› Forums › Cutaneous Melanoma Community › Anyone have problems after 15 yr NED???
- This topic has 30 replies, 7 voices, and was last updated 8 years, 9 months ago by
jessica_f.
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- July 16, 2015 at 5:26 am
I am really concerned I am having so many issues right now, and I can't seem to get anyone to take me seriously??!!!!!! I'm getting really frustrated. I was referred to Nashville Skin & Cancer here in clarksville, and my doctor did'nt even do a proper skin check!!!!! Did'nt look in my hair, my feet, privates, etc…, now I have sores all over my head that are scabbing and bleeding, I had a mole on my chest pop up and turn black, and started scabbing, and itching, and today came off. I immediately put it in a ziploc bag, and ran to the skin and cancer center, and was told it's probably nothing to worry about, and threw my tissue in the trash???!!!!!!!!!! Is anyone else having problems like this??!!!! I tried calling Dr. Kelly at Vanderbilt, but he's gone now along with his nurse. I am so worried because it was so scary when I was diagnosed in 2000, I had 4 surgeries in 5 months, and my right groin lymphnodes were removed, as 3 tested positive. I was put on the cancervax clinical trial for 5 yrs, and it was closed proven not to be successful.. Uggghhh, I'm worn out, because I know how quickly this can get away from you if not being aggressive. Any advice or suggestions I would greatly appreciate. Thank You.
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- July 16, 2015 at 12:17 pm
I'm guessing that you either have Tricare Prime or Standard. I'm trying to think how you can get a second opinion. Possibly you could see another doctor at Nashville Skin and Cancer if your referral is still valid and insist on a thorough check-up including blood work. I know this is going to sound worrisome, but I had melanoma in 1998 and it returned in 2013… Were you unable to get into the dermatology or even oncology clinic at Ft. Campbell? I know how that works and it can be difficult. I hope things work out for the best for you. Keep us posted! I'm sorry I couldn't be of much help but my advice is to be persistent.
Best Wishes!
Terrie
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- July 16, 2015 at 12:17 pm
I'm guessing that you either have Tricare Prime or Standard. I'm trying to think how you can get a second opinion. Possibly you could see another doctor at Nashville Skin and Cancer if your referral is still valid and insist on a thorough check-up including blood work. I know this is going to sound worrisome, but I had melanoma in 1998 and it returned in 2013… Were you unable to get into the dermatology or even oncology clinic at Ft. Campbell? I know how that works and it can be difficult. I hope things work out for the best for you. Keep us posted! I'm sorry I couldn't be of much help but my advice is to be persistent.
Best Wishes!
Terrie
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- July 16, 2015 at 12:17 pm
I'm guessing that you either have Tricare Prime or Standard. I'm trying to think how you can get a second opinion. Possibly you could see another doctor at Nashville Skin and Cancer if your referral is still valid and insist on a thorough check-up including blood work. I know this is going to sound worrisome, but I had melanoma in 1998 and it returned in 2013… Were you unable to get into the dermatology or even oncology clinic at Ft. Campbell? I know how that works and it can be difficult. I hope things work out for the best for you. Keep us posted! I'm sorry I couldn't be of much help but my advice is to be persistent.
Best Wishes!
Terrie
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- July 16, 2015 at 2:37 pm
Did the doctor give you a diagnosis for the scabbing/sores on your scalp? I am asking because sometimes once they have diagnosed you with something that they are convinced looks clearly like a certain condition, it can be hard to get out from under it. So if it looks clearly (to them) like something nonmelanoma related, they will be unlikely to take your concerns about a melanoma recurrence seriously.
But I am surprised that with a history of stage 3 melanoma (positive lymph nodes), you wouldn't be able to request a thorough screening if you haven't had followup in many years, even without sores or new moles!
Regardless of his opinion on your scalp, who wouldn't do a thorough melanoma skin check on someone with a history of melanoma in the lymph nodes?? Maybe it's just me, but it seems like anyone with a history of melanoma should warrant a decent whole body skin check no matter how many years have passed. So I totally agree you need to be persistent and I am thinking you need to drop this doctor and go somewhere else for another opinion and find someone who not only knows how to do a decent melanoma skin check but will listen to your history and address what is going on in a way that leaves you feeling confident that you are in good hands.
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- July 18, 2015 at 12:36 am
They think it is contact dermatitis on my scalp.?? So, they gave me a cream to use on my scalp and I have to go back on monday, as I had my spinal pain injections on thursday, and could'nt move to make my appt today, so I requested to see another doctor, and hopefully they will listen?? I'm just getting so frustrated, because these dr's don't have a clue at what it's like having a ticking time bomb in your body, and when you can't get anyone to take your concerns seriously, it really takes a toll on your emotional stability. Thanks so much.
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- July 18, 2015 at 12:36 am
They think it is contact dermatitis on my scalp.?? So, they gave me a cream to use on my scalp and I have to go back on monday, as I had my spinal pain injections on thursday, and could'nt move to make my appt today, so I requested to see another doctor, and hopefully they will listen?? I'm just getting so frustrated, because these dr's don't have a clue at what it's like having a ticking time bomb in your body, and when you can't get anyone to take your concerns seriously, it really takes a toll on your emotional stability. Thanks so much.
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- July 18, 2015 at 12:36 am
They think it is contact dermatitis on my scalp.?? So, they gave me a cream to use on my scalp and I have to go back on monday, as I had my spinal pain injections on thursday, and could'nt move to make my appt today, so I requested to see another doctor, and hopefully they will listen?? I'm just getting so frustrated, because these dr's don't have a clue at what it's like having a ticking time bomb in your body, and when you can't get anyone to take your concerns seriously, it really takes a toll on your emotional stability. Thanks so much.
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- July 18, 2015 at 3:54 am
I know, there is nothing more maddening!! I totally get it. Having worked around doctors a lot, all I can say is the best bet is to have tried the cream on your scalp (they consider this compliance) and found it not helpful…When you go in to see the new doctor Monday you can say you tried the cream, it didn't work, and you are concerned about a recurrence of melanoma, and describe your history, the mole you found and why you are worried (esp with your history). I would also just mention that with your history, you are overdue for a thorough melanoma skin check/scan anyway (regardless of what they think of your scalp, you are concerned about that mole!), and I would think that would sound reasonable to ANY doctor treating you. Hopefully the next doctor will be one who will take your concerns seriously!
Hang in there and keep being the squeaky wheel until you get some answers!!
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- July 18, 2015 at 3:54 am
I know, there is nothing more maddening!! I totally get it. Having worked around doctors a lot, all I can say is the best bet is to have tried the cream on your scalp (they consider this compliance) and found it not helpful…When you go in to see the new doctor Monday you can say you tried the cream, it didn't work, and you are concerned about a recurrence of melanoma, and describe your history, the mole you found and why you are worried (esp with your history). I would also just mention that with your history, you are overdue for a thorough melanoma skin check/scan anyway (regardless of what they think of your scalp, you are concerned about that mole!), and I would think that would sound reasonable to ANY doctor treating you. Hopefully the next doctor will be one who will take your concerns seriously!
Hang in there and keep being the squeaky wheel until you get some answers!!
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- July 18, 2015 at 3:54 am
I know, there is nothing more maddening!! I totally get it. Having worked around doctors a lot, all I can say is the best bet is to have tried the cream on your scalp (they consider this compliance) and found it not helpful…When you go in to see the new doctor Monday you can say you tried the cream, it didn't work, and you are concerned about a recurrence of melanoma, and describe your history, the mole you found and why you are worried (esp with your history). I would also just mention that with your history, you are overdue for a thorough melanoma skin check/scan anyway (regardless of what they think of your scalp, you are concerned about that mole!), and I would think that would sound reasonable to ANY doctor treating you. Hopefully the next doctor will be one who will take your concerns seriously!
Hang in there and keep being the squeaky wheel until you get some answers!!
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- July 16, 2015 at 2:37 pm
Did the doctor give you a diagnosis for the scabbing/sores on your scalp? I am asking because sometimes once they have diagnosed you with something that they are convinced looks clearly like a certain condition, it can be hard to get out from under it. So if it looks clearly (to them) like something nonmelanoma related, they will be unlikely to take your concerns about a melanoma recurrence seriously.
But I am surprised that with a history of stage 3 melanoma (positive lymph nodes), you wouldn't be able to request a thorough screening if you haven't had followup in many years, even without sores or new moles!
Regardless of his opinion on your scalp, who wouldn't do a thorough melanoma skin check on someone with a history of melanoma in the lymph nodes?? Maybe it's just me, but it seems like anyone with a history of melanoma should warrant a decent whole body skin check no matter how many years have passed. So I totally agree you need to be persistent and I am thinking you need to drop this doctor and go somewhere else for another opinion and find someone who not only knows how to do a decent melanoma skin check but will listen to your history and address what is going on in a way that leaves you feeling confident that you are in good hands.
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- July 16, 2015 at 2:37 pm
Did the doctor give you a diagnosis for the scabbing/sores on your scalp? I am asking because sometimes once they have diagnosed you with something that they are convinced looks clearly like a certain condition, it can be hard to get out from under it. So if it looks clearly (to them) like something nonmelanoma related, they will be unlikely to take your concerns about a melanoma recurrence seriously.
But I am surprised that with a history of stage 3 melanoma (positive lymph nodes), you wouldn't be able to request a thorough screening if you haven't had followup in many years, even without sores or new moles!
Regardless of his opinion on your scalp, who wouldn't do a thorough melanoma skin check on someone with a history of melanoma in the lymph nodes?? Maybe it's just me, but it seems like anyone with a history of melanoma should warrant a decent whole body skin check no matter how many years have passed. So I totally agree you need to be persistent and I am thinking you need to drop this doctor and go somewhere else for another opinion and find someone who not only knows how to do a decent melanoma skin check but will listen to your history and address what is going on in a way that leaves you feeling confident that you are in good hands.
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- July 16, 2015 at 2:52 pm
Sounds like you need to get to a melanoma specialist asap. There are others at Vanderbilt as well as Sara canon in Nashville. I'm not sure of their names. I know I wasn't that impressed with the one I saw at Sara canon but he wasn't the main melanoma doc there.
If you want to do a few hours drive there's my doc dr Linette at Siteman in saint Louis and they also have a really good dermatologist lady he can have you see. She only sees melanoma patients but since you've had it in the past you qualify. They are a bit busy so might take a couple weeks once you call before you can get an appointment with him. Siteman is part of Barnes so it's like the main cancer place in saint Louis and he's a melanoma specialist.
Artie
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- July 16, 2015 at 2:52 pm
Sounds like you need to get to a melanoma specialist asap. There are others at Vanderbilt as well as Sara canon in Nashville. I'm not sure of their names. I know I wasn't that impressed with the one I saw at Sara canon but he wasn't the main melanoma doc there.
If you want to do a few hours drive there's my doc dr Linette at Siteman in saint Louis and they also have a really good dermatologist lady he can have you see. She only sees melanoma patients but since you've had it in the past you qualify. They are a bit busy so might take a couple weeks once you call before you can get an appointment with him. Siteman is part of Barnes so it's like the main cancer place in saint Louis and he's a melanoma specialist.
Artie
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- July 16, 2015 at 2:52 pm
Sounds like you need to get to a melanoma specialist asap. There are others at Vanderbilt as well as Sara canon in Nashville. I'm not sure of their names. I know I wasn't that impressed with the one I saw at Sara canon but he wasn't the main melanoma doc there.
If you want to do a few hours drive there's my doc dr Linette at Siteman in saint Louis and they also have a really good dermatologist lady he can have you see. She only sees melanoma patients but since you've had it in the past you qualify. They are a bit busy so might take a couple weeks once you call before you can get an appointment with him. Siteman is part of Barnes so it's like the main cancer place in saint Louis and he's a melanoma specialist.
Artie
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- July 16, 2015 at 8:23 pm
When I was first referred to Dr. Linette the first appointment available was not until August . I explained that I was returning to Indiana in a couple of weeks, the Cooridinator emailed him and called back in a hour with a appointment in 2 days, after his normal appointment times . I was very impressed with him and the whole staff.
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- July 16, 2015 at 8:23 pm
When I was first referred to Dr. Linette the first appointment available was not until August . I explained that I was returning to Indiana in a couple of weeks, the Cooridinator emailed him and called back in a hour with a appointment in 2 days, after his normal appointment times . I was very impressed with him and the whole staff.
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- July 19, 2015 at 8:25 pm
Cool. Couldn't ask for better than that.
Artie
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- July 19, 2015 at 8:25 pm
Cool. Couldn't ask for better than that.
Artie
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- July 19, 2015 at 8:25 pm
Cool. Couldn't ask for better than that.
Artie
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- July 16, 2015 at 8:23 pm
When I was first referred to Dr. Linette the first appointment available was not until August . I explained that I was returning to Indiana in a couple of weeks, the Cooridinator emailed him and called back in a hour with a appointment in 2 days, after his normal appointment times . I was very impressed with him and the whole staff.
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- July 16, 2015 at 8:25 pm
When I was first referred to Dr. Linette the first appointment available was not until August . I explained that I was returning to Indiana in a couple of weeks, the Cooridinator emailed him and called back in a hour with a appointment in 2 days, after his normal appointment times . I was very impressed with him and the whole staff.
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- July 16, 2015 at 8:25 pm
When I was first referred to Dr. Linette the first appointment available was not until August . I explained that I was returning to Indiana in a couple of weeks, the Cooridinator emailed him and called back in a hour with a appointment in 2 days, after his normal appointment times . I was very impressed with him and the whole staff.
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- July 16, 2015 at 8:25 pm
When I was first referred to Dr. Linette the first appointment available was not until August . I explained that I was returning to Indiana in a couple of weeks, the Cooridinator emailed him and called back in a hour with a appointment in 2 days, after his normal appointment times . I was very impressed with him and the whole staff.
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- July 18, 2015 at 1:48 pm
Sounds that you are overreacting over probably some minor problems. Your fallen off mole sounds like a seborrheic keratosis to me (that's why they put it into trush), and if the skin is healing and leving no residual spot behind, I would not be paranoid over it.
If a doctor saw your scalp and said it is a dermatitis, so maybe this is what it is and I would try recommended treatment first. Of course, if you are concerned, you could go and see another doctor for your piece of mind. -
- July 18, 2015 at 1:48 pm
Sounds that you are overreacting over probably some minor problems. Your fallen off mole sounds like a seborrheic keratosis to me (that's why they put it into trush), and if the skin is healing and leving no residual spot behind, I would not be paranoid over it.
If a doctor saw your scalp and said it is a dermatitis, so maybe this is what it is and I would try recommended treatment first. Of course, if you are concerned, you could go and see another doctor for your piece of mind. -
- July 18, 2015 at 1:48 pm
Sounds that you are overreacting over probably some minor problems. Your fallen off mole sounds like a seborrheic keratosis to me (that's why they put it into trush), and if the skin is healing and leving no residual spot behind, I would not be paranoid over it.
If a doctor saw your scalp and said it is a dermatitis, so maybe this is what it is and I would try recommended treatment first. Of course, if you are concerned, you could go and see another doctor for your piece of mind.
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Tagged: cutaneous melanoma
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