› Forums › General Melanoma Community › Surgery or Not
- This topic has 30 replies, 6 voices, and was last updated 14 years, 5 months ago by
JerryfromFauq.
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- July 27, 2011 at 4:59 pm
I was recently diagnosed with Stage IIIA melanoma. I had a lymph node mapping the same time the melamona was removed from my left forearm. A microscopic cluster of melanoma was found in my sentinel node. That node and two others were removed. I still have my remaining lymph nodes under my left forearm. At this time, we do not know if there is any cancer in those remaining nodes. My doctor does not recommend surgery. In her opinion, the chances of melonoma outweigh the risks and negative effects of the surgery.
I was recently diagnosed with Stage IIIA melanoma. I had a lymph node mapping the same time the melamona was removed from my left forearm. A microscopic cluster of melanoma was found in my sentinel node. That node and two others were removed. I still have my remaining lymph nodes under my left forearm. At this time, we do not know if there is any cancer in those remaining nodes. My doctor does not recommend surgery. In her opinion, the chances of melonoma outweigh the risks and negative effects of the surgery. Her recommendation is an ultra sound on the under arm every four months and a PET scan every six months. I've had one of each and so far, so good. I'm just not sure what to do. She feels very confident in this treatment. I believe in her but have to wonder if I should do everything possible to make sure the cancer isn't there and doesn't return. I've adjusted my diet to eliminate the so-called bad foods while drastically increase the "good" foods. I drink green juices, eat lots of garlic, onions, kale, etc. I take an immune boosting multi viatamin along with D and C and drink three cups of green tea a day. Wondering if there is anyone out there with a similar situation? Anyone that had the surgery not knowing if there was any cancer in the remaining lymph nodes and the effects being felt now. I am very positive and optimistic but also want to do whatever I can to watch my beautiful 4 year old grow up.
Thank you
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- July 27, 2011 at 5:11 pm
I am not sure what you mean by saying the negative effects of surgery.The truth is,that surgery so far is the best option in treating melanoma-find it, cut it out.Yes ,there are risks involved as with any other surgery indeed.Bur so far surgery is the best option for early stages melanoma.
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- July 27, 2011 at 5:28 pm
I was told that total removal of the lymph nodes could result is severe swelling of my left arm permently along with drainage issues. The dilema is that we don't know if there is any cancer in the remaining nodes. According to my doctor, there is only a 5% chance.
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- July 27, 2011 at 5:28 pm
I was told that total removal of the lymph nodes could result is severe swelling of my left arm permently along with drainage issues. The dilema is that we don't know if there is any cancer in the remaining nodes. According to my doctor, there is only a 5% chance.
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- July 27, 2011 at 5:11 pm
I am not sure what you mean by saying the negative effects of surgery.The truth is,that surgery so far is the best option in treating melanoma-find it, cut it out.Yes ,there are risks involved as with any other surgery indeed.Bur so far surgery is the best option for early stages melanoma.
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- July 27, 2011 at 5:11 pm
I believe there is a clinical trial doing exactly what you are doing – monitoring remaining nodes by ultrasound in stage IIIA patients with minimal involvement in the sentinel node. However, I haven't seen any results of that trial yet. Most people in your situation don't have melanoma in the other nodes. But the "I know for sure" is still there. Certainly, your doctor's approach has merit as trials are doing this now. But YOU are the one who has to be comfortable with your treatment, not your doctor. LND are very invasive surgeries, but if that would give you peace of mind, then YOU should call the shots. I'm not sure that it has been proven that a LND improves overall survival – something you might want to research. Even having a LND is no guarantee against future spread of the disease. Do what makes YOU comfortable, not your doctor!
Best wishes,
Janner
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- July 27, 2011 at 5:35 pm
I will have to ask about the clinical trial. Thanks for letting me know. I have an appointment with my immunologist next month. Your comment that most people don't have the melanoma is exactly why my doctor has not recommended it. I know that I have to be comfortable. Thatis why I am having such a dilema. At first, I was all about the surgery. How could I not do everyting possible to ensure I can live as long as possible?? I asked myself over and over. But weeks passed and I had a PET which was negative, I had an ultra sound which was negative. And then, at my last appointment, I thought my doctor and I would discuss surgery, but she didn't even bring it up. All she said was "seey ou in four months". She again reiterated her beliefs for treatment. You are also correct that is has not been proven that LND improves overall survival. This would not prevent future spread of the disease. So, do I take the risks for uncertain or unnecessary rewards???
Thanks for your thoughts
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- July 27, 2011 at 5:35 pm
I will have to ask about the clinical trial. Thanks for letting me know. I have an appointment with my immunologist next month. Your comment that most people don't have the melanoma is exactly why my doctor has not recommended it. I know that I have to be comfortable. Thatis why I am having such a dilema. At first, I was all about the surgery. How could I not do everyting possible to ensure I can live as long as possible?? I asked myself over and over. But weeks passed and I had a PET which was negative, I had an ultra sound which was negative. And then, at my last appointment, I thought my doctor and I would discuss surgery, but she didn't even bring it up. All she said was "seey ou in four months". She again reiterated her beliefs for treatment. You are also correct that is has not been proven that LND improves overall survival. This would not prevent future spread of the disease. So, do I take the risks for uncertain or unnecessary rewards???
Thanks for your thoughts
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- July 27, 2011 at 5:11 pm
I believe there is a clinical trial doing exactly what you are doing – monitoring remaining nodes by ultrasound in stage IIIA patients with minimal involvement in the sentinel node. However, I haven't seen any results of that trial yet. Most people in your situation don't have melanoma in the other nodes. But the "I know for sure" is still there. Certainly, your doctor's approach has merit as trials are doing this now. But YOU are the one who has to be comfortable with your treatment, not your doctor. LND are very invasive surgeries, but if that would give you peace of mind, then YOU should call the shots. I'm not sure that it has been proven that a LND improves overall survival – something you might want to research. Even having a LND is no guarantee against future spread of the disease. Do what makes YOU comfortable, not your doctor!
Best wishes,
Janner
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- July 27, 2011 at 5:24 pm
Hi and welcome to the club no one wants to join…the melanoma club. I've been on this site for about 1.5 years and have found lots of encouragement and support but mostly, education. Many of the posters here are extremeley well educated on melanoma, as well as having experienced it in their own lives or the lives of a loved one.
I had a sentinal lymph node biopsy in March of 2010 and it revealed one small tumor. I then had the full lymph node dissection and removed 23 more nodes. The cancer was on my scalp and the sentinal and other nodes removed were in my neck, starting behind my ear and going down and around my neck. After the sentinal node, the next 22 nodes were clear of cancer. The last node removed, the one farthest from my sentinal node, had cancer.
I think that full dissections are a good idea because melanoma can travel to the rest of the body through the lymph system. Once it spreads, you are in stage 4, the last stage. At being 3a, you are already considered to be in an advanced stage. I'm not sure of the statistical chances of the cancer being in other lymph nodes but I personally wouldn't chance it. The side effects of my neck dissection will last a lifetime but I think my lifetime will be longer having done that.
Surgery is the first and most certain melanoma treatment. Chemos and radiation have low success rates.
Is you doctor a melanoma specialist? While I don't think she has to be, it would be best.
I can promise others will jump in. I think you will come to believe ( like many of us) that your best advice often comes from those who have been there, done that.
Nicki, Stage 3b
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- July 27, 2011 at 5:41 pm
thanks for your response Nicki. It sounds as if you are doing well? I was not told that stage 3A is advanced. I was actually told that being a 3A is closer to Stage 2 than stage 3B. Whatever that all may mean. There is no proof that having the full lymph node removal will improve my survival rate or stop the spread of any future cancer. Plus, there is only a 5% chance that any of the remaining nodes have the cancer. But you do bring up a good point that living with the side or negative effects or far better than a possible alternative. Hence my dilema.
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- July 27, 2011 at 5:41 pm
thanks for your response Nicki. It sounds as if you are doing well? I was not told that stage 3A is advanced. I was actually told that being a 3A is closer to Stage 2 than stage 3B. Whatever that all may mean. There is no proof that having the full lymph node removal will improve my survival rate or stop the spread of any future cancer. Plus, there is only a 5% chance that any of the remaining nodes have the cancer. But you do bring up a good point that living with the side or negative effects or far better than a possible alternative. Hence my dilema.
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- July 27, 2011 at 5:24 pm
Hi and welcome to the club no one wants to join…the melanoma club. I've been on this site for about 1.5 years and have found lots of encouragement and support but mostly, education. Many of the posters here are extremeley well educated on melanoma, as well as having experienced it in their own lives or the lives of a loved one.
I had a sentinal lymph node biopsy in March of 2010 and it revealed one small tumor. I then had the full lymph node dissection and removed 23 more nodes. The cancer was on my scalp and the sentinal and other nodes removed were in my neck, starting behind my ear and going down and around my neck. After the sentinal node, the next 22 nodes were clear of cancer. The last node removed, the one farthest from my sentinal node, had cancer.
I think that full dissections are a good idea because melanoma can travel to the rest of the body through the lymph system. Once it spreads, you are in stage 4, the last stage. At being 3a, you are already considered to be in an advanced stage. I'm not sure of the statistical chances of the cancer being in other lymph nodes but I personally wouldn't chance it. The side effects of my neck dissection will last a lifetime but I think my lifetime will be longer having done that.
Surgery is the first and most certain melanoma treatment. Chemos and radiation have low success rates.
Is you doctor a melanoma specialist? While I don't think she has to be, it would be best.
I can promise others will jump in. I think you will come to believe ( like many of us) that your best advice often comes from those who have been there, done that.
Nicki, Stage 3b
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- July 28, 2011 at 2:49 am
I too am 3a, at the time John Wayne Cancer was doing a study of Ultra Sound Vs Surgery. Ultra Sound was Clear but SNB actually come up with Microscopic amounts a cancer in 2 nodes. I was given the same option as a study group. After the SNB I said no thanks I'll take surgery! Rest of nodes were clear but just a cautionary tale. However, the docs there did think the trend was going to be away from complete dissection for 3a.
Good luck,
Mary
Stage 3
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- July 28, 2011 at 2:49 am
I too am 3a, at the time John Wayne Cancer was doing a study of Ultra Sound Vs Surgery. Ultra Sound was Clear but SNB actually come up with Microscopic amounts a cancer in 2 nodes. I was given the same option as a study group. After the SNB I said no thanks I'll take surgery! Rest of nodes were clear but just a cautionary tale. However, the docs there did think the trend was going to be away from complete dissection for 3a.
Good luck,
Mary
Stage 3
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- July 28, 2011 at 6:30 pm
thanks for the response Mary. I'm having a hard time finding anyone in my same situation believe it or not. When did this all occur for you? I just had the ultra. When the doctor removed the remainder of the cancer in my arm, she did the SNB. That is when they found the microscopic cluster in one node. Its funny how I comfort myself by saying it was a microscopic cluster and i"m a stage 3A. Makes me feel better. Anyway, I have the remaining nodes still in me. I just had an ultra and it was clear. My doctor said 7 even 5 years ago the option would have been surgery but its trending away from that. Did you get a second opinion? Are you suffering any negative effects from the full node removal?
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- July 28, 2011 at 6:30 pm
thanks for the response Mary. I'm having a hard time finding anyone in my same situation believe it or not. When did this all occur for you? I just had the ultra. When the doctor removed the remainder of the cancer in my arm, she did the SNB. That is when they found the microscopic cluster in one node. Its funny how I comfort myself by saying it was a microscopic cluster and i"m a stage 3A. Makes me feel better. Anyway, I have the remaining nodes still in me. I just had an ultra and it was clear. My doctor said 7 even 5 years ago the option would have been surgery but its trending away from that. Did you get a second opinion? Are you suffering any negative effects from the full node removal?
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- July 28, 2011 at 5:09 am
The General surgeon that identified my melanoma never checked lymph nodes. Months later I found my on fast growiing monsters. By this time it was to late to worry much about lymph nodes!
However only the ones along the diseased path were removed, not all in the basin.
WHY DO WE HAVE LYMPH NODES?
They are here to catch bad things that shouldn't be spread on thru the lymph channels. I agree to removing all that have melanoma in them and a few that don't. It has seemed to me that a complete removal asks that the cancer cells go to other places in the body before we fiind them. I would rather find mel in a lymph node further up the chain than to find it in the lungs/liver, etc next. As long as a fairly close watch is kept, It makes more sense to me to wait and Watch closely. You should also be keeping watch yourself while not pushing hard enough to irritate the nodes and make them sore and then freak out from the irritation. Vigalence!
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- July 28, 2011 at 5:09 am
The General surgeon that identified my melanoma never checked lymph nodes. Months later I found my on fast growiing monsters. By this time it was to late to worry much about lymph nodes!
However only the ones along the diseased path were removed, not all in the basin.
WHY DO WE HAVE LYMPH NODES?
They are here to catch bad things that shouldn't be spread on thru the lymph channels. I agree to removing all that have melanoma in them and a few that don't. It has seemed to me that a complete removal asks that the cancer cells go to other places in the body before we fiind them. I would rather find mel in a lymph node further up the chain than to find it in the lungs/liver, etc next. As long as a fairly close watch is kept, It makes more sense to me to wait and Watch closely. You should also be keeping watch yourself while not pushing hard enough to irritate the nodes and make them sore and then freak out from the irritation. Vigalence!
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- July 29, 2011 at 1:20 am
I really never thought of it that way. I had no idea that it would be better or even possible to the cancer to go to the lymph nodes before going to another part of my body. I agree that finding something in my lungs, liver, etc is far worse for me and what I have to worry about more now than finding in my nodes. I didnt know nodes are a barrier??
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- July 29, 2011 at 1:20 am
I really never thought of it that way. I had no idea that it would be better or even possible to the cancer to go to the lymph nodes before going to another part of my body. I agree that finding something in my lungs, liver, etc is far worse for me and what I have to worry about more now than finding in my nodes. I didnt know nodes are a barrier??
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- July 29, 2011 at 5:21 am
Melanoma most often follws the lymph path unless it is deep enough to get ino the blood stream. Of course with mlanma there is not any "always". From the lower leg, either the knee or groin lymph nodes are apt to have the mel found before it goes elsewhere. It then tends to work its way through the nodes from the sentinel node. l have never heard them referred to as a brrier as such, but from the progression, I have long questioned removal of the complete node group. In the past couple of years the complete removal question has been raised more often and is under study.
This is one reason that I suspected that my recent breast growth was not melanoma. It didn't follow a "normal" path. But because of mels doing its own thing at times, I wanted it out to be sure. I didn't get hyper, but still felt better when the doc took it out and said, "It's not black." Then the pathologist agreed.
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- July 29, 2011 at 5:21 am
Melanoma most often follws the lymph path unless it is deep enough to get ino the blood stream. Of course with mlanma there is not any "always". From the lower leg, either the knee or groin lymph nodes are apt to have the mel found before it goes elsewhere. It then tends to work its way through the nodes from the sentinel node. l have never heard them referred to as a brrier as such, but from the progression, I have long questioned removal of the complete node group. In the past couple of years the complete removal question has been raised more often and is under study.
This is one reason that I suspected that my recent breast growth was not melanoma. It didn't follow a "normal" path. But because of mels doing its own thing at times, I wanted it out to be sure. I didn't get hyper, but still felt better when the doc took it out and said, "It's not black." Then the pathologist agreed.
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- July 29, 2011 at 7:02 am
Meloma can go anywhere, but most often it follows either the lympn channels, hence the use of SNB's or, if deep enough, may be spread through the blood steam. This is why depth is so importand a factor. Tumors in the lower foot/leg tend to go up the lymph chain to the knee or groin nodes. From the Sentinel Node it then tends to work it way through the group of nodes. As we know nothing is an "ALWAYS" with melanoma. The most common organ metastisis is the lungs, sometimes the liver. I have read that about 40% will have ait metastize to the brain if not stopped before. I have not read that the lymph node are called a barrier to melanoma, but from wht I have seen of the more common progression and the number and location of the lymph nodes involved it has never made sense to me to rmove the complete chain after finding several clear node when following the lyhmp fluid path flow. I never had any idea that we have a lymph system with its own channels, valves, ettc that arry lymph fluid from various placece in the body to a loction near the heart where it finally feeds into the blood stream and is integrated with the blood. The lymph fluid is pumped by our muscles, not having an equivalent device to the heart. This is one reason that total lack of activity is apt to make lympedema worse. Need some activity, but not t oo much. Elevation helps the fluid not have to be pumped towards the heart by ths muscles and lets it flow more naturally.
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- July 29, 2011 at 7:02 am
Meloma can go anywhere, but most often it follows either the lympn channels, hence the use of SNB's or, if deep enough, may be spread through the blood steam. This is why depth is so importand a factor. Tumors in the lower foot/leg tend to go up the lymph chain to the knee or groin nodes. From the Sentinel Node it then tends to work it way through the group of nodes. As we know nothing is an "ALWAYS" with melanoma. The most common organ metastisis is the lungs, sometimes the liver. I have read that about 40% will have ait metastize to the brain if not stopped before. I have not read that the lymph node are called a barrier to melanoma, but from wht I have seen of the more common progression and the number and location of the lymph nodes involved it has never made sense to me to rmove the complete chain after finding several clear node when following the lyhmp fluid path flow. I never had any idea that we have a lymph system with its own channels, valves, ettc that arry lymph fluid from various placece in the body to a loction near the heart where it finally feeds into the blood stream and is integrated with the blood. The lymph fluid is pumped by our muscles, not having an equivalent device to the heart. This is one reason that total lack of activity is apt to make lympedema worse. Need some activity, but not t oo much. Elevation helps the fluid not have to be pumped towards the heart by ths muscles and lets it flow more naturally.
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- August 1, 2011 at 7:13 pm
So you had all of your lymph nodes removed? I"m not sure I follow. I had my sentinel node and two others biospied. The microscopic cluster was found in the sentinel node. My doctor doesn't recommend removing the remaining nodes. She feels its not any advantage to me. I am not saying the lymph nodes are any sort of a barrier. But to me, the way you described them just made me think of them as a barrier. You said something to the effect that you would rather use your nodes as a line of defense. I too never knew the depth and true nature of our lymphatic system.
I"m normally a very nervouse person. I have a young child and want to see her grow up. But for some reason, I'm not rushing to have the surgery. I would just loose it if it turns out that there was something in my nodes and I didn't do anything about it.
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- August 2, 2011 at 5:01 am
No, all my groin lymph node were not removed. The Melanoma was so far advanced from 3 1/2 years of misdiagnosis and then 7 month of slow rolling by the local general surgeon, that by statistics I should be dead. The Surgical and Medical Onc at UVA moved fast when I learned to get on their list and have done wonders for me. Many of my groin lymph nodes were so matted and grown that they were not sure what was lymph nodes and what was soft tissue growths. There was also extra-capsular extensions, so they removed extra soft tissue. The surgeon had sections reviewed by a pathologist as he was operating and went past where any more melanoma was found. A month later x-rays and CT scans found innumerable tumors in my lung`s, I am sure that they were there previously, just to small to show on the scans. Two year later I felt another soft tissue tumor that had zero SUV uptake on PE@T scans. Since I could see that it was fast growing I asked for it's removal. The Oncologist showed it to me upon removal and we agreed that it appeared to be another black melanoma. The pathology report agreed with our inclination. That area has been free from further growth and from any Lymphedema for the two and a half years since then.
I am not in the medical profession and tend to look at things from more of a physical engineering stand point. I have never seen the inside of a lymph node. I do look at them as something that will at least slow down the speed of spread of malignant cells to other locations in the body, if the malignant cells have not entered into the bloodstream.
It seems to me that the Lymphedema would likely be much worse if all nodes in the flow path were removed. As long as some are there, the lymph fluid is more likely to find it's way in a more normal flow.
I will be very interested in what the studies on this subject show.
I do understand where you are coming from as a young mother that wants to be with your children grow up. What this disease can do to disrupt young lives is very bad. Learn (as you are doing) and be self vigilant. i have four childrn and netx month expect my 15th living gramdchild.
I will be praying for you as I do for all afflicted with this disease. May God be merciful for your family.
JerryfromFauq active Stage IV since Feb 2007.
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- August 2, 2011 at 5:01 am
No, all my groin lymph node were not removed. The Melanoma was so far advanced from 3 1/2 years of misdiagnosis and then 7 month of slow rolling by the local general surgeon, that by statistics I should be dead. The Surgical and Medical Onc at UVA moved fast when I learned to get on their list and have done wonders for me. Many of my groin lymph nodes were so matted and grown that they were not sure what was lymph nodes and what was soft tissue growths. There was also extra-capsular extensions, so they removed extra soft tissue. The surgeon had sections reviewed by a pathologist as he was operating and went past where any more melanoma was found. A month later x-rays and CT scans found innumerable tumors in my lung`s, I am sure that they were there previously, just to small to show on the scans. Two year later I felt another soft tissue tumor that had zero SUV uptake on PE@T scans. Since I could see that it was fast growing I asked for it's removal. The Oncologist showed it to me upon removal and we agreed that it appeared to be another black melanoma. The pathology report agreed with our inclination. That area has been free from further growth and from any Lymphedema for the two and a half years since then.
I am not in the medical profession and tend to look at things from more of a physical engineering stand point. I have never seen the inside of a lymph node. I do look at them as something that will at least slow down the speed of spread of malignant cells to other locations in the body, if the malignant cells have not entered into the bloodstream.
It seems to me that the Lymphedema would likely be much worse if all nodes in the flow path were removed. As long as some are there, the lymph fluid is more likely to find it's way in a more normal flow.
I will be very interested in what the studies on this subject show.
I do understand where you are coming from as a young mother that wants to be with your children grow up. What this disease can do to disrupt young lives is very bad. Learn (as you are doing) and be self vigilant. i have four childrn and netx month expect my 15th living gramdchild.
I will be praying for you as I do for all afflicted with this disease. May God be merciful for your family.
JerryfromFauq active Stage IV since Feb 2007.
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- August 1, 2011 at 7:13 pm
So you had all of your lymph nodes removed? I"m not sure I follow. I had my sentinel node and two others biospied. The microscopic cluster was found in the sentinel node. My doctor doesn't recommend removing the remaining nodes. She feels its not any advantage to me. I am not saying the lymph nodes are any sort of a barrier. But to me, the way you described them just made me think of them as a barrier. You said something to the effect that you would rather use your nodes as a line of defense. I too never knew the depth and true nature of our lymphatic system.
I"m normally a very nervouse person. I have a young child and want to see her grow up. But for some reason, I'm not rushing to have the surgery. I would just loose it if it turns out that there was something in my nodes and I didn't do anything about it.
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