› Forums › General Melanoma Community › Hello…I’m new
- This topic has 63 replies, 6 voices, and was last updated 7 years, 9 months ago by
slh4448.
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- July 20, 2016 at 9:48 pm
Hello everyone,
My name is Stacy and I'm a 51 year old male that was diagnosed with melanoma back on May 24th. The original pathology report from my Dermatologist came back stating Clark's level IV, 2.37mm with no ulceration on my right knee and malignant melanoma in situ on my right neck. My chest xray is clear. I live in Kansas City. I went down to MD Anderson on June 22nd and met with Dr. Royal for a second opinion. Both Dr. Royal and my Surgical Oncologist here at the University of Kansas Hospital Cancer Center believed that my right knee identifies more as stage two.
Last week on July 12th, I had a Sentinel Lymph Node Biopsy of one node removed from my groin area. I also had a wide local excision procedure on my right knee and right neck. The pathology report that came back states each location is negative for melanoma. However my SLNB came back positive for metastatic melanoma. 3mm in maximum diameter and involves 7% of nodal cross sectional area and negative for extracapsular extension.
I was given these results on July 18th. I was told because of the positive lymph node, that my melanoma is now at stage three (T3aN1a). I have a pet scan scheduled for July 25th and an mri of my brain scheduled for July 28th to determine if any other areas have been affected. I meet with my surgical oncologist on July 28th to go over all of the upcoming results, etc.
I have sent my latest pathology report down to my oncologist at MD Anderson for his opinion as well.
I would welcome any thoughts, suggestions or ideas as to how I go about attacking this from here.
Regards,
Stacy
- Replies
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- July 20, 2016 at 11:14 pm
Hey Stacy-I'm Toby-Sioux city iowa (north of Kc) I'm a 3b melanoma guy-42yoa. Welcome to the club. I go to mayo. Md Anderson, Mayo, and Sloan Kettering are the big three for melanoma in my opinion. Smart move on going to a melanoma onc. I was diagnosed in 2013 and am NED. I had to learn to surround myself with good Drs. Make informed decisions about my care and realize that I don't make the sun rise every morning. That is; I can only do so much and worrying won't help my situation. I chose watch and wait over interferon (not recommended by my mayo onc). There are some newer chemicals they can dump into you and they may be effective. Md Anderson is outstanding and will make things much easier for you decision wise-you are going to the best-find comfort in that. Getting the big C will definitely jumble your priorities in life -in my case it helped show me what was truly important. Good luck! And may God watch over you and give you comfort. I will be praying specifically for you.
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- July 21, 2016 at 2:56 pm
Thank you Toby for reaching out and telling me some of your story. I've had email conversations back and forth with MD Anderson since my latest Patho report came back on Monday confirming a positive lymph node for cancer. They have stated that they are in contact with my oncologist here in KC at KU Hosp. But I still need to have my pet scan and mri completed and read before we know what my true pathologic stage really is. Should I perhpas need any therapy, my research shows me that immunotherapy is really the way to go and perhaps targeted therapy a second way to go??? I will keep you informed and thank you for your prayers!! I happy to read that you are NED….that's great!!
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- July 21, 2016 at 2:56 pm
Thank you Toby for reaching out and telling me some of your story. I've had email conversations back and forth with MD Anderson since my latest Patho report came back on Monday confirming a positive lymph node for cancer. They have stated that they are in contact with my oncologist here in KC at KU Hosp. But I still need to have my pet scan and mri completed and read before we know what my true pathologic stage really is. Should I perhpas need any therapy, my research shows me that immunotherapy is really the way to go and perhaps targeted therapy a second way to go??? I will keep you informed and thank you for your prayers!! I happy to read that you are NED….that's great!!
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- July 21, 2016 at 2:56 pm
Thank you Toby for reaching out and telling me some of your story. I've had email conversations back and forth with MD Anderson since my latest Patho report came back on Monday confirming a positive lymph node for cancer. They have stated that they are in contact with my oncologist here in KC at KU Hosp. But I still need to have my pet scan and mri completed and read before we know what my true pathologic stage really is. Should I perhpas need any therapy, my research shows me that immunotherapy is really the way to go and perhaps targeted therapy a second way to go??? I will keep you informed and thank you for your prayers!! I happy to read that you are NED….that's great!!
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- July 20, 2016 at 11:14 pm
Hey Stacy-I'm Toby-Sioux city iowa (north of Kc) I'm a 3b melanoma guy-42yoa. Welcome to the club. I go to mayo. Md Anderson, Mayo, and Sloan Kettering are the big three for melanoma in my opinion. Smart move on going to a melanoma onc. I was diagnosed in 2013 and am NED. I had to learn to surround myself with good Drs. Make informed decisions about my care and realize that I don't make the sun rise every morning. That is; I can only do so much and worrying won't help my situation. I chose watch and wait over interferon (not recommended by my mayo onc). There are some newer chemicals they can dump into you and they may be effective. Md Anderson is outstanding and will make things much easier for you decision wise-you are going to the best-find comfort in that. Getting the big C will definitely jumble your priorities in life -in my case it helped show me what was truly important. Good luck! And may God watch over you and give you comfort. I will be praying specifically for you.
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- July 20, 2016 at 11:14 pm
Hey Stacy-I'm Toby-Sioux city iowa (north of Kc) I'm a 3b melanoma guy-42yoa. Welcome to the club. I go to mayo. Md Anderson, Mayo, and Sloan Kettering are the big three for melanoma in my opinion. Smart move on going to a melanoma onc. I was diagnosed in 2013 and am NED. I had to learn to surround myself with good Drs. Make informed decisions about my care and realize that I don't make the sun rise every morning. That is; I can only do so much and worrying won't help my situation. I chose watch and wait over interferon (not recommended by my mayo onc). There are some newer chemicals they can dump into you and they may be effective. Md Anderson is outstanding and will make things much easier for you decision wise-you are going to the best-find comfort in that. Getting the big C will definitely jumble your priorities in life -in my case it helped show me what was truly important. Good luck! And may God watch over you and give you comfort. I will be praying specifically for you.
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- July 20, 2016 at 11:20 pm
Hi Stacy,
Sorry you have found this place. I mean Its a wonderful forum full of great advice and support, but you are now a member of the club no one wants to belong to. It sounds as if you are getting good care at this point. Lymph node involvement is an automatic stage 3, but final staging for treatment will be determined after scans. Spread to any distant place moves you to stage 4 and until this determination is made, no treatment will occur. Hang in there and don't stress more than you must. There's no upside to it. Be absolutely sure you see a specialist that only treats melanoma patients. Treatment options have come a long way in a short time. Almost everything on the internet is out of date.
Gary
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- July 20, 2016 at 11:20 pm
Hi Stacy,
Sorry you have found this place. I mean Its a wonderful forum full of great advice and support, but you are now a member of the club no one wants to belong to. It sounds as if you are getting good care at this point. Lymph node involvement is an automatic stage 3, but final staging for treatment will be determined after scans. Spread to any distant place moves you to stage 4 and until this determination is made, no treatment will occur. Hang in there and don't stress more than you must. There's no upside to it. Be absolutely sure you see a specialist that only treats melanoma patients. Treatment options have come a long way in a short time. Almost everything on the internet is out of date.
Gary
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- July 20, 2016 at 11:20 pm
Hi Stacy,
Sorry you have found this place. I mean Its a wonderful forum full of great advice and support, but you are now a member of the club no one wants to belong to. It sounds as if you are getting good care at this point. Lymph node involvement is an automatic stage 3, but final staging for treatment will be determined after scans. Spread to any distant place moves you to stage 4 and until this determination is made, no treatment will occur. Hang in there and don't stress more than you must. There's no upside to it. Be absolutely sure you see a specialist that only treats melanoma patients. Treatment options have come a long way in a short time. Almost everything on the internet is out of date.
Gary
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- July 21, 2016 at 1:02 am
Stacy, I am sorry about your situation. I go to dr Doolittle at the university of Kansas in kc and have been pleased with him. Stay aggressive.
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- July 21, 2016 at 3:03 pm
Aaron…thanks for your message. I was automatically referred by my Derm to Dr. Mammen at KU. Dr. Mammen actually did his fellowship at MD Anderson and when I went down to MD for a second opinion, the Oncologist that I saw there helped train Dr. Mammen and told me that I would be in good hands with Dr. Mammen at KU if I wanted them to handle my case, etc. I have asked MD Anderson to start consulting with Dr. Mammen and they are doing that now. I'm glad to know that your doctor is good and that you are pleased with him…good for you!!! Keep in touch…
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- July 21, 2016 at 3:03 pm
Aaron…thanks for your message. I was automatically referred by my Derm to Dr. Mammen at KU. Dr. Mammen actually did his fellowship at MD Anderson and when I went down to MD for a second opinion, the Oncologist that I saw there helped train Dr. Mammen and told me that I would be in good hands with Dr. Mammen at KU if I wanted them to handle my case, etc. I have asked MD Anderson to start consulting with Dr. Mammen and they are doing that now. I'm glad to know that your doctor is good and that you are pleased with him…good for you!!! Keep in touch…
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- July 22, 2016 at 5:19 pm
Hey Aaron,
That's interesting for me to learn from that Dr. Mammen referred you to Dr. Doolittle. I wonder why? Could you provide any insight into that referral if you are comfortable in sharing? If not, no big deal, really. I was just curious! Thanks!!
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- July 22, 2016 at 5:19 pm
Hey Aaron,
That's interesting for me to learn from that Dr. Mammen referred you to Dr. Doolittle. I wonder why? Could you provide any insight into that referral if you are comfortable in sharing? If not, no big deal, really. I was just curious! Thanks!!
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- July 27, 2016 at 2:49 pm
Hi Aaron,
I have an appointment with Dr. Doolittle on August 15th to go over everything including the BRAF results. Since he is a Medical Oncologist I am being referred to him because he would discuss with me treatment options and a gameplan, etc. Dr. Mammen is a Surgical Oncologist and so he only does surgery.
I know that you posted that you are happy with Dr. Doolittle so far. How was he to speak to about your options regarding treatment? Was he all ears or was he more demanding about doing treatment? I have also heard some good things about him so that makes me feel better! Did you have a CLND and if so, was it in the groin or arms? And if you had a CLND how well did you recover, etc? I'm weighing as to have the CLND of my groin or not. Thanks,
Stacy
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- July 27, 2016 at 2:49 pm
Hi Aaron,
I have an appointment with Dr. Doolittle on August 15th to go over everything including the BRAF results. Since he is a Medical Oncologist I am being referred to him because he would discuss with me treatment options and a gameplan, etc. Dr. Mammen is a Surgical Oncologist and so he only does surgery.
I know that you posted that you are happy with Dr. Doolittle so far. How was he to speak to about your options regarding treatment? Was he all ears or was he more demanding about doing treatment? I have also heard some good things about him so that makes me feel better! Did you have a CLND and if so, was it in the groin or arms? And if you had a CLND how well did you recover, etc? I'm weighing as to have the CLND of my groin or not. Thanks,
Stacy
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- July 27, 2016 at 2:49 pm
Hi Aaron,
I have an appointment with Dr. Doolittle on August 15th to go over everything including the BRAF results. Since he is a Medical Oncologist I am being referred to him because he would discuss with me treatment options and a gameplan, etc. Dr. Mammen is a Surgical Oncologist and so he only does surgery.
I know that you posted that you are happy with Dr. Doolittle so far. How was he to speak to about your options regarding treatment? Was he all ears or was he more demanding about doing treatment? I have also heard some good things about him so that makes me feel better! Did you have a CLND and if so, was it in the groin or arms? And if you had a CLND how well did you recover, etc? I'm weighing as to have the CLND of my groin or not. Thanks,
Stacy
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- July 22, 2016 at 5:19 pm
Hey Aaron,
That's interesting for me to learn from that Dr. Mammen referred you to Dr. Doolittle. I wonder why? Could you provide any insight into that referral if you are comfortable in sharing? If not, no big deal, really. I was just curious! Thanks!!
-
- July 21, 2016 at 3:03 pm
Aaron…thanks for your message. I was automatically referred by my Derm to Dr. Mammen at KU. Dr. Mammen actually did his fellowship at MD Anderson and when I went down to MD for a second opinion, the Oncologist that I saw there helped train Dr. Mammen and told me that I would be in good hands with Dr. Mammen at KU if I wanted them to handle my case, etc. I have asked MD Anderson to start consulting with Dr. Mammen and they are doing that now. I'm glad to know that your doctor is good and that you are pleased with him…good for you!!! Keep in touch…
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- July 21, 2016 at 6:25 pm
Have them test for BRAF status so you know. Hopefully it will never come to a point where that is necessary to know but we had it checked for my dad from the original surgery. The docs are glad it has already been done now that he has brain mets so they didn’t need to start digging for a sample. One fewer thing to mess with at this stage at least.Keeping fingers crossed all is clear on your scans.
Annie
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- July 21, 2016 at 6:25 pm
Have them test for BRAF status so you know. Hopefully it will never come to a point where that is necessary to know but we had it checked for my dad from the original surgery. The docs are glad it has already been done now that he has brain mets so they didn’t need to start digging for a sample. One fewer thing to mess with at this stage at least.Keeping fingers crossed all is clear on your scans.
Annie
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- July 21, 2016 at 6:25 pm
Have them test for BRAF status so you know. Hopefully it will never come to a point where that is necessary to know but we had it checked for my dad from the original surgery. The docs are glad it has already been done now that he has brain mets so they didn’t need to start digging for a sample. One fewer thing to mess with at this stage at least.Keeping fingers crossed all is clear on your scans.
Annie
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- July 22, 2016 at 5:54 am
While it's true genetic testing is not covered by most insurance, the B-RAF test is not a genetic test. The material to determine BRAF status was obtained from the lymph node and/or tumor material from the excised lesion. It appears to be standard procedure to check BRAF status, and is quite likely already known. But until your stage is finally determined it remains a moot point, only to become important later when considering treatment options.
Gary
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- July 22, 2016 at 5:54 am
While it's true genetic testing is not covered by most insurance, the B-RAF test is not a genetic test. The material to determine BRAF status was obtained from the lymph node and/or tumor material from the excised lesion. It appears to be standard procedure to check BRAF status, and is quite likely already known. But until your stage is finally determined it remains a moot point, only to become important later when considering treatment options.
Gary
-
- July 22, 2016 at 5:54 am
While it's true genetic testing is not covered by most insurance, the B-RAF test is not a genetic test. The material to determine BRAF status was obtained from the lymph node and/or tumor material from the excised lesion. It appears to be standard procedure to check BRAF status, and is quite likely already known. But until your stage is finally determined it remains a moot point, only to become important later when considering treatment options.
Gary
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- July 22, 2016 at 5:22 pm
So I sent an email to my surgeon yesterday about whether or not I will be tested for the BRAF mutation and his nurse replied for him and said I will be and they will try and use the sample from my lymph node. She said that the medical oncologist would probably recommend that anyway. I will discuss with Dr. Mammen on Thursday.
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- July 22, 2016 at 5:22 pm
So I sent an email to my surgeon yesterday about whether or not I will be tested for the BRAF mutation and his nurse replied for him and said I will be and they will try and use the sample from my lymph node. She said that the medical oncologist would probably recommend that anyway. I will discuss with Dr. Mammen on Thursday.
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- July 22, 2016 at 5:22 pm
So I sent an email to my surgeon yesterday about whether or not I will be tested for the BRAF mutation and his nurse replied for him and said I will be and they will try and use the sample from my lymph node. She said that the medical oncologist would probably recommend that anyway. I will discuss with Dr. Mammen on Thursday.
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- July 22, 2016 at 7:23 pm
Sounds right. They use the tissue from your previous surgery to find out. Like I said, hopefully you will never need to make use of that knowledge.Best wishes to you!
Annie
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- July 22, 2016 at 7:23 pm
Sounds right. They use the tissue from your previous surgery to find out. Like I said, hopefully you will never need to make use of that knowledge.Best wishes to you!
Annie
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- July 22, 2016 at 7:23 pm
Sounds right. They use the tissue from your previous surgery to find out. Like I said, hopefully you will never need to make use of that knowledge.Best wishes to you!
Annie
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- July 25, 2016 at 1:21 pm
Hi, im from the Omaha area. Diagnosed 3b in 2013. Every step you have wrote about are the exact steps to take. You will probably have a clnd of your groin. I did as well. It was a pretty tough surgery for me with a 5 day hospital stay. I also developed lymphadema. They say 50/50 for lymphadema but it was obvious to me that I had it. I went on to do the whole year and a half of ipi. I have not recurred so i feel it was all worth it and would do it again. Read up on this board for all the treatments they are using. Some of the drugs are working wonders on people. Dont give up hope!-
- July 25, 2016 at 6:10 pm
Hi momof4boys from Omaha….thank you for your message. I was told that if the pet scan and mri of my brain both come back negative for any other cancer spreading locations, then I would indeed have the clnd of my groin and be in the hospital for five days. I had my pet scan this morning but I don't know anything from it. I have my mri on Thursday morning and meet with my surgical oncologist Dr. Mammen on Thursday afternoon to go over these two test results before I know what my potential gameplan will be moving forward.
Just a quick question regarding your ipi treatment. You mentioned being on it for 18 months. Is there a reason why you stopped it? I haven't done much research on ipi so I was curious.
Anyway, thanks so much for your message and I hope that you continue to do better…..
Stacy
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- July 25, 2016 at 6:10 pm
Hi momof4boys from Omaha….thank you for your message. I was told that if the pet scan and mri of my brain both come back negative for any other cancer spreading locations, then I would indeed have the clnd of my groin and be in the hospital for five days. I had my pet scan this morning but I don't know anything from it. I have my mri on Thursday morning and meet with my surgical oncologist Dr. Mammen on Thursday afternoon to go over these two test results before I know what my potential gameplan will be moving forward.
Just a quick question regarding your ipi treatment. You mentioned being on it for 18 months. Is there a reason why you stopped it? I haven't done much research on ipi so I was curious.
Anyway, thanks so much for your message and I hope that you continue to do better…..
Stacy
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- July 25, 2016 at 6:10 pm
Hi momof4boys from Omaha….thank you for your message. I was told that if the pet scan and mri of my brain both come back negative for any other cancer spreading locations, then I would indeed have the clnd of my groin and be in the hospital for five days. I had my pet scan this morning but I don't know anything from it. I have my mri on Thursday morning and meet with my surgical oncologist Dr. Mammen on Thursday afternoon to go over these two test results before I know what my potential gameplan will be moving forward.
Just a quick question regarding your ipi treatment. You mentioned being on it for 18 months. Is there a reason why you stopped it? I haven't done much research on ipi so I was curious.
Anyway, thanks so much for your message and I hope that you continue to do better…..
Stacy
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- July 25, 2016 at 1:21 pm
Hi, im from the Omaha area. Diagnosed 3b in 2013. Every step you have wrote about are the exact steps to take. You will probably have a clnd of your groin. I did as well. It was a pretty tough surgery for me with a 5 day hospital stay. I also developed lymphadema. They say 50/50 for lymphadema but it was obvious to me that I had it. I went on to do the whole year and a half of ipi. I have not recurred so i feel it was all worth it and would do it again. Read up on this board for all the treatments they are using. Some of the drugs are working wonders on people. Dont give up hope! -
- July 25, 2016 at 1:21 pm
Hi, im from the Omaha area. Diagnosed 3b in 2013. Every step you have wrote about are the exact steps to take. You will probably have a clnd of your groin. I did as well. It was a pretty tough surgery for me with a 5 day hospital stay. I also developed lymphadema. They say 50/50 for lymphadema but it was obvious to me that I had it. I went on to do the whole year and a half of ipi. I have not recurred so i feel it was all worth it and would do it again. Read up on this board for all the treatments they are using. Some of the drugs are working wonders on people. Dont give up hope!
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