› Forums › General Melanoma Community › Newly diagnosed with anal melanoma
- This topic has 34 replies, 11 voices, and was last updated 6 years, 10 months ago by
Margaret3.
- Post
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- January 30, 2014 at 2:29 am
My world fell apart last week when I found out I have anal melanoma. My colorectal surgeon ordered a PET scan and a CT, both of which I've completed. We met last night with the multidisciplinary team at our local hospital's cancer center.
I am so fortunate to find out that it has not spread, and I need to have a wide local excision to get clean margins. I talked to my doctor today and she said she may possibly need to remove part of the sphincter muscle which would cause me to need a bag for the rest of my life. I really want a second opinion, but there's not alot of specialists in this type cancer. Surgery is scheduled for February 7.
Also, the PET scan showed a spot in the pelvic area that may or may not be the cancer in the lumph node, but the CT did not show it. They said that if it was definitely the cancer both tests would show it. It could just be a false positive. Could be just part of the bowel I will need to go back for another CT in 3 months to watch it.
Anyone know of any specialists on the east coast? I live in Delaware but will travel to where ever. Johns Hopkins can't see me until February 25. University of Pennsylvania's melanoma center referred me to a dermatologist. I've heard about the Dana Farber center in Boston, and I have no problem flying up there for a consult, but February 7 will be here soon. I don't want to put off surgery as I know that this type of cancer is very aggressive.
Anybody out there have any advice for me? I just want to scream because I am so afraid and confused. Thanks for your help!!
Cathy
- Replies
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- January 30, 2014 at 2:40 am
Hi Cathy,
Sorry to have to meet you on this board.
Have you tried calling Johns Hopkins and explained your situation to them to see if they can see you sooner?
There are two other melanoma clinics in Phillie that you can try calling:
Fox Chase Cancer Center
333 Cottman Avenue
Philadelphia,PA 19111
Phone: (888) – 369-2427Thomas Jefferson University
111 South 11th Street
Suite 4240
Philadelphia, PA 19107
Phone: (800) – 533-3669 -
- January 30, 2014 at 2:40 am
Hi Cathy,
Sorry to have to meet you on this board.
Have you tried calling Johns Hopkins and explained your situation to them to see if they can see you sooner?
There are two other melanoma clinics in Phillie that you can try calling:
Fox Chase Cancer Center
333 Cottman Avenue
Philadelphia,PA 19111
Phone: (888) – 369-2427Thomas Jefferson University
111 South 11th Street
Suite 4240
Philadelphia, PA 19107
Phone: (800) – 533-3669 -
- January 30, 2014 at 2:40 am
Hi Cathy,
Sorry to have to meet you on this board.
Have you tried calling Johns Hopkins and explained your situation to them to see if they can see you sooner?
There are two other melanoma clinics in Phillie that you can try calling:
Fox Chase Cancer Center
333 Cottman Avenue
Philadelphia,PA 19111
Phone: (888) – 369-2427Thomas Jefferson University
111 South 11th Street
Suite 4240
Philadelphia, PA 19107
Phone: (800) – 533-3669 -
- January 30, 2014 at 4:18 am
I hadd a long reply typed and it disappeared. DON'T give up. I was mis-diagnosed for 3 1/2 years on ten seperate GP visits before they got a new Docctor in that finally refered me to a general surgeon for my HEMMORHOID. May 2006 Diagnosis by PATHOLOGIST was malignant melanoma . Reached the Stage Iv before Feb 2007. Waws told to expect major breathing problemss within 30 days and to expect to not be her in 6 months Have not been NED (No Evidence of Disease – on scans) since then. Immediately went to IL-2, the only viable treatment in 2007 (and still a viable treatment) It held me stable for 20 monts (I was in the ~20% that responded at least partially to it. After 20 months the IL-2 stopped being effective and things went wild with new growth again. Before it stopped working ONE report had been written in a PEER Review Journal about one patient with C-kit mucosal melanoma and Gleevec. I have been essentially stable since March 2009 on this Off label, Targeted treatment utilization. (Slow remission) Did not have the sphinctor muscle removed and still have normal function back there.
You are welcome to read the Profile of my Journey under our profile section.
http://www.melanoma.org/community/profiles/jerryfromfauq
Be vigilant, not PARANOID.
Learn and survive. Now is the best tiime in history to be diagnosed with melanoma. Will be glad to chat in chat room, telephonically or on Facebook with you.
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- January 30, 2014 at 4:18 am
I hadd a long reply typed and it disappeared. DON'T give up. I was mis-diagnosed for 3 1/2 years on ten seperate GP visits before they got a new Docctor in that finally refered me to a general surgeon for my HEMMORHOID. May 2006 Diagnosis by PATHOLOGIST was malignant melanoma . Reached the Stage Iv before Feb 2007. Waws told to expect major breathing problemss within 30 days and to expect to not be her in 6 months Have not been NED (No Evidence of Disease – on scans) since then. Immediately went to IL-2, the only viable treatment in 2007 (and still a viable treatment) It held me stable for 20 monts (I was in the ~20% that responded at least partially to it. After 20 months the IL-2 stopped being effective and things went wild with new growth again. Before it stopped working ONE report had been written in a PEER Review Journal about one patient with C-kit mucosal melanoma and Gleevec. I have been essentially stable since March 2009 on this Off label, Targeted treatment utilization. (Slow remission) Did not have the sphinctor muscle removed and still have normal function back there.
You are welcome to read the Profile of my Journey under our profile section.
http://www.melanoma.org/community/profiles/jerryfromfauq
Be vigilant, not PARANOID.
Learn and survive. Now is the best tiime in history to be diagnosed with melanoma. Will be glad to chat in chat room, telephonically or on Facebook with you.
-
- January 30, 2014 at 4:18 am
I hadd a long reply typed and it disappeared. DON'T give up. I was mis-diagnosed for 3 1/2 years on ten seperate GP visits before they got a new Docctor in that finally refered me to a general surgeon for my HEMMORHOID. May 2006 Diagnosis by PATHOLOGIST was malignant melanoma . Reached the Stage Iv before Feb 2007. Waws told to expect major breathing problemss within 30 days and to expect to not be her in 6 months Have not been NED (No Evidence of Disease – on scans) since then. Immediately went to IL-2, the only viable treatment in 2007 (and still a viable treatment) It held me stable for 20 monts (I was in the ~20% that responded at least partially to it. After 20 months the IL-2 stopped being effective and things went wild with new growth again. Before it stopped working ONE report had been written in a PEER Review Journal about one patient with C-kit mucosal melanoma and Gleevec. I have been essentially stable since March 2009 on this Off label, Targeted treatment utilization. (Slow remission) Did not have the sphinctor muscle removed and still have normal function back there.
You are welcome to read the Profile of my Journey under our profile section.
http://www.melanoma.org/community/profiles/jerryfromfauq
Be vigilant, not PARANOID.
Learn and survive. Now is the best tiime in history to be diagnosed with melanoma. Will be glad to chat in chat room, telephonically or on Facebook with you.
-
- January 30, 2014 at 3:16 pm
http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Melanoma.aspx?phase=Before_Treatment
Phone numbers are on thiss page…….and online registration…..explain your urgency..
My thoughts are with you.
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- January 30, 2014 at 3:16 pm
http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Melanoma.aspx?phase=Before_Treatment
Phone numbers are on thiss page…….and online registration…..explain your urgency..
My thoughts are with you.
-
- January 30, 2014 at 3:16 pm
http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Melanoma.aspx?phase=Before_Treatment
Phone numbers are on thiss page…….and online registration…..explain your urgency..
My thoughts are with you.
-
- January 31, 2014 at 4:51 pm
Hi, Cathy – First, I am so sorry your going through all this. This site was my lifeline when I was first diagnosed in 2005. The people here were so well informed along with being very comforting & supportive.
As to your question, my doctor is Dr Anna Pavlick at the NYU Clinical Cancer Center. She was the only doctor who gave me hope and I strongly recommend her for all things melanoma. Many of her patients also post on this site.
She is the director of the NYU Cancer Institute Melanoma Research Program. Address: NYU Clinical Cancer Center, 9th Floor, 160 E 34th St, New York, NY 10016. Phone: 212-731-5431.
The care I received from Dr Pavlick and everyone at NYU was exceptional. Feel free to contact me directly if you would like more information about my experience.
Wishing you all the best and please keep us posted when you can.
Libby (stage IIIb, NED since 2006)
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- January 31, 2014 at 4:51 pm
Hi, Cathy – First, I am so sorry your going through all this. This site was my lifeline when I was first diagnosed in 2005. The people here were so well informed along with being very comforting & supportive.
As to your question, my doctor is Dr Anna Pavlick at the NYU Clinical Cancer Center. She was the only doctor who gave me hope and I strongly recommend her for all things melanoma. Many of her patients also post on this site.
She is the director of the NYU Cancer Institute Melanoma Research Program. Address: NYU Clinical Cancer Center, 9th Floor, 160 E 34th St, New York, NY 10016. Phone: 212-731-5431.
The care I received from Dr Pavlick and everyone at NYU was exceptional. Feel free to contact me directly if you would like more information about my experience.
Wishing you all the best and please keep us posted when you can.
Libby (stage IIIb, NED since 2006)
-
- January 31, 2014 at 4:51 pm
Hi, Cathy – First, I am so sorry your going through all this. This site was my lifeline when I was first diagnosed in 2005. The people here were so well informed along with being very comforting & supportive.
As to your question, my doctor is Dr Anna Pavlick at the NYU Clinical Cancer Center. She was the only doctor who gave me hope and I strongly recommend her for all things melanoma. Many of her patients also post on this site.
She is the director of the NYU Cancer Institute Melanoma Research Program. Address: NYU Clinical Cancer Center, 9th Floor, 160 E 34th St, New York, NY 10016. Phone: 212-731-5431.
The care I received from Dr Pavlick and everyone at NYU was exceptional. Feel free to contact me directly if you would like more information about my experience.
Wishing you all the best and please keep us posted when you can.
Libby (stage IIIb, NED since 2006)
-
- January 31, 2014 at 6:30 pm
Hi Cathy,
my Mom get the same diagnosis in October last year. The tumor was quite big (16 mm diameter). She had local excision before doctors actually knew it was melanoma. The surgeon operating Mom said it is easy to hurt sphincter and anyone can do that. He declared to do his best to save it and he succeded. So the question in your case is if it needs a talented surgeon to do it safely, or part of the muscle just has to be removed as melanoma has infiltrated it. Ask about radiotherapy. I read that in typical rectal cancer it is first done to save sphincter. One oncologist told me, that this type of melanoma is quite sensitive to radio.
We are now struggling with futher steps, as doctors we consult have different views. So far my Mom is NED, but they suspect meta to lymphatic nods, so she needs futher diagnosing.
Please let me know, how you are doing, and what doctors recommend apart from surgery.
Take care and don't give up!
Aleksandra
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- January 31, 2014 at 6:30 pm
Hi Cathy,
my Mom get the same diagnosis in October last year. The tumor was quite big (16 mm diameter). She had local excision before doctors actually knew it was melanoma. The surgeon operating Mom said it is easy to hurt sphincter and anyone can do that. He declared to do his best to save it and he succeded. So the question in your case is if it needs a talented surgeon to do it safely, or part of the muscle just has to be removed as melanoma has infiltrated it. Ask about radiotherapy. I read that in typical rectal cancer it is first done to save sphincter. One oncologist told me, that this type of melanoma is quite sensitive to radio.
We are now struggling with futher steps, as doctors we consult have different views. So far my Mom is NED, but they suspect meta to lymphatic nods, so she needs futher diagnosing.
Please let me know, how you are doing, and what doctors recommend apart from surgery.
Take care and don't give up!
Aleksandra
-
- January 31, 2014 at 6:30 pm
Hi Cathy,
my Mom get the same diagnosis in October last year. The tumor was quite big (16 mm diameter). She had local excision before doctors actually knew it was melanoma. The surgeon operating Mom said it is easy to hurt sphincter and anyone can do that. He declared to do his best to save it and he succeded. So the question in your case is if it needs a talented surgeon to do it safely, or part of the muscle just has to be removed as melanoma has infiltrated it. Ask about radiotherapy. I read that in typical rectal cancer it is first done to save sphincter. One oncologist told me, that this type of melanoma is quite sensitive to radio.
We are now struggling with futher steps, as doctors we consult have different views. So far my Mom is NED, but they suspect meta to lymphatic nods, so she needs futher diagnosing.
Please let me know, how you are doing, and what doctors recommend apart from surgery.
Take care and don't give up!
Aleksandra
-
- February 23, 2014 at 5:35 pm
Hi Cathy,
I am so sorry that you are dealing with this awful cancer and that unfortunately just saw your post. The best advice I ever got was to go for a second opinion from the hospital/Dr. that knows your cancer the best..
I went to Dana Farber for a second opinon a month after the surger to remove the rest of the lesion and the sentinal lymph nodes. I really attribute the fact that I have the right course of treatment to the skilled Doctors there. I see Dr. F. Stephen Hodi, oncologist, Dr. Sara Russell, Surgical Oncologist and Dr. Andrew Werchniak. They have been absolutely wonderful and I am totally confident that in my care.
Jerry has a wealth of information on the newest research. Please feel free to e-mail me if you would like to have more information. I was diagnosed after having my "50" colonoscopy three years ago and remain NED!
Please remember no doctor can tell you if you will live or die. That is between you and God.
God Bless,
Jeannine
-
- February 27, 2014 at 1:29 am
Thanks to all for your comments. Since my initial post, I decided that 2nd or 3rd opinions are necessary so I went to Fox Chase in Philadelphia, Sloan Kettering as well as Johns Hopkins. One of the good thing about living in Delaware…..we are able to get to all 3 major cities in a short time.
At Fox Chase I met with an oncologist who I really liked, and then a few days later met with a surgeon. A wide local excision and a sentinel lymph node bioposy were recommended.
The next day my husband and I had an appointment at Sloan Kettering. The doctor was nice, but he didn't want to give an opinion until he had my slides and met with the melanoma tumor board. A week after the appointment he called me and suggested that I do nothing at this point. He said that my original surgeon here in Delaware who did the initial surgery got a 1.5 mm margin and it was close 2 cm that I should just wait it out for 3 months with another CT at that time. He said to follow up with an oncologist at this time.
I met with a doctor at Johns Hopkins wouldn't give an opinion until she had my slides and then I had to start the process all over with them.
After long thoughts with my family, I followed my gut and heart and went with Fox Chase. I felt that waiting 3 months with an aggressive cancer was not an option for me. I had surgery on February 17, and Dr. Watson said he was able to get good margins and didn't have to disturb my sphincter muscle. They did the sentinel lymph node bioposy and did take a node out of my left groin. Pathology report takes I had hoped they wouldn't need to remove any nodes, and I can't help but think that it must be spreading or he wouldn't have removed it.
Thanks for listening to me! Makes me feel better!
Cathy
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- September 3, 2014 at 7:31 pm
Hi Cathy,
I just found this message string, somehow missed it when it was posted initially. How are you doing now? FYI I have a close friend who is being treated for anorectal mucosal at Dana Farber (surgery and now a clinical trial) – she was diagnosed not long before you so you guys are at similar points in the journey. Hope things are stable or stabiizing for you!
Frances
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- September 3, 2014 at 7:31 pm
Hi Cathy,
I just found this message string, somehow missed it when it was posted initially. How are you doing now? FYI I have a close friend who is being treated for anorectal mucosal at Dana Farber (surgery and now a clinical trial) – she was diagnosed not long before you so you guys are at similar points in the journey. Hope things are stable or stabiizing for you!
Frances
-
- September 3, 2014 at 7:31 pm
Hi Cathy,
I just found this message string, somehow missed it when it was posted initially. How are you doing now? FYI I have a close friend who is being treated for anorectal mucosal at Dana Farber (surgery and now a clinical trial) – she was diagnosed not long before you so you guys are at similar points in the journey. Hope things are stable or stabiizing for you!
Frances
-
- February 27, 2014 at 1:29 am
Thanks to all for your comments. Since my initial post, I decided that 2nd or 3rd opinions are necessary so I went to Fox Chase in Philadelphia, Sloan Kettering as well as Johns Hopkins. One of the good thing about living in Delaware…..we are able to get to all 3 major cities in a short time.
At Fox Chase I met with an oncologist who I really liked, and then a few days later met with a surgeon. A wide local excision and a sentinel lymph node bioposy were recommended.
The next day my husband and I had an appointment at Sloan Kettering. The doctor was nice, but he didn't want to give an opinion until he had my slides and met with the melanoma tumor board. A week after the appointment he called me and suggested that I do nothing at this point. He said that my original surgeon here in Delaware who did the initial surgery got a 1.5 mm margin and it was close 2 cm that I should just wait it out for 3 months with another CT at that time. He said to follow up with an oncologist at this time.
I met with a doctor at Johns Hopkins wouldn't give an opinion until she had my slides and then I had to start the process all over with them.
After long thoughts with my family, I followed my gut and heart and went with Fox Chase. I felt that waiting 3 months with an aggressive cancer was not an option for me. I had surgery on February 17, and Dr. Watson said he was able to get good margins and didn't have to disturb my sphincter muscle. They did the sentinel lymph node bioposy and did take a node out of my left groin. Pathology report takes I had hoped they wouldn't need to remove any nodes, and I can't help but think that it must be spreading or he wouldn't have removed it.
Thanks for listening to me! Makes me feel better!
Cathy
-
- February 27, 2014 at 1:29 am
Thanks to all for your comments. Since my initial post, I decided that 2nd or 3rd opinions are necessary so I went to Fox Chase in Philadelphia, Sloan Kettering as well as Johns Hopkins. One of the good thing about living in Delaware…..we are able to get to all 3 major cities in a short time.
At Fox Chase I met with an oncologist who I really liked, and then a few days later met with a surgeon. A wide local excision and a sentinel lymph node bioposy were recommended.
The next day my husband and I had an appointment at Sloan Kettering. The doctor was nice, but he didn't want to give an opinion until he had my slides and met with the melanoma tumor board. A week after the appointment he called me and suggested that I do nothing at this point. He said that my original surgeon here in Delaware who did the initial surgery got a 1.5 mm margin and it was close 2 cm that I should just wait it out for 3 months with another CT at that time. He said to follow up with an oncologist at this time.
I met with a doctor at Johns Hopkins wouldn't give an opinion until she had my slides and then I had to start the process all over with them.
After long thoughts with my family, I followed my gut and heart and went with Fox Chase. I felt that waiting 3 months with an aggressive cancer was not an option for me. I had surgery on February 17, and Dr. Watson said he was able to get good margins and didn't have to disturb my sphincter muscle. They did the sentinel lymph node bioposy and did take a node out of my left groin. Pathology report takes I had hoped they wouldn't need to remove any nodes, and I can't help but think that it must be spreading or he wouldn't have removed it.
Thanks for listening to me! Makes me feel better!
Cathy
-
- February 23, 2014 at 5:35 pm
Hi Cathy,
I am so sorry that you are dealing with this awful cancer and that unfortunately just saw your post. The best advice I ever got was to go for a second opinion from the hospital/Dr. that knows your cancer the best..
I went to Dana Farber for a second opinon a month after the surger to remove the rest of the lesion and the sentinal lymph nodes. I really attribute the fact that I have the right course of treatment to the skilled Doctors there. I see Dr. F. Stephen Hodi, oncologist, Dr. Sara Russell, Surgical Oncologist and Dr. Andrew Werchniak. They have been absolutely wonderful and I am totally confident that in my care.
Jerry has a wealth of information on the newest research. Please feel free to e-mail me if you would like to have more information. I was diagnosed after having my "50" colonoscopy three years ago and remain NED!
Please remember no doctor can tell you if you will live or die. That is between you and God.
God Bless,
Jeannine
-
- February 23, 2014 at 5:35 pm
Hi Cathy,
I am so sorry that you are dealing with this awful cancer and that unfortunately just saw your post. The best advice I ever got was to go for a second opinion from the hospital/Dr. that knows your cancer the best..
I went to Dana Farber for a second opinon a month after the surger to remove the rest of the lesion and the sentinal lymph nodes. I really attribute the fact that I have the right course of treatment to the skilled Doctors there. I see Dr. F. Stephen Hodi, oncologist, Dr. Sara Russell, Surgical Oncologist and Dr. Andrew Werchniak. They have been absolutely wonderful and I am totally confident that in my care.
Jerry has a wealth of information on the newest research. Please feel free to e-mail me if you would like to have more information. I was diagnosed after having my "50" colonoscopy three years ago and remain NED!
Please remember no doctor can tell you if you will live or die. That is between you and God.
God Bless,
Jeannine
-
- March 13, 2014 at 12:36 pm
Hi,
My name is Maria, and I was diagnosed in November with Rectal Melanoma (Mucosal). My first Surgeon wanted to remove the rectum, and perform a colostomy. I was so upset, and frightened. My friend and I researched and found Dr Bamboat at Hackensack University Medical Center. He was able to save the rectum and get good margins. During a recent pevic MRI, a new growth has been detected, and I am scheduled for a biopsy. I don't know what that will bring. At least they may start tretment, now. I have had so many problems with my Insurance company, due to it being an EPO, they will not allow out of state coverage. It took them 51 days to decline allowing me to go to MSKCC, in NYC for a second opinion. They are treating this as Cutaneous, even though we keep telling them its Mucosal. Anybody else encountering these issues?
Thanks
Maria D
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- March 13, 2014 at 12:36 pm
Hi,
My name is Maria, and I was diagnosed in November with Rectal Melanoma (Mucosal). My first Surgeon wanted to remove the rectum, and perform a colostomy. I was so upset, and frightened. My friend and I researched and found Dr Bamboat at Hackensack University Medical Center. He was able to save the rectum and get good margins. During a recent pevic MRI, a new growth has been detected, and I am scheduled for a biopsy. I don't know what that will bring. At least they may start tretment, now. I have had so many problems with my Insurance company, due to it being an EPO, they will not allow out of state coverage. It took them 51 days to decline allowing me to go to MSKCC, in NYC for a second opinion. They are treating this as Cutaneous, even though we keep telling them its Mucosal. Anybody else encountering these issues?
Thanks
Maria D
-
- March 13, 2014 at 12:36 pm
Hi,
My name is Maria, and I was diagnosed in November with Rectal Melanoma (Mucosal). My first Surgeon wanted to remove the rectum, and perform a colostomy. I was so upset, and frightened. My friend and I researched and found Dr Bamboat at Hackensack University Medical Center. He was able to save the rectum and get good margins. During a recent pevic MRI, a new growth has been detected, and I am scheduled for a biopsy. I don't know what that will bring. At least they may start tretment, now. I have had so many problems with my Insurance company, due to it being an EPO, they will not allow out of state coverage. It took them 51 days to decline allowing me to go to MSKCC, in NYC for a second opinion. They are treating this as Cutaneous, even though we keep telling them its Mucosal. Anybody else encountering these issues?
Thanks
Maria D
-
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