› Forums › General Melanoma Community › Looking For Insight On Father’s Diagnosis
- This topic has 30 replies, 7 voices, and was last updated 7 years, 7 months ago by
Kim Tucker.
- Post
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- August 31, 2016 at 5:10 pm
- After countlss hours of researching and reading your stories, I am adking for input on my 63 y/o father. Please see history below. I appreciate any and all comments, thoughts, similar personal stories, etc. Thank you all~
- Treatment History
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August 26, 2016~Upon surgical excision (with anesthesia) of scalp lesion performed by Dr. Arrington-Penninsula Plastic Surgery, Salisbury, Maryland, it was learned that unlike the numerous other removals of basal and squamous cell cancers my father had undergone, this was in fact Melanoma.
Pathology : Superficial Spreading Melanoma
Thickness Greater that 6mm
Mitotic Rate 4.1/mm
Present Perineural Invasion
Pathologic Stage: pT4aMargins were not clear and both peripheral and deep margins were involved by invasive melanoma.
8/30/16 Seen by Dr. Anthony Tufaro-Johns Hopkins Kimmel Cancer Center
Currently waiting on schedule of MRI and CT scans to determine if present in organs. Sentinel Node Biopsy scheduled in approx 4 weeks (earliest possible) with additional removal of disease to aquire clear margins. This will also include skin graft.
- Replies
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- August 31, 2016 at 6:22 pm
Hi Kim,
Sorry for the bad news about Dad. Careful over-researching as much of what you will find online is out of date in this quick changing treatment environment. Right now the next step is waiting for the follow-up scans and tests to determine staging. Until that is determined, there is no treatment. You need to take this one step at a time, and be thankful that more treatment options exist now than ever before.
Gary
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- August 31, 2016 at 6:22 pm
Hi Kim,
Sorry for the bad news about Dad. Careful over-researching as much of what you will find online is out of date in this quick changing treatment environment. Right now the next step is waiting for the follow-up scans and tests to determine staging. Until that is determined, there is no treatment. You need to take this one step at a time, and be thankful that more treatment options exist now than ever before.
Gary
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- August 31, 2016 at 7:34 pm
Hi Kim,
The waiting can be full of anxiety (we here call it scanxiety) and comments along the lines of keeping busy and distracted (mind off the issue of disease) is good advice. Waiting 4-weeks for SLNB is not unusual and likely to do no more harm at this point.
Gary
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- August 31, 2016 at 7:34 pm
Hi Kim,
The waiting can be full of anxiety (we here call it scanxiety) and comments along the lines of keeping busy and distracted (mind off the issue of disease) is good advice. Waiting 4-weeks for SLNB is not unusual and likely to do no more harm at this point.
Gary
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- August 31, 2016 at 7:34 pm
Hi Kim,
The waiting can be full of anxiety (we here call it scanxiety) and comments along the lines of keeping busy and distracted (mind off the issue of disease) is good advice. Waiting 4-weeks for SLNB is not unusual and likely to do no more harm at this point.
Gary
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- August 31, 2016 at 8:42 pm
I was diagnosed with melanoma also and also need the WLE and SLNB last week. My surgery is 3 weeks out, September 15. Dr said there is 12-15% chance of spreading and if it has spread it has done it already and if not, it won't in just a few weeks. Hope this helps. Good luck to your dad and I will keep you in my prayers.
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- August 31, 2016 at 8:42 pm
I was diagnosed with melanoma also and also need the WLE and SLNB last week. My surgery is 3 weeks out, September 15. Dr said there is 12-15% chance of spreading and if it has spread it has done it already and if not, it won't in just a few weeks. Hope this helps. Good luck to your dad and I will keep you in my prayers.
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- August 31, 2016 at 8:42 pm
I was diagnosed with melanoma also and also need the WLE and SLNB last week. My surgery is 3 weeks out, September 15. Dr said there is 12-15% chance of spreading and if it has spread it has done it already and if not, it won't in just a few weeks. Hope this helps. Good luck to your dad and I will keep you in my prayers.
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- August 31, 2016 at 6:22 pm
Hi Kim,
Sorry for the bad news about Dad. Careful over-researching as much of what you will find online is out of date in this quick changing treatment environment. Right now the next step is waiting for the follow-up scans and tests to determine staging. Until that is determined, there is no treatment. You need to take this one step at a time, and be thankful that more treatment options exist now than ever before.
Gary
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- August 31, 2016 at 7:25 pm
Hi Kim,
Sorry you are here. The scans, SLNB and further excision will give you and your Dads Dr's more information so that his Stage on the melanoma roller coaster will be revealed.
Accurate staging is important as it helps determine the most suitable treatment for how far the disease has travelled, but the wait to find out is hard. The good news is that there are now many more treatment options for later stage melanoma- either as single agent or in combination and new treatments coming through in trials on a fairly regular basis. At the moment you don't really know quite what you are dealing with and it would be easy to let your mind run forward to possible futures you won't need to confront.
My husband was brilliant in this period , keeping me busy and distracted by arranging cinema, gigs and trips out…perhaps you could do something similar for your Dad, and try to make sure he eats healthily at a time when he will be in shock at the diagnosis.
Everyone on this board will recommend getting to an expert centre- but even from the UK I can see that you are already there at John Hopkins.
Cancer is scary- but by being able to understand and take part in the treatment choices I felt I was getting back a bit of control.
This link https://www.nice.org.uk/guidance/ng14 gives an overview of the UK guidance re melanoma and references the evidence on which it is based.
There are also some great videos from Catherine Poole and Melanoma Int Foundation on you tube
https://www.youtube.com/watch?v=2wmeyNjFKQw Pathology reports
https://www.youtube.com/watch?v=YrW4UdkCu8I Surgery
https://www.youtube.com/watch?v=eofW8d4J6sI Stage III Decisions.
Sorry if I'm sort of giving mixed messages- but if you can pick up the language and understand the options – you will be ready to have an informed discussion when you and your Dad know exactly what the staging is and which treatment options are on the table .. but if you can- hold off from assuming the worse case until you have the scan results. It is a bit of a tight rope walk and I have fallen off it more than a few times but if you can- spend the bulk of your energies on the current problems – which are usually more than plenty to deal with….
Good luck withthe scans and surgery
Deb
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- August 31, 2016 at 7:25 pm
Hi Kim,
Sorry you are here. The scans, SLNB and further excision will give you and your Dads Dr's more information so that his Stage on the melanoma roller coaster will be revealed.
Accurate staging is important as it helps determine the most suitable treatment for how far the disease has travelled, but the wait to find out is hard. The good news is that there are now many more treatment options for later stage melanoma- either as single agent or in combination and new treatments coming through in trials on a fairly regular basis. At the moment you don't really know quite what you are dealing with and it would be easy to let your mind run forward to possible futures you won't need to confront.
My husband was brilliant in this period , keeping me busy and distracted by arranging cinema, gigs and trips out…perhaps you could do something similar for your Dad, and try to make sure he eats healthily at a time when he will be in shock at the diagnosis.
Everyone on this board will recommend getting to an expert centre- but even from the UK I can see that you are already there at John Hopkins.
Cancer is scary- but by being able to understand and take part in the treatment choices I felt I was getting back a bit of control.
This link https://www.nice.org.uk/guidance/ng14 gives an overview of the UK guidance re melanoma and references the evidence on which it is based.
There are also some great videos from Catherine Poole and Melanoma Int Foundation on you tube
https://www.youtube.com/watch?v=2wmeyNjFKQw Pathology reports
https://www.youtube.com/watch?v=YrW4UdkCu8I Surgery
https://www.youtube.com/watch?v=eofW8d4J6sI Stage III Decisions.
Sorry if I'm sort of giving mixed messages- but if you can pick up the language and understand the options – you will be ready to have an informed discussion when you and your Dad know exactly what the staging is and which treatment options are on the table .. but if you can- hold off from assuming the worse case until you have the scan results. It is a bit of a tight rope walk and I have fallen off it more than a few times but if you can- spend the bulk of your energies on the current problems – which are usually more than plenty to deal with….
Good luck withthe scans and surgery
Deb
-
- August 31, 2016 at 7:25 pm
Hi Kim,
Sorry you are here. The scans, SLNB and further excision will give you and your Dads Dr's more information so that his Stage on the melanoma roller coaster will be revealed.
Accurate staging is important as it helps determine the most suitable treatment for how far the disease has travelled, but the wait to find out is hard. The good news is that there are now many more treatment options for later stage melanoma- either as single agent or in combination and new treatments coming through in trials on a fairly regular basis. At the moment you don't really know quite what you are dealing with and it would be easy to let your mind run forward to possible futures you won't need to confront.
My husband was brilliant in this period , keeping me busy and distracted by arranging cinema, gigs and trips out…perhaps you could do something similar for your Dad, and try to make sure he eats healthily at a time when he will be in shock at the diagnosis.
Everyone on this board will recommend getting to an expert centre- but even from the UK I can see that you are already there at John Hopkins.
Cancer is scary- but by being able to understand and take part in the treatment choices I felt I was getting back a bit of control.
This link https://www.nice.org.uk/guidance/ng14 gives an overview of the UK guidance re melanoma and references the evidence on which it is based.
There are also some great videos from Catherine Poole and Melanoma Int Foundation on you tube
https://www.youtube.com/watch?v=2wmeyNjFKQw Pathology reports
https://www.youtube.com/watch?v=YrW4UdkCu8I Surgery
https://www.youtube.com/watch?v=eofW8d4J6sI Stage III Decisions.
Sorry if I'm sort of giving mixed messages- but if you can pick up the language and understand the options – you will be ready to have an informed discussion when you and your Dad know exactly what the staging is and which treatment options are on the table .. but if you can- hold off from assuming the worse case until you have the scan results. It is a bit of a tight rope walk and I have fallen off it more than a few times but if you can- spend the bulk of your energies on the current problems – which are usually more than plenty to deal with….
Good luck withthe scans and surgery
Deb
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- August 31, 2016 at 8:21 pm
Kim, from what I have gleaned on the internet, it does not seem that Dr. Tufaro is a melanoma specialist. Am I mistaken? He appears to be a very knowledgeable surgeon, but in your father's case I would want a doctor who only sees melanoma patients — day in, day out. Those are the only doctors that can keep up in the fast-changing world of melanoma treatments.
Maybe someone else here has had experience with Johns Hopkins and can comment.
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- August 31, 2016 at 8:21 pm
Kim, from what I have gleaned on the internet, it does not seem that Dr. Tufaro is a melanoma specialist. Am I mistaken? He appears to be a very knowledgeable surgeon, but in your father's case I would want a doctor who only sees melanoma patients — day in, day out. Those are the only doctors that can keep up in the fast-changing world of melanoma treatments.
Maybe someone else here has had experience with Johns Hopkins and can comment.
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- August 31, 2016 at 9:42 pm
A melanoma specialist is neccessary after surgery, after final staging. Many of us have had our WLE and SLNB performed by both general cancer surgeons and general surgeons. I had a general surgeon and even asked a melanoma specialist prior if that was ok and she said yes, important part is finding out the results of the SLNB and from there, getting a melanoma specialist if treatment is needed. SLNB's are very common since they also do them for breast cancer, even the general surgeon I had said he had performed more SLNB's than he could count. I am sure this doctor at John Hopkins is experienced in these procedures.
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- August 31, 2016 at 9:42 pm
A melanoma specialist is neccessary after surgery, after final staging. Many of us have had our WLE and SLNB performed by both general cancer surgeons and general surgeons. I had a general surgeon and even asked a melanoma specialist prior if that was ok and she said yes, important part is finding out the results of the SLNB and from there, getting a melanoma specialist if treatment is needed. SLNB's are very common since they also do them for breast cancer, even the general surgeon I had said he had performed more SLNB's than he could count. I am sure this doctor at John Hopkins is experienced in these procedures.
-
- August 31, 2016 at 9:42 pm
A melanoma specialist is neccessary after surgery, after final staging. Many of us have had our WLE and SLNB performed by both general cancer surgeons and general surgeons. I had a general surgeon and even asked a melanoma specialist prior if that was ok and she said yes, important part is finding out the results of the SLNB and from there, getting a melanoma specialist if treatment is needed. SLNB's are very common since they also do them for breast cancer, even the general surgeon I had said he had performed more SLNB's than he could count. I am sure this doctor at John Hopkins is experienced in these procedures.
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- September 1, 2016 at 12:12 am
Jenn … I was just surprised that he had already ordered imaging. Isn't that usually done after the SNB reports, and ordered by the melanoma specialist?
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- September 1, 2016 at 12:12 am
Jenn … I was just surprised that he had already ordered imaging. Isn't that usually done after the SNB reports, and ordered by the melanoma specialist?
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- September 1, 2016 at 4:24 am
Depends who the doctor is. My surgeon ordered a full body CT scan before my surgery. If anything showed up then I wouldn't have even gotten the SNLB since there would be more serious things to focus on. A lot of docs don't order scans until afterward, but it could be ordered by either a surgeon or an oncologist, typically an oncologist doesn't get involved unless the SLNB is positive. I had a PET scan after surgery.
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- September 1, 2016 at 4:24 am
Depends who the doctor is. My surgeon ordered a full body CT scan before my surgery. If anything showed up then I wouldn't have even gotten the SNLB since there would be more serious things to focus on. A lot of docs don't order scans until afterward, but it could be ordered by either a surgeon or an oncologist, typically an oncologist doesn't get involved unless the SLNB is positive. I had a PET scan after surgery.
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- September 1, 2016 at 4:24 am
Depends who the doctor is. My surgeon ordered a full body CT scan before my surgery. If anything showed up then I wouldn't have even gotten the SNLB since there would be more serious things to focus on. A lot of docs don't order scans until afterward, but it could be ordered by either a surgeon or an oncologist, typically an oncologist doesn't get involved unless the SLNB is positive. I had a PET scan after surgery.
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- September 1, 2016 at 12:12 am
Jenn … I was just surprised that he had already ordered imaging. Isn't that usually done after the SNB reports, and ordered by the melanoma specialist?
-
- August 31, 2016 at 8:21 pm
Kim, from what I have gleaned on the internet, it does not seem that Dr. Tufaro is a melanoma specialist. Am I mistaken? He appears to be a very knowledgeable surgeon, but in your father's case I would want a doctor who only sees melanoma patients — day in, day out. Those are the only doctors that can keep up in the fast-changing world of melanoma treatments.
Maybe someone else here has had experience with Johns Hopkins and can comment.
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- September 13, 2016 at 4:43 pm
Hello Everyone~
Thank you for all of your feedback. I appreciate you taking the time to read and reply. My father's scans were completed this past Friday and yesterday. Now we wait. SNLB and 2nd surgery are scheduled for 9/28/16 at J Hopkins. If scans do not come back clear (send good vibes that they are clear) then there is no need for SNLB. Hoping this will not be the case. I will keep you informed of the happenings.
Best~
Kim
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- September 13, 2016 at 4:43 pm
Hello Everyone~
Thank you for all of your feedback. I appreciate you taking the time to read and reply. My father's scans were completed this past Friday and yesterday. Now we wait. SNLB and 2nd surgery are scheduled for 9/28/16 at J Hopkins. If scans do not come back clear (send good vibes that they are clear) then there is no need for SNLB. Hoping this will not be the case. I will keep you informed of the happenings.
Best~
Kim
-
- September 13, 2016 at 4:43 pm
Hello Everyone~
Thank you for all of your feedback. I appreciate you taking the time to read and reply. My father's scans were completed this past Friday and yesterday. Now we wait. SNLB and 2nd surgery are scheduled for 9/28/16 at J Hopkins. If scans do not come back clear (send good vibes that they are clear) then there is no need for SNLB. Hoping this will not be the case. I will keep you informed of the happenings.
Best~
Kim
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Tagged: cutaneous melanoma
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