Wife newly diagnosed

I agree…try not to look at the old statistics.  I made that mistake and made myself a little crazy!  And please do find a Melanoma specialist (maybe you already have one)…makes all the difference because they're up on the latest therapies.  

Terrie

I agree…try not to look at the old statistics.  I made that mistake and made myself a little crazy!  And please do find a Melanoma specialist (maybe you already have one)…makes all the difference because they're up on the latest therapies.  

Terrie

I agree…try not to look at the old statistics.  I made that mistake and made myself a little crazy!  And please do find a Melanoma specialist (maybe you already have one)…makes all the difference because they're up on the latest therapies.  

Terrie

Hi. Thought I would answer since mine was in the same place.  It was breslow 1.8.  Non ulcerated. I had a small amount of cancer cells in the sentinal node. One to two percent of the surface area. I did also have the surface nodes or inguinal nodes removed on that side.  No other of the 11 nodes taken had any cancer cells in them.  I was in observation in the hospital overnight and went home with 2 Jackson Pratt drains. They stayed in for two weeks.  And I needed to take 4 weeks off from work since I travel a lot. After much research,  I elected not to take the interferon since only about 5%  of people get any benefit from it.   I am currently doing nothing else but wait and watch for stage 3a.  I did have brain MRI, chest and pelvic ct scans with contrast.  They are watching a couple of areas.  Sorry you had to join the club.  But lots of good treatments out there now to try if it spreads.  Best wishes.

Hi. Thought I would answer since mine was in the same place.  It was breslow 1.8.  Non ulcerated. I had a small amount of cancer cells in the sentinal node. One to two percent of the surface area. I did also have the surface nodes or inguinal nodes removed on that side.  No other of the 11 nodes taken had any cancer cells in them.  I was in observation in the hospital overnight and went home with 2 Jackson Pratt drains. They stayed in for two weeks.  And I needed to take 4 weeks off from work since I travel a lot. After much research,  I elected not to take the interferon since only about 5%  of people get any benefit from it.   I am currently doing nothing else but wait and watch for stage 3a.  I did have brain MRI, chest and pelvic ct scans with contrast.  They are watching a couple of areas.  Sorry you had to join the club.  But lots of good treatments out there now to try if it spreads.  Best wishes.

My Mom was diagnosed last year at stage IV. Like the others I recommend that you find a melanoma specialist, it makes a real difference because treatment is changing rapidly and if they don’t specialize in melanoma they may not be fully aware of options….

I also recommend keeping copies of all reports, images…and making an appointment for a second opinion. We had 3 and found out during the 3rd that a radiologist MISSED brain cancer. Needless to say, that is a big mistake and the only doctor to catch it was the one who saw the images. The other two melanoma specialists didn’t look. They read the report.

You did not mention where you are and if she is BRAF + or not (you need to know that, it gives her options others don’t have). Other’s here could make recommendations for oncologists too, but here are mine:
Dr. Peter Bosaberg, Santa Monica, CA. – Melanoma Specialist & Researcher at a Melanoma Center of Excellence.
Dr. Michael Wong, Los Angeles, CA. – Melanoma Specialist & Researcher at USC Norris Cancer Center.

Both are awesome.

My Mom was diagnosed last year at stage IV. Like the others I recommend that you find a melanoma specialist, it makes a real difference because treatment is changing rapidly and if they don’t specialize in melanoma they may not be fully aware of options….

I also recommend keeping copies of all reports, images…and making an appointment for a second opinion. We had 3 and found out during the 3rd that a radiologist MISSED brain cancer. Needless to say, that is a big mistake and the only doctor to catch it was the one who saw the images. The other two melanoma specialists didn’t look. They read the report.

You did not mention where you are and if she is BRAF + or not (you need to know that, it gives her options others don’t have). Other’s here could make recommendations for oncologists too, but here are mine:
Dr. Peter Bosaberg, Santa Monica, CA. – Melanoma Specialist & Researcher at a Melanoma Center of Excellence.
Dr. Michael Wong, Los Angeles, CA. – Melanoma Specialist & Researcher at USC Norris Cancer Center.

Both are awesome.

My Mom was diagnosed last year at stage IV. Like the others I recommend that you find a melanoma specialist, it makes a real difference because treatment is changing rapidly and if they don’t specialize in melanoma they may not be fully aware of options….

I also recommend keeping copies of all reports, images…and making an appointment for a second opinion. We had 3 and found out during the 3rd that a radiologist MISSED brain cancer. Needless to say, that is a big mistake and the only doctor to catch it was the one who saw the images. The other two melanoma specialists didn’t look. They read the report.

You did not mention where you are and if she is BRAF + or not (you need to know that, it gives her options others don’t have). Other’s here could make recommendations for oncologists too, but here are mine:
Dr. Peter Bosaberg, Santa Monica, CA. – Melanoma Specialist & Researcher at a Melanoma Center of Excellence.
Dr. Michael Wong, Los Angeles, CA. – Melanoma Specialist & Researcher at USC Norris Cancer Center.

Both are awesome.

Hi. Thought I would answer since mine was in the same place.  It was breslow 1.8.  Non ulcerated. I had a small amount of cancer cells in the sentinal node. One to two percent of the surface area. I did also have the surface nodes or inguinal nodes removed on that side.  No other of the 11 nodes taken had any cancer cells in them.  I was in observation in the hospital overnight and went home with 2 Jackson Pratt drains. They stayed in for two weeks.  And I needed to take 4 weeks off from work since I travel a lot. After much research,  I elected not to take the interferon since only about 5%  of people get any benefit from it.   I am currently doing nothing else but wait and watch for stage 3a.  I did have brain MRI, chest and pelvic ct scans with contrast.  They are watching a couple of areas.  Sorry you had to join the club.  But lots of good treatments out there now to try if it spreads.  Best wishes.

Actually, your wife is not considered to have a "high risk of recurrence". Her primary lesion is thin (<1.0mm), 0 mitotic index and no ulceration. Her primary tumor stage (pT1a) is as low as you can get barring melanoma in situ (which some oncologists don't think is really invasive at all). Yes, having micromets in one lymph node clouds the picture, but she is not high risk. Some people, when they are first diagnosed, have a breslow depth of 5 mm or greater or a mitotic index of 10 or greater and so on. Those are definitely "high risk" cases. 

I think that the wisest approach to take for a low-risk Stage III is different from the approach for a high risk Stage III. "Watch and wait" might be a valid option for her. Or, there is now a clilnical trial going on comparing frequent scanning of lymph nodes with ultrasound versus complete lymphectomy. That might be a good option. Or perhaps the clinical trials you mentioned.

It's good that you're going to Duke for a second opinion. I suspect that you and your wife will be vastly reassured by what you learn there. Things are not as bad as you fear they are. After you consult with them and hear their recommendations, you and your wife will have to decide which treatment option she is most comfortable with. Some prefer a more low-key approach, some a more aggressive approach. Just try not to panic. Statistically, the chances are very good that your wife will never see melanoma again.

Actually, your wife is not considered to have a "high risk of recurrence". Her primary lesion is thin (<1.0mm), 0 mitotic index and no ulceration. Her primary tumor stage (pT1a) is as low as you can get barring melanoma in situ (which some oncologists don't think is really invasive at all). Yes, having micromets in one lymph node clouds the picture, but she is not high risk. Some people, when they are first diagnosed, have a breslow depth of 5 mm or greater or a mitotic index of 10 or greater and so on. Those are definitely "high risk" cases. 

I think that the wisest approach to take for a low-risk Stage III is different from the approach for a high risk Stage III. "Watch and wait" might be a valid option for her. Or, there is now a clilnical trial going on comparing frequent scanning of lymph nodes with ultrasound versus complete lymphectomy. That might be a good option. Or perhaps the clinical trials you mentioned.

It's good that you're going to Duke for a second opinion. I suspect that you and your wife will be vastly reassured by what you learn there. Things are not as bad as you fear they are. After you consult with them and hear their recommendations, you and your wife will have to decide which treatment option she is most comfortable with. Some prefer a more low-key approach, some a more aggressive approach. Just try not to panic. Statistically, the chances are very good that your wife will never see melanoma again.

Dear Leslie's Husband,

          I share with you the story of my wife, Les, who had a thin melanoma and a positive micrometastic sentinal node 11 years ago. We did decided to do a completion lymphadenectomy which was negative. Your Leslie (like my wife was) is at least Stage 3a pending further evaluation. If you look at the survival curves for Stage 3a  http://jco.ascopubs.org/content/27/36/6199/F1.large.jpg  the 10 year survival is 70%. So the odds are in your favor. On the other hand, the death rate of 30% is not insignificant. Not "low risk" in our book. However, at that time the only treatment available for Les was interferon which is not effective and has horrible sometimes permanent side effects. We chose to do observation. At year 7 Les had brain and lung mets followed by tonsillar mets. She became Stage 4. Now, after ANTI-PD1 (Nivo) in a clinical, trial she is 40 months NED. So, for Leslie, at this point, observation is a reasonable option but you have to look at the odds realistically. The treatments available for melanoma have changed. There some effective ones on the market and there are clinical trials with other agents that maybe effective. That may influence your decision.

It is clear now that a completion lymphadenectomy in this circumstance does improve the chance of survival.http://www.nejm.org/doi/full/10.1056/NEJMoa1310460 . Doing a completion lymphadenectomy is not a light decision and there is some controversy about it. Here is a link to a discussion of the pros and cons.http://www.ascopost.com/issues/may-1,-2013/does-every-melanoma-patient-with-a-positive-sentinel-node-need-more-lymph-nodes-removed.aspx.

These are not easy times. Check out Les' blog at http://chaoticallypreciselifeloveandmelanoma.blogspot.com/ for more melanoma information and how she has dealt with the whole thing.   Good Luck.

Dear Leslie's Husband,

          I share with you the story of my wife, Les, who had a thin melanoma and a positive micrometastic sentinal node 11 years ago. We did decided to do a completion lymphadenectomy which was negative. Your Leslie (like my wife was) is at least Stage 3a pending further evaluation. If you look at the survival curves for Stage 3a  http://jco.ascopubs.org/content/27/36/6199/F1.large.jpg  the 10 year survival is 70%. So the odds are in your favor. On the other hand, the death rate of 30% is not insignificant. Not "low risk" in our book. However, at that time the only treatment available for Les was interferon which is not effective and has horrible sometimes permanent side effects. We chose to do observation. At year 7 Les had brain and lung mets followed by tonsillar mets. She became Stage 4. Now, after ANTI-PD1 (Nivo) in a clinical, trial she is 40 months NED. So, for Leslie, at this point, observation is a reasonable option but you have to look at the odds realistically. The treatments available for melanoma have changed. There some effective ones on the market and there are clinical trials with other agents that maybe effective. That may influence your decision.

It is clear now that a completion lymphadenectomy in this circumstance does improve the chance of survival.http://www.nejm.org/doi/full/10.1056/NEJMoa1310460 . Doing a completion lymphadenectomy is not a light decision and there is some controversy about it. Here is a link to a discussion of the pros and cons.http://www.ascopost.com/issues/may-1,-2013/does-every-melanoma-patient-with-a-positive-sentinel-node-need-more-lymph-nodes-removed.aspx.

These are not easy times. Check out Les' blog at http://chaoticallypreciselifeloveandmelanoma.blogspot.com/ for more melanoma information and how she has dealt with the whole thing.   Good Luck.

Dear Leslie's Husband,

          I share with you the story of my wife, Les, who had a thin melanoma and a positive micrometastic sentinal node 11 years ago. We did decided to do a completion lymphadenectomy which was negative. Your Leslie (like my wife was) is at least Stage 3a pending further evaluation. If you look at the survival curves for Stage 3a  http://jco.ascopubs.org/content/27/36/6199/F1.large.jpg  the 10 year survival is 70%. So the odds are in your favor. On the other hand, the death rate of 30% is not insignificant. Not "low risk" in our book. However, at that time the only treatment available for Les was interferon which is not effective and has horrible sometimes permanent side effects. We chose to do observation. At year 7 Les had brain and lung mets followed by tonsillar mets. She became Stage 4. Now, after ANTI-PD1 (Nivo) in a clinical, trial she is 40 months NED. So, for Leslie, at this point, observation is a reasonable option but you have to look at the odds realistically. The treatments available for melanoma have changed. There some effective ones on the market and there are clinical trials with other agents that maybe effective. That may influence your decision.

It is clear now that a completion lymphadenectomy in this circumstance does improve the chance of survival.http://www.nejm.org/doi/full/10.1056/NEJMoa1310460 . Doing a completion lymphadenectomy is not a light decision and there is some controversy about it. Here is a link to a discussion of the pros and cons.http://www.ascopost.com/issues/may-1,-2013/does-every-melanoma-patient-with-a-positive-sentinel-node-need-more-lymph-nodes-removed.aspx.

These are not easy times. Check out Les' blog at http://chaoticallypreciselifeloveandmelanoma.blogspot.com/ for more melanoma information and how she has dealt with the whole thing.   Good Luck.

Actually, your wife is not considered to have a "high risk of recurrence". Her primary lesion is thin (<1.0mm), 0 mitotic index and no ulceration. Her primary tumor stage (pT1a) is as low as you can get barring melanoma in situ (which some oncologists don't think is really invasive at all). Yes, having micromets in one lymph node clouds the picture, but she is not high risk. Some people, when they are first diagnosed, have a breslow depth of 5 mm or greater or a mitotic index of 10 or greater and so on. Those are definitely "high risk" cases. 

I think that the wisest approach to take for a low-risk Stage III is different from the approach for a high risk Stage III. "Watch and wait" might be a valid option for her. Or, there is now a clilnical trial going on comparing frequent scanning of lymph nodes with ultrasound versus complete lymphectomy. That might be a good option. Or perhaps the clinical trials you mentioned.

It's good that you're going to Duke for a second opinion. I suspect that you and your wife will be vastly reassured by what you learn there. Things are not as bad as you fear they are. After you consult with them and hear their recommendations, you and your wife will have to decide which treatment option she is most comfortable with. Some prefer a more low-key approach, some a more aggressive approach. Just try not to panic. Statistically, the chances are very good that your wife will never see melanoma again.