› Forums › General Melanoma Community › dont understand
- This topic has 21 replies, 4 voices, and was last updated 10 years, 2 months ago by
Michelem.
- Post
-
- February 13, 2014 at 7:18 am
i recently have had melanoma removed from my pelvic area and now it is my lymph nodes in my groin i had a pet scan today but i am so worried noone is telling me anything and everything that i have read on the internet is not good i dont know what to do i cant eat sleep are anything worry thats it does anyone have any advice thank you billie jo
- Replies
-
-
- February 13, 2014 at 3:34 pm
Initial diagnosis accompanied by the fear of the unknown is/was a challenge for many of us. First suggestion – stop reading about statistics on the internet… they are old and based on older treatments and, therefore, do not reflect today's reality. Second suggestion – get yourself to see a melanoma specialist. A regular oncologist will not do for melanoma due to the pace of development for current treatments. From your profile, it looks like you are in Idaho… recommend you post a separate topic asking for suggestions on a melanoma specialist in your area.
My wife is a worrier and I try to tell her to not worry about things you cannot control. For those if us with melanoma, we typically do not feel an overabundance of control so it can be hard. Take one step at a time. You had the pet scan… that will give some information. Once you know the results, post them here and the group can provide suggestions/support.
Kevin
-
- February 13, 2014 at 3:34 pm
Initial diagnosis accompanied by the fear of the unknown is/was a challenge for many of us. First suggestion – stop reading about statistics on the internet… they are old and based on older treatments and, therefore, do not reflect today's reality. Second suggestion – get yourself to see a melanoma specialist. A regular oncologist will not do for melanoma due to the pace of development for current treatments. From your profile, it looks like you are in Idaho… recommend you post a separate topic asking for suggestions on a melanoma specialist in your area.
My wife is a worrier and I try to tell her to not worry about things you cannot control. For those if us with melanoma, we typically do not feel an overabundance of control so it can be hard. Take one step at a time. You had the pet scan… that will give some information. Once you know the results, post them here and the group can provide suggestions/support.
Kevin
-
- February 13, 2014 at 3:34 pm
Initial diagnosis accompanied by the fear of the unknown is/was a challenge for many of us. First suggestion – stop reading about statistics on the internet… they are old and based on older treatments and, therefore, do not reflect today's reality. Second suggestion – get yourself to see a melanoma specialist. A regular oncologist will not do for melanoma due to the pace of development for current treatments. From your profile, it looks like you are in Idaho… recommend you post a separate topic asking for suggestions on a melanoma specialist in your area.
My wife is a worrier and I try to tell her to not worry about things you cannot control. For those if us with melanoma, we typically do not feel an overabundance of control so it can be hard. Take one step at a time. You had the pet scan… that will give some information. Once you know the results, post them here and the group can provide suggestions/support.
Kevin
-
- February 13, 2014 at 8:19 pm
Kevin is right – stop reading Internet statistics. My husband was diagnosed with Stage III metastatic melanoma with an unknown primary16 months ago. Until I found this site, I thought he had a death sentence measurable in months. He completed a year of Interferon with minimal side effects. We live each day to the fullest and plan for the future. If or when melanoma rears it's ugly self again we will move onto another treatment made possible for those folks that blazed the treatment trail and trials for us.
Take a deep breath and know that each melanoma patient has a unique immune system that will react in its own way.
-
- February 13, 2014 at 8:19 pm
Kevin is right – stop reading Internet statistics. My husband was diagnosed with Stage III metastatic melanoma with an unknown primary16 months ago. Until I found this site, I thought he had a death sentence measurable in months. He completed a year of Interferon with minimal side effects. We live each day to the fullest and plan for the future. If or when melanoma rears it's ugly self again we will move onto another treatment made possible for those folks that blazed the treatment trail and trials for us.
Take a deep breath and know that each melanoma patient has a unique immune system that will react in its own way.
-
- February 13, 2014 at 8:19 pm
Kevin is right – stop reading Internet statistics. My husband was diagnosed with Stage III metastatic melanoma with an unknown primary16 months ago. Until I found this site, I thought he had a death sentence measurable in months. He completed a year of Interferon with minimal side effects. We live each day to the fullest and plan for the future. If or when melanoma rears it's ugly self again we will move onto another treatment made possible for those folks that blazed the treatment trail and trials for us.
Take a deep breath and know that each melanoma patient has a unique immune system that will react in its own way.
-
- February 14, 2014 at 6:35 am
Billie Jo, FIRST, you are not a staatistic. YOU are an individual. When I went to Stage IV 8 months after initial diagnosi I was told that statistically I had between 30 and 180 days left on earth. I must have forgotten how to tell time since that was in Feb 2007! (The ancient of days to get an Melignant melanoma diagnosis.) Many of the articles one reads on the internet, especially if the melanoma is in ones "private" areas, are considered very deadly, this is because they are so often found later than would be preferred.
I would have preferred to not have it PERIOD. I was misdiagnosed by my GP for over 3 1/2 years before ever being referred to a surgeon to check my continuing "hemmorhoid". Have they ran any DNA mutation tests on your removed tissue. Regardless what you read on the internet about probability, you are not a statistic. They just rever to a laarge group of people, not to any one individual. They will most likely remove many of your groin lymph nodes, they did on me in a 7 hour operation by a great Melanoma Specialist Surgeon at the Univ of Va (Dr Craig Slingluff)
They will keep a check on your lungs and liver as these are the most likely locations if the melanoma spreads Further (Metastasizes).
When I was diagnosed there was only one treatment outside of surgery that stood aver a acoouple % of helping an advanced stage melanoma patient, Now , by including the numerous Clinical trials in progress there is at least a dozen treatments to try, and new ones entering the trials monthly! LEARN, FIGHT, LIVE!
: The Things I Wish I Were Told When I Was Diagnosed With Cancer @
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
-
- February 14, 2014 at 6:35 am
Billie Jo, FIRST, you are not a staatistic. YOU are an individual. When I went to Stage IV 8 months after initial diagnosi I was told that statistically I had between 30 and 180 days left on earth. I must have forgotten how to tell time since that was in Feb 2007! (The ancient of days to get an Melignant melanoma diagnosis.) Many of the articles one reads on the internet, especially if the melanoma is in ones "private" areas, are considered very deadly, this is because they are so often found later than would be preferred.
I would have preferred to not have it PERIOD. I was misdiagnosed by my GP for over 3 1/2 years before ever being referred to a surgeon to check my continuing "hemmorhoid". Have they ran any DNA mutation tests on your removed tissue. Regardless what you read on the internet about probability, you are not a statistic. They just rever to a laarge group of people, not to any one individual. They will most likely remove many of your groin lymph nodes, they did on me in a 7 hour operation by a great Melanoma Specialist Surgeon at the Univ of Va (Dr Craig Slingluff)
They will keep a check on your lungs and liver as these are the most likely locations if the melanoma spreads Further (Metastasizes).
When I was diagnosed there was only one treatment outside of surgery that stood aver a acoouple % of helping an advanced stage melanoma patient, Now , by including the numerous Clinical trials in progress there is at least a dozen treatments to try, and new ones entering the trials monthly! LEARN, FIGHT, LIVE!
: The Things I Wish I Were Told When I Was Diagnosed With Cancer @
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
-
- February 14, 2014 at 6:35 am
Billie Jo, FIRST, you are not a staatistic. YOU are an individual. When I went to Stage IV 8 months after initial diagnosi I was told that statistically I had between 30 and 180 days left on earth. I must have forgotten how to tell time since that was in Feb 2007! (The ancient of days to get an Melignant melanoma diagnosis.) Many of the articles one reads on the internet, especially if the melanoma is in ones "private" areas, are considered very deadly, this is because they are so often found later than would be preferred.
I would have preferred to not have it PERIOD. I was misdiagnosed by my GP for over 3 1/2 years before ever being referred to a surgeon to check my continuing "hemmorhoid". Have they ran any DNA mutation tests on your removed tissue. Regardless what you read on the internet about probability, you are not a statistic. They just rever to a laarge group of people, not to any one individual. They will most likely remove many of your groin lymph nodes, they did on me in a 7 hour operation by a great Melanoma Specialist Surgeon at the Univ of Va (Dr Craig Slingluff)
They will keep a check on your lungs and liver as these are the most likely locations if the melanoma spreads Further (Metastasizes).
When I was diagnosed there was only one treatment outside of surgery that stood aver a acoouple % of helping an advanced stage melanoma patient, Now , by including the numerous Clinical trials in progress there is at least a dozen treatments to try, and new ones entering the trials monthly! LEARN, FIGHT, LIVE!
: The Things I Wish I Were Told When I Was Diagnosed With Cancer @
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
-
- February 15, 2014 at 3:42 am
My Surgeon did an outstanding job and I did a few thngs that my wife told the Onc's nurse about and she then told the Doc about and I have no lymphedema! Doc Slingluff worked thiings such that he didn't have to do the muscle flab he had warned me was likely and between the drains, excercise, utilization, rest and elevation and massage I have no re-occuring lymphedema. Doc Slingluff, after being told I was a bad boy, looked at me then at the nurse and said; "It worked, didn't it?" That was the end of that conversation. Love that man, even if I do harass him. I place much of my success with Dr Slingluff's great skills which has him rated as one of the top oncological surgeons in the country. Basically I think I was lucky, even if my abdomen is 2 inches narrower on the left side than on the right side.
-
- February 15, 2014 at 3:42 am
My Surgeon did an outstanding job and I did a few thngs that my wife told the Onc's nurse about and she then told the Doc about and I have no lymphedema! Doc Slingluff worked thiings such that he didn't have to do the muscle flab he had warned me was likely and between the drains, excercise, utilization, rest and elevation and massage I have no re-occuring lymphedema. Doc Slingluff, after being told I was a bad boy, looked at me then at the nurse and said; "It worked, didn't it?" That was the end of that conversation. Love that man, even if I do harass him. I place much of my success with Dr Slingluff's great skills which has him rated as one of the top oncological surgeons in the country. Basically I think I was lucky, even if my abdomen is 2 inches narrower on the left side than on the right side.
-
- February 15, 2014 at 5:34 pm
Wow! That is terrific. My hubby is fighting the lymphedema after two surgeries to the lymph nodes in the groin area. He is going to PT regularly, and every day must do a very complex compression wrap of his leg, from toes all the way to the top of thigh. Compression garment is on order. If you have secrets to share let me know . . .
-
- February 15, 2014 at 5:34 pm
Wow! That is terrific. My hubby is fighting the lymphedema after two surgeries to the lymph nodes in the groin area. He is going to PT regularly, and every day must do a very complex compression wrap of his leg, from toes all the way to the top of thigh. Compression garment is on order. If you have secrets to share let me know . . .
-
- February 15, 2014 at 5:34 pm
Wow! That is terrific. My hubby is fighting the lymphedema after two surgeries to the lymph nodes in the groin area. He is going to PT regularly, and every day must do a very complex compression wrap of his leg, from toes all the way to the top of thigh. Compression garment is on order. If you have secrets to share let me know . . .
-
- February 15, 2014 at 3:42 am
My Surgeon did an outstanding job and I did a few thngs that my wife told the Onc's nurse about and she then told the Doc about and I have no lymphedema! Doc Slingluff worked thiings such that he didn't have to do the muscle flab he had warned me was likely and between the drains, excercise, utilization, rest and elevation and massage I have no re-occuring lymphedema. Doc Slingluff, after being told I was a bad boy, looked at me then at the nurse and said; "It worked, didn't it?" That was the end of that conversation. Love that man, even if I do harass him. I place much of my success with Dr Slingluff's great skills which has him rated as one of the top oncological surgeons in the country. Basically I think I was lucky, even if my abdomen is 2 inches narrower on the left side than on the right side.
-
- You must be logged in to reply to this topic.