› Forums › General Melanoma Community › Just notified that it spread to my lymph nodes, very scared
- This topic has 27 replies, 6 voices, and was last updated 7 years, 4 months ago by
BrianP.
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- December 20, 2016 at 10:40 pm
In June 2016 I noticed a large black mole on the back side of my left thigh and my initial instinct was to have it removed. I called the only dermatology clinic accepted by my insurance and they informed me that they were booked and that I would have to call back in Sept when the new schedule opened. I waited and in Sept I was scheduled for January, which was took long, so I searched for another clinic that would see me and allow me to pay out of pocket. Finally, I was scheduled for October 20th. The dermatology was not worried about the mole but removed it anyway and said the results would be in in a week. Two weeks went by when I got a phone called stating that the sample would need to be sent to another lab. I was scared at first, but he told me that they often have to sent samples away. Two more weeks went by and on November 18th I got the call that it was spitzoid melanoma, over 1mm thick and that I would need surgery and a lymph node biopsy. I was shocked and terrified. I visited the local cancer center in Albuquerque where I live, the very next day to schedule my own appointment as I was so tired of the long waits I had suffered. I had surgery last week, December 13, 2016 and I got the results today. I am sad to say that the melanoma spread to one of the two lymph nodes removed. I am very worried as I have been having fevers and rib pain, and I fear it may have spread else where. I could use any bits of advise and support now. Thank you.
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- December 21, 2016 at 12:12 am
Im about where you are…very scary, indeed. My initial was 7 years ago and recently showed up in a lymph node which was removed (along with 9 others) in November. I made an appointment at MDANDERSON asap and saw their melanoma specialists at the end of November. They gave me treatment recommendations to bring vack home and also told me what they would have done differently surgery-wise. Everyone here will tell you to see a melanoma specialist.If I need another surgery or if this progresses I will hop on the next plane to Texas. I will start yervoy or keytruda in January in hopes that the cancer won’t return. Clinging to God and relying on prayer support from others. Btw, MDANDERSON was in-network for us…I was shocked. You can refer yourself there. -
- December 21, 2016 at 12:12 am
Im about where you are…very scary, indeed. My initial was 7 years ago and recently showed up in a lymph node which was removed (along with 9 others) in November. I made an appointment at MDANDERSON asap and saw their melanoma specialists at the end of November. They gave me treatment recommendations to bring vack home and also told me what they would have done differently surgery-wise. Everyone here will tell you to see a melanoma specialist.If I need another surgery or if this progresses I will hop on the next plane to Texas. I will start yervoy or keytruda in January in hopes that the cancer won’t return. Clinging to God and relying on prayer support from others. Btw, MDANDERSON was in-network for us…I was shocked. You can refer yourself there. -
- December 21, 2016 at 12:12 am
Im about where you are…very scary, indeed. My initial was 7 years ago and recently showed up in a lymph node which was removed (along with 9 others) in November. I made an appointment at MDANDERSON asap and saw their melanoma specialists at the end of November. They gave me treatment recommendations to bring vack home and also told me what they would have done differently surgery-wise. Everyone here will tell you to see a melanoma specialist.If I need another surgery or if this progresses I will hop on the next plane to Texas. I will start yervoy or keytruda in January in hopes that the cancer won’t return. Clinging to God and relying on prayer support from others. Btw, MDANDERSON was in-network for us…I was shocked. You can refer yourself there. -
- December 21, 2016 at 2:22 pm
A few weeks before I found out I had 7 mets in my lungs I had developed a sharp pain in my right upper rib area and a cough that seemed to originate in the same area. About 2 weeks after my first combo of nivo/ipi I knew it was working because the pain and cough both had vanished. Have they discussed any type of treatment?
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- December 21, 2016 at 2:22 pm
A few weeks before I found out I had 7 mets in my lungs I had developed a sharp pain in my right upper rib area and a cough that seemed to originate in the same area. About 2 weeks after my first combo of nivo/ipi I knew it was working because the pain and cough both had vanished. Have they discussed any type of treatment?
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- December 21, 2016 at 2:22 pm
A few weeks before I found out I had 7 mets in my lungs I had developed a sharp pain in my right upper rib area and a cough that seemed to originate in the same area. About 2 weeks after my first combo of nivo/ipi I knew it was working because the pain and cough both had vanished. Have they discussed any type of treatment?
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- December 21, 2016 at 3:25 pm
I'm so sorry you are going through this at this time of year. It was the same with me and it sucked. However, that was 6 years ago.
I never had a primary (no mole was found) and melanoma was found in a single lymph node, so I was Stage III right out of the gate.
But first things first, are you being seen by a melanoma specialist? This is important because these individuals are going to be the most up to speed on treatments. Melanoma treatments are evolving rapidly and you want to be under the care of someone who deals with it on a daily basis.
You've not mentioned anything about having had a CT scan or a PET scan. Have you been scheduled for one yet? The scan should tell doctors if there has been any spread beyond your lymph node. When I was diagnosed my stress level was so high, I had pains everywhere. But the CT scan I had was clean. So, based on my own experience, it is possible that the discomfort you're experiencing could also be stress-related. But you will need that scan to confirm there's nothing else going on. Hang in there.
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- December 22, 2016 at 3:55 am
Thanks for your reply. I have a PET scan ordered for January 4th and a appointment with the medical oncologist on January 6th. I also have decided to try to be seen at MD Anderson, as I have not been very happy with my current hospital, even through it is the best cancer treatment center in New Mexico.I am hoping that all the symptoms are stress-related. I really appreciate your advise and insight and I hope all it well with you. Thanks, Shawna
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- December 22, 2016 at 3:55 am
Thanks for your reply. I have a PET scan ordered for January 4th and a appointment with the medical oncologist on January 6th. I also have decided to try to be seen at MD Anderson, as I have not been very happy with my current hospital, even through it is the best cancer treatment center in New Mexico.I am hoping that all the symptoms are stress-related. I really appreciate your advise and insight and I hope all it well with you. Thanks, Shawna
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- December 22, 2016 at 3:55 am
Thanks for your reply. I have a PET scan ordered for January 4th and a appointment with the medical oncologist on January 6th. I also have decided to try to be seen at MD Anderson, as I have not been very happy with my current hospital, even through it is the best cancer treatment center in New Mexico.I am hoping that all the symptoms are stress-related. I really appreciate your advise and insight and I hope all it well with you. Thanks, Shawna
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- December 21, 2016 at 3:25 pm
I'm so sorry you are going through this at this time of year. It was the same with me and it sucked. However, that was 6 years ago.
I never had a primary (no mole was found) and melanoma was found in a single lymph node, so I was Stage III right out of the gate.
But first things first, are you being seen by a melanoma specialist? This is important because these individuals are going to be the most up to speed on treatments. Melanoma treatments are evolving rapidly and you want to be under the care of someone who deals with it on a daily basis.
You've not mentioned anything about having had a CT scan or a PET scan. Have you been scheduled for one yet? The scan should tell doctors if there has been any spread beyond your lymph node. When I was diagnosed my stress level was so high, I had pains everywhere. But the CT scan I had was clean. So, based on my own experience, it is possible that the discomfort you're experiencing could also be stress-related. But you will need that scan to confirm there's nothing else going on. Hang in there.
-
- December 21, 2016 at 3:25 pm
I'm so sorry you are going through this at this time of year. It was the same with me and it sucked. However, that was 6 years ago.
I never had a primary (no mole was found) and melanoma was found in a single lymph node, so I was Stage III right out of the gate.
But first things first, are you being seen by a melanoma specialist? This is important because these individuals are going to be the most up to speed on treatments. Melanoma treatments are evolving rapidly and you want to be under the care of someone who deals with it on a daily basis.
You've not mentioned anything about having had a CT scan or a PET scan. Have you been scheduled for one yet? The scan should tell doctors if there has been any spread beyond your lymph node. When I was diagnosed my stress level was so high, I had pains everywhere. But the CT scan I had was clean. So, based on my own experience, it is possible that the discomfort you're experiencing could also be stress-related. But you will need that scan to confirm there's nothing else going on. Hang in there.
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- December 21, 2016 at 4:23 pm
Skousal,
So sorry you are having to go through this. Just about everyone here knows exactly what you are feeling right now. It is scary, most so at the beginning when it is so overwhelming and you just don't know what path to take. It will get better though as you educate yourself and come up with a plan.
First as others have mentioned, get to a melanoma specialist. Can't emphasize that point enough. There should be one in Albuquerque or within driving distance. If you need help finding one post on this thread and someone can point you in the right direction.
I imagine since the nodes were found to be positive the next step will be a CTscan. Try your best not to let your imagination get the best of you until you know the results of the scan. I know easier said than done. Even with the fact you had positive lymph nodes it is still more likely your fevers and rib pain are something other than melanoma. You are under stress and you are hyper-sensitive now to every ache and pain. We all experience that. For the last 5 years everytime I get a headache the first thought I have is it might be brain metastasis. Try to avoid those thoughts the best you can.
You experinced in your first encounter with melanoma how unresponsive care providers can be. Now that you have confirmed melanoma never let them put you at the back of the line again! I can't tell you how important it is to advocate for yourself. If it doesn't seem right to you then it isn't right. It is your life.
Right now get organized. Start a folder and keep all your vist summaries, pathology, and images. That can be invaluable if you end up going other places for second opinions. Also when you get your pathology reports come back here and ask questions concerning them if you have some. There are some pretty smart folks on this board in that regard.
Melanoma is a scary diagnosis but there is hope. Treatments are getting better every month so hang in there. You found a great site with some very caring and smart people that will help you get through this.
Brian
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- December 22, 2016 at 4:02 am
Brain,
Thanks for your advise. I have been reading posts for a few weeks now and the best advise I keep reading is to advocate for myself, which I have taken very seriously. I am young, only 25, and this is the first time that I have had any illness and medical condition so I am learning quickly how hard it is to deal with the medical field, as a patient. I am an RN and have been for 2 years but I work with children, which has been very different from the adult setting so far. I have started to get organized as well and seek a second opinion as soon as possible (MD Anderson, hopefully). I am trying hard to stay positive and not over think every symptom I have. Thank you for post.
Shawna
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- December 22, 2016 at 4:02 am
Brain,
Thanks for your advise. I have been reading posts for a few weeks now and the best advise I keep reading is to advocate for myself, which I have taken very seriously. I am young, only 25, and this is the first time that I have had any illness and medical condition so I am learning quickly how hard it is to deal with the medical field, as a patient. I am an RN and have been for 2 years but I work with children, which has been very different from the adult setting so far. I have started to get organized as well and seek a second opinion as soon as possible (MD Anderson, hopefully). I am trying hard to stay positive and not over think every symptom I have. Thank you for post.
Shawna
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- December 22, 2016 at 3:23 pm
Glad to hear MDAnderson may be in your future. I'm sitting in their melanoma clinic right now. If you get an appointment there as it gets closer don't hesitate to ask questions here about what to expect. It's a BIG place but an amazing place for research and innovation.
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- December 22, 2016 at 3:23 pm
Glad to hear MDAnderson may be in your future. I'm sitting in their melanoma clinic right now. If you get an appointment there as it gets closer don't hesitate to ask questions here about what to expect. It's a BIG place but an amazing place for research and innovation.
-
- December 22, 2016 at 3:23 pm
Glad to hear MDAnderson may be in your future. I'm sitting in their melanoma clinic right now. If you get an appointment there as it gets closer don't hesitate to ask questions here about what to expect. It's a BIG place but an amazing place for research and innovation.
-
- December 22, 2016 at 4:02 am
Brain,
Thanks for your advise. I have been reading posts for a few weeks now and the best advise I keep reading is to advocate for myself, which I have taken very seriously. I am young, only 25, and this is the first time that I have had any illness and medical condition so I am learning quickly how hard it is to deal with the medical field, as a patient. I am an RN and have been for 2 years but I work with children, which has been very different from the adult setting so far. I have started to get organized as well and seek a second opinion as soon as possible (MD Anderson, hopefully). I am trying hard to stay positive and not over think every symptom I have. Thank you for post.
Shawna
-
- December 21, 2016 at 4:23 pm
Skousal,
So sorry you are having to go through this. Just about everyone here knows exactly what you are feeling right now. It is scary, most so at the beginning when it is so overwhelming and you just don't know what path to take. It will get better though as you educate yourself and come up with a plan.
First as others have mentioned, get to a melanoma specialist. Can't emphasize that point enough. There should be one in Albuquerque or within driving distance. If you need help finding one post on this thread and someone can point you in the right direction.
I imagine since the nodes were found to be positive the next step will be a CTscan. Try your best not to let your imagination get the best of you until you know the results of the scan. I know easier said than done. Even with the fact you had positive lymph nodes it is still more likely your fevers and rib pain are something other than melanoma. You are under stress and you are hyper-sensitive now to every ache and pain. We all experience that. For the last 5 years everytime I get a headache the first thought I have is it might be brain metastasis. Try to avoid those thoughts the best you can.
You experinced in your first encounter with melanoma how unresponsive care providers can be. Now that you have confirmed melanoma never let them put you at the back of the line again! I can't tell you how important it is to advocate for yourself. If it doesn't seem right to you then it isn't right. It is your life.
Right now get organized. Start a folder and keep all your vist summaries, pathology, and images. That can be invaluable if you end up going other places for second opinions. Also when you get your pathology reports come back here and ask questions concerning them if you have some. There are some pretty smart folks on this board in that regard.
Melanoma is a scary diagnosis but there is hope. Treatments are getting better every month so hang in there. You found a great site with some very caring and smart people that will help you get through this.
Brian
-
- December 21, 2016 at 4:23 pm
Skousal,
So sorry you are having to go through this. Just about everyone here knows exactly what you are feeling right now. It is scary, most so at the beginning when it is so overwhelming and you just don't know what path to take. It will get better though as you educate yourself and come up with a plan.
First as others have mentioned, get to a melanoma specialist. Can't emphasize that point enough. There should be one in Albuquerque or within driving distance. If you need help finding one post on this thread and someone can point you in the right direction.
I imagine since the nodes were found to be positive the next step will be a CTscan. Try your best not to let your imagination get the best of you until you know the results of the scan. I know easier said than done. Even with the fact you had positive lymph nodes it is still more likely your fevers and rib pain are something other than melanoma. You are under stress and you are hyper-sensitive now to every ache and pain. We all experience that. For the last 5 years everytime I get a headache the first thought I have is it might be brain metastasis. Try to avoid those thoughts the best you can.
You experinced in your first encounter with melanoma how unresponsive care providers can be. Now that you have confirmed melanoma never let them put you at the back of the line again! I can't tell you how important it is to advocate for yourself. If it doesn't seem right to you then it isn't right. It is your life.
Right now get organized. Start a folder and keep all your vist summaries, pathology, and images. That can be invaluable if you end up going other places for second opinions. Also when you get your pathology reports come back here and ask questions concerning them if you have some. There are some pretty smart folks on this board in that regard.
Melanoma is a scary diagnosis but there is hope. Treatments are getting better every month so hang in there. You found a great site with some very caring and smart people that will help you get through this.
Brian
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- December 22, 2016 at 12:15 pm
Here's a link to Melanoma specialists that may help you find the right doctor for you.
http://www.aimatmelanoma.org/living-with-melanoma/find-a-melanoma-specialist/
Good luck,
Ann
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- December 22, 2016 at 12:15 pm
Here's a link to Melanoma specialists that may help you find the right doctor for you.
http://www.aimatmelanoma.org/living-with-melanoma/find-a-melanoma-specialist/
Good luck,
Ann
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- December 22, 2016 at 12:15 pm
Here's a link to Melanoma specialists that may help you find the right doctor for you.
http://www.aimatmelanoma.org/living-with-melanoma/find-a-melanoma-specialist/
Good luck,
Ann
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Tagged: cutaneous melanoma
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