› Forums › Cutaneous Melanoma Community › Clueless newbie needs advice
- This topic has 54 replies, 8 voices, and was last updated 8 years, 8 months ago by
eturner82.
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- August 18, 2015 at 5:04 am
Hi everyone,
There are two of us using this profile. The patient is ET, and I'm her partner SF — initials used initially for privacy. I hope this is all OK. We're in "divide and conquer mode." ET is in the shower right now, scrubbing with a special antibacterial prep on her first of three days, preparing for her sentinel lymph node biopsy and WAE on Thur, August 20, and I'm getting us tapped in to this info community. We're both in this together. Obviously she has more skin in the game, so to speak.
ET got poked in the arm with a stick or branch less than a year ago, and the wound didn't quite heal right. It eventually looked like a big blood blister. Our primary care physician removed it and sent it off for a path.
To everyone's astonishment, it came back a malignant melinoma. It hasn't yet been staged, but based on the path report (included in our profile), it's almost certainly at least a III-something. Nobody has said what sort of melinoma, but it would appear to me to be an amelanotic nodular melinoma. The path report is rather ugly.ET has been referred to a general surgeon for the sentinal node biopsy and WAE. The surgeon is considered very good (I've seen her work — truly impressive — trusted by the local dermatologists), but she is not a melanoma specialist. As we are ready to go, finding another surgeon would mean a delay. As the initial excision left behind cancerous material that could be sloughing in the wound area, I'm not comfortable with any delays. Should I be concerned? Advice???
Depending on the findings of the surgeon, radiologist, and path lab, we will be referred to a physician (not yet identified) at Virginia Oncology Associates (virginiacancer.com). If ET had leukemia, I would feel we were in very good hands. However, there is not a single mention of the word "melanoma" in any of the physicians' profiles. I don't think there's even a "skin" specialist.
Certain things have possibly been overlooked in these few days since the diagnosis. First, there was no mention of a sentinel lobe biopsy. ET's very concerned dermatologist insisted this work should be done BEFORE the WAE. We talked this through with the surgeon, and that is what will happen. We are uncertain whether this would have happened this way without the intervention of the dermatologist.
Next, the path report does not include any tests for the specific mutation. This may be important for guiding ET's treatment plan later. Can they perform this testing on preserved tissues? Do we need live tissue? The only remaining live tissue will be coming out of ET's arm on Thursday. What should we do? What tests should we have ordered?
We have physicals scheduled with the GP tomorrow. As he is the referring physician, we'd like to have some good questions, requestions, and thoughts for him tomorrow. We would appreciate any and all advice we can collect here.
Meanwhile, it appears that UVA (University of Virginia) is the closest facility with a first-rate melanoma center. To be treated there, is it necessary to be accepted for a study? Or is it possibe simply to be a patient on currently approved therapies?
Also what sort of imaging do we need done? Is it standard procedure to do full-body PET and MRI scans, or do we have to scrap for these sorts of things?
So many questions, so little time. Please help! (Thanks!)
SF
- Replies
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- August 18, 2015 at 5:16 am
Sorry, I promised the path report in the profile, but the profile requires name and address, which cannot be hidden while leaving other things visible. (Why is that?) So we've hidden the profile. Here is the path report:
MALIGNANT MELANOMA.
CLARK LEVEL: V
BRESLOW THICKNESS: 9 MM
MITOTIC FIGURES/MM SQUARED: 6
ULCERATION: ABSENT
REGRESSION: ABSENT
LYMPHATIC INVASION: PRESENT
PERINEURAL INVASION: PRESENT
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Reference source not found. Error! Reference source not found. Error! Reference source not found. Page: 2/4
MICROSCOPIC SATELLITOSIS: PRESENT
TUMOR-INFILTRATING LYMPHOCYTES: NON-BRISK
ASSOCIATED MELANOCYTIC NEVUS: ABSENT
PREDOMINANT CYTOLOGY: EPITHELIOID.
SURGICAL MARGINS: INVOLVED BY TUMOR. THE LESION EXTENDS TO THE
LATERAL EDGE AND BASE OF THE SPECIMEN.
.
COMMENT: A PANEL OF IMMUNOHISTOCHEMICAL STAINS IS AS FOLLOWS:
S100-POSITIVE, MELAN A-POSITIVE, HMB45-POSITIVE. THIS IS SUPPORTIVE
OF A DIAGNOSIS OF MELANOMA. THIS TUMOR IS LARGE, AND CLINICALLY
ADVANCED. THERE IS NUMEROUS SATELLITE NODULES, FOCI OF LYMPHATIC
INVASION, AND DEEP SUBCUTANEOUS INVOLVEMENT. IN ADDITION TO WIDE
LOCAL RE-EXCISION WITH 1 CM MARGINS, A SYSTEMIC WORKUP IS NEEDED
FOR EVALUATION OF POTENTIAL METASTATIC DISEASE -
- August 18, 2015 at 5:16 am
Sorry, I promised the path report in the profile, but the profile requires name and address, which cannot be hidden while leaving other things visible. (Why is that?) So we've hidden the profile. Here is the path report:
MALIGNANT MELANOMA.
CLARK LEVEL: V
BRESLOW THICKNESS: 9 MM
MITOTIC FIGURES/MM SQUARED: 6
ULCERATION: ABSENT
REGRESSION: ABSENT
LYMPHATIC INVASION: PRESENT
PERINEURAL INVASION: PRESENT
Error! Reference source not found., Error! Reference source not found. Error! Reference source not found. Error!
Reference source not found. Error! Reference source not found. Error! Reference source not found. Page: 2/4
MICROSCOPIC SATELLITOSIS: PRESENT
TUMOR-INFILTRATING LYMPHOCYTES: NON-BRISK
ASSOCIATED MELANOCYTIC NEVUS: ABSENT
PREDOMINANT CYTOLOGY: EPITHELIOID.
SURGICAL MARGINS: INVOLVED BY TUMOR. THE LESION EXTENDS TO THE
LATERAL EDGE AND BASE OF THE SPECIMEN.
.
COMMENT: A PANEL OF IMMUNOHISTOCHEMICAL STAINS IS AS FOLLOWS:
S100-POSITIVE, MELAN A-POSITIVE, HMB45-POSITIVE. THIS IS SUPPORTIVE
OF A DIAGNOSIS OF MELANOMA. THIS TUMOR IS LARGE, AND CLINICALLY
ADVANCED. THERE IS NUMEROUS SATELLITE NODULES, FOCI OF LYMPHATIC
INVASION, AND DEEP SUBCUTANEOUS INVOLVEMENT. IN ADDITION TO WIDE
LOCAL RE-EXCISION WITH 1 CM MARGINS, A SYSTEMIC WORKUP IS NEEDED
FOR EVALUATION OF POTENTIAL METASTATIC DISEASE-
- August 18, 2015 at 9:01 am
ET-SF I am so sorry to hear this news. It's thrown you into a whole new world. What I can see of this pathology is that this is quite a thick melanoma. You'll find people here who can answer your very valid questions much more thoroughly than I, but I wanted to draw your attention to one thing. In Australia, a melanoma >4mm deep requires a 2cm wide excision, whereas your pathology recommends 1cm. I don't doubt that your surgeon would have picked up on this, but I thought I'd point it out so you are prepared for tht eventuality. SLN is recommended in Australia for mels >1mm thick.
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- August 18, 2015 at 12:48 pm
Thank you for responding! Thankfully the surgeon's plan is to excise 2 cm around the general practitioner's initial surgical margin (which was tight to the lesion.
Additional question: This lesion is deep, and ET doesn't have a lot of fat on her arm. The base of the lesion was probably closer than 2 cm to the underlying muscle. The surgeon says it is unlikely the tumor would have infiltrated the muscle, so her plan is to excise everything down to the muscle, but not cut into the muscle. This made sense to me. However, is this a realistic approach? Could there be muscle involvement? (I suppose the lab will be able to tell her whether her margins are clear.)
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- August 18, 2015 at 12:48 pm
Thank you for responding! Thankfully the surgeon's plan is to excise 2 cm around the general practitioner's initial surgical margin (which was tight to the lesion.
Additional question: This lesion is deep, and ET doesn't have a lot of fat on her arm. The base of the lesion was probably closer than 2 cm to the underlying muscle. The surgeon says it is unlikely the tumor would have infiltrated the muscle, so her plan is to excise everything down to the muscle, but not cut into the muscle. This made sense to me. However, is this a realistic approach? Could there be muscle involvement? (I suppose the lab will be able to tell her whether her margins are clear.)
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- August 18, 2015 at 12:48 pm
Thank you for responding! Thankfully the surgeon's plan is to excise 2 cm around the general practitioner's initial surgical margin (which was tight to the lesion.
Additional question: This lesion is deep, and ET doesn't have a lot of fat on her arm. The base of the lesion was probably closer than 2 cm to the underlying muscle. The surgeon says it is unlikely the tumor would have infiltrated the muscle, so her plan is to excise everything down to the muscle, but not cut into the muscle. This made sense to me. However, is this a realistic approach? Could there be muscle involvement? (I suppose the lab will be able to tell her whether her margins are clear.)
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- August 18, 2015 at 2:39 pm
Thanks for the link to the melanoma guide. It's concise and very helpful. I printed it and just now handed it off to ET. One thing they discuss is a complete lymph node disection (CLND) if the SNL comes back positive. They say 5 year survival rate was higher (72%) with CLND vs. 52% for regional lymph node disection. I'm finding corroborative evidence elsewhere. That was a few years ago, with studies still underway. What is the most current thinking? If the SNB is positive, do a CLND? Is the lymphodema at all debilitating?
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- August 18, 2015 at 2:39 pm
Thanks for the link to the melanoma guide. It's concise and very helpful. I printed it and just now handed it off to ET. One thing they discuss is a complete lymph node disection (CLND) if the SNL comes back positive. They say 5 year survival rate was higher (72%) with CLND vs. 52% for regional lymph node disection. I'm finding corroborative evidence elsewhere. That was a few years ago, with studies still underway. What is the most current thinking? If the SNB is positive, do a CLND? Is the lymphodema at all debilitating?
-
- August 18, 2015 at 2:39 pm
Thanks for the link to the melanoma guide. It's concise and very helpful. I printed it and just now handed it off to ET. One thing they discuss is a complete lymph node disection (CLND) if the SNL comes back positive. They say 5 year survival rate was higher (72%) with CLND vs. 52% for regional lymph node disection. I'm finding corroborative evidence elsewhere. That was a few years ago, with studies still underway. What is the most current thinking? If the SNB is positive, do a CLND? Is the lymphodema at all debilitating?
-
- August 18, 2015 at 9:43 pm
No worries. That guide was done in 2012 and things have changed for the better since then – more treatments, and more effective treatments, and over time higher survivals. It gives you the basics but it's three years old, and that's a long time in the world of melanoma research and medicine!
Stars
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- August 18, 2015 at 9:43 pm
No worries. That guide was done in 2012 and things have changed for the better since then – more treatments, and more effective treatments, and over time higher survivals. It gives you the basics but it's three years old, and that's a long time in the world of melanoma research and medicine!
Stars
-
- August 18, 2015 at 9:43 pm
No worries. That guide was done in 2012 and things have changed for the better since then – more treatments, and more effective treatments, and over time higher survivals. It gives you the basics but it's three years old, and that's a long time in the world of melanoma research and medicine!
Stars
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- August 18, 2015 at 9:01 am
ET-SF I am so sorry to hear this news. It's thrown you into a whole new world. What I can see of this pathology is that this is quite a thick melanoma. You'll find people here who can answer your very valid questions much more thoroughly than I, but I wanted to draw your attention to one thing. In Australia, a melanoma >4mm deep requires a 2cm wide excision, whereas your pathology recommends 1cm. I don't doubt that your surgeon would have picked up on this, but I thought I'd point it out so you are prepared for tht eventuality. SLN is recommended in Australia for mels >1mm thick.
-
- August 18, 2015 at 9:01 am
ET-SF I am so sorry to hear this news. It's thrown you into a whole new world. What I can see of this pathology is that this is quite a thick melanoma. You'll find people here who can answer your very valid questions much more thoroughly than I, but I wanted to draw your attention to one thing. In Australia, a melanoma >4mm deep requires a 2cm wide excision, whereas your pathology recommends 1cm. I don't doubt that your surgeon would have picked up on this, but I thought I'd point it out so you are prepared for tht eventuality. SLN is recommended in Australia for mels >1mm thick.
-
- August 18, 2015 at 5:16 am
Sorry, I promised the path report in the profile, but the profile requires name and address, which cannot be hidden while leaving other things visible. (Why is that?) So we've hidden the profile. Here is the path report:
MALIGNANT MELANOMA.
CLARK LEVEL: V
BRESLOW THICKNESS: 9 MM
MITOTIC FIGURES/MM SQUARED: 6
ULCERATION: ABSENT
REGRESSION: ABSENT
LYMPHATIC INVASION: PRESENT
PERINEURAL INVASION: PRESENT
Error! Reference source not found., Error! Reference source not found. Error! Reference source not found. Error!
Reference source not found. Error! Reference source not found. Error! Reference source not found. Page: 2/4
MICROSCOPIC SATELLITOSIS: PRESENT
TUMOR-INFILTRATING LYMPHOCYTES: NON-BRISK
ASSOCIATED MELANOCYTIC NEVUS: ABSENT
PREDOMINANT CYTOLOGY: EPITHELIOID.
SURGICAL MARGINS: INVOLVED BY TUMOR. THE LESION EXTENDS TO THE
LATERAL EDGE AND BASE OF THE SPECIMEN.
.
COMMENT: A PANEL OF IMMUNOHISTOCHEMICAL STAINS IS AS FOLLOWS:
S100-POSITIVE, MELAN A-POSITIVE, HMB45-POSITIVE. THIS IS SUPPORTIVE
OF A DIAGNOSIS OF MELANOMA. THIS TUMOR IS LARGE, AND CLINICALLY
ADVANCED. THERE IS NUMEROUS SATELLITE NODULES, FOCI OF LYMPHATIC
INVASION, AND DEEP SUBCUTANEOUS INVOLVEMENT. IN ADDITION TO WIDE
LOCAL RE-EXCISION WITH 1 CM MARGINS, A SYSTEMIC WORKUP IS NEEDED
FOR EVALUATION OF POTENTIAL METASTATIC DISEASE -
- August 18, 2015 at 2:31 pm
Hi SF,
I am so sorry you and ET are going through all of this. It is likely your surgeon is hoping to not have to cut into the muscle unless absolutely necessarily to get clear margins. With melanoma, the first and biggest priority is to surgically excise the melanoma with clear margins if at all possible. As stars said, it is a thick melanoma. You will want to be seen at the melanoma center as soon as you can get there. At your appointment tomorrow, I would ask about testing for genetic mutations, it is a good question. The melanoma center will want a copy of all of ET's medical records, including the pathology reports, and I believe most labs hold onto the specimens for a period of time which would allow the melanoma center to order further testing, but that might be another question for tomorrow.
I'm not an expert, just another patient, but my understanding is that SLNB, WLE, and 2 cm margins are standard of care for a melanoma this size, as will be a screening PET CT. Even if her lymph nodes are clear, a melanoma of 9 mm with a mitosis of 6 would likely warrant close (i.e. probably every 3-month) followup for a few years, with periodic routine scans. You should have no problems getting established with a melanoma specialist or team of specialists regardless of ET's staging. Whether or not she would qualify for a treatment study would be determined by whether or not she has metastasis, which will show on the PET CT, as most studies that I know of are for stage IV (metastasis) patients only. For the rest of us, including stage III (positive lymph nodes), close followup is the standard of care at this time, with how often and the frequency of scans determined by staging. You will want to be in the hands of specialists up-to-date on the latest and best treatment recommendations for any stage or circumstances.
Best wishes to you both!
-
- August 18, 2015 at 2:31 pm
Hi SF,
I am so sorry you and ET are going through all of this. It is likely your surgeon is hoping to not have to cut into the muscle unless absolutely necessarily to get clear margins. With melanoma, the first and biggest priority is to surgically excise the melanoma with clear margins if at all possible. As stars said, it is a thick melanoma. You will want to be seen at the melanoma center as soon as you can get there. At your appointment tomorrow, I would ask about testing for genetic mutations, it is a good question. The melanoma center will want a copy of all of ET's medical records, including the pathology reports, and I believe most labs hold onto the specimens for a period of time which would allow the melanoma center to order further testing, but that might be another question for tomorrow.
I'm not an expert, just another patient, but my understanding is that SLNB, WLE, and 2 cm margins are standard of care for a melanoma this size, as will be a screening PET CT. Even if her lymph nodes are clear, a melanoma of 9 mm with a mitosis of 6 would likely warrant close (i.e. probably every 3-month) followup for a few years, with periodic routine scans. You should have no problems getting established with a melanoma specialist or team of specialists regardless of ET's staging. Whether or not she would qualify for a treatment study would be determined by whether or not she has metastasis, which will show on the PET CT, as most studies that I know of are for stage IV (metastasis) patients only. For the rest of us, including stage III (positive lymph nodes), close followup is the standard of care at this time, with how often and the frequency of scans determined by staging. You will want to be in the hands of specialists up-to-date on the latest and best treatment recommendations for any stage or circumstances.
Best wishes to you both!
-
- August 18, 2015 at 2:48 pm
Thank you! Lots of good info.
I am beginning to appreciate the limitations of our GP's knowledge. I was recently appalled at his ignorance of research in another field. He's definitely over his head on this one. The surgeon seems to be making good decision… I think.
It appears UVA and Georgetown are our closest centers. So far I'm hearing more about UVA than Georgetown. Any thoughts?
-
- August 18, 2015 at 2:48 pm
Thank you! Lots of good info.
I am beginning to appreciate the limitations of our GP's knowledge. I was recently appalled at his ignorance of research in another field. He's definitely over his head on this one. The surgeon seems to be making good decision… I think.
It appears UVA and Georgetown are our closest centers. So far I'm hearing more about UVA than Georgetown. Any thoughts?
-
- August 18, 2015 at 5:47 pm
I have heard good things about Johns Hopkins for melanoma treatment. In fact, it was one of a handful of treatment centers recommended by my local oncologist. Others in your area may have some input on this, but a possible resource for this:
http://melanomainternational.org/web-resources/cancer-centers/
I recently read a post by another member here who stays very current on the latest research (Celeste, user name Bubbles) in which she said that lymphadenectomy after positive SLNB is now widely considered to lead to better outcome, though also still highly controversial. Lymphedema can be debilitating (swelling, aching) and it seems like it is hard to predict who will have problems with it and to what degree. I believe it is somewhat treatable/manageable with compression stockings/wraps, but it is not reversible.
-
- August 18, 2015 at 7:09 pm
I don't know where you live but the Drs at Washington Hospital Center have moved to a new Center at Inova Fairfax Hospital. I was a former pt at Washington Hospital Center and when the new center opened followed them to new location. There is Derm/Onc, and 2 Melanoma Oncologists and oncology surgeon. I have received excellent care there. I live in Warrenton, Va and it it approx 40 miles for me. There is also a Melanoma Support group located near the hospital which meets quarterly. I don't know where you live but it could be more convienent esp for follow up care. The phone # is 703 970 6430. Hope this helps.
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- August 18, 2015 at 7:09 pm
I don't know where you live but the Drs at Washington Hospital Center have moved to a new Center at Inova Fairfax Hospital. I was a former pt at Washington Hospital Center and when the new center opened followed them to new location. There is Derm/Onc, and 2 Melanoma Oncologists and oncology surgeon. I have received excellent care there. I live in Warrenton, Va and it it approx 40 miles for me. There is also a Melanoma Support group located near the hospital which meets quarterly. I don't know where you live but it could be more convienent esp for follow up care. The phone # is 703 970 6430. Hope this helps.
-
- August 18, 2015 at 7:09 pm
I don't know where you live but the Drs at Washington Hospital Center have moved to a new Center at Inova Fairfax Hospital. I was a former pt at Washington Hospital Center and when the new center opened followed them to new location. There is Derm/Onc, and 2 Melanoma Oncologists and oncology surgeon. I have received excellent care there. I live in Warrenton, Va and it it approx 40 miles for me. There is also a Melanoma Support group located near the hospital which meets quarterly. I don't know where you live but it could be more convienent esp for follow up care. The phone # is 703 970 6430. Hope this helps.
-
- August 18, 2015 at 9:57 pm
Actually CHD, the new study done in Germany that was reported at the 2015 ASCO meeting found just the opposite. Doing a complete removal of the lymph node in the German study found no overall survival benefit. There is a big study being run in the states, that won't report until later this decade, kind of late to help in making a decison today. The German study recommended close follow up with ultra sound of the nodal basin. The standard of care in the U.S.A. is still to do the complete removal after a positive sentinal node biopsy. I do recomment going to Celeste blog where she has great up to date information on trials and studies. Finding a Melanoma specialist is probably the most important decision you can make at this time. Wishing you the best!!!! Ed
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- August 18, 2015 at 9:57 pm
Actually CHD, the new study done in Germany that was reported at the 2015 ASCO meeting found just the opposite. Doing a complete removal of the lymph node in the German study found no overall survival benefit. There is a big study being run in the states, that won't report until later this decade, kind of late to help in making a decison today. The German study recommended close follow up with ultra sound of the nodal basin. The standard of care in the U.S.A. is still to do the complete removal after a positive sentinal node biopsy. I do recomment going to Celeste blog where she has great up to date information on trials and studies. Finding a Melanoma specialist is probably the most important decision you can make at this time. Wishing you the best!!!! Ed
-
- August 18, 2015 at 9:57 pm
Actually CHD, the new study done in Germany that was reported at the 2015 ASCO meeting found just the opposite. Doing a complete removal of the lymph node in the German study found no overall survival benefit. There is a big study being run in the states, that won't report until later this decade, kind of late to help in making a decison today. The German study recommended close follow up with ultra sound of the nodal basin. The standard of care in the U.S.A. is still to do the complete removal after a positive sentinal node biopsy. I do recomment going to Celeste blog where she has great up to date information on trials and studies. Finding a Melanoma specialist is probably the most important decision you can make at this time. Wishing you the best!!!! Ed
-
- August 18, 2015 at 5:47 pm
I have heard good things about Johns Hopkins for melanoma treatment. In fact, it was one of a handful of treatment centers recommended by my local oncologist. Others in your area may have some input on this, but a possible resource for this:
http://melanomainternational.org/web-resources/cancer-centers/
I recently read a post by another member here who stays very current on the latest research (Celeste, user name Bubbles) in which she said that lymphadenectomy after positive SLNB is now widely considered to lead to better outcome, though also still highly controversial. Lymphedema can be debilitating (swelling, aching) and it seems like it is hard to predict who will have problems with it and to what degree. I believe it is somewhat treatable/manageable with compression stockings/wraps, but it is not reversible.
-
- August 18, 2015 at 5:47 pm
I have heard good things about Johns Hopkins for melanoma treatment. In fact, it was one of a handful of treatment centers recommended by my local oncologist. Others in your area may have some input on this, but a possible resource for this:
http://melanomainternational.org/web-resources/cancer-centers/
I recently read a post by another member here who stays very current on the latest research (Celeste, user name Bubbles) in which she said that lymphadenectomy after positive SLNB is now widely considered to lead to better outcome, though also still highly controversial. Lymphedema can be debilitating (swelling, aching) and it seems like it is hard to predict who will have problems with it and to what degree. I believe it is somewhat treatable/manageable with compression stockings/wraps, but it is not reversible.
-
- August 18, 2015 at 2:48 pm
Thank you! Lots of good info.
I am beginning to appreciate the limitations of our GP's knowledge. I was recently appalled at his ignorance of research in another field. He's definitely over his head on this one. The surgeon seems to be making good decision… I think.
It appears UVA and Georgetown are our closest centers. So far I'm hearing more about UVA than Georgetown. Any thoughts?
-
- August 18, 2015 at 2:31 pm
Hi SF,
I am so sorry you and ET are going through all of this. It is likely your surgeon is hoping to not have to cut into the muscle unless absolutely necessarily to get clear margins. With melanoma, the first and biggest priority is to surgically excise the melanoma with clear margins if at all possible. As stars said, it is a thick melanoma. You will want to be seen at the melanoma center as soon as you can get there. At your appointment tomorrow, I would ask about testing for genetic mutations, it is a good question. The melanoma center will want a copy of all of ET's medical records, including the pathology reports, and I believe most labs hold onto the specimens for a period of time which would allow the melanoma center to order further testing, but that might be another question for tomorrow.
I'm not an expert, just another patient, but my understanding is that SLNB, WLE, and 2 cm margins are standard of care for a melanoma this size, as will be a screening PET CT. Even if her lymph nodes are clear, a melanoma of 9 mm with a mitosis of 6 would likely warrant close (i.e. probably every 3-month) followup for a few years, with periodic routine scans. You should have no problems getting established with a melanoma specialist or team of specialists regardless of ET's staging. Whether or not she would qualify for a treatment study would be determined by whether or not she has metastasis, which will show on the PET CT, as most studies that I know of are for stage IV (metastasis) patients only. For the rest of us, including stage III (positive lymph nodes), close followup is the standard of care at this time, with how often and the frequency of scans determined by staging. You will want to be in the hands of specialists up-to-date on the latest and best treatment recommendations for any stage or circumstances.
Best wishes to you both!
-
- August 19, 2015 at 1:12 am
I am a patient at Johns Hopkins, and am quite happy there. I see Dr. Sharfman, but I know Dr. Lipson also comes very highly recommended at Hopkins. I was diagnosed Stage IV in January, and started the yervoy (ipi) plus Opdivo (nivo) trial in late February. all but one of my tumors are gone, and the last one is stable!
i first had melanoma in 2006 while living near Chicago, so I was treated at University of Chicago Hopsital. I had a SNB under both arms, and a WLE. I have lymphedema in both arms, but it is extremely manageable for me. I was taught how to do self lymph massage and I wear compression sleeves. Some days are better than others, and I may not wear the sleeves at all on some good days! I just received some nigh t sleeves, so I am excited to see how well they work. I know every patient is different, and I am quite lucky to have such a mild case of lymphedema.
I wish you both the best!
-
- August 19, 2015 at 1:12 am
I am a patient at Johns Hopkins, and am quite happy there. I see Dr. Sharfman, but I know Dr. Lipson also comes very highly recommended at Hopkins. I was diagnosed Stage IV in January, and started the yervoy (ipi) plus Opdivo (nivo) trial in late February. all but one of my tumors are gone, and the last one is stable!
i first had melanoma in 2006 while living near Chicago, so I was treated at University of Chicago Hopsital. I had a SNB under both arms, and a WLE. I have lymphedema in both arms, but it is extremely manageable for me. I was taught how to do self lymph massage and I wear compression sleeves. Some days are better than others, and I may not wear the sleeves at all on some good days! I just received some nigh t sleeves, so I am excited to see how well they work. I know every patient is different, and I am quite lucky to have such a mild case of lymphedema.
I wish you both the best!
-
- August 19, 2015 at 1:12 am
I am a patient at Johns Hopkins, and am quite happy there. I see Dr. Sharfman, but I know Dr. Lipson also comes very highly recommended at Hopkins. I was diagnosed Stage IV in January, and started the yervoy (ipi) plus Opdivo (nivo) trial in late February. all but one of my tumors are gone, and the last one is stable!
i first had melanoma in 2006 while living near Chicago, so I was treated at University of Chicago Hopsital. I had a SNB under both arms, and a WLE. I have lymphedema in both arms, but it is extremely manageable for me. I was taught how to do self lymph massage and I wear compression sleeves. Some days are better than others, and I may not wear the sleeves at all on some good days! I just received some nigh t sleeves, so I am excited to see how well they work. I know every patient is different, and I am quite lucky to have such a mild case of lymphedema.
I wish you both the best!
-
- August 19, 2015 at 5:03 am
Just some. I can't remember off hand how many exactly, but that could be why I have a mild case!
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- August 20, 2015 at 1:08 pm
I live in Northern Virginia and have been treated at Inova Fairfax, UVA, Johns Hopkins, and currently Georgetown. Honestly, all are good. Oh, I was also treated at NIH. Dr. Evan Lipson from Hopkins is great and he holds clinic in NW DC at Sibley Hospital on Thursdays so that his DC/VA patients don't have to drive all the way to Baltimore. (Sibley has a partnership with Hopkins.) He is from the area and has many connections…he will go to great lengths to find the best treatment for his patients. He is the reason why I now am being treated at Georgetown by Dr. Michael Atkins. In June of 2014 I had been released from NIH (a trial that Dr. Lipson helped me get into) and was in need of further treatment as the NIH trial did not succeed. Lombardi Cancer Center at Georgetown offered Keytruda in an extended access program. (Keytruda was then called Pembrolizumab and was not yet FDA approved.) Hopkins was scheduled to participate in the Extended Access Program as well but they didn't have it yet. Dr. Lipson contacted Dr. Atkins and got me into the Extended Access Program at Georgetown. Dr. Atkins is also wonderful and has years of experience. I responded to Keytruda and No Evidence of Disease was seen in my June PET scan. (I am Stage IV with melanoma here there and everywhere.) I will continue at Georgetown and I also keep in contact with Dr. Lipson. UVA was also good…just wanted something a little closer to home as well as a second opinion. You can be seen in their Melanoma Center with or without participating at their clinical trials. I was treated by Dr. Grosh. He's also very good. There is a new melanoma specialist there but I don't know his name. There is also a surgeon who specializes in melanoma who has a fantastic reputation. I'm trying to remember his name…Dr. Slingluff or something like that. I'll look it up and post again. The key to all three of these institutions is that they all research, educate, and communicate/consult with doctors all over the world. They know the latest in Melanoma treatments. I don't know much about the new cancer center at Inova, but it promises to be good as well.
Good luck to you!
Terrie
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- August 20, 2015 at 1:08 pm
I live in Northern Virginia and have been treated at Inova Fairfax, UVA, Johns Hopkins, and currently Georgetown. Honestly, all are good. Oh, I was also treated at NIH. Dr. Evan Lipson from Hopkins is great and he holds clinic in NW DC at Sibley Hospital on Thursdays so that his DC/VA patients don't have to drive all the way to Baltimore. (Sibley has a partnership with Hopkins.) He is from the area and has many connections…he will go to great lengths to find the best treatment for his patients. He is the reason why I now am being treated at Georgetown by Dr. Michael Atkins. In June of 2014 I had been released from NIH (a trial that Dr. Lipson helped me get into) and was in need of further treatment as the NIH trial did not succeed. Lombardi Cancer Center at Georgetown offered Keytruda in an extended access program. (Keytruda was then called Pembrolizumab and was not yet FDA approved.) Hopkins was scheduled to participate in the Extended Access Program as well but they didn't have it yet. Dr. Lipson contacted Dr. Atkins and got me into the Extended Access Program at Georgetown. Dr. Atkins is also wonderful and has years of experience. I responded to Keytruda and No Evidence of Disease was seen in my June PET scan. (I am Stage IV with melanoma here there and everywhere.) I will continue at Georgetown and I also keep in contact with Dr. Lipson. UVA was also good…just wanted something a little closer to home as well as a second opinion. You can be seen in their Melanoma Center with or without participating at their clinical trials. I was treated by Dr. Grosh. He's also very good. There is a new melanoma specialist there but I don't know his name. There is also a surgeon who specializes in melanoma who has a fantastic reputation. I'm trying to remember his name…Dr. Slingluff or something like that. I'll look it up and post again. The key to all three of these institutions is that they all research, educate, and communicate/consult with doctors all over the world. They know the latest in Melanoma treatments. I don't know much about the new cancer center at Inova, but it promises to be good as well.
Good luck to you!
Terrie
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- August 20, 2015 at 1:08 pm
I live in Northern Virginia and have been treated at Inova Fairfax, UVA, Johns Hopkins, and currently Georgetown. Honestly, all are good. Oh, I was also treated at NIH. Dr. Evan Lipson from Hopkins is great and he holds clinic in NW DC at Sibley Hospital on Thursdays so that his DC/VA patients don't have to drive all the way to Baltimore. (Sibley has a partnership with Hopkins.) He is from the area and has many connections…he will go to great lengths to find the best treatment for his patients. He is the reason why I now am being treated at Georgetown by Dr. Michael Atkins. In June of 2014 I had been released from NIH (a trial that Dr. Lipson helped me get into) and was in need of further treatment as the NIH trial did not succeed. Lombardi Cancer Center at Georgetown offered Keytruda in an extended access program. (Keytruda was then called Pembrolizumab and was not yet FDA approved.) Hopkins was scheduled to participate in the Extended Access Program as well but they didn't have it yet. Dr. Lipson contacted Dr. Atkins and got me into the Extended Access Program at Georgetown. Dr. Atkins is also wonderful and has years of experience. I responded to Keytruda and No Evidence of Disease was seen in my June PET scan. (I am Stage IV with melanoma here there and everywhere.) I will continue at Georgetown and I also keep in contact with Dr. Lipson. UVA was also good…just wanted something a little closer to home as well as a second opinion. You can be seen in their Melanoma Center with or without participating at their clinical trials. I was treated by Dr. Grosh. He's also very good. There is a new melanoma specialist there but I don't know his name. There is also a surgeon who specializes in melanoma who has a fantastic reputation. I'm trying to remember his name…Dr. Slingluff or something like that. I'll look it up and post again. The key to all three of these institutions is that they all research, educate, and communicate/consult with doctors all over the world. They know the latest in Melanoma treatments. I don't know much about the new cancer center at Inova, but it promises to be good as well.
Good luck to you!
Terrie
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- August 19, 2015 at 5:03 am
Just some. I can't remember off hand how many exactly, but that could be why I have a mild case!
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- August 19, 2015 at 5:03 am
Just some. I can't remember off hand how many exactly, but that could be why I have a mild case!
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- August 23, 2015 at 9:45 pm
Hi, ET-SF
My hubby ( stage 4) and I also live in Virginia and go to UVA… I truly like UVA! When Adam was stage 3 we saw Creig Slinguff and he is a WONDERFUL doctor ( wonderful bedside manner ). He big into research and trials. When Adam became stage 4 we started seeing Geffery Weiss ( who just retired:( ). We now are seeing Elizebeth Gaughn( she seems super nice and on top of things thus far). Best of luck
Emily
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- August 23, 2015 at 9:45 pm
Hi, ET-SF
My hubby ( stage 4) and I also live in Virginia and go to UVA… I truly like UVA! When Adam was stage 3 we saw Creig Slinguff and he is a WONDERFUL doctor ( wonderful bedside manner ). He big into research and trials. When Adam became stage 4 we started seeing Geffery Weiss ( who just retired:( ). We now are seeing Elizebeth Gaughn( she seems super nice and on top of things thus far). Best of luck
Emily
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- August 23, 2015 at 9:45 pm
Hi, ET-SF
My hubby ( stage 4) and I also live in Virginia and go to UVA… I truly like UVA! When Adam was stage 3 we saw Creig Slinguff and he is a WONDERFUL doctor ( wonderful bedside manner ). He big into research and trials. When Adam became stage 4 we started seeing Geffery Weiss ( who just retired:( ). We now are seeing Elizebeth Gaughn( she seems super nice and on top of things thus far). Best of luck
Emily
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Tagged: cutaneous melanoma
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