Help Please, Wife Newly Diagnosed

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.

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.

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.

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

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

Doug,

There's another member on here named Sally that is in Missouri.  Can't remember if she's at Siteman or not.  I'll send her an email and point her to this thread.  You two might be a good resource for each other.

Brian

Doug,

There's another member on here named Sally that is in Missouri.  Can't remember if she's at Siteman or not.  I'll send her an email and point her to this thread.  You two might be a good resource for each other.

Brian

Doug,

There's another member on here named Sally that is in Missouri.  Can't remember if she's at Siteman or not.  I'll send her an email and point her to this thread.  You two might be a good resource for each other.

Brian

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

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:

http://www.lymphedemapeople.com/wiki/doku.php?id=enhance_your_understanding_of_lower_quadrant_lymphedema

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:

http://www.lymphedemapeople.com/wiki/doku.php?id=enhance_your_understanding_of_lower_quadrant_lymphedema

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:

http://www.lymphedemapeople.com/wiki/doku.php?id=enhance_your_understanding_of_lower_quadrant_lymphedema

Hi Doug, apparently some of the other links I had, triggered the spam filter. So I'm going to post them separately:

Hi Doug, apparently some of the other links I had, triggered the spam filter. So I'm going to post them separately:

Hi Doug, apparently some of the other links I had, triggered the spam filter. So I'm going to post them separately:

One link to a pdf file was triggering the spam warning. UGH! It annoys me because I'm trying to help someone, yet messages selling illegal documents from spammers manage to get through. It's just aggravating!

One link to a pdf file was triggering the spam warning. UGH! It annoys me because I'm trying to help someone, yet messages selling illegal documents from spammers manage to get through. It's just aggravating!

One link to a pdf file was triggering the spam warning. UGH! It annoys me because I'm trying to help someone, yet messages selling illegal documents from spammers manage to get through. It's just aggravating!