› Forums › General Melanoma Community › New diagnosis with MIS – Now trust issues with dermatologist
- This topic has 24 replies, 4 voices, and was last updated 9 years, 2 months ago by
ldub.
- Post
-
- February 23, 2015 at 9:31 pm
Hi – I had two moles taken off last week. Unfortunately, one of the moles was MIS. What's bothering me is that my dermatologist (very experienced – 40+ years, academician, metropolitan area) said that he was not impressed with the mole on my calf that I pointed out and that we could just wait and watch (it was about 5 mm). The mole bothered me as an ugly duckling and stood out from the others on my leg, so I told him I would just like to get rid of it as I might obsess on it. Imagine my surprise when it came back positive as early MIS. My doctor has reassured me that I am very lucky that we got it at such an early stage (and I completely agree) and that I do not have to worry. Of course I am freaking out now. Now he also mentions that he thought it was dysplastic (which he never told me when I was there).
Because my doctor did not think the mole was any big deal before the path came back, I am now questioning everything – my path results (even though they were sent out to a separate dermatopathologist whose CV seems OK), the correct staging (hoping overread and not underread) and I now have serious reservations about going back to him for further monitoring once I have the WLE done in three weeks at a melanoma clinic. I keep asking myself – What if I listened to him? What if he misses other strange birds hanging out on my skin? Although I have been to him a few times for other mole removal and basic checks and we have a pretty good relationship otherwise, I am pretty sure this physician/patient relationship is doomed because he essentially missed this. Have others out there had this happen to them? Also, can anyone provide some coping advice as I wait for the re-review of my path slides and the WLE experience? I am having a lot of anxiety even though my prognosis seems good at this time. Thanks!
- Replies
-
-
- February 24, 2015 at 3:26 am
Your prognosis is excellent. Most dermpaths OVERREAD, not underread. What you also need to understand is that even lesions like yours can stay dormant for a long time. It's actually assumed that most older people with moles might very well have a melanoma that just hasn't gone anywhere.
My new-to-me-then derm and melanoma specialist missed my 3rd primary. Other derm removed my first two. The thing is, my melanoma wasn't outstanding. Looking at it wasn't all that remarkable. But I knew it had changed. CHANGE is #1 to me. My suggestion is to take pictures so you have a baseline of all your moles now and things that change, remove them. I have an excellent relationship with this same derm now. He knows that I have fooled him before and he wants to be certain that doesn't happen again. I've been with this guy 10+ years and wouldn't change for anything.
I have other moles that we know are dysplastic if we biopsied them. But as long as they aren't changing, they aren't hurting me. And remember, only <10% of the melanoma population EVER have an additional primary.
No doctor is all-knowing – you have to work out the kinks. If this doc is easy to work with, then I'd keep him. However, I never rely on anyone but myself to find melanoma. I know my body best. If something changes, I will be the one to find that – in fact I found all my three primaries. I don't do a lot of biopsies because I only remove things that change from my baseline photographs.
Janner
Stage 1B, 22 years, 3 primaries
-
- February 24, 2015 at 3:26 am
Your prognosis is excellent. Most dermpaths OVERREAD, not underread. What you also need to understand is that even lesions like yours can stay dormant for a long time. It's actually assumed that most older people with moles might very well have a melanoma that just hasn't gone anywhere.
My new-to-me-then derm and melanoma specialist missed my 3rd primary. Other derm removed my first two. The thing is, my melanoma wasn't outstanding. Looking at it wasn't all that remarkable. But I knew it had changed. CHANGE is #1 to me. My suggestion is to take pictures so you have a baseline of all your moles now and things that change, remove them. I have an excellent relationship with this same derm now. He knows that I have fooled him before and he wants to be certain that doesn't happen again. I've been with this guy 10+ years and wouldn't change for anything.
I have other moles that we know are dysplastic if we biopsied them. But as long as they aren't changing, they aren't hurting me. And remember, only <10% of the melanoma population EVER have an additional primary.
No doctor is all-knowing – you have to work out the kinks. If this doc is easy to work with, then I'd keep him. However, I never rely on anyone but myself to find melanoma. I know my body best. If something changes, I will be the one to find that – in fact I found all my three primaries. I don't do a lot of biopsies because I only remove things that change from my baseline photographs.
Janner
Stage 1B, 22 years, 3 primaries
-
- February 24, 2015 at 4:18 am
I was hoping you would reply, Janner. I have read some of your other posts on this site and find them very informative and comforting at the same time. This new diagnosis is very overwhelming for me even if it carries a great prognosis and I have scared myself silly reading about melanoma online – your comments give great perspective. I have a young family that I love more than words and the thought of what could be is just really terrifying. I have taken my otherwise great health for granted and this has been an incredibly eye-opening wake up call.
I admire your commitment to body awareness and self-exams. I have read about having professional grid photography done for mole mapping and that some insurance companies actually pay for this. What do you think about this and/or other methods for mole mapping since I will now be in surveillance mode for the long haul? Thanks again.
-
- February 24, 2015 at 4:34 am
I'm 100% behind any type of photography. Mole Mapping (software that helps diagnose) or whole body photography (professional) or even doing your own photography if that's all that can work. It's the independent eye I needed to make sure I caught everything, and also didn't let my imagination run away. I can't tell you how many times I thought something had changed, then I referenced my photos and…. it hadn't. Sometimes, just catching something in different light can make it look like it has changed. The photographs are a good reality check. So, GET PHOTOGRAPHS any way you can. For me, that is the #1 step to mental health after a diagnosis. Oh, and staying off the internet. There is NOTHING you can learn by researching melanoma more that will change ANYTHING with your diagnosis. The more you stay online, the higher your anxiety will be. Things will start to improve (slowly) when you can let go the research and obsessive reading. I know this from many years of being here, many years of helping other early stagers, and my own history. Not the easiest thing to do, but I'd "practice" staying away from as much melanoma online as possible.
-
- February 24, 2015 at 3:16 pm
Thanks Janner – I have been making myself miserable and it is time to pull back. I have also been examining every mole now and thinking "that could be melanoma" especially since I have now seen a variety of pictures of moles that don't present typically. I've just got to get myself together, go to my appointment and then make a plan for follow up. It is extremely hard to wait on these things.
-
- February 24, 2015 at 3:16 pm
Thanks Janner – I have been making myself miserable and it is time to pull back. I have also been examining every mole now and thinking "that could be melanoma" especially since I have now seen a variety of pictures of moles that don't present typically. I've just got to get myself together, go to my appointment and then make a plan for follow up. It is extremely hard to wait on these things.
-
- February 24, 2015 at 3:16 pm
Thanks Janner – I have been making myself miserable and it is time to pull back. I have also been examining every mole now and thinking "that could be melanoma" especially since I have now seen a variety of pictures of moles that don't present typically. I've just got to get myself together, go to my appointment and then make a plan for follow up. It is extremely hard to wait on these things.
-
- February 24, 2015 at 4:34 am
I'm 100% behind any type of photography. Mole Mapping (software that helps diagnose) or whole body photography (professional) or even doing your own photography if that's all that can work. It's the independent eye I needed to make sure I caught everything, and also didn't let my imagination run away. I can't tell you how many times I thought something had changed, then I referenced my photos and…. it hadn't. Sometimes, just catching something in different light can make it look like it has changed. The photographs are a good reality check. So, GET PHOTOGRAPHS any way you can. For me, that is the #1 step to mental health after a diagnosis. Oh, and staying off the internet. There is NOTHING you can learn by researching melanoma more that will change ANYTHING with your diagnosis. The more you stay online, the higher your anxiety will be. Things will start to improve (slowly) when you can let go the research and obsessive reading. I know this from many years of being here, many years of helping other early stagers, and my own history. Not the easiest thing to do, but I'd "practice" staying away from as much melanoma online as possible.
-
- February 24, 2015 at 4:34 am
I'm 100% behind any type of photography. Mole Mapping (software that helps diagnose) or whole body photography (professional) or even doing your own photography if that's all that can work. It's the independent eye I needed to make sure I caught everything, and also didn't let my imagination run away. I can't tell you how many times I thought something had changed, then I referenced my photos and…. it hadn't. Sometimes, just catching something in different light can make it look like it has changed. The photographs are a good reality check. So, GET PHOTOGRAPHS any way you can. For me, that is the #1 step to mental health after a diagnosis. Oh, and staying off the internet. There is NOTHING you can learn by researching melanoma more that will change ANYTHING with your diagnosis. The more you stay online, the higher your anxiety will be. Things will start to improve (slowly) when you can let go the research and obsessive reading. I know this from many years of being here, many years of helping other early stagers, and my own history. Not the easiest thing to do, but I'd "practice" staying away from as much melanoma online as possible.
-
- February 24, 2015 at 4:18 am
I was hoping you would reply, Janner. I have read some of your other posts on this site and find them very informative and comforting at the same time. This new diagnosis is very overwhelming for me even if it carries a great prognosis and I have scared myself silly reading about melanoma online – your comments give great perspective. I have a young family that I love more than words and the thought of what could be is just really terrifying. I have taken my otherwise great health for granted and this has been an incredibly eye-opening wake up call.
I admire your commitment to body awareness and self-exams. I have read about having professional grid photography done for mole mapping and that some insurance companies actually pay for this. What do you think about this and/or other methods for mole mapping since I will now be in surveillance mode for the long haul? Thanks again.
-
- February 24, 2015 at 4:18 am
I was hoping you would reply, Janner. I have read some of your other posts on this site and find them very informative and comforting at the same time. This new diagnosis is very overwhelming for me even if it carries a great prognosis and I have scared myself silly reading about melanoma online – your comments give great perspective. I have a young family that I love more than words and the thought of what could be is just really terrifying. I have taken my otherwise great health for granted and this has been an incredibly eye-opening wake up call.
I admire your commitment to body awareness and self-exams. I have read about having professional grid photography done for mole mapping and that some insurance companies actually pay for this. What do you think about this and/or other methods for mole mapping since I will now be in surveillance mode for the long haul? Thanks again.
-
- February 24, 2015 at 3:26 am
Your prognosis is excellent. Most dermpaths OVERREAD, not underread. What you also need to understand is that even lesions like yours can stay dormant for a long time. It's actually assumed that most older people with moles might very well have a melanoma that just hasn't gone anywhere.
My new-to-me-then derm and melanoma specialist missed my 3rd primary. Other derm removed my first two. The thing is, my melanoma wasn't outstanding. Looking at it wasn't all that remarkable. But I knew it had changed. CHANGE is #1 to me. My suggestion is to take pictures so you have a baseline of all your moles now and things that change, remove them. I have an excellent relationship with this same derm now. He knows that I have fooled him before and he wants to be certain that doesn't happen again. I've been with this guy 10+ years and wouldn't change for anything.
I have other moles that we know are dysplastic if we biopsied them. But as long as they aren't changing, they aren't hurting me. And remember, only <10% of the melanoma population EVER have an additional primary.
No doctor is all-knowing – you have to work out the kinks. If this doc is easy to work with, then I'd keep him. However, I never rely on anyone but myself to find melanoma. I know my body best. If something changes, I will be the one to find that – in fact I found all my three primaries. I don't do a lot of biopsies because I only remove things that change from my baseline photographs.
Janner
Stage 1B, 22 years, 3 primaries
-
- February 24, 2015 at 1:35 pm
Always trust your instincts! If you are concerned then get it removed. My husband had a nodule under the skin, multiple doctors said it's just a fat pocket and happens with age (48). Neither of us were comfortable with leaving it there so had it removed and confirmed it was a recurrence. He had it removed the day after his bi-annual CT which came back with brain mets and four other rumors. Had SRS in January, surgery in Frb and now started Yervoy.
Best wishes to you.
-
- February 24, 2015 at 1:35 pm
Always trust your instincts! If you are concerned then get it removed. My husband had a nodule under the skin, multiple doctors said it's just a fat pocket and happens with age (48). Neither of us were comfortable with leaving it there so had it removed and confirmed it was a recurrence. He had it removed the day after his bi-annual CT which came back with brain mets and four other rumors. Had SRS in January, surgery in Frb and now started Yervoy.
Best wishes to you.
-
- February 24, 2015 at 1:35 pm
Always trust your instincts! If you are concerned then get it removed. My husband had a nodule under the skin, multiple doctors said it's just a fat pocket and happens with age (48). Neither of us were comfortable with leaving it there so had it removed and confirmed it was a recurrence. He had it removed the day after his bi-annual CT which came back with brain mets and four other rumors. Had SRS in January, surgery in Frb and now started Yervoy.
Best wishes to you.
-
- February 24, 2015 at 9:35 pm
If I may; three points for you to consider.
1) It is altogether unrealistic, unfair and unwise to expect any medical professional to be held to the standard of being able to render a diagnosis of melanoma from a purely naked eye perspective. So please cut your doc some slack on this point.
2) The larger point here is that after you expressed your medical concerns , your doctor listened and agreed to perform a biopsy and direct necessary follow-up. That your doctor listened and worked with you as equal is the foundation of an excellent medical team., hardly a single reason to doubt his medical abilities.
3) Understand your diagnosis, and do not obsessively overthink that by going over and over it on the internet:
It is Stage O Melanoma, it was confined/limited to the epidermis. There is no invasion of surrounding tissues or distant sites.
Patients with Stage O Melanoma are medically considered to be a low risk for local recurrence or distant metastiasis.
Bottom line, your doctor DID listen to you, you DID follow your gut and you DO have a very good prognosis.
I assure you, that's about as good as you're gonna get under the circumstance, so chill out and consider the whole mattter a shot across the bow to be vigiilant and get on with the business of living.
Cheers,
Charlie S
-
- February 24, 2015 at 9:35 pm
If I may; three points for you to consider.
1) It is altogether unrealistic, unfair and unwise to expect any medical professional to be held to the standard of being able to render a diagnosis of melanoma from a purely naked eye perspective. So please cut your doc some slack on this point.
2) The larger point here is that after you expressed your medical concerns , your doctor listened and agreed to perform a biopsy and direct necessary follow-up. That your doctor listened and worked with you as equal is the foundation of an excellent medical team., hardly a single reason to doubt his medical abilities.
3) Understand your diagnosis, and do not obsessively overthink that by going over and over it on the internet:
It is Stage O Melanoma, it was confined/limited to the epidermis. There is no invasion of surrounding tissues or distant sites.
Patients with Stage O Melanoma are medically considered to be a low risk for local recurrence or distant metastiasis.
Bottom line, your doctor DID listen to you, you DID follow your gut and you DO have a very good prognosis.
I assure you, that's about as good as you're gonna get under the circumstance, so chill out and consider the whole mattter a shot across the bow to be vigiilant and get on with the business of living.
Cheers,
Charlie S
-
- February 25, 2015 at 7:34 pm
Thanks Charlie – I appreciate your words. I am coming to terms with this thing and need to get to that place where I can just think of it as a "shot across the bow", use it as tool to make my life better – and obviously, to "get on it" with respect to skin surveillance.
-
- February 25, 2015 at 7:34 pm
Thanks Charlie – I appreciate your words. I am coming to terms with this thing and need to get to that place where I can just think of it as a "shot across the bow", use it as tool to make my life better – and obviously, to "get on it" with respect to skin surveillance.
-
- February 25, 2015 at 7:34 pm
Thanks Charlie – I appreciate your words. I am coming to terms with this thing and need to get to that place where I can just think of it as a "shot across the bow", use it as tool to make my life better – and obviously, to "get on it" with respect to skin surveillance.
-
- February 24, 2015 at 9:35 pm
If I may; three points for you to consider.
1) It is altogether unrealistic, unfair and unwise to expect any medical professional to be held to the standard of being able to render a diagnosis of melanoma from a purely naked eye perspective. So please cut your doc some slack on this point.
2) The larger point here is that after you expressed your medical concerns , your doctor listened and agreed to perform a biopsy and direct necessary follow-up. That your doctor listened and worked with you as equal is the foundation of an excellent medical team., hardly a single reason to doubt his medical abilities.
3) Understand your diagnosis, and do not obsessively overthink that by going over and over it on the internet:
It is Stage O Melanoma, it was confined/limited to the epidermis. There is no invasion of surrounding tissues or distant sites.
Patients with Stage O Melanoma are medically considered to be a low risk for local recurrence or distant metastiasis.
Bottom line, your doctor DID listen to you, you DID follow your gut and you DO have a very good prognosis.
I assure you, that's about as good as you're gonna get under the circumstance, so chill out and consider the whole mattter a shot across the bow to be vigiilant and get on with the business of living.
Cheers,
Charlie S
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.