› Forums › General Melanoma Community › Stage 3, Boston Area, leaning towards NO lymphandectomy
- This topic has 32 replies, 8 voices, and was last updated 12 years, 11 months ago by
Ranisa.
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- May 28, 2011 at 2:21 am
Hi Everyone..I will try to keep this as short and sweet and understandable as I can..
I am 25 years old and in April was diagnosed with .70mm melanoma clark level IV on my right forearm, about 5 inches from my wrist. I had a wide excision done before my SNB because my dermatologist scared the crap out of me. About 3 weeks later, I had the SNB, in which 2 nodes were removed. One pathologist read them, and found nevus cells, but sent them to boston for a second opinion. Second opinion from Boston comes back as having cells that resemble those of micro mets of melanoma.
Hi Everyone..I will try to keep this as short and sweet and understandable as I can..
I am 25 years old and in April was diagnosed with .70mm melanoma clark level IV on my right forearm, about 5 inches from my wrist. I had a wide excision done before my SNB because my dermatologist scared the crap out of me. About 3 weeks later, I had the SNB, in which 2 nodes were removed. One pathologist read them, and found nevus cells, but sent them to boston for a second opinion. Second opinion from Boston comes back as having cells that resemble those of micro mets of melanoma.
I went to Boston last week, and I will tell you, being in the health care field I was pretty taken aback that the surgeon basically said, well this is what we can do..(take out the nodes). My dermatologist feels very strongly about not doing it, saying it does not do any benefit. I found this study and I am intriqued. http://www.gmmm.com.ve/lectura/00000658-200906000-00021.pdf
It brings me to ask…do I really need to have this done? I feel as though they want to use me as a lab rat….take my nodes, see if anything is there..and then the course of treatment will be the same…( IPI was mentioned). I am trying to convinve myself I am not in denial, but that I am advocating for myself. I understand Boston is a great place to get the care, that this disease is nasty, and that they know what they are talking about. I also feel though, that they know more then they are telling me.
I have a appt in 2 weeks with the surgical oncologist and the medical oncologist. The surgical oncologist offered to review my slides and discuss my case at their DR conference next week. I have heard horror stories about these, and I really just want what is best. I do not want to be over treated, or undertreated. Either way, my feeling is…if I dont do it, and something happens to show up elsewhere, I will still have to do IPI anyway.
Has anyone elected NOT to do this surgery??
- Replies
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- May 28, 2011 at 2:33 am
I'm sorry you've had to join us but hopefully you will get much information. The board is usually slow on weekends and this being Memorial Day weekend it will probably be very slow.
My history is much different so I really can't give you advice but I do know that many have the full disection of the nodes. If I was you I would have my pathology sent away to another dermapathologist just to be sure. Your insurance might not cover since you've already had 2 reads but to me it would be worth it. The Dr. conferences are actually a good way to go. There are Doctors with different opinions and they will later present you with their thoughts. My case had been brought before the tumor board so many times that my Doctor laughingly tells me that they all know me. You get a vote in what the final suggestion is also!
Ipi off trial is only given if you have active measurable disease even though it is FDA approved. If they have removed all of the cells then you are considered NED (no evidence of disease). There are trials for stage 3 but there is a placebo arm. That is a decision then that you would have to think upon carefully.
I hope others get back to you. If you haven't had many posts come Tuesday I would repost.
Linda
Stage IV since 06
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- May 28, 2011 at 2:44 am
I meant to ask you if there was a specific reason they did the SNB? Was the mole ulcerated or a high mitosis rate? Usually they don't do SNB's for that thin of a mole. If this is truly melanoma then it's really good that your Doctor was so proactive!
Linda
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- May 28, 2011 at 2:50 am
Hi Linda thanks for the reply so fast! My clark level was IV, and mitotic rate of 2, which those 2 factors alone I guess were concerning. My surgeon who did the SNB was excellent. She found all the new criteria and spoke with her husband who is also a surgeon ( he mainly does plastic reconstruction, but also with melanoma patients). She left it up to me, and I decided on doing it.
Usually she said they take the node out, then send it right down and make a decision to do the full disection right away, but she said she wasnt going to do that to me. Which I was, and still am grateful for. The dermatop. at mass general is the best so I hear, so the surgical oncologist down there feels like he is right in seeing something….but, they can't clearly tell me what it is, besides it resembles melanoma cells. So, I am confused, and pressing for more answers
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- May 28, 2011 at 2:50 am
Hi Linda thanks for the reply so fast! My clark level was IV, and mitotic rate of 2, which those 2 factors alone I guess were concerning. My surgeon who did the SNB was excellent. She found all the new criteria and spoke with her husband who is also a surgeon ( he mainly does plastic reconstruction, but also with melanoma patients). She left it up to me, and I decided on doing it.
Usually she said they take the node out, then send it right down and make a decision to do the full disection right away, but she said she wasnt going to do that to me. Which I was, and still am grateful for. The dermatop. at mass general is the best so I hear, so the surgical oncologist down there feels like he is right in seeing something….but, they can't clearly tell me what it is, besides it resembles melanoma cells. So, I am confused, and pressing for more answers
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- May 28, 2011 at 3:08 am
Last year several of us from this board went to a symposium in Chapel Hill. One of the guest speakers was a dermapathologist from San Francisco. He talked about how subjective reading a slide can be and how experience helps. He showed us many slides and the different interpretations that the slides had from different Doctors. There is a good chance that the pathologist will be at the tumor board meeting if he is from the same hospital. I know that the pathologist was in on at least one discussion about me. Mass General does have a great reputation!
Melanoma seems to do what it wants. Mine did not travel in the lymph system at all, instead it traveled in the blood from the breast to the bladder. Just recently I had recurrance 4,5 and 6 in the lymph nodes. For me they just cherry pick because they know that mine is systemic.
Found the article to be interesting. Originally in 06 my oncology surgeon refused to take any nodes near the breast and basically said the same thing as the article. I remember right before they put me to sleep he was holding my hand and we were having this same discussion.
Listen to what the tumor board has to say and then do more research before you make your decision. Whatever you decide you just can't look back.
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- May 28, 2011 at 3:08 am
Last year several of us from this board went to a symposium in Chapel Hill. One of the guest speakers was a dermapathologist from San Francisco. He talked about how subjective reading a slide can be and how experience helps. He showed us many slides and the different interpretations that the slides had from different Doctors. There is a good chance that the pathologist will be at the tumor board meeting if he is from the same hospital. I know that the pathologist was in on at least one discussion about me. Mass General does have a great reputation!
Melanoma seems to do what it wants. Mine did not travel in the lymph system at all, instead it traveled in the blood from the breast to the bladder. Just recently I had recurrance 4,5 and 6 in the lymph nodes. For me they just cherry pick because they know that mine is systemic.
Found the article to be interesting. Originally in 06 my oncology surgeon refused to take any nodes near the breast and basically said the same thing as the article. I remember right before they put me to sleep he was holding my hand and we were having this same discussion.
Listen to what the tumor board has to say and then do more research before you make your decision. Whatever you decide you just can't look back.
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- May 28, 2011 at 2:44 am
I meant to ask you if there was a specific reason they did the SNB? Was the mole ulcerated or a high mitosis rate? Usually they don't do SNB's for that thin of a mole. If this is truly melanoma then it's really good that your Doctor was so proactive!
Linda
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- May 28, 2011 at 2:33 am
I'm sorry you've had to join us but hopefully you will get much information. The board is usually slow on weekends and this being Memorial Day weekend it will probably be very slow.
My history is much different so I really can't give you advice but I do know that many have the full disection of the nodes. If I was you I would have my pathology sent away to another dermapathologist just to be sure. Your insurance might not cover since you've already had 2 reads but to me it would be worth it. The Dr. conferences are actually a good way to go. There are Doctors with different opinions and they will later present you with their thoughts. My case had been brought before the tumor board so many times that my Doctor laughingly tells me that they all know me. You get a vote in what the final suggestion is also!
Ipi off trial is only given if you have active measurable disease even though it is FDA approved. If they have removed all of the cells then you are considered NED (no evidence of disease). There are trials for stage 3 but there is a placebo arm. That is a decision then that you would have to think upon carefully.
I hope others get back to you. If you haven't had many posts come Tuesday I would repost.
Linda
Stage IV since 06
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- May 28, 2011 at 2:49 am
Hi,
I'm 3b, have been since late 2008, all my nodes under my left arm were removed in two surgeries and I wouldn't have it any other way! BTW, please make aure ALL your drs are melanoma specialists if at all possible. Your surgical onc, onc, and even derm.
Let me tell you why I'd go whole hog and get them all removed (like I did)…and no, you're not a lab rat! As you know, melanoma IS nasty and will lurk and show up any time at the seemingly most unlikely places. I'm sure you know about renegade cells. My melanoma was in my first sentinel node…all the other 26 were negative, but those nodes were the likely path for any renegades to emerge later…that chance is removed. My likelyhood of recurrence is less.
I have a 30-35% chance of it coming back, from my original primary, in either my brain or lungs…when I was given this stat in 2008, it was a 10 year stat, which I'm 2 1/2 years into with no trouble. Was it worth it to me> Absolutely! I shortly developed lymphedema and will wear my compression sleeve and glove the rest of my life. STILL WORTH IT!
Do I want to convince you to do this? YES! It's your call to be sure, but with all your nodes gone, you may be surprised how big a relief it actually is. If you choose to keep them. you will probably increase your chances of worrying all the time…and you might be unwittingly hanging on to some renegade cells that will bite you one day.
I wonder why you consider IPI without getting rid of the nodes? That really doesn't make much sense to me. I got rid of my nodes and opted NOT to do Interferon. The choice is definitely yours. And, oh yeah, I probably wouldn't consult with my derm on this. Not the best choice for a melanoma surgery discussion. Talk to a melanoma surgical onc.
Grace and peace,
Carol stage 3b
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- May 28, 2011 at 2:49 am
Hi,
I'm 3b, have been since late 2008, all my nodes under my left arm were removed in two surgeries and I wouldn't have it any other way! BTW, please make aure ALL your drs are melanoma specialists if at all possible. Your surgical onc, onc, and even derm.
Let me tell you why I'd go whole hog and get them all removed (like I did)…and no, you're not a lab rat! As you know, melanoma IS nasty and will lurk and show up any time at the seemingly most unlikely places. I'm sure you know about renegade cells. My melanoma was in my first sentinel node…all the other 26 were negative, but those nodes were the likely path for any renegades to emerge later…that chance is removed. My likelyhood of recurrence is less.
I have a 30-35% chance of it coming back, from my original primary, in either my brain or lungs…when I was given this stat in 2008, it was a 10 year stat, which I'm 2 1/2 years into with no trouble. Was it worth it to me> Absolutely! I shortly developed lymphedema and will wear my compression sleeve and glove the rest of my life. STILL WORTH IT!
Do I want to convince you to do this? YES! It's your call to be sure, but with all your nodes gone, you may be surprised how big a relief it actually is. If you choose to keep them. you will probably increase your chances of worrying all the time…and you might be unwittingly hanging on to some renegade cells that will bite you one day.
I wonder why you consider IPI without getting rid of the nodes? That really doesn't make much sense to me. I got rid of my nodes and opted NOT to do Interferon. The choice is definitely yours. And, oh yeah, I probably wouldn't consult with my derm on this. Not the best choice for a melanoma surgery discussion. Talk to a melanoma surgical onc.
Grace and peace,
Carol stage 3b
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- May 28, 2011 at 2:55 am
Carol, may I ask your age? I am concerned with the lymphadema, and my surgical oncologist said based on my age, which is 25, I should heal in no time. I am pretty skeptical about this, so they were going to try to connect me with a patient my age who they performed the surgery on so I could talk with them. Do you have to wear it all the time? I have seen studies that say there is no added benefit, I have read so much my eyes feel like I cant even read anymore and my brain can no longer understand ha!
Why do you have a chance of it going to your brain or lungs, where was your original?
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- May 28, 2011 at 1:29 pm
You ask anything you want & need to.
Ok, mentally and emotionally, I'm your age. But, chronologically I'm 51. All this began right before my 49th birthday.
I wear my compression sleeve and glove all day and take them off at bedtime. I had a lymphedema specialist physical therapist and according to her and my surgical onc, only 4-6% of patients with lymph nodes removed develop this. The vast likelihood is that you won't. If you do, you get used to it. It really is no biggy.
Let me put it this way: before my lymphedema was brought under control and I got my marks of grace (what I call my sleeve & glove), my whole left arm and hand looked like a huge ballon just waiting for someone to stick a pin in and pop. Horribly uncomfortable. I consider myself most blessed to live in a day and time when it can be relieved and helped. I've had folks tell me I need to get some wild tatoo sleeves to cover it and I've recently heard of one person getting a custon LAVENDER sleeve made! I love that…I wasn't presented a color palette back in early 2009.
Mine was a mole on my upper left arm, spread into first sentinel node. I guess where it was located is why my surgical onc told me what he did about where it would return if it did. It would either go up to my brain or lateral to my lungs. I suppose people with them removed from leg or groin areas worry about the liver. But that's me talking and not a dr.I have a colleague that his mel did spread to his brain. He dealt with that brain cancer for about a year, that was four years ago, and he's doing great.
Listen, you're young and you've got a wedding and family to plan. You'll carry melanoma with you, it's part of your life now. But, and please hear me, it's NOT THE SUM TOTAL OF YOU OR YOUR LIFE!!!!!! Don't let it run OR ruin your life. Do what you need to do, though, to ensure, as best as you can, that you are around to LIVE YOUR LIFE!!! Accept the fact that mel wants to ruin it. Don't let it. Stay on top of it. Keep a check on your attitude and stay positive and focused. You can do this. Trust me, life ain't worth losing over a few lymph nodes! You CAN live without them! You might shorten your life should you choose to live WITH them.
I'm here, as are all of us. Use us.
Lord, in Your mercy, guide our young friend here and speak Your peace to her soul. Amen.
Grace and peace,
Carol stge 3b
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- May 28, 2011 at 2:20 pm
Thanks for the reply…the reason I asked your age was becayse my surgical oncologist feels that because I am young, I have a better chance of not getting lymphadema…however, I did find a leopard print sleeve just incase!! I hear what you are saying, and I appreciate it. I need all the advice, support and encouragement I can get.
I start my first Reiki therapy session in a week and I am looking forward to that. I cant believe this tiny freckle turned out to be all this. As soon as I noticed it changing, I called…imagine if I did nothing? Yikes.
Since my sentinel node biopsy, I have pushed myself to heal…not over do it though. Ive been doing pilates strength exercises on my arm and almost have full range back and its been 3 weeks since the surgery. The dressing finally fell off last night and it looks great. How big of a incision is it for the lymphandectomy?
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- May 28, 2011 at 2:48 pm
You know something? I never, in all this time, thought about the incision size. I'm one of these people that "you do what you have to do and deal with it." It's in my armpit and I really can't see it. I think we may need to tackle a couple of other things you may or may not realize.
One, your armpit is going to be sunken. You won't be able to see to shave, but you deal with it….or at least, mine is sunken and I can't see inside that pit to shave and do it "blindly." I can't imagine other armpits not being sunken, but I suppose the possibility exists.
Two, when you get those nodes removed, they're going to put in a drainage tube that will collect into a collection tube and those collection tubes will need changing. You've had two nodes removed, so you may well already have a drainage system. I did. They put in a small one with my first surgery (2 nodes removed) and they replaced it with a larger one when they removed the remaining 25. I find it odd that of all the things you have mentioned, that you haven't mentioned "drains" so that's why I bring that up. Do you currently have drainage tubing?
Healing from the drainage once it's removed may prove to be your biggest challenge and one at 25 you won't like. That challenge, for me anyway, has been "bras." I've never bought so many looking for that perfect fit that won't hit my scar. Because I never found that perfect cut & fit, I wear camisoles with built in sports bras. Those are the only things I've found that didn't hit my scar tissue, which after all this time, still bothers me.
Friend, no matter what you decide, you're going to always have to deal with something. But that's life. I've learned that melanoma really does like to try to make mountains out of "mole" hills! I can warn you of possible future challenges, but you'll find your own because we're all different.
It's good to know what you're in for as best as possible and get "plans" in place. But, try not to let all this overwhelm you. And please, don't sweat the small stuff! An incision size that's under your arm, well, it's small stuff! If, for some reason, the size really does concern you, discuss this with your surgeon.
Make good use of your surgeon! Discuss what he/she will be doing! Check his or her credentials and make sure they're a melanoma specialist. Have some long talks with your fiance. Seriously. This is going to affect him to. Take him with you to every appointment you have with every dr you see and make sure he hears everything you hear. That is vital!
Also, make good use of your pharmacist. They are an excellent resource we often overlook.
Grace and peace,
Carol
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- May 28, 2011 at 2:48 pm
You know something? I never, in all this time, thought about the incision size. I'm one of these people that "you do what you have to do and deal with it." It's in my armpit and I really can't see it. I think we may need to tackle a couple of other things you may or may not realize.
One, your armpit is going to be sunken. You won't be able to see to shave, but you deal with it….or at least, mine is sunken and I can't see inside that pit to shave and do it "blindly." I can't imagine other armpits not being sunken, but I suppose the possibility exists.
Two, when you get those nodes removed, they're going to put in a drainage tube that will collect into a collection tube and those collection tubes will need changing. You've had two nodes removed, so you may well already have a drainage system. I did. They put in a small one with my first surgery (2 nodes removed) and they replaced it with a larger one when they removed the remaining 25. I find it odd that of all the things you have mentioned, that you haven't mentioned "drains" so that's why I bring that up. Do you currently have drainage tubing?
Healing from the drainage once it's removed may prove to be your biggest challenge and one at 25 you won't like. That challenge, for me anyway, has been "bras." I've never bought so many looking for that perfect fit that won't hit my scar. Because I never found that perfect cut & fit, I wear camisoles with built in sports bras. Those are the only things I've found that didn't hit my scar tissue, which after all this time, still bothers me.
Friend, no matter what you decide, you're going to always have to deal with something. But that's life. I've learned that melanoma really does like to try to make mountains out of "mole" hills! I can warn you of possible future challenges, but you'll find your own because we're all different.
It's good to know what you're in for as best as possible and get "plans" in place. But, try not to let all this overwhelm you. And please, don't sweat the small stuff! An incision size that's under your arm, well, it's small stuff! If, for some reason, the size really does concern you, discuss this with your surgeon.
Make good use of your surgeon! Discuss what he/she will be doing! Check his or her credentials and make sure they're a melanoma specialist. Have some long talks with your fiance. Seriously. This is going to affect him to. Take him with you to every appointment you have with every dr you see and make sure he hears everything you hear. That is vital!
Also, make good use of your pharmacist. They are an excellent resource we often overlook.
Grace and peace,
Carol
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- May 28, 2011 at 2:20 pm
Thanks for the reply…the reason I asked your age was becayse my surgical oncologist feels that because I am young, I have a better chance of not getting lymphadema…however, I did find a leopard print sleeve just incase!! I hear what you are saying, and I appreciate it. I need all the advice, support and encouragement I can get.
I start my first Reiki therapy session in a week and I am looking forward to that. I cant believe this tiny freckle turned out to be all this. As soon as I noticed it changing, I called…imagine if I did nothing? Yikes.
Since my sentinel node biopsy, I have pushed myself to heal…not over do it though. Ive been doing pilates strength exercises on my arm and almost have full range back and its been 3 weeks since the surgery. The dressing finally fell off last night and it looks great. How big of a incision is it for the lymphandectomy?
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- May 28, 2011 at 1:29 pm
You ask anything you want & need to.
Ok, mentally and emotionally, I'm your age. But, chronologically I'm 51. All this began right before my 49th birthday.
I wear my compression sleeve and glove all day and take them off at bedtime. I had a lymphedema specialist physical therapist and according to her and my surgical onc, only 4-6% of patients with lymph nodes removed develop this. The vast likelihood is that you won't. If you do, you get used to it. It really is no biggy.
Let me put it this way: before my lymphedema was brought under control and I got my marks of grace (what I call my sleeve & glove), my whole left arm and hand looked like a huge ballon just waiting for someone to stick a pin in and pop. Horribly uncomfortable. I consider myself most blessed to live in a day and time when it can be relieved and helped. I've had folks tell me I need to get some wild tatoo sleeves to cover it and I've recently heard of one person getting a custon LAVENDER sleeve made! I love that…I wasn't presented a color palette back in early 2009.
Mine was a mole on my upper left arm, spread into first sentinel node. I guess where it was located is why my surgical onc told me what he did about where it would return if it did. It would either go up to my brain or lateral to my lungs. I suppose people with them removed from leg or groin areas worry about the liver. But that's me talking and not a dr.I have a colleague that his mel did spread to his brain. He dealt with that brain cancer for about a year, that was four years ago, and he's doing great.
Listen, you're young and you've got a wedding and family to plan. You'll carry melanoma with you, it's part of your life now. But, and please hear me, it's NOT THE SUM TOTAL OF YOU OR YOUR LIFE!!!!!! Don't let it run OR ruin your life. Do what you need to do, though, to ensure, as best as you can, that you are around to LIVE YOUR LIFE!!! Accept the fact that mel wants to ruin it. Don't let it. Stay on top of it. Keep a check on your attitude and stay positive and focused. You can do this. Trust me, life ain't worth losing over a few lymph nodes! You CAN live without them! You might shorten your life should you choose to live WITH them.
I'm here, as are all of us. Use us.
Lord, in Your mercy, guide our young friend here and speak Your peace to her soul. Amen.
Grace and peace,
Carol stge 3b
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- May 28, 2011 at 2:55 am
Carol, may I ask your age? I am concerned with the lymphadema, and my surgical oncologist said based on my age, which is 25, I should heal in no time. I am pretty skeptical about this, so they were going to try to connect me with a patient my age who they performed the surgery on so I could talk with them. Do you have to wear it all the time? I have seen studies that say there is no added benefit, I have read so much my eyes feel like I cant even read anymore and my brain can no longer understand ha!
Why do you have a chance of it going to your brain or lungs, where was your original?
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- May 28, 2011 at 3:00 am
It is generally medical protocol to have the LND. There have been clinical trials where they also compared doing the LND against periodic ultrasound monitoring. I've never seen any results from those trials but you might do some searching. If you choose not to do the LND, I would suggest you find someone who will follow your nodes with an ultrasound.
My father recently became stage III and we are not doing the LND with him, either. But his reasons are a bit different given his age – 86. For him, the LND would be on his cane arm and likely compromise his quality of life, so he won't be going that route at this time.
Best wishes on your decision.
Janner
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- May 28, 2011 at 3:00 am
It is generally medical protocol to have the LND. There have been clinical trials where they also compared doing the LND against periodic ultrasound monitoring. I've never seen any results from those trials but you might do some searching. If you choose not to do the LND, I would suggest you find someone who will follow your nodes with an ultrasound.
My father recently became stage III and we are not doing the LND with him, either. But his reasons are a bit different given his age – 86. For him, the LND would be on his cane arm and likely compromise his quality of life, so he won't be going that route at this time.
Best wishes on your decision.
Janner
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- May 28, 2011 at 3:14 am
After my initial surgery (wide excision with a skin graft on my scalp) and the sentinal node biopsy, I had 23 lymph nodes removed from my neck. I had a small tumor in my sentinal node as well as some melanoma cells in my 23rd node.
Melanoma travels along the lymph highway. Check out a picture of our lymph system and you will see how extensive it is. Stray cancer cells move along this highway and may stop and form a tumor anywhere along the line. If this tumor is formed in a major organ, we are in stage 4. Very hard to cure any kind of Stage 4 cancer.
When I removed my sentinal node and found a small tumor, I had NO way of knowing how many other cells were lurking in my lymph system, my cancer highway. By removing the other nodes in that area, I removed the nodes most likely to contain cancer. Much easier to remove cancer cells by surgery than chemo or other non-surgical treatment.
And yes, I do have some side effects from the surgery. Not lymphodema, but others. However, I am fighting a deadly disease and I will have some battle scars.
As far as I understand, melanoma tends to go to the brain and lungs more often than other areas.
As you can see, my answers are much less technical than what others write. I have received excellent advice and encouragemen from this forum. Much better than anywhere else I have looke and I have read lots on the internet.
Praying for you,
Nicki, Stage 3b, scalp
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- May 28, 2011 at 3:14 am
After my initial surgery (wide excision with a skin graft on my scalp) and the sentinal node biopsy, I had 23 lymph nodes removed from my neck. I had a small tumor in my sentinal node as well as some melanoma cells in my 23rd node.
Melanoma travels along the lymph highway. Check out a picture of our lymph system and you will see how extensive it is. Stray cancer cells move along this highway and may stop and form a tumor anywhere along the line. If this tumor is formed in a major organ, we are in stage 4. Very hard to cure any kind of Stage 4 cancer.
When I removed my sentinal node and found a small tumor, I had NO way of knowing how many other cells were lurking in my lymph system, my cancer highway. By removing the other nodes in that area, I removed the nodes most likely to contain cancer. Much easier to remove cancer cells by surgery than chemo or other non-surgical treatment.
And yes, I do have some side effects from the surgery. Not lymphodema, but others. However, I am fighting a deadly disease and I will have some battle scars.
As far as I understand, melanoma tends to go to the brain and lungs more often than other areas.
As you can see, my answers are much less technical than what others write. I have received excellent advice and encouragemen from this forum. Much better than anywhere else I have looke and I have read lots on the internet.
Praying for you,
Nicki, Stage 3b, scalp
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- May 28, 2011 at 4:34 am
Some melanomas have been cured by taking out the lymph nodes before they get a chance to spread the cancer elsewhere.
I wouldn't wait to get them removed. Better safe than sorry when it comes to melanoma.
I don't want to be an alarmist, but have a look at my profile. My husband's original mel was in situ when it was removed 2 years ago. By the time we found out the cancer was in his lymph nodes last month, it was already spreading and has continued to spread at a very aggressive pace.
It is really a tricky beast, so I would also HIGHLY recommend getting a melanoma specialist involved ASAP.
You say you are from the Boston area…if so, I would give my highest recommendation to Dr. Donald Lawrence and his staff at the MGH Melanoma Center. Top notch crew, really. And Dr. Lawrence has been a melanoma specialist for most of 15 years; he is the head of their clinical trials department, I believe. If anyone is going to know all the possible treatments out there, and which one(s) are most appropriate for you, he will.
We started out at Dana Farber, and while it is, of course, a fantastic cancer hospital, my husband and I did not have the best experience there with their melanoma department. They appear to be short staffed in that department at the moment (2nd in command left in Jan to Sloan Kettering in NYC) and we did not get the kind of personalized and timely treatment we have since switching to MGH.
Best of luck with your decision and if you would like more information about either center, please feel free to let me know. : )
Michelle, wife to Don, Stage IV
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- May 28, 2011 at 4:34 am
Some melanomas have been cured by taking out the lymph nodes before they get a chance to spread the cancer elsewhere.
I wouldn't wait to get them removed. Better safe than sorry when it comes to melanoma.
I don't want to be an alarmist, but have a look at my profile. My husband's original mel was in situ when it was removed 2 years ago. By the time we found out the cancer was in his lymph nodes last month, it was already spreading and has continued to spread at a very aggressive pace.
It is really a tricky beast, so I would also HIGHLY recommend getting a melanoma specialist involved ASAP.
You say you are from the Boston area…if so, I would give my highest recommendation to Dr. Donald Lawrence and his staff at the MGH Melanoma Center. Top notch crew, really. And Dr. Lawrence has been a melanoma specialist for most of 15 years; he is the head of their clinical trials department, I believe. If anyone is going to know all the possible treatments out there, and which one(s) are most appropriate for you, he will.
We started out at Dana Farber, and while it is, of course, a fantastic cancer hospital, my husband and I did not have the best experience there with their melanoma department. They appear to be short staffed in that department at the moment (2nd in command left in Jan to Sloan Kettering in NYC) and we did not get the kind of personalized and timely treatment we have since switching to MGH.
Best of luck with your decision and if you would like more information about either center, please feel free to let me know. : )
Michelle, wife to Don, Stage IV
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- May 28, 2011 at 5:45 am
Hi there. I know it must be scary hearing your diagnosis and being bombarded with so much info. It's hard to know what to do for sure, but I really think that most people with Melanoma will opt to have their lymph nodes out. I know I did. I have a mole on my upper chest and was diagnosed just back in March of this year. Since then I've had the mole removed, then a wider part around the mole removed, I had one lymph node taken out and it was positive for Melanoma, so I opted to have all the rest out, which I did. It was almost a month ago that I had the surgery and since then I've gotten lymphadema. I was terrified of this happening before the surgery… I knew it was a risk. Now that I have it… no big deal. I don't have it in my arm like most people, I have it on the side of my torso and in my right breast but I doesn't really bother me. I have some physical therapy starting next week to help with exercises to reduce the swelling.
I tell you, it really makes me feel better knowing that Melanoma travels that lymphatic highway, and that I just took that highway for good forever. It may pop up somewhere else in the future… there are no guarantees… but I have piece of mind. If I had left my lymph nodes in, I feel positive it would have spread.
You're so young, only 25, I would be AGRESSIVE. You have alot of life left to live. If caught early, the prognosis is excellent, but your lymph nodes already showed some mel spots. That's a huge red flag. Get them out, and get them out now. You'll be glad you did.
Good luck whatever you decide, my prayers are with you. 🙂
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- May 28, 2011 at 11:49 am
Thanks to all for the posts! I am getting married on 8-5 and told my surgeon NOTHING is going to happen until after the wedding. She didnt seem so concerned, and said that is fine. I go back on June 8th to meet with her ( Jennifer Wargo, and Keith Flaherty). My biggest concern is getting pregnant after all of this. I was supposed to start nursing school this fall, and now that is being put off because I cant afford to lose my insurance. We were also going to get pregnant next year…so we are trying our best to keep everything as normal as we can.
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- May 28, 2011 at 11:49 am
Thanks to all for the posts! I am getting married on 8-5 and told my surgeon NOTHING is going to happen until after the wedding. She didnt seem so concerned, and said that is fine. I go back on June 8th to meet with her ( Jennifer Wargo, and Keith Flaherty). My biggest concern is getting pregnant after all of this. I was supposed to start nursing school this fall, and now that is being put off because I cant afford to lose my insurance. We were also going to get pregnant next year…so we are trying our best to keep everything as normal as we can.
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- May 28, 2011 at 5:45 am
Hi there. I know it must be scary hearing your diagnosis and being bombarded with so much info. It's hard to know what to do for sure, but I really think that most people with Melanoma will opt to have their lymph nodes out. I know I did. I have a mole on my upper chest and was diagnosed just back in March of this year. Since then I've had the mole removed, then a wider part around the mole removed, I had one lymph node taken out and it was positive for Melanoma, so I opted to have all the rest out, which I did. It was almost a month ago that I had the surgery and since then I've gotten lymphadema. I was terrified of this happening before the surgery… I knew it was a risk. Now that I have it… no big deal. I don't have it in my arm like most people, I have it on the side of my torso and in my right breast but I doesn't really bother me. I have some physical therapy starting next week to help with exercises to reduce the swelling.
I tell you, it really makes me feel better knowing that Melanoma travels that lymphatic highway, and that I just took that highway for good forever. It may pop up somewhere else in the future… there are no guarantees… but I have piece of mind. If I had left my lymph nodes in, I feel positive it would have spread.
You're so young, only 25, I would be AGRESSIVE. You have alot of life left to live. If caught early, the prognosis is excellent, but your lymph nodes already showed some mel spots. That's a huge red flag. Get them out, and get them out now. You'll be glad you did.
Good luck whatever you decide, my prayers are with you. 🙂
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- May 28, 2011 at 3:18 pm
I am sorry I am asking or touchking on something that has been answered by one of the other post-I just had time to skim them. I had a simular experience-there was something in my lymph node. It was reviewed by many pathologist at 3 different hospitals. Then I moved and got the crud scared out of me by the new oncologist who want to make sure that it was nothing and wanted to send those slides onto who he consideres the best guy out there for a review. Nothing wrong with getting a second, third or in my case a 4th opinion. The slides were sent to David E. Elder in the pathology dept at the Hospital of the University of Pennsylvania. This report was AMAZING! Like I said I have had 3 different reports from some well known hospitals and there reports were never longer than 1/3-1/2 page long. The report that I got back from this guy was almost 2 pages long. Extreamly detailed. I would suggest having your stuff sent to him. FAST. Just to make sure.
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- May 28, 2011 at 3:18 pm
I am sorry I am asking or touchking on something that has been answered by one of the other post-I just had time to skim them. I had a simular experience-there was something in my lymph node. It was reviewed by many pathologist at 3 different hospitals. Then I moved and got the crud scared out of me by the new oncologist who want to make sure that it was nothing and wanted to send those slides onto who he consideres the best guy out there for a review. Nothing wrong with getting a second, third or in my case a 4th opinion. The slides were sent to David E. Elder in the pathology dept at the Hospital of the University of Pennsylvania. This report was AMAZING! Like I said I have had 3 different reports from some well known hospitals and there reports were never longer than 1/3-1/2 page long. The report that I got back from this guy was almost 2 pages long. Extreamly detailed. I would suggest having your stuff sent to him. FAST. Just to make sure.
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