› Forums › General Melanoma Community › Help Please, Wife Newly Diagnosed
- This topic has 42 replies, 5 voices, and was last updated 9 years, 1 month ago by
jaco.
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- March 23, 2016 at 11:21 pm
Hi, my wife was diagnosed last week with stage 3 in her right groin lymph node. She can feel it, which is why she went to the doctor to get it checked out. I believe it was 7 cm. Is that big? Woudl this be 3c? They are going to remove the lymph node and everything surrounding it. Is this correct and what do they usually do following the lymph node removal? Any suggestions? She is 36. The PET scan showed it was contained so far to that one area of her body. Thank you in advance. Doug
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- March 23, 2016 at 11:59 pm
Doug,
So sorry your family is having to deal with this.
I'm going to oversimplify this for now so it's not too overwhelming (and I may still make it overwhelming but I'll try not to).
Your wife is having the tumor removed. The option also is to have a CLND (complete lymph node disection) where they remove most if not all of the lymph nodes in that groin area. You mention they are taking "everything surrounding it" so they may be planning that procedure. That is still the recommended procedure in the US but there recently has been some second guessing as to whether that is the right move. If you have any doubt don't rush into the procedure. Get a second or third opinion and then whatever you decide do it confidently.
With or without the CLND the options will be to do interferon (not recommended at many of the leading melanoma centers anymore). Do nothing but maintain a careful watch with regular scans (many go this route). You can now get Yervoy in the adjuvant setting (a few on this board are doing that now). You could enroll in an adjuvant clinical trial.
Here are two videos. One briefly touches on the topic of CLND and the other one is options for stage III. It's a little complicated but it will start to make sense as you get more and more familiar with the information.
Lastly I will highly recommend you seek out a melanoma expert at a highly regarded cancer center. Even if you continue to have your treatment locally it is invaluable to be tied in to a place that has the latest on melanoma treatments.
https://www.z2systems.com/np/clients/mif/survey.jsp?surveyId=35&
Best of luck Doug
Brian
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- March 23, 2016 at 11:59 pm
Doug,
So sorry your family is having to deal with this.
I'm going to oversimplify this for now so it's not too overwhelming (and I may still make it overwhelming but I'll try not to).
Your wife is having the tumor removed. The option also is to have a CLND (complete lymph node disection) where they remove most if not all of the lymph nodes in that groin area. You mention they are taking "everything surrounding it" so they may be planning that procedure. That is still the recommended procedure in the US but there recently has been some second guessing as to whether that is the right move. If you have any doubt don't rush into the procedure. Get a second or third opinion and then whatever you decide do it confidently.
With or without the CLND the options will be to do interferon (not recommended at many of the leading melanoma centers anymore). Do nothing but maintain a careful watch with regular scans (many go this route). You can now get Yervoy in the adjuvant setting (a few on this board are doing that now). You could enroll in an adjuvant clinical trial.
Here are two videos. One briefly touches on the topic of CLND and the other one is options for stage III. It's a little complicated but it will start to make sense as you get more and more familiar with the information.
Lastly I will highly recommend you seek out a melanoma expert at a highly regarded cancer center. Even if you continue to have your treatment locally it is invaluable to be tied in to a place that has the latest on melanoma treatments.
https://www.z2systems.com/np/clients/mif/survey.jsp?surveyId=35&
Best of luck Doug
Brian
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- March 23, 2016 at 11:59 pm
Doug,
So sorry your family is having to deal with this.
I'm going to oversimplify this for now so it's not too overwhelming (and I may still make it overwhelming but I'll try not to).
Your wife is having the tumor removed. The option also is to have a CLND (complete lymph node disection) where they remove most if not all of the lymph nodes in that groin area. You mention they are taking "everything surrounding it" so they may be planning that procedure. That is still the recommended procedure in the US but there recently has been some second guessing as to whether that is the right move. If you have any doubt don't rush into the procedure. Get a second or third opinion and then whatever you decide do it confidently.
With or without the CLND the options will be to do interferon (not recommended at many of the leading melanoma centers anymore). Do nothing but maintain a careful watch with regular scans (many go this route). You can now get Yervoy in the adjuvant setting (a few on this board are doing that now). You could enroll in an adjuvant clinical trial.
Here are two videos. One briefly touches on the topic of CLND and the other one is options for stage III. It's a little complicated but it will start to make sense as you get more and more familiar with the information.
Lastly I will highly recommend you seek out a melanoma expert at a highly regarded cancer center. Even if you continue to have your treatment locally it is invaluable to be tied in to a place that has the latest on melanoma treatments.
https://www.z2systems.com/np/clients/mif/survey.jsp?surveyId=35&
Best of luck Doug
Brian
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- March 24, 2016 at 1:26 am
Brian, thank you so much for your reply. I really appreciate it. We are currently making plans for a quick 2nd and 3rd opinion right now. If her tumor is big though wouldn't surgery basicalku have to happen? Thanks
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- March 24, 2016 at 1:26 am
Brian, thank you so much for your reply. I really appreciate it. We are currently making plans for a quick 2nd and 3rd opinion right now. If her tumor is big though wouldn't surgery basicalku have to happen? Thanks
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- March 24, 2016 at 1:26 am
Brian, thank you so much for your reply. I really appreciate it. We are currently making plans for a quick 2nd and 3rd opinion right now. If her tumor is big though wouldn't surgery basicalku have to happen? Thanks
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- March 24, 2016 at 7:52 am
There is a difference between removing the tumour and removing the tumour plus every lymph node in the vicinity. Removing all the lymph nodes is to catch and remove melanoma cells on the move. However it will obviously affect the lymph drainage from that part of her body. Also, very recently, some doctors have questioned whether taking away lymph nodes affects the body's ability to response to the new immuotherapy treatments.
It can be very hard to think when the news has been shocking and you are scared. However, it is really important to make sure you know exactly what each treatment involves and the consequences, both positive and negative.
I originally saw a surgeon rather than melanoma specialist. He was probably a great surgeoon but his attitude was 'this is the standard treatment'. He did not cope well with questions and when I said I wasn't going to agree to a second surgery he immediately classed me a 'difficult, middled-aged woman'.
The contrast when I began seeing my melanoma specialist was amazing. She tried to answer all my questions or admitted there were not answers to be had. She shared research papers with me (long ago, I was a research scientist). She explained what treatments were available and which were not. I, with my husband, made the decisions.
Like Ipi (Yervoy), which is the immunotherapy treatment I had. I knew the relatively low response rate. I knew that some people had permanent side effects. I have ended up with a pituitary gland that does not, and will never, work. I am absolutely fine with that because when I made the decision to go down the Ipi route, I was fully informed.
Wishing you all the best for your decision-making journey.
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- March 24, 2016 at 7:52 am
There is a difference between removing the tumour and removing the tumour plus every lymph node in the vicinity. Removing all the lymph nodes is to catch and remove melanoma cells on the move. However it will obviously affect the lymph drainage from that part of her body. Also, very recently, some doctors have questioned whether taking away lymph nodes affects the body's ability to response to the new immuotherapy treatments.
It can be very hard to think when the news has been shocking and you are scared. However, it is really important to make sure you know exactly what each treatment involves and the consequences, both positive and negative.
I originally saw a surgeon rather than melanoma specialist. He was probably a great surgeoon but his attitude was 'this is the standard treatment'. He did not cope well with questions and when I said I wasn't going to agree to a second surgery he immediately classed me a 'difficult, middled-aged woman'.
The contrast when I began seeing my melanoma specialist was amazing. She tried to answer all my questions or admitted there were not answers to be had. She shared research papers with me (long ago, I was a research scientist). She explained what treatments were available and which were not. I, with my husband, made the decisions.
Like Ipi (Yervoy), which is the immunotherapy treatment I had. I knew the relatively low response rate. I knew that some people had permanent side effects. I have ended up with a pituitary gland that does not, and will never, work. I am absolutely fine with that because when I made the decision to go down the Ipi route, I was fully informed.
Wishing you all the best for your decision-making journey.
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- March 24, 2016 at 7:52 am
There is a difference between removing the tumour and removing the tumour plus every lymph node in the vicinity. Removing all the lymph nodes is to catch and remove melanoma cells on the move. However it will obviously affect the lymph drainage from that part of her body. Also, very recently, some doctors have questioned whether taking away lymph nodes affects the body's ability to response to the new immuotherapy treatments.
It can be very hard to think when the news has been shocking and you are scared. However, it is really important to make sure you know exactly what each treatment involves and the consequences, both positive and negative.
I originally saw a surgeon rather than melanoma specialist. He was probably a great surgeoon but his attitude was 'this is the standard treatment'. He did not cope well with questions and when I said I wasn't going to agree to a second surgery he immediately classed me a 'difficult, middled-aged woman'.
The contrast when I began seeing my melanoma specialist was amazing. She tried to answer all my questions or admitted there were not answers to be had. She shared research papers with me (long ago, I was a research scientist). She explained what treatments were available and which were not. I, with my husband, made the decisions.
Like Ipi (Yervoy), which is the immunotherapy treatment I had. I knew the relatively low response rate. I knew that some people had permanent side effects. I have ended up with a pituitary gland that does not, and will never, work. I am absolutely fine with that because when I made the decision to go down the Ipi route, I was fully informed.
Wishing you all the best for your decision-making journey.
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- March 24, 2016 at 12:39 pm
Doug,
I'd think surgery to remove that 7 cm tumor absolutely has to be done. As far as removing the rest of the lymph nodes I'm not sure what I would do in your shoes. I guess I would ask questions and do a little reading to make sure that's the right move for you all. I like Moira"s reply.
Where are you all located? Almost always there is another member here who can give you a melanoma specialest recommendation for your area.
Brian
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- March 24, 2016 at 1:04 pm
Thank you for your answer. That's what i thought but good to have verification.
We are in Columbia MO, Missouri Cancer Center has been great here but thought we might get a second opinon at possibly Siteman in St Louis. We are seeing someone that specializes in melanoma here but thought a 2nd opinion would be good.
We got diagnosed last Wednesday and already have the surgery scheduled to remove next Friday. Praying this surgeon knows what they are doing, they seem too. Thanks for your replies. Doug
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- March 26, 2016 at 11:41 pm
that would be great! Thank you!
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- March 26, 2016 at 11:41 pm
that would be great! Thank you!
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- March 26, 2016 at 11:41 pm
that would be great! Thank you!
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- March 24, 2016 at 1:04 pm
Thank you for your answer. That's what i thought but good to have verification.
We are in Columbia MO, Missouri Cancer Center has been great here but thought we might get a second opinon at possibly Siteman in St Louis. We are seeing someone that specializes in melanoma here but thought a 2nd opinion would be good.
We got diagnosed last Wednesday and already have the surgery scheduled to remove next Friday. Praying this surgeon knows what they are doing, they seem too. Thanks for your replies. Doug
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- March 24, 2016 at 1:04 pm
Thank you for your answer. That's what i thought but good to have verification.
We are in Columbia MO, Missouri Cancer Center has been great here but thought we might get a second opinon at possibly Siteman in St Louis. We are seeing someone that specializes in melanoma here but thought a 2nd opinion would be good.
We got diagnosed last Wednesday and already have the surgery scheduled to remove next Friday. Praying this surgeon knows what they are doing, they seem too. Thanks for your replies. Doug
-
- March 24, 2016 at 12:39 pm
Doug,
I'd think surgery to remove that 7 cm tumor absolutely has to be done. As far as removing the rest of the lymph nodes I'm not sure what I would do in your shoes. I guess I would ask questions and do a little reading to make sure that's the right move for you all. I like Moira"s reply.
Where are you all located? Almost always there is another member here who can give you a melanoma specialest recommendation for your area.
Brian
-
- March 24, 2016 at 12:39 pm
Doug,
I'd think surgery to remove that 7 cm tumor absolutely has to be done. As far as removing the rest of the lymph nodes I'm not sure what I would do in your shoes. I guess I would ask questions and do a little reading to make sure that's the right move for you all. I like Moira"s reply.
Where are you all located? Almost always there is another member here who can give you a melanoma specialest recommendation for your area.
Brian
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- March 25, 2016 at 12:43 am
Hi Doug, I'm sorry you two are dealing with this right now.
Was your wife's melanoma found in the lymph node only, or did she have a mole? If it was found only in the lymph node and nowhere else then she has a melanoma with an unknown primary. If that's her diagnosis, then complete lymph node removal is what's done. This is because the path the melanoma took to get to her lymph node is not known. That's how it was explained to me when I asked my oncologist why I wasn't offered a sentinel lymph node biopsy.
If this is the case for your wife, please let me know. I have some links I can share with you.
It's too early to tell what part of Stage III she is. You won't know for certain until after the surgery when the pathology has been completed. Unfortunately, you still have some waiting ahead of you.
My badass node was 6cm. According to my oncologist, he'd seen bigger. So something that's 6-7cm is not shocking for someone experienced in treating melanoma.
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- March 25, 2016 at 12:43 am
Hi Doug, I'm sorry you two are dealing with this right now.
Was your wife's melanoma found in the lymph node only, or did she have a mole? If it was found only in the lymph node and nowhere else then she has a melanoma with an unknown primary. If that's her diagnosis, then complete lymph node removal is what's done. This is because the path the melanoma took to get to her lymph node is not known. That's how it was explained to me when I asked my oncologist why I wasn't offered a sentinel lymph node biopsy.
If this is the case for your wife, please let me know. I have some links I can share with you.
It's too early to tell what part of Stage III she is. You won't know for certain until after the surgery when the pathology has been completed. Unfortunately, you still have some waiting ahead of you.
My badass node was 6cm. According to my oncologist, he'd seen bigger. So something that's 6-7cm is not shocking for someone experienced in treating melanoma.
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- March 25, 2016 at 3:05 am
Yes, She has an unknown primary. I would love to see the links. Thank you! Doug
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- March 25, 2016 at 3:05 am
Yes, She has an unknown primary. I would love to see the links. Thank you! Doug
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- March 25, 2016 at 3:05 am
Yes, She has an unknown primary. I would love to see the links. Thank you! Doug
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- March 25, 2016 at 5:51 pm
Hi Doug, you are such a good advocate for your wife. I know she must be a basket case at the moment. I know I was.
Here's the scoop on unknown primaries:
1. A lot of studies suggest that those with unknown primaries do better than those who had moles. The theory is that there originally was a melanoma mole somewhere in the vicinity of the affected lymph node basin. The body's immune system recognized and fought it off. Though the mole went away, a few cells escaped to a lymph node that then began to attack the melanoma there, hence the swelling. Now, the positive thing about this is that the immune system has recognized the invader and is fighting it!!
2. Your wife has probably been checked from stem to stern to see where there may be a mole. Doctors will pay close attention to the skin in the area near her right groin to look out for any trouble.
3. She may be told to have skin checks twice a year.
4. Some other studies suggest that those with unknown primaries fare the same or worse as those with known primaries. If a doctor focuses on that alone and ignores the other studies, you need to find a different doctor because he or she is not up to date on the goings on in the melanoma world. One question to ask any melanoma clinic is how many unknown primaries do they see in their practice.
5. It's VERY important to begin looking for a physical therapist who specializes in a condition called lymphedema. Your wife will be at risk for this after her groin lymph nodes are removed. What can happen is that since there are no more lymph nodes in her groin through which fluid can drain from her right leg, she will be prone to swelling in that extremity. A physical therapist knowledgable in this condition can educate her on what to look out for and what precautions she will need to take to prevent cuts and infection in that leg. If you folks like to travel to places by plane, it's imperative she get measured for a compression garment. Changes in air pressure can aggravate swelling. The therapist will fill her in on that. There is no rush at the moment to get her to PT, she will need to heal from her surgery first. Lymphedema is a manageable condition. Not everyone gets it but those with nodes removed from the groin are more prone to getting it than those with nodes removed from the arm pit.
Here is a link to a study on unknown primaries:
http://jco.ascopubs.org/content/26/4/535.long
General information on lymphedema:
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- March 25, 2016 at 5:51 pm
Hi Doug, you are such a good advocate for your wife. I know she must be a basket case at the moment. I know I was.
Here's the scoop on unknown primaries:
1. A lot of studies suggest that those with unknown primaries do better than those who had moles. The theory is that there originally was a melanoma mole somewhere in the vicinity of the affected lymph node basin. The body's immune system recognized and fought it off. Though the mole went away, a few cells escaped to a lymph node that then began to attack the melanoma there, hence the swelling. Now, the positive thing about this is that the immune system has recognized the invader and is fighting it!!
2. Your wife has probably been checked from stem to stern to see where there may be a mole. Doctors will pay close attention to the skin in the area near her right groin to look out for any trouble.
3. She may be told to have skin checks twice a year.
4. Some other studies suggest that those with unknown primaries fare the same or worse as those with known primaries. If a doctor focuses on that alone and ignores the other studies, you need to find a different doctor because he or she is not up to date on the goings on in the melanoma world. One question to ask any melanoma clinic is how many unknown primaries do they see in their practice.
5. It's VERY important to begin looking for a physical therapist who specializes in a condition called lymphedema. Your wife will be at risk for this after her groin lymph nodes are removed. What can happen is that since there are no more lymph nodes in her groin through which fluid can drain from her right leg, she will be prone to swelling in that extremity. A physical therapist knowledgable in this condition can educate her on what to look out for and what precautions she will need to take to prevent cuts and infection in that leg. If you folks like to travel to places by plane, it's imperative she get measured for a compression garment. Changes in air pressure can aggravate swelling. The therapist will fill her in on that. There is no rush at the moment to get her to PT, she will need to heal from her surgery first. Lymphedema is a manageable condition. Not everyone gets it but those with nodes removed from the groin are more prone to getting it than those with nodes removed from the arm pit.
Here is a link to a study on unknown primaries:
http://jco.ascopubs.org/content/26/4/535.long
General information on lymphedema:
-
- March 25, 2016 at 5:51 pm
Hi Doug, you are such a good advocate for your wife. I know she must be a basket case at the moment. I know I was.
Here's the scoop on unknown primaries:
1. A lot of studies suggest that those with unknown primaries do better than those who had moles. The theory is that there originally was a melanoma mole somewhere in the vicinity of the affected lymph node basin. The body's immune system recognized and fought it off. Though the mole went away, a few cells escaped to a lymph node that then began to attack the melanoma there, hence the swelling. Now, the positive thing about this is that the immune system has recognized the invader and is fighting it!!
2. Your wife has probably been checked from stem to stern to see where there may be a mole. Doctors will pay close attention to the skin in the area near her right groin to look out for any trouble.
3. She may be told to have skin checks twice a year.
4. Some other studies suggest that those with unknown primaries fare the same or worse as those with known primaries. If a doctor focuses on that alone and ignores the other studies, you need to find a different doctor because he or she is not up to date on the goings on in the melanoma world. One question to ask any melanoma clinic is how many unknown primaries do they see in their practice.
5. It's VERY important to begin looking for a physical therapist who specializes in a condition called lymphedema. Your wife will be at risk for this after her groin lymph nodes are removed. What can happen is that since there are no more lymph nodes in her groin through which fluid can drain from her right leg, she will be prone to swelling in that extremity. A physical therapist knowledgable in this condition can educate her on what to look out for and what precautions she will need to take to prevent cuts and infection in that leg. If you folks like to travel to places by plane, it's imperative she get measured for a compression garment. Changes in air pressure can aggravate swelling. The therapist will fill her in on that. There is no rush at the moment to get her to PT, she will need to heal from her surgery first. Lymphedema is a manageable condition. Not everyone gets it but those with nodes removed from the groin are more prone to getting it than those with nodes removed from the arm pit.
Here is a link to a study on unknown primaries:
http://jco.ascopubs.org/content/26/4/535.long
General information on lymphedema:
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- March 25, 2016 at 5:54 pm
Hi Doug, apparently some of the other links I had, triggered the spam filter. So I'm going to post them separately:
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- March 25, 2016 at 5:54 pm
Hi Doug, apparently some of the other links I had, triggered the spam filter. So I'm going to post them separately:
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- March 26, 2016 at 11:16 pm
Thank you so much for these links, looking at them now!
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- March 26, 2016 at 11:16 pm
Thank you so much for these links, looking at them now!
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- March 26, 2016 at 11:16 pm
Thank you so much for these links, looking at them now!
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- March 25, 2016 at 5:54 pm
Hi Doug, apparently some of the other links I had, triggered the spam filter. So I'm going to post them separately:
-
- March 25, 2016 at 12:43 am
Hi Doug, I'm sorry you two are dealing with this right now.
Was your wife's melanoma found in the lymph node only, or did she have a mole? If it was found only in the lymph node and nowhere else then she has a melanoma with an unknown primary. If that's her diagnosis, then complete lymph node removal is what's done. This is because the path the melanoma took to get to her lymph node is not known. That's how it was explained to me when I asked my oncologist why I wasn't offered a sentinel lymph node biopsy.
If this is the case for your wife, please let me know. I have some links I can share with you.
It's too early to tell what part of Stage III she is. You won't know for certain until after the surgery when the pathology has been completed. Unfortunately, you still have some waiting ahead of you.
My badass node was 6cm. According to my oncologist, he'd seen bigger. So something that's 6-7cm is not shocking for someone experienced in treating melanoma.
-
- March 27, 2016 at 1:19 pm
Doug, this is a scary time for both of you. Last January I had lump in right groin only 3.4cm, I had lymph node dissection removing 16 nodes. 5 positive for melanoma. I would recommend getting this done, lymphodemia will be a possibility but manageable with exercise and massage. I saw my oncologist, he is not melanoma specialist and was comfortable with his choice of treatment. I had radiation after the surgery. I chose not to try any clinical trials, it did come back now stage 4, went on taf/me combo in September and now in remission. Positive additive and faith in your Doctor. Blessings during this time. Jamie
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- March 27, 2016 at 1:19 pm
Doug, this is a scary time for both of you. Last January I had lump in right groin only 3.4cm, I had lymph node dissection removing 16 nodes. 5 positive for melanoma. I would recommend getting this done, lymphodemia will be a possibility but manageable with exercise and massage. I saw my oncologist, he is not melanoma specialist and was comfortable with his choice of treatment. I had radiation after the surgery. I chose not to try any clinical trials, it did come back now stage 4, went on taf/me combo in September and now in remission. Positive additive and faith in your Doctor. Blessings during this time. Jamie
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- March 27, 2016 at 1:19 pm
Doug, this is a scary time for both of you. Last January I had lump in right groin only 3.4cm, I had lymph node dissection removing 16 nodes. 5 positive for melanoma. I would recommend getting this done, lymphodemia will be a possibility but manageable with exercise and massage. I saw my oncologist, he is not melanoma specialist and was comfortable with his choice of treatment. I had radiation after the surgery. I chose not to try any clinical trials, it did come back now stage 4, went on taf/me combo in September and now in remission. Positive additive and faith in your Doctor. Blessings during this time. Jamie
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