› Forums › General Melanoma Community › Update and lingering doubt
- This topic has 24 replies, 5 voices, and was last updated 10 years, 5 months ago by
stars.
- Post
-
- November 14, 2015 at 12:11 am
Hi All,
I posted back a month ago regarding a new diagnosis of Stage 1 tumour. It was .32 breslow, non brisk TIL, and said the lesion had regression present – over 75% of lesion involved. The tumour was on my mid-back.
About 20 years ago I had a similiar looking mole to the melanoma. It was there for quite a while. Rather dramatically it split in two and then disappeared completely. I took note but did not seek medical attention.
That was kind of stupid because my grandfather died of this illness 10 years earlier. I did not htink mine was melanoma especially after it disappeared..
Anyway yesterday I met with surgical oncologist for what I thought was a consultation. (according to my doctor who said she would be performing WLE and SLNB.) Apperently she decided to do the WLE on this meeting instead. SHe also informed me that she did not think that the SLNB was neccesary.
During our conversation I asked about the extensive regression and she said that this was a good thing. That is the first time I have heard this as every article I have read suggests that over 75% regression was not a good thing.
I have a small lump in my neck, she felt it and said that it does not concern her.
I told her about the mole that disappeared 20 years ago and now there is a smaller but similiar mole in the same place. She biposied this with the WLE.
I can not shake the feeling that somehow stuff is getting missed. I am trying to be ok with everthing but was surprised she was not going to perform a SLNB, particularly with the small lump that was dismissed.
She is the expert but I am left wondering if this disease is being left to potentially progress. I hope not.
By the way… Lots of love to all of you.
- Replies
-
-
- November 14, 2015 at 3:24 am
Scott, is your surgical oncologist a melanoma specialist? If not, it would be a good idea to consult an oncologist who specializes in melanoma. I agree that the lump in your neck should be checked. Even if she thinks it nothing, it will give you peace of mind.
It's helpful if you create a profile. 🙂
Best wishes to you and thank you for your kind sentiment! It's truly appreciated. The same to you!
Terrie
-
- November 14, 2015 at 3:24 am
Scott, is your surgical oncologist a melanoma specialist? If not, it would be a good idea to consult an oncologist who specializes in melanoma. I agree that the lump in your neck should be checked. Even if she thinks it nothing, it will give you peace of mind.
It's helpful if you create a profile. 🙂
Best wishes to you and thank you for your kind sentiment! It's truly appreciated. The same to you!
Terrie
-
- November 14, 2015 at 3:24 am
Scott, is your surgical oncologist a melanoma specialist? If not, it would be a good idea to consult an oncologist who specializes in melanoma. I agree that the lump in your neck should be checked. Even if she thinks it nothing, it will give you peace of mind.
It's helpful if you create a profile. 🙂
Best wishes to you and thank you for your kind sentiment! It's truly appreciated. The same to you!
Terrie
-
- November 14, 2015 at 3:26 am
Scott, is your surgical oncologist a melanoma specialist? If not, it would be a good idea to consult an oncologist who specializes in melanoma. I agree that the lump in your neck should be checked. Even if she thinks it nothing, it will give you peace of mind.
It's helpful if you create a profile. 🙂
Best wishes to you and thank you for your kind sentiment! It's truly appreciated. The same to you!
Terrie
-
- November 14, 2015 at 3:26 am
Scott, is your surgical oncologist a melanoma specialist? If not, it would be a good idea to consult an oncologist who specializes in melanoma. I agree that the lump in your neck should be checked. Even if she thinks it nothing, it will give you peace of mind.
It's helpful if you create a profile. 🙂
Best wishes to you and thank you for your kind sentiment! It's truly appreciated. The same to you!
Terrie
-
- November 14, 2015 at 3:26 am
Scott, is your surgical oncologist a melanoma specialist? If not, it would be a good idea to consult an oncologist who specializes in melanoma. I agree that the lump in your neck should be checked. Even if she thinks it nothing, it will give you peace of mind.
It's helpful if you create a profile. 🙂
Best wishes to you and thank you for your kind sentiment! It's truly appreciated. The same to you!
Terrie
-
- November 14, 2015 at 4:12 am
I would be concerned about the lump on the neck. It should be biopsed. Please find a melanoma specialist.
Good Luck!
Liberty -
- November 14, 2015 at 4:12 am
I would be concerned about the lump on the neck. It should be biopsed. Please find a melanoma specialist.
Good Luck!
Liberty -
- November 14, 2015 at 4:12 am
I would be concerned about the lump on the neck. It should be biopsed. Please find a melanoma specialist.
Good Luck!
Liberty -
- November 14, 2015 at 5:21 am
Regression doesn't have to be negative – basically it means that your body recognized the lesion as suspicious and was trying to destroy it. That's what regression is. Sometimes, on the pathology, the doc can determine how deep the original lesion was by fibrosis or other indicators left behind. The gotcha is if the lesion was deep enough to send cells off into the lymph/blood vessels before the body started destroying the lesion. But if the signs showed the lesion wasn't really much deeper, then your lesion is still probably low risk.
Is the lesion on your neck a lymph node? Neck nodes swell more than others for many reasons. A lesion on your back would most likely drain to groin nodes, armpit nodes and clavicle nodes before neck nodes. So that may be why your doc isn't too concerned…or it just isn't a lymph node.
Any newly diagnosed person goes through the uncertainty factor, wondering how to GUARANTEE that there isn't spread. You will never get that. That is called living life with a cancer diagnosis. You will learn (eventually) to live with that uncertainty but it takes time. But if you really feel your doc isn't serving your best interests, call her on it and ask questions. If she won't work WITH you, find someone who will. You are a team.
-
- November 14, 2015 at 5:21 am
Regression doesn't have to be negative – basically it means that your body recognized the lesion as suspicious and was trying to destroy it. That's what regression is. Sometimes, on the pathology, the doc can determine how deep the original lesion was by fibrosis or other indicators left behind. The gotcha is if the lesion was deep enough to send cells off into the lymph/blood vessels before the body started destroying the lesion. But if the signs showed the lesion wasn't really much deeper, then your lesion is still probably low risk.
Is the lesion on your neck a lymph node? Neck nodes swell more than others for many reasons. A lesion on your back would most likely drain to groin nodes, armpit nodes and clavicle nodes before neck nodes. So that may be why your doc isn't too concerned…or it just isn't a lymph node.
Any newly diagnosed person goes through the uncertainty factor, wondering how to GUARANTEE that there isn't spread. You will never get that. That is called living life with a cancer diagnosis. You will learn (eventually) to live with that uncertainty but it takes time. But if you really feel your doc isn't serving your best interests, call her on it and ask questions. If she won't work WITH you, find someone who will. You are a team.
-
- November 14, 2015 at 5:21 am
Regression doesn't have to be negative – basically it means that your body recognized the lesion as suspicious and was trying to destroy it. That's what regression is. Sometimes, on the pathology, the doc can determine how deep the original lesion was by fibrosis or other indicators left behind. The gotcha is if the lesion was deep enough to send cells off into the lymph/blood vessels before the body started destroying the lesion. But if the signs showed the lesion wasn't really much deeper, then your lesion is still probably low risk.
Is the lesion on your neck a lymph node? Neck nodes swell more than others for many reasons. A lesion on your back would most likely drain to groin nodes, armpit nodes and clavicle nodes before neck nodes. So that may be why your doc isn't too concerned…or it just isn't a lymph node.
Any newly diagnosed person goes through the uncertainty factor, wondering how to GUARANTEE that there isn't spread. You will never get that. That is called living life with a cancer diagnosis. You will learn (eventually) to live with that uncertainty but it takes time. But if you really feel your doc isn't serving your best interests, call her on it and ask questions. If she won't work WITH you, find someone who will. You are a team.
-
- November 14, 2015 at 7:55 am
Scott, I just want to reassure you that your worry and second-guessing is pretty normal for people with a melanoma diagnosis. It is downright scary, especially soon after diagnosis. It sounds to me like you are doing all you can do, you are doing everything right, you don't have your head in the sand and you are being proactive. If it makes you feel better, get a 2nd opinion – I did, and it did help. I now feel some comfort in that I have truly done all I can do to manage melanoma and reduce risk of future recurrances. Take it easy on yourself, but don't hesitate to get that 2nd opinion, if for no other reason than peace of mind.
-
- November 14, 2015 at 7:55 am
Scott, I just want to reassure you that your worry and second-guessing is pretty normal for people with a melanoma diagnosis. It is downright scary, especially soon after diagnosis. It sounds to me like you are doing all you can do, you are doing everything right, you don't have your head in the sand and you are being proactive. If it makes you feel better, get a 2nd opinion – I did, and it did help. I now feel some comfort in that I have truly done all I can do to manage melanoma and reduce risk of future recurrances. Take it easy on yourself, but don't hesitate to get that 2nd opinion, if for no other reason than peace of mind.
-
- November 14, 2015 at 7:55 am
Scott, I just want to reassure you that your worry and second-guessing is pretty normal for people with a melanoma diagnosis. It is downright scary, especially soon after diagnosis. It sounds to me like you are doing all you can do, you are doing everything right, you don't have your head in the sand and you are being proactive. If it makes you feel better, get a 2nd opinion – I did, and it did help. I now feel some comfort in that I have truly done all I can do to manage melanoma and reduce risk of future recurrances. Take it easy on yourself, but don't hesitate to get that 2nd opinion, if for no other reason than peace of mind.
-
- November 14, 2015 at 3:30 pm
"How does it feel when everyone says your amazing" Seal
You are all amazing!
I wanted to thank everyone who responded. I find your words very reassuring and helpful. I guess sometimes the emotional toll a cancer diagnosis causes can be underestimated.
In my case even with the good prognotic outlook, It is still cancer. I think coming home after the WLE which for me was about 5 inches long had an impact. Doctors cuting away my skin and performing a second biopsy just made it all the more real. This is a serious problem and can not be taken lightly.
I have been feeling almost guilty for even posting here where I have read some posts and profiles of some incredible people with situations that go so far beyond where I am at. Thinking i should just "suck it up" and move past this in heroic fashion.
The feedback I have recieved from friends etc is a long way from comforting. Responses such as "so they just cut it out and your good to go" "Thank god it isnt something more serious". It doesn't upset me that they think this way too much because I know they do not understand and I don't feel the need to educate them all. But it does leave me somewhat isolated with my real thoughts about this disease.
I have found that here is where I can express my fears and be understood. Although we are strangers there is a sense of unity in the common diagnosis.
I am 47 years old. I have had my lung collapse where I was in the hospital for almost a month. I have had a TIA (minor stroke) and neither of these things bothered me at all. For some reason this did. Like I was staring down the barrel of a gun.
Thank you all for taking your valueable time to share your thoughts with me. it is refreshing to see the human spirit alive and well and reaching out to others with nothing in it for yourselves other than to be helpful
You truly are amazing.
-
- November 14, 2015 at 3:30 pm
"How does it feel when everyone says your amazing" Seal
You are all amazing!
I wanted to thank everyone who responded. I find your words very reassuring and helpful. I guess sometimes the emotional toll a cancer diagnosis causes can be underestimated.
In my case even with the good prognotic outlook, It is still cancer. I think coming home after the WLE which for me was about 5 inches long had an impact. Doctors cuting away my skin and performing a second biopsy just made it all the more real. This is a serious problem and can not be taken lightly.
I have been feeling almost guilty for even posting here where I have read some posts and profiles of some incredible people with situations that go so far beyond where I am at. Thinking i should just "suck it up" and move past this in heroic fashion.
The feedback I have recieved from friends etc is a long way from comforting. Responses such as "so they just cut it out and your good to go" "Thank god it isnt something more serious". It doesn't upset me that they think this way too much because I know they do not understand and I don't feel the need to educate them all. But it does leave me somewhat isolated with my real thoughts about this disease.
I have found that here is where I can express my fears and be understood. Although we are strangers there is a sense of unity in the common diagnosis.
I am 47 years old. I have had my lung collapse where I was in the hospital for almost a month. I have had a TIA (minor stroke) and neither of these things bothered me at all. For some reason this did. Like I was staring down the barrel of a gun.
Thank you all for taking your valueable time to share your thoughts with me. it is refreshing to see the human spirit alive and well and reaching out to others with nothing in it for yourselves other than to be helpful
You truly are amazing.
-
- November 14, 2015 at 3:30 pm
"How does it feel when everyone says your amazing" Seal
You are all amazing!
I wanted to thank everyone who responded. I find your words very reassuring and helpful. I guess sometimes the emotional toll a cancer diagnosis causes can be underestimated.
In my case even with the good prognotic outlook, It is still cancer. I think coming home after the WLE which for me was about 5 inches long had an impact. Doctors cuting away my skin and performing a second biopsy just made it all the more real. This is a serious problem and can not be taken lightly.
I have been feeling almost guilty for even posting here where I have read some posts and profiles of some incredible people with situations that go so far beyond where I am at. Thinking i should just "suck it up" and move past this in heroic fashion.
The feedback I have recieved from friends etc is a long way from comforting. Responses such as "so they just cut it out and your good to go" "Thank god it isnt something more serious". It doesn't upset me that they think this way too much because I know they do not understand and I don't feel the need to educate them all. But it does leave me somewhat isolated with my real thoughts about this disease.
I have found that here is where I can express my fears and be understood. Although we are strangers there is a sense of unity in the common diagnosis.
I am 47 years old. I have had my lung collapse where I was in the hospital for almost a month. I have had a TIA (minor stroke) and neither of these things bothered me at all. For some reason this did. Like I was staring down the barrel of a gun.
Thank you all for taking your valueable time to share your thoughts with me. it is refreshing to see the human spirit alive and well and reaching out to others with nothing in it for yourselves other than to be helpful
You truly are amazing.
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.