› Forums › General Melanoma Community › Active prevention?
- This topic has 44 replies, 10 voices, and was last updated 12 years, 9 months ago by
Janner.
- Post
-
- July 24, 2011 at 1:57 am
I've been driving myself crazy by reading a lot of studies. I always end up scared and in a bad mood. My family says I am no longer fun to be around. I've learned a lot that I didn't know before, though, so maybe I have to go through this process. So many statistics, though, and so much conflicting information. It's maddening!
I've been driving myself crazy by reading a lot of studies. I always end up scared and in a bad mood. My family says I am no longer fun to be around. I've learned a lot that I didn't know before, though, so maybe I have to go through this process. So many statistics, though, and so much conflicting information. It's maddening!
Are we all prisoners of these stats or are there things that you can do to make it less likely that you will get a recurrance? If you whipped your body into the best shape of your life and ate super healthy, will that really make a difference or will some study conclude "no significant survival benefit"?
The stats are in my favor at present, it seems, but certainly no guarantee. I hate the idea of passively hoping for no recurrance. I feel a need to take some kind of action to seize control of my fate, but is there really anything that a person can do that can make a significant difference?
Steve
- Replies
-
-
- July 24, 2011 at 2:19 am
No, I am not a prisoner, if you choose to be one, that is up to you.
Statistics are only a report of what happened to a certain group of people in the past and are in no way a reflection of what will happen to any one person in the future.
It is up to the individual to endorse that or not.
Me? Not.
Stage IV since 1996.
You decide.
Charlie S
-
- July 24, 2011 at 2:19 am
No, I am not a prisoner, if you choose to be one, that is up to you.
Statistics are only a report of what happened to a certain group of people in the past and are in no way a reflection of what will happen to any one person in the future.
It is up to the individual to endorse that or not.
Me? Not.
Stage IV since 1996.
You decide.
Charlie S
-
- July 24, 2011 at 2:22 am
Hi Steve —
I have dealt with exactly the issues you described. And since my melanoma first appeared in a lymph node with an unknown primary source, I cannot even look back and ask, "What could I have done differently to avoid this in the first place."
Some people on this board smoke cigarettes, drink rum and Coke, and go on forever. Others go macrobiotic (or something close to that) and die within a year.
So you're not totally in control. Some of your outcome will reflect the specific nature of your disease. But I believe that you can affect the outcome by altering diet, increasing exercise, reducing stress, and sleeping better (all factors that improve resistance). Fifteen years ago, I lost weight, started exercising, became more careful about what I ate. My immune system became stronger than ever. And while my tumor has a fairly aggressively morphology, I seem so far to be fighting melanoma to something close to a draw…again, largely because of my strong immune system.
People I know who have been around a long time despite nicotine and the alcohol/sugar mix read about melanoma like crazy, develop their own action plans, and direct their own therapeutic paths.
Which leads to the final point. You should do whatever makes you feel like you are fighting the disease. You will do better if you learn more or treat your body better, let alone both at once. And — bid AND — the belief that you are taking some control may actually improve your body's response.
Some of what I am writing is a matter of faith, but it appears to be working fairly well for me (at least so far). Good luck with your fight, and come here often. There are many wonderful people here who are looking to help.
-
- July 24, 2011 at 2:22 am
Hi Steve —
I have dealt with exactly the issues you described. And since my melanoma first appeared in a lymph node with an unknown primary source, I cannot even look back and ask, "What could I have done differently to avoid this in the first place."
Some people on this board smoke cigarettes, drink rum and Coke, and go on forever. Others go macrobiotic (or something close to that) and die within a year.
So you're not totally in control. Some of your outcome will reflect the specific nature of your disease. But I believe that you can affect the outcome by altering diet, increasing exercise, reducing stress, and sleeping better (all factors that improve resistance). Fifteen years ago, I lost weight, started exercising, became more careful about what I ate. My immune system became stronger than ever. And while my tumor has a fairly aggressively morphology, I seem so far to be fighting melanoma to something close to a draw…again, largely because of my strong immune system.
People I know who have been around a long time despite nicotine and the alcohol/sugar mix read about melanoma like crazy, develop their own action plans, and direct their own therapeutic paths.
Which leads to the final point. You should do whatever makes you feel like you are fighting the disease. You will do better if you learn more or treat your body better, let alone both at once. And — bid AND — the belief that you are taking some control may actually improve your body's response.
Some of what I am writing is a matter of faith, but it appears to be working fairly well for me (at least so far). Good luck with your fight, and come here often. There are many wonderful people here who are looking to help.
-
- July 24, 2011 at 2:24 am
We are both stage one, and yes, the stats are in our favor. In September, I will be three years since diagnosis. I can't believe it has been that long now. I believe you are still newly diagnosed, so I know and remember where you are coming from.
I don't think that anyone can really answer that question for you personally though. You do what you feel you need to help put your mind better at ease. I think that is why I stick around here as well. For some reason, it just helps me to deal with it. On the other hand, I can also understand why others do not stay either. It is overwhelming at times.
Me: I do take curcumin, CoQ10, and several other supplements. I also joined the gym and lost 44 pounds, and still exercise now. Even got the wife doing it.
Will any of this help? No one can say for sure. (even the supplements say right on the bottle: not evaluated by FDA not intended to Blah, Blah, Blah) But is sure can't hurt, and the supplements are cheap!
If you feel this can be too much for you at times, perhaps consider some counseling or take a break from this site and web surfing.
Michael 1B
-
- July 24, 2011 at 2:24 am
We are both stage one, and yes, the stats are in our favor. In September, I will be three years since diagnosis. I can't believe it has been that long now. I believe you are still newly diagnosed, so I know and remember where you are coming from.
I don't think that anyone can really answer that question for you personally though. You do what you feel you need to help put your mind better at ease. I think that is why I stick around here as well. For some reason, it just helps me to deal with it. On the other hand, I can also understand why others do not stay either. It is overwhelming at times.
Me: I do take curcumin, CoQ10, and several other supplements. I also joined the gym and lost 44 pounds, and still exercise now. Even got the wife doing it.
Will any of this help? No one can say for sure. (even the supplements say right on the bottle: not evaluated by FDA not intended to Blah, Blah, Blah) But is sure can't hurt, and the supplements are cheap!
If you feel this can be too much for you at times, perhaps consider some counseling or take a break from this site and web surfing.
Michael 1B
-
- July 24, 2011 at 11:11 am
Steve,
All the guys are right about everything they say so I won't repeat a one of them. But I do want to grab hold of "is there really anything that a person can do that can make a significant difference? "
Taking that totally out of context, but, you can choose to make a significant difference with your life. You can choose to do something positive with all your knowledge and journey that can help take a bite out of melanoma. We have no guarantees about life whether cancer is a part of it or not. And, as you know, there are a ton of factors we all deal with and will deal differently with.
So, do what you do have some control over and that is how you respond to this. You can sit around and be no fun or you can choose to put a smile on your face, and make somebody's day. You can control if you become a melanoma advocate of some kind and what kind you become.
There are things you can't control. There are things you can. Learn to tell the difference and then be that significant difference that you want.
Grace and peace,
Carol
-
- July 24, 2011 at 11:11 am
Steve,
All the guys are right about everything they say so I won't repeat a one of them. But I do want to grab hold of "is there really anything that a person can do that can make a significant difference? "
Taking that totally out of context, but, you can choose to make a significant difference with your life. You can choose to do something positive with all your knowledge and journey that can help take a bite out of melanoma. We have no guarantees about life whether cancer is a part of it or not. And, as you know, there are a ton of factors we all deal with and will deal differently with.
So, do what you do have some control over and that is how you respond to this. You can sit around and be no fun or you can choose to put a smile on your face, and make somebody's day. You can control if you become a melanoma advocate of some kind and what kind you become.
There are things you can't control. There are things you can. Learn to tell the difference and then be that significant difference that you want.
Grace and peace,
Carol
-
- July 24, 2011 at 1:04 pm
Hi Steve,
Amen to what others said. I began by reading some books on battling cancer through a healthy lifestyle. Some books I'd recommend are, "Challenge Cancer and Win", "Beating Cancer with Nutrition", "Foods to Fight Cancer", "Anticancer, A New Way of Life", and "Ways to Prevent and Treat Cancer with Natural Medicine". These books have changed my perspective from being a passive patient to an active participant in the process of beating melanoma.
God Bless,
Jim M.
stage 3C
NED: 3 years, 8months
-
- July 24, 2011 at 1:04 pm
Hi Steve,
Amen to what others said. I began by reading some books on battling cancer through a healthy lifestyle. Some books I'd recommend are, "Challenge Cancer and Win", "Beating Cancer with Nutrition", "Foods to Fight Cancer", "Anticancer, A New Way of Life", and "Ways to Prevent and Treat Cancer with Natural Medicine". These books have changed my perspective from being a passive patient to an active participant in the process of beating melanoma.
God Bless,
Jim M.
stage 3C
NED: 3 years, 8months
-
- July 24, 2011 at 1:31 pm
One thing you can definitely do, is to get rechecked often (that requirement in itself isn't exactly liberating if you aren't a fan of doctors), if you stay on top of things and know what is going on, the sooner you will catch any spread or recurrences, the less likely you are to have progression of disease. Trust me, it may suck to go for skin rechecks often, but getting a recurrence when it first shows up is always a good thing, The earlier the better.
-
- July 24, 2011 at 1:31 pm
One thing you can definitely do, is to get rechecked often (that requirement in itself isn't exactly liberating if you aren't a fan of doctors), if you stay on top of things and know what is going on, the sooner you will catch any spread or recurrences, the less likely you are to have progression of disease. Trust me, it may suck to go for skin rechecks often, but getting a recurrence when it first shows up is always a good thing, The earlier the better.
-
- July 24, 2011 at 2:21 pm
Hopefully he will take digital pictures. If he doesn't then have someone else do it! So often I look at something and think that it's changed. I go to my pictures as a reference and see that it hasn't. That being said, if you tend to have moles you will still get new ones and others will change and it doesn't necessarily mean melanoma! So confusing…. Research, be observant and take all of this as a lesson that life is short and to go out and enjoy each day. Don't become consumed by routine in your life.
Linda
-
- July 24, 2011 at 2:21 pm
Hopefully he will take digital pictures. If he doesn't then have someone else do it! So often I look at something and think that it's changed. I go to my pictures as a reference and see that it hasn't. That being said, if you tend to have moles you will still get new ones and others will change and it doesn't necessarily mean melanoma! So confusing…. Research, be observant and take all of this as a lesson that life is short and to go out and enjoy each day. Don't become consumed by routine in your life.
Linda
-
- July 25, 2011 at 3:00 pm
HI Steve, I can totally sympathize with how you are feeling because I felt that way for quite some time after my stage II diagnosis in 2003. After becoming stage IV in 2007 and having a full and durable response to treatment, I can now see that I was really unhappy with more things in my life than the cancer cloud hanging over my head in the begining… What is weird is that I didn't set out to" improve" myself but the end result is that I have. For me, building my yoga practice over the years and finding a studio with friendly people has helped me to feel I have some control over what is going on with my body. For other's it may be partying and socializing with friends that helps one feel that life is being enjoyed fully . I think the main thing is : do whatever keeps you from isolating yourself. Make one small change or comittment to something healthy and/or fun in your life and good things may begin to flow. I am not always positive and I still worry sometimes, but overall, I am happier. Very best of luck to you!
-
- July 25, 2011 at 9:23 pm
Thank you, Nancy. That's so great that you got such a full response from your treatment. You hit the nail on the head when you suggested there are other things in my life besides the cancer that I'm unhappy about. The cancer served as a trigger really to a lot of mid-life issues. Psychologically, I'm doing far worse than I should be doing given my prognosis. I know that my issues are trivial compared to what so many others are dealing with. I think I'll feel better when I get a team in place. The surgical onc I got referred to doesn't return my calls and my original dermatologist acts weird around me, I think because he misdiagnosed me at first. I see a new derm tomorrow and I'm hoping he refers me to a new surgical onc. My family thinks I am cured and wants to move on, but I am not so sure I'm OK yet. I want a SNB, but have to find a surgical onc first.
-
- July 25, 2011 at 9:23 pm
Thank you, Nancy. That's so great that you got such a full response from your treatment. You hit the nail on the head when you suggested there are other things in my life besides the cancer that I'm unhappy about. The cancer served as a trigger really to a lot of mid-life issues. Psychologically, I'm doing far worse than I should be doing given my prognosis. I know that my issues are trivial compared to what so many others are dealing with. I think I'll feel better when I get a team in place. The surgical onc I got referred to doesn't return my calls and my original dermatologist acts weird around me, I think because he misdiagnosed me at first. I see a new derm tomorrow and I'm hoping he refers me to a new surgical onc. My family thinks I am cured and wants to move on, but I am not so sure I'm OK yet. I want a SNB, but have to find a surgical onc first.
-
- July 25, 2011 at 3:00 pm
HI Steve, I can totally sympathize with how you are feeling because I felt that way for quite some time after my stage II diagnosis in 2003. After becoming stage IV in 2007 and having a full and durable response to treatment, I can now see that I was really unhappy with more things in my life than the cancer cloud hanging over my head in the begining… What is weird is that I didn't set out to" improve" myself but the end result is that I have. For me, building my yoga practice over the years and finding a studio with friendly people has helped me to feel I have some control over what is going on with my body. For other's it may be partying and socializing with friends that helps one feel that life is being enjoyed fully . I think the main thing is : do whatever keeps you from isolating yourself. Make one small change or comittment to something healthy and/or fun in your life and good things may begin to flow. I am not always positive and I still worry sometimes, but overall, I am happier. Very best of luck to you!
-
- July 26, 2011 at 6:54 pm
I'm a little late answering this, but here's my take. You have control over a few things: skin exams, personal skin checks, sun safety, and anything "complementary" you want to try. You have no control over melanoma. If you spend your time worrying about things you have no control over (MELANOMA), then melanoma has already won your battle whether it recurs or not. So spend your time controlling what you can, and work hard to let go the rest. Spending time browsing the internet will NOT calm your fear – it will actually make things worse (speaking from years of experience – it's why I'm still here). Schedule your derm appointments and try hard to move on from "studying" the internet. I also have a stage I Yahoo email list that you can join if you want (send me an email). These are all people who have been in your same shoes. We all understand the fear of a cancer diagnosis even while having a good prognosis. It's a strange place to be. In a year from now, you'll be surprised at how little attention you give your melanoma. Give it time, and try to focus on the now, not the "what ifs".
Best wishes,
Janner
Stage I since 1992, 3 MM primaries
-
- July 26, 2011 at 10:11 pm
Thanks, Janner. Moving on is what I really want to do. Unfortunately, my doctor situation has kept me in limbo. I didn't have one I trusted or who gave a damn about me. So today I got a new derm and he is fantastic – knowledgable, capable, compassionate, interested in my well-being. He is having my slides re-evaluated by "his" path guy. My path reports were a little vague. Mitotic > 1. Well, how much greater than 1? I'm going to find out the exact number, which is stressful. Also, the breslow depth of .6mm went to the edge of the sample on the shave biopsy. It's reported as greater than .6mm. But the excise sample pathology came back with a report of no residual melanoma, so my depth stayed at .6mm. HOWEVER, when I saw the excision skin before it went to lab, it had pigmentation on it. I can't believe I would get a path that said clear margins if there was actually melanoma on the sample, but in my mind, naturally ,a terrible mistake has been made. So I'm back to where I was when this all started – waiting for a definitive prognosis – and the fear that I was starting to get past has returned. After we get the path reports sorted, I will likely move on to an SNB. My doctor explained how much harder an SNB is on the face because of the complex drainage pattern. He knows some great surgeons who can do it, though. He's taken charge of my case and is guiding my way through this.He's going to get me an appointment with the best melanoma ocologist in the state, too. I'm very grateful that I've found such a great doctor, but unfortunately it does mean that I still have a ways to go before I can move on and start letting my diagnosis fade into the background of my life.
Much love to everyone here for your support and for your courage in facing this disease.
Steve
-
- July 26, 2011 at 11:54 pm
Steve,
It's good to have another "look" at the pathology. However, something saying <1 or >1 is fairly common on path reports. While it might not satisfy your "need to know", it doesn't mean the pathologist is bad.
It's also quite common to have "no residual melanoma" found on a WLE even if the previous margins were positive. We see it here all the time. It is thought that the biopsy was close to the edge of the lesion and the scar tissue and healing process take care of anything residual. In general, WLE's don't evaluate the tissue as "in depth" as a biopsy. Oh, and just because you see pigment doesn't mean that is melanoma. It could be necrosis from the previous biopsy or even part of an existing nevus that hasn't changed to melanoma – i.e. benign melanocytes. It's the pathology that has to tell the whole answer. Any time you don't have clear depth margins, your final depth will be "at least" the original biopsy depth. There is no way to add any residual depth seen to the original biopsy depth as the tissue samples just don't line up.
In general, it is rare to have a SNB after the WLE. The WLE affects the drainage paths and the sentinel lymph node might change when you remove a lot of tissue. It's obvious that the neck is the drainage basin with a mole on the face, but the sentinel node COULD be different now. As you said, the drainage system there is complex. It's good you're having good surgeons taking care of this procedure if you choose to do the SNB.
I know all this is trying, but it sounds like you're getting good care now and nothing really seems drastically "wrong" in your case even though imaginations can get the best of us at times.
Best wishes,
Janner
-
- July 27, 2011 at 3:52 am
I feel very blessed today because of wonderfully compassionate and knowledgeable people like you, Janner, who have helped me on this board and because I have a new doctor who cares about my outcome. The difference between a doctor who is there for you and one who is itching to get out the door and on to his next patient is so dramatic. My new doctor actually called me at home tonight to give me a rundown on everything he's done since our meeting this afternoon. He's consulted with collegues to identify the best surgeon for my situation. He's lined up a great plastic surgeon in case I need/want one. He's lined up the best melonoma specialist in the state for me. He's getting my slides re-evaluated. And he punctured all the fears that my dark imagination had pumped up. He told me he's going to be my quarterback and will guide me through this. I'm almost in a state of shock over the improvement in the quality of my care. I felt so abandoned and alone before today. I don't think I would have struggled with as much anxiety as I have if I'd had a doctor like this from the beginning. Today I actually felt like my old self again for the first time in many weeks. It was a good day.
Steve
-
- July 27, 2011 at 3:52 am
I feel very blessed today because of wonderfully compassionate and knowledgeable people like you, Janner, who have helped me on this board and because I have a new doctor who cares about my outcome. The difference between a doctor who is there for you and one who is itching to get out the door and on to his next patient is so dramatic. My new doctor actually called me at home tonight to give me a rundown on everything he's done since our meeting this afternoon. He's consulted with collegues to identify the best surgeon for my situation. He's lined up a great plastic surgeon in case I need/want one. He's lined up the best melonoma specialist in the state for me. He's getting my slides re-evaluated. And he punctured all the fears that my dark imagination had pumped up. He told me he's going to be my quarterback and will guide me through this. I'm almost in a state of shock over the improvement in the quality of my care. I felt so abandoned and alone before today. I don't think I would have struggled with as much anxiety as I have if I'd had a doctor like this from the beginning. Today I actually felt like my old self again for the first time in many weeks. It was a good day.
Steve
-
- July 26, 2011 at 11:54 pm
Steve,
It's good to have another "look" at the pathology. However, something saying <1 or >1 is fairly common on path reports. While it might not satisfy your "need to know", it doesn't mean the pathologist is bad.
It's also quite common to have "no residual melanoma" found on a WLE even if the previous margins were positive. We see it here all the time. It is thought that the biopsy was close to the edge of the lesion and the scar tissue and healing process take care of anything residual. In general, WLE's don't evaluate the tissue as "in depth" as a biopsy. Oh, and just because you see pigment doesn't mean that is melanoma. It could be necrosis from the previous biopsy or even part of an existing nevus that hasn't changed to melanoma – i.e. benign melanocytes. It's the pathology that has to tell the whole answer. Any time you don't have clear depth margins, your final depth will be "at least" the original biopsy depth. There is no way to add any residual depth seen to the original biopsy depth as the tissue samples just don't line up.
In general, it is rare to have a SNB after the WLE. The WLE affects the drainage paths and the sentinel lymph node might change when you remove a lot of tissue. It's obvious that the neck is the drainage basin with a mole on the face, but the sentinel node COULD be different now. As you said, the drainage system there is complex. It's good you're having good surgeons taking care of this procedure if you choose to do the SNB.
I know all this is trying, but it sounds like you're getting good care now and nothing really seems drastically "wrong" in your case even though imaginations can get the best of us at times.
Best wishes,
Janner
-
- July 26, 2011 at 10:11 pm
Thanks, Janner. Moving on is what I really want to do. Unfortunately, my doctor situation has kept me in limbo. I didn't have one I trusted or who gave a damn about me. So today I got a new derm and he is fantastic – knowledgable, capable, compassionate, interested in my well-being. He is having my slides re-evaluated by "his" path guy. My path reports were a little vague. Mitotic > 1. Well, how much greater than 1? I'm going to find out the exact number, which is stressful. Also, the breslow depth of .6mm went to the edge of the sample on the shave biopsy. It's reported as greater than .6mm. But the excise sample pathology came back with a report of no residual melanoma, so my depth stayed at .6mm. HOWEVER, when I saw the excision skin before it went to lab, it had pigmentation on it. I can't believe I would get a path that said clear margins if there was actually melanoma on the sample, but in my mind, naturally ,a terrible mistake has been made. So I'm back to where I was when this all started – waiting for a definitive prognosis – and the fear that I was starting to get past has returned. After we get the path reports sorted, I will likely move on to an SNB. My doctor explained how much harder an SNB is on the face because of the complex drainage pattern. He knows some great surgeons who can do it, though. He's taken charge of my case and is guiding my way through this.He's going to get me an appointment with the best melanoma ocologist in the state, too. I'm very grateful that I've found such a great doctor, but unfortunately it does mean that I still have a ways to go before I can move on and start letting my diagnosis fade into the background of my life.
Much love to everyone here for your support and for your courage in facing this disease.
Steve
-
- July 26, 2011 at 6:54 pm
I'm a little late answering this, but here's my take. You have control over a few things: skin exams, personal skin checks, sun safety, and anything "complementary" you want to try. You have no control over melanoma. If you spend your time worrying about things you have no control over (MELANOMA), then melanoma has already won your battle whether it recurs or not. So spend your time controlling what you can, and work hard to let go the rest. Spending time browsing the internet will NOT calm your fear – it will actually make things worse (speaking from years of experience – it's why I'm still here). Schedule your derm appointments and try hard to move on from "studying" the internet. I also have a stage I Yahoo email list that you can join if you want (send me an email). These are all people who have been in your same shoes. We all understand the fear of a cancer diagnosis even while having a good prognosis. It's a strange place to be. In a year from now, you'll be surprised at how little attention you give your melanoma. Give it time, and try to focus on the now, not the "what ifs".
Best wishes,
Janner
Stage I since 1992, 3 MM primaries
-
- You must be logged in to reply to this topic.