Newly diagnosed

Hi Lizz, sorry you have to be here. I know you must be frightened, I think everyone is when we hear those dreaded words.  I was diagnosed 10 years ago, and only a stage one lesion. I am back because of some concerns I do have, have posted, but no responses yet. Anyway, 10 years ago, this board was such a wealth of information, all wrapped up with the kindest, most courageous folks. I am sure someone will reach out to you, soon. I think you made the right decision, better safe than sorry, in my humble opinion.

I will be praying for your peace and healing. 

Hi Lizz, sorry you have to be here. I know you must be frightened, I think everyone is when we hear those dreaded words.  I was diagnosed 10 years ago, and only a stage one lesion. I am back because of some concerns I do have, have posted, but no responses yet. Anyway, 10 years ago, this board was such a wealth of information, all wrapped up with the kindest, most courageous folks. I am sure someone will reach out to you, soon. I think you made the right decision, better safe than sorry, in my humble opinion.

I will be praying for your peace and healing. 

Hi Lizz, sorry you have to be here. I know you must be frightened, I think everyone is when we hear those dreaded words.  I was diagnosed 10 years ago, and only a stage one lesion. I am back because of some concerns I do have, have posted, but no responses yet. Anyway, 10 years ago, this board was such a wealth of information, all wrapped up with the kindest, most courageous folks. I am sure someone will reach out to you, soon. I think you made the right decision, better safe than sorry, in my humble opinion.

I will be praying for your peace and healing. 

Hi Lizz,

Sorry you are here . First things first..are you being treated at a melanoma specialist centre ?

Things are moving rapidly in terms of evolving practice and it is difficult for non specialists to be aware of the latest developments. You might be well advised to get a second opinion .

You are aware that the snb tests for spread to the lymph node that drains the area of the melanoma. If that is negative..great. If not then you have to decide if you want to have a complete lymph node clearance of the nodes in that area.This is not clearcut..as you might think. If only microscopic traces and unlikely to have spread beyond the sentinel node this may be sufficient surgery.If macroscopic is visible then the likelihood of spread to other nodes is higher and you might want them removed in spite of risk of infection, lymphoedema, etc

Sit and wait would mean no unnecessary surgery in the short germ and if things progressed then you make choices as appropriated then. This might mean going direct to immunotherapy.

You ask if the lymph nodes are positive does that mean it has spread elsewhere. The answer is that the chance of progression is higher if the lymph nodes are macroscopic.. But some follks progress and others don't from similar pathology reports. Nothing is certain. It may be that shome genetic types are better at preventing spread than others via their immune system. I did read a weird report about an organ donor who had been clear of melanoma for years but his recipients..who were immunosuppressed following kidney transplants then went on to develop melanoma at the site of the kidney transplants.

Nothing is certain and you may well stay as a stage 2. Sometimes its better to deal with problems as they arise rather than scaring yourself with maybes.  I do think that your call on the snb is a good one as if it did change your staging then it would mean you are able to access the latest treatment earlier than if you watch and wait. However it is all down to choices and there are pros and cons.

Wishing you well

Deb

Hi Lizz,

Sorry you are here . First things first..are you being treated at a melanoma specialist centre ?

Things are moving rapidly in terms of evolving practice and it is difficult for non specialists to be aware of the latest developments. You might be well advised to get a second opinion .

You are aware that the snb tests for spread to the lymph node that drains the area of the melanoma. If that is negative..great. If not then you have to decide if you want to have a complete lymph node clearance of the nodes in that area.This is not clearcut..as you might think. If only microscopic traces and unlikely to have spread beyond the sentinel node this may be sufficient surgery.If macroscopic is visible then the likelihood of spread to other nodes is higher and you might want them removed in spite of risk of infection, lymphoedema, etc

Sit and wait would mean no unnecessary surgery in the short germ and if things progressed then you make choices as appropriated then. This might mean going direct to immunotherapy.

You ask if the lymph nodes are positive does that mean it has spread elsewhere. The answer is that the chance of progression is higher if the lymph nodes are macroscopic.. But some follks progress and others don't from similar pathology reports. Nothing is certain. It may be that shome genetic types are better at preventing spread than others via their immune system. I did read a weird report about an organ donor who had been clear of melanoma for years but his recipients..who were immunosuppressed following kidney transplants then went on to develop melanoma at the site of the kidney transplants.

Nothing is certain and you may well stay as a stage 2. Sometimes its better to deal with problems as they arise rather than scaring yourself with maybes.  I do think that your call on the snb is a good one as if it did change your staging then it would mean you are able to access the latest treatment earlier than if you watch and wait. However it is all down to choices and there are pros and cons.

Wishing you well

Deb

Hi Lizz,

Sorry you are here . First things first..are you being treated at a melanoma specialist centre ?

Things are moving rapidly in terms of evolving practice and it is difficult for non specialists to be aware of the latest developments. You might be well advised to get a second opinion .

You are aware that the snb tests for spread to the lymph node that drains the area of the melanoma. If that is negative..great. If not then you have to decide if you want to have a complete lymph node clearance of the nodes in that area.This is not clearcut..as you might think. If only microscopic traces and unlikely to have spread beyond the sentinel node this may be sufficient surgery.If macroscopic is visible then the likelihood of spread to other nodes is higher and you might want them removed in spite of risk of infection, lymphoedema, etc

Sit and wait would mean no unnecessary surgery in the short germ and if things progressed then you make choices as appropriated then. This might mean going direct to immunotherapy.

You ask if the lymph nodes are positive does that mean it has spread elsewhere. The answer is that the chance of progression is higher if the lymph nodes are macroscopic.. But some follks progress and others don't from similar pathology reports. Nothing is certain. It may be that shome genetic types are better at preventing spread than others via their immune system. I did read a weird report about an organ donor who had been clear of melanoma for years but his recipients..who were immunosuppressed following kidney transplants then went on to develop melanoma at the site of the kidney transplants.

Nothing is certain and you may well stay as a stage 2. Sometimes its better to deal with problems as they arise rather than scaring yourself with maybes.  I do think that your call on the snb is a good one as if it did change your staging then it would mean you are able to access the latest treatment earlier than if you watch and wait. However it is all down to choices and there are pros and cons.

Wishing you well

Deb

I have a friend that was diagnosed a month after me (she went to the dermatologist only because of my situation making her concerned for a mole she had) and her depth was 19mm…. that is not a typo, it was incredibly deep. She then had a SLNB, and her lymph nodes were clear! Her scans were clear! She continues to have clear scans and no recurrence, so she remains stage 2b.

For myself, my depth was 1.9mm, had a SLNB and had 3 positive lymph nodes. No other spread. I am stage 3b. 

Basically, everyone is different, and depth doesn't not determine whether it is more aggressive or will spread faster than if it were not as deep. 

I know it's all crazy and scary at first, this is a great place to gain knowledge and get great advice. 

All the best,

I have a friend that was diagnosed a month after me (she went to the dermatologist only because of my situation making her concerned for a mole she had) and her depth was 19mm…. that is not a typo, it was incredibly deep. She then had a SLNB, and her lymph nodes were clear! Her scans were clear! She continues to have clear scans and no recurrence, so she remains stage 2b.

For myself, my depth was 1.9mm, had a SLNB and had 3 positive lymph nodes. No other spread. I am stage 3b. 

Basically, everyone is different, and depth doesn't not determine whether it is more aggressive or will spread faster than if it were not as deep. 

I know it's all crazy and scary at first, this is a great place to gain knowledge and get great advice. 

All the best,

I have a friend that was diagnosed a month after me (she went to the dermatologist only because of my situation making her concerned for a mole she had) and her depth was 19mm…. that is not a typo, it was incredibly deep. She then had a SLNB, and her lymph nodes were clear! Her scans were clear! She continues to have clear scans and no recurrence, so she remains stage 2b.

For myself, my depth was 1.9mm, had a SLNB and had 3 positive lymph nodes. No other spread. I am stage 3b. 

Basically, everyone is different, and depth doesn't not determine whether it is more aggressive or will spread faster than if it were not as deep. 

I know it's all crazy and scary at first, this is a great place to gain knowledge and get great advice. 

All the best,

Hi Lizz! I too am so very sorry you had to join our "club". It's certainly a scary, anxiety filled roller coaster. Your post brought back so many memories of my fear when I was first diagnosed. Tomorrow I go in for my one year CT scan. I'm scared but not as badly as I was in the beginning so as odd as it seems to you now, know that it does get easier to cope.

I too was initially diagnosed stage 2b pending the results of the SLNB. I'm a little surprised your surgeon made the SNLB seem optional as that was not the case with me. In the beginning things moved so damn fast it is mind boggling! I went from initial biopsy to surgery for the WLE and SNLB in a one week time span!! It was insane. My Nodular tumor was 3.5 mm depth and all doctors I spoke with were very concerned but still optimistic that my nodes would be clear. Unfortunately, I had two isolated tumor cells in one node (two nodes were removed). This elevated me to a stage 3b which I have remained ever since with no treatment (only watch and wait which includes scans and skin checks every 3 months). Knock on wood it stays the same after my scan tomorrow!!!

I agree with the others that a melanoma oncologist is a MUST! Also please know you can always get a second, third or even fourth opinion if needed!! I got a second opinion after my positive SNLB and I'm so happy I did. I can't stress enough the importance of having doctors you trust 100%! It makes the journey so much easier! 

Take a deep breath and take it one day at a time. We are all here for you. This board is amazing and you will not find a more kind and knowledgeable group. 

Please stay in touch. All my best!!

Jenna

Hi Lizz! I too am so very sorry you had to join our "club". It's certainly a scary, anxiety filled roller coaster. Your post brought back so many memories of my fear when I was first diagnosed. Tomorrow I go in for my one year CT scan. I'm scared but not as badly as I was in the beginning so as odd as it seems to you now, know that it does get easier to cope.

I too was initially diagnosed stage 2b pending the results of the SLNB. I'm a little surprised your surgeon made the SNLB seem optional as that was not the case with me. In the beginning things moved so damn fast it is mind boggling! I went from initial biopsy to surgery for the WLE and SNLB in a one week time span!! It was insane. My Nodular tumor was 3.5 mm depth and all doctors I spoke with were very concerned but still optimistic that my nodes would be clear. Unfortunately, I had two isolated tumor cells in one node (two nodes were removed). This elevated me to a stage 3b which I have remained ever since with no treatment (only watch and wait which includes scans and skin checks every 3 months). Knock on wood it stays the same after my scan tomorrow!!!

I agree with the others that a melanoma oncologist is a MUST! Also please know you can always get a second, third or even fourth opinion if needed!! I got a second opinion after my positive SNLB and I'm so happy I did. I can't stress enough the importance of having doctors you trust 100%! It makes the journey so much easier! 

Take a deep breath and take it one day at a time. We are all here for you. This board is amazing and you will not find a more kind and knowledgeable group. 

Please stay in touch. All my best!!

Jenna

Hi Lizz! I too am so very sorry you had to join our "club". It's certainly a scary, anxiety filled roller coaster. Your post brought back so many memories of my fear when I was first diagnosed. Tomorrow I go in for my one year CT scan. I'm scared but not as badly as I was in the beginning so as odd as it seems to you now, know that it does get easier to cope.

I too was initially diagnosed stage 2b pending the results of the SLNB. I'm a little surprised your surgeon made the SNLB seem optional as that was not the case with me. In the beginning things moved so damn fast it is mind boggling! I went from initial biopsy to surgery for the WLE and SNLB in a one week time span!! It was insane. My Nodular tumor was 3.5 mm depth and all doctors I spoke with were very concerned but still optimistic that my nodes would be clear. Unfortunately, I had two isolated tumor cells in one node (two nodes were removed). This elevated me to a stage 3b which I have remained ever since with no treatment (only watch and wait which includes scans and skin checks every 3 months). Knock on wood it stays the same after my scan tomorrow!!!

I agree with the others that a melanoma oncologist is a MUST! Also please know you can always get a second, third or even fourth opinion if needed!! I got a second opinion after my positive SNLB and I'm so happy I did. I can't stress enough the importance of having doctors you trust 100%! It makes the journey so much easier! 

Take a deep breath and take it one day at a time. We are all here for you. This board is amazing and you will not find a more kind and knowledgeable group. 

Please stay in touch. All my best!!

Jenna

Hi Lizz

Sorry you're going through this. I had a deep nodular melanoma removed from my upper arm a couple months ago. It had been there a long time (pink, so didn't seem concerning to me or my primary doc) I was surprised and relieved my SNB (3 removed) came back clear and am now in watch mode. I am at 2c and chose watch and wait over recommended interferon. 

The recovery from my WLE and SNB was not bad at all and I feel just fine now. The terror subsides, and the fear that lingers will keep us vigilant. You do want to be treated by melanoma specialist/team if at all possible.

Lots of kindness and wisdom here on this forum. 

Blessings and health, 

joyce

Hi Lizz

Sorry you're going through this. I had a deep nodular melanoma removed from my upper arm a couple months ago. It had been there a long time (pink, so didn't seem concerning to me or my primary doc) I was surprised and relieved my SNB (3 removed) came back clear and am now in watch mode. I am at 2c and chose watch and wait over recommended interferon. 

The recovery from my WLE and SNB was not bad at all and I feel just fine now. The terror subsides, and the fear that lingers will keep us vigilant. You do want to be treated by melanoma specialist/team if at all possible.

Lots of kindness and wisdom here on this forum. 

Blessings and health, 

joyce

Hi Lizz

Sorry you're going through this. I had a deep nodular melanoma removed from my upper arm a couple months ago. It had been there a long time (pink, so didn't seem concerning to me or my primary doc) I was surprised and relieved my SNB (3 removed) came back clear and am now in watch mode. I am at 2c and chose watch and wait over recommended interferon. 

The recovery from my WLE and SNB was not bad at all and I feel just fine now. The terror subsides, and the fear that lingers will keep us vigilant. You do want to be treated by melanoma specialist/team if at all possible.

Lots of kindness and wisdom here on this forum. 

Blessings and health, 

joyce