before. You can read about those options in this forum.
3. You should have a tumor tested for the BRAF mutation (basic advice in this day and age), but you should also have a full biopsy (and not just a fine needle biopsy) because many trials require a tissue sample. It sounds like this is already in process for you.
4. This forum and the forum at the site for the Melanoma International Foundation (MIF) are quite good. The founder of MIF, Catherine Poole, who moderates the forum, is also very generous with her time and knowledge. I understand that MRF has similar resources (trial finder), but I haven't used them personally.
5. Once you formulate a path with your doctor, consider consulting with a doctor at a top national melanoma center. In my case, I consulted with a doctor at Sloan.
6. We have a 4 year old daughter. Shortly after my diagnosis, we started having her see a child therapist. Not so much for "right now"–but if things take a turn for the worse, we want her to already have someone she knows and trusts. We also discuss the cancer from time to time in 4 year old terms.
-
- December 1, 2013 at 12:43 pm
Delora, I'm sorry to hear about your situation. Yes, unfortunately, I've had a similar one–recurrence from Stage I after 10 years. Very surreal experience, to say the least. Here are a few random thoughts:
1. If you're not already with him/her, get with the top melanoma specialist in your area. I liked my melanoma specialist (I was with him for 10 years), but I left him shortly after my diagnosis for the top doctor in my area. I wanted someone on the bleeding edge.
2. From a glass-half-full standpoint, there are a number of treatment options today that simply weren't around 12 years ago. So, if you had to have a recurrence, better now than ever before. You can read about those options in this forum.
3. You should have a tumor tested for the BRAF mutation (basic advice in this day and age), but you should also have a full biopsy (and not just a fine needle biopsy) because many trials require a tissue sample. It sounds like this is already in process for you.
4. This forum and the forum at the site for the Melanoma International Foundation (MIF) are quite good. The founder of MIF, Catherine Poole, who moderates the forum, is also very generous with her time and knowledge. I understand that MRF has similar resources (trial finder), but I haven't used them personally.
5. Once you formulate a path with your doctor, consider consulting with a doctor at a top national melanoma center. In my case, I consulted with a doctor at Sloan.
6. We have a 4 year old daughter. Shortly after my diagnosis, we started having her see a child therapist. Not so much for "right now"–but if things take a turn for the worse, we want her to already have someone she knows and trusts. We also discuss the cancer from time to time in 4 year old terms.
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- December 1, 2013 at 2:10 pm
Hi, Delora-
I am sorry that you are facing this again. What a kick in the stomach for you!! But Julie and Mat are right– the whole universe of melanoma diagnostics and treatment has improved remarkably in the last 3 or 4 years and you have every reason to be optimistic. I expect that you will spend a few days or a week screaming and yelling, "Why ME??!! Why AGAIN??!! It's not FAIR!!" which is perfectly normal. Then the grit that you showed during your first bout with melanoma will kick in and you will do whatever is necessary to battle it back once more. You can do it!
As Mat said, with all the new developments in melanoma treatment it's very important that you go to a melanoma specialist– general oncologists simply don't have the time to keep up with all the new drugs, diagnostics and side-effects related to melanoma because they are treating so many different types of cancer. As a matter of fact, I am concerned that your oncologist said that "reoccurances in the same site don't happen 12 years later". They most certainly do! Statistically, it is rare for melanoma to recur >10 years later, but it does happen. And when it does happen, it often recurrs in or near the scar from the original excision. So that statement makes me wonder about how much experience your oncologist has with melanoma. So get to a melanoma specialist as soon as possible. If you need help finding one, let us know where you live and we will try to help you.
Again, I am sorry that you have gotten such distressing news. But there is a lot of help and information available here and on the MIF web site. Please keep posting and let us know how you are doing.
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- December 1, 2013 at 4:29 pm
I'm so glad to hear there have been changes in the right direction. The interferion treatments nearly killed me, so I know that's not a route I should take again. I think I'm still stuck in the stunned phase.
I apologize for how I wrote the reaction on my doctor. He was kind of thinking outloud about what this reoccurence meant. I think he was talking about the rarity of it and making sure he came up with the right plan. But then again, maybe he is an idiot 🙂 lol
I know you all are not doctors, but I am trying to prepare myself. A cyst of melanoma next to the original site. What does that mean? What is it? Is it the same thing that I had in that mole? Has it probably spread to some organs? Would I have symptoms? Those are the things running through my mind.
Thanks again for the reply.
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- December 1, 2013 at 4:29 pm
I'm so glad to hear there have been changes in the right direction. The interferion treatments nearly killed me, so I know that's not a route I should take again. I think I'm still stuck in the stunned phase.
I apologize for how I wrote the reaction on my doctor. He was kind of thinking outloud about what this reoccurence meant. I think he was talking about the rarity of it and making sure he came up with the right plan. But then again, maybe he is an idiot 🙂 lol
I know you all are not doctors, but I am trying to prepare myself. A cyst of melanoma next to the original site. What does that mean? What is it? Is it the same thing that I had in that mole? Has it probably spread to some organs? Would I have symptoms? Those are the things running through my mind.
Thanks again for the reply.
-
- December 1, 2013 at 4:29 pm
I'm so glad to hear there have been changes in the right direction. The interferion treatments nearly killed me, so I know that's not a route I should take again. I think I'm still stuck in the stunned phase.
I apologize for how I wrote the reaction on my doctor. He was kind of thinking outloud about what this reoccurence meant. I think he was talking about the rarity of it and making sure he came up with the right plan. But then again, maybe he is an idiot 🙂 lol
I know you all are not doctors, but I am trying to prepare myself. A cyst of melanoma next to the original site. What does that mean? What is it? Is it the same thing that I had in that mole? Has it probably spread to some organs? Would I have symptoms? Those are the things running through my mind.
Thanks again for the reply.
-
- December 1, 2013 at 2:10 pm
Hi, Delora-
I am sorry that you are facing this again. What a kick in the stomach for you!! But Julie and Mat are right– the whole universe of melanoma diagnostics and treatment has improved remarkably in the last 3 or 4 years and you have every reason to be optimistic. I expect that you will spend a few days or a week screaming and yelling, "Why ME??!! Why AGAIN??!! It's not FAIR!!" which is perfectly normal. Then the grit that you showed during your first bout with melanoma will kick in and you will do whatever is necessary to battle it back once more. You can do it!
As Mat said, with all the new developments in melanoma treatment it's very important that you go to a melanoma specialist– general oncologists simply don't have the time to keep up with all the new drugs, diagnostics and side-effects related to melanoma because they are treating so many different types of cancer. As a matter of fact, I am concerned that your oncologist said that "reoccurances in the same site don't happen 12 years later". They most certainly do! Statistically, it is rare for melanoma to recur >10 years later, but it does happen. And when it does happen, it often recurrs in or near the scar from the original excision. So that statement makes me wonder about how much experience your oncologist has with melanoma. So get to a melanoma specialist as soon as possible. If you need help finding one, let us know where you live and we will try to help you.
Again, I am sorry that you have gotten such distressing news. But there is a lot of help and information available here and on the MIF web site. Please keep posting and let us know how you are doing.
-
- December 1, 2013 at 2:10 pm
Hi, Delora-
I am sorry that you are facing this again. What a kick in the stomach for you!! But Julie and Mat are right– the whole universe of melanoma diagnostics and treatment has improved remarkably in the last 3 or 4 years and you have every reason to be optimistic. I expect that you will spend a few days or a week screaming and yelling, "Why ME??!! Why AGAIN??!! It's not FAIR!!" which is perfectly normal. Then the grit that you showed during your first bout with melanoma will kick in and you will do whatever is necessary to battle it back once more. You can do it!
As Mat said, with all the new developments in melanoma treatment it's very important that you go to a melanoma specialist– general oncologists simply don't have the time to keep up with all the new drugs, diagnostics and side-effects related to melanoma because they are treating so many different types of cancer. As a matter of fact, I am concerned that your oncologist said that "reoccurances in the same site don't happen 12 years later". They most certainly do! Statistically, it is rare for melanoma to recur >10 years later, but it does happen. And when it does happen, it often recurrs in or near the scar from the original excision. So that statement makes me wonder about how much experience your oncologist has with melanoma. So get to a melanoma specialist as soon as possible. If you need help finding one, let us know where you live and we will try to help you.
Again, I am sorry that you have gotten such distressing news. But there is a lot of help and information available here and on the MIF web site. Please keep posting and let us know how you are doing.
-
Tagged: cutaneous melanoma
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