› Forums › General Melanoma Community › Possible Recurrence and how to proceed
- This topic has 18 replies, 4 voices, and was last updated 8 years, 2 months ago by
_Paul_.
- Post
-
- January 15, 2016 at 5:26 pm
Hello
I was on this board almost two years ago and it was very helpful. Thank you so much for that!! Was looking for Melaoma Specialist in SF Bay Area for my mom.
Mom went to Stanford and had a WLE on her right leg almost two years ago (where melanoma mole was) and SNB. The SNB came up negative. The past month she has had swelling in right leg (swelling has since gone down with more exercise and water). HAs had slight swelling ever since SNB so was not to concerned but it did get quite bad and her primary care DR sent her in for sonogram to rule out DVT and do a more focued one on lymph. What has come back is that one inguinal lymph glad is enlarged with blood supply and highly suspicious for mailiganancy. The Melaoma Dr was suprised and said it would be very rare based on her original melanoma. From what I have read on the board and overall it can happen. My mom is upset and concerned about her care at Stanford.. who she should be talking to and what next process is.. As of this point trying to get ultrasound guided biopsy, but also considering second opinion with UCSF. Though not sure would see her till recuurecence confirmed? My other Question include -At this point should primary dr be guiding care.. she has talked with Melanoma Dr? -Is single Biopsy the way to go or should a PET scan be done first?
Any input appreciated!!!!!
Thanks!!
- Replies
-
-
- January 15, 2016 at 6:58 pm
Hi there,
I also live in the Bay Area and was diagnosed with stage 3 in Novemeber. I had Kaiser but quickly realized I needed to see a Melanoma specialist and after talking with other people in the area who have gone through the same thing, UCSF was the highest recommendation. So, I switched insurance and I now go to the Melanoma Center at UCSF. They are incredibly knowledgeable and I would highly recommend them if you feel that your mom should get a second opinion.
The Melanoma Center phone number is 415-353-9900
Dr. Susana Ortiz is co-director of the Melanoma Center and she was the first doctor I saw there. She is so incredibly thorough and full of knowledge, she instantly put me at ease. She referred me to Dr. Katy Tsai who is on the same floor and is the Melanoma oncologist. She is now my oncologist, and again, I can't say enough good things about my experience there. You can definitely call that number and make an appointment with Dr. Ortiz, explain your mom's history and say you want a second opinion, they will definitely get you an appointment.
All the best,
Jenn
-
- January 15, 2016 at 6:58 pm
Hi there,
I also live in the Bay Area and was diagnosed with stage 3 in Novemeber. I had Kaiser but quickly realized I needed to see a Melanoma specialist and after talking with other people in the area who have gone through the same thing, UCSF was the highest recommendation. So, I switched insurance and I now go to the Melanoma Center at UCSF. They are incredibly knowledgeable and I would highly recommend them if you feel that your mom should get a second opinion.
The Melanoma Center phone number is 415-353-9900
Dr. Susana Ortiz is co-director of the Melanoma Center and she was the first doctor I saw there. She is so incredibly thorough and full of knowledge, she instantly put me at ease. She referred me to Dr. Katy Tsai who is on the same floor and is the Melanoma oncologist. She is now my oncologist, and again, I can't say enough good things about my experience there. You can definitely call that number and make an appointment with Dr. Ortiz, explain your mom's history and say you want a second opinion, they will definitely get you an appointment.
All the best,
Jenn
-
- January 15, 2016 at 7:45 pm
Hi there,
Im sorry to hear that your mother is going through this. Ultrasound is pretty reliable when it comes to lymph node characteristics w.r.t. malignancy, however, a fine needle biopsy is needed for confirmation of whether the lymph node is malignant or benign.
I myself had a recurrent in my regional lymph nodes 12 years after WLE of my primary mole so recurrence at any time is unfortunately possible.
With my recurrence my family doctor ordered the fine need biopsy and following that I referred to a melanoma specialist and surgeon. The important thing at this point is to get the biopsy scheduled and completed as soon as possible.
Good luck,
Nancy
-
- January 15, 2016 at 9:10 pm
Nancy..Thanks so much for sharing that information. Would you mind if I asked how they proceeded with care once reoccurence was confirmed? Hopefully we get the appointment soon for biopsy. We have been trying all week with stanford but radiology is not calling the dr or ourselves back.
Wisshing you all the best Nancy!!
-
- January 19, 2016 at 8:04 pm
Hi there,
Once it was confirmed I was schedule for surgery to remove all groin lymph nodes. Only one was positive so the radiation oncologist stated that radiation was not suggested at that time. Following surgery I had the choice of trial, interferon or observation. I participated in the ipi trial and unfortunately progressed again locally. I have since had further surgery to remove the cancerous nodes and now am going to complete a course of interferon and radiation. Hope that helps!
I am sorry for the delay in responding and I hope that by now you have received an appointment. The waiting is the worst part.
Nancy
-
- January 19, 2016 at 8:04 pm
Hi there,
Once it was confirmed I was schedule for surgery to remove all groin lymph nodes. Only one was positive so the radiation oncologist stated that radiation was not suggested at that time. Following surgery I had the choice of trial, interferon or observation. I participated in the ipi trial and unfortunately progressed again locally. I have since had further surgery to remove the cancerous nodes and now am going to complete a course of interferon and radiation. Hope that helps!
I am sorry for the delay in responding and I hope that by now you have received an appointment. The waiting is the worst part.
Nancy
-
- January 19, 2016 at 8:04 pm
Hi there,
Once it was confirmed I was schedule for surgery to remove all groin lymph nodes. Only one was positive so the radiation oncologist stated that radiation was not suggested at that time. Following surgery I had the choice of trial, interferon or observation. I participated in the ipi trial and unfortunately progressed again locally. I have since had further surgery to remove the cancerous nodes and now am going to complete a course of interferon and radiation. Hope that helps!
I am sorry for the delay in responding and I hope that by now you have received an appointment. The waiting is the worst part.
Nancy
-
- January 15, 2016 at 9:10 pm
Nancy..Thanks so much for sharing that information. Would you mind if I asked how they proceeded with care once reoccurence was confirmed? Hopefully we get the appointment soon for biopsy. We have been trying all week with stanford but radiology is not calling the dr or ourselves back.
Wisshing you all the best Nancy!!
-
- January 15, 2016 at 9:10 pm
Nancy..Thanks so much for sharing that information. Would you mind if I asked how they proceeded with care once reoccurence was confirmed? Hopefully we get the appointment soon for biopsy. We have been trying all week with stanford but radiology is not calling the dr or ourselves back.
Wisshing you all the best Nancy!!
-
- January 15, 2016 at 7:45 pm
Hi there,
Im sorry to hear that your mother is going through this. Ultrasound is pretty reliable when it comes to lymph node characteristics w.r.t. malignancy, however, a fine needle biopsy is needed for confirmation of whether the lymph node is malignant or benign.
I myself had a recurrent in my regional lymph nodes 12 years after WLE of my primary mole so recurrence at any time is unfortunately possible.
With my recurrence my family doctor ordered the fine need biopsy and following that I referred to a melanoma specialist and surgeon. The important thing at this point is to get the biopsy scheduled and completed as soon as possible.
Good luck,
Nancy
-
- January 15, 2016 at 7:45 pm
Hi there,
Im sorry to hear that your mother is going through this. Ultrasound is pretty reliable when it comes to lymph node characteristics w.r.t. malignancy, however, a fine needle biopsy is needed for confirmation of whether the lymph node is malignant or benign.
I myself had a recurrent in my regional lymph nodes 12 years after WLE of my primary mole so recurrence at any time is unfortunately possible.
With my recurrence my family doctor ordered the fine need biopsy and following that I referred to a melanoma specialist and surgeon. The important thing at this point is to get the biopsy scheduled and completed as soon as possible.
Good luck,
Nancy
-
- January 15, 2016 at 9:07 pm
Thanks So much Jenn. I have heard very good things about UCSF. Should biopsy be positive we will for sure go see someone there for secind opinion. Stanford is more convenient but care is important. Wishing you all the best on your healing journey there! Thanks for sharing!
-
- January 15, 2016 at 9:07 pm
Thanks So much Jenn. I have heard very good things about UCSF. Should biopsy be positive we will for sure go see someone there for secind opinion. Stanford is more convenient but care is important. Wishing you all the best on your healing journey there! Thanks for sharing!
-
- January 15, 2016 at 9:07 pm
Thanks So much Jenn. I have heard very good things about UCSF. Should biopsy be positive we will for sure go see someone there for secind opinion. Stanford is more convenient but care is important. Wishing you all the best on your healing journey there! Thanks for sharing!
-
- January 15, 2016 at 6:58 pm
Hi there,
I also live in the Bay Area and was diagnosed with stage 3 in Novemeber. I had Kaiser but quickly realized I needed to see a Melanoma specialist and after talking with other people in the area who have gone through the same thing, UCSF was the highest recommendation. So, I switched insurance and I now go to the Melanoma Center at UCSF. They are incredibly knowledgeable and I would highly recommend them if you feel that your mom should get a second opinion.
The Melanoma Center phone number is 415-353-9900
Dr. Susana Ortiz is co-director of the Melanoma Center and she was the first doctor I saw there. She is so incredibly thorough and full of knowledge, she instantly put me at ease. She referred me to Dr. Katy Tsai who is on the same floor and is the Melanoma oncologist. She is now my oncologist, and again, I can't say enough good things about my experience there. You can definitely call that number and make an appointment with Dr. Ortiz, explain your mom's history and say you want a second opinion, they will definitely get you an appointment.
All the best,
Jenn
-
- January 26, 2016 at 5:35 pm
Who is your mom seeing at Stanford? My previous melanoma oncologist moved a couple of years ago but I am not sure if she is just doing research or continues to see patients. Her name is Dr. Kim Margolin and I found her to be a very good doctor. Very much current with the fast paced world of melanoma research.
– Paul
-
- January 26, 2016 at 5:35 pm
Who is your mom seeing at Stanford? My previous melanoma oncologist moved a couple of years ago but I am not sure if she is just doing research or continues to see patients. Her name is Dr. Kim Margolin and I found her to be a very good doctor. Very much current with the fast paced world of melanoma research.
– Paul
-
- January 26, 2016 at 5:35 pm
Who is your mom seeing at Stanford? My previous melanoma oncologist moved a couple of years ago but I am not sure if she is just doing research or continues to see patients. Her name is Dr. Kim Margolin and I found her to be a very good doctor. Very much current with the fast paced world of melanoma research.
– Paul
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.