› Forums › General Melanoma Community › Question from a newbie
- This topic has 27 replies, 8 voices, and was last updated 12 years, 1 month ago by
LibbyinVA.
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- February 11, 2013 at 4:53 am
My husband is the melanoma patient. He's had two primaries on his head (one on his scalp, the other on his jawline). Both were Stage 1. In the past six months, he has had many precancerous lesions frozen, plus three basal cell cancers (all requiring Mohs surgery and two considered abnormal basal cell) and one squamous cell. Last week he had three more biopsies. We've switched dermatologists because we didn't think his previous one was very thorough in body checks, plus he wouldn't answer questions to our satisfaction. Here's the latest issue. Last week I pointed out a red irritated spot on my husband's neck. I told the derm that this spot never goes away and flares up from time to time. Not long ago it almost got the appearance of a boil, but then went away (leaving just the red mark for the derm to see). The derm just acted like it was a little irritation and not to worry. Well, today the "boil" is back. Does melanoma ever present this way? I guess I'm specifically worried about a melanoma in transit or some sort of metasticizing, especially since it is on his neck near his lymph glands. My husband is so tired of being poked, prodded, and being worried about biopsies that I don't think I'm going to be able to convince him to go back to the doctor while the "boil" is present to have him look at it. (He will say "the doc didn't seem concerned". But as one who has been through years of struggling to get diagnosed with a rare disease … Cushing's … I know that we have to be our own advocates with these doctors.)
Am I just working myself into a frenzy for no reason?
- Replies
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- February 11, 2013 at 12:49 pm
I have never heard of any type of cancer that just "comes and goes". Infections do that, but cancer does not. I suggest that you do 2 things: 1) take photographs of the spot periodically to document how and when it changes, and 2) assume for the time being that it is a boil and treat it with antibiotics (systemic or topical) and see what happepns. Don't drive yourself crazy worrying about this unless and until you really have to.
I do wonder why your husband has so many skin cancers. Perhaps he has a genetic predisposition to skin cancers like Janner does. I seem to remember a clinical trial being conducted to identify genes associated with multiple skin cancers. That might be a good way for your husband to get really thorough skin checks over a long period of time.
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- February 11, 2013 at 12:49 pm
I have never heard of any type of cancer that just "comes and goes". Infections do that, but cancer does not. I suggest that you do 2 things: 1) take photographs of the spot periodically to document how and when it changes, and 2) assume for the time being that it is a boil and treat it with antibiotics (systemic or topical) and see what happepns. Don't drive yourself crazy worrying about this unless and until you really have to.
I do wonder why your husband has so many skin cancers. Perhaps he has a genetic predisposition to skin cancers like Janner does. I seem to remember a clinical trial being conducted to identify genes associated with multiple skin cancers. That might be a good way for your husband to get really thorough skin checks over a long period of time.
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- February 11, 2013 at 12:49 pm
I have never heard of any type of cancer that just "comes and goes". Infections do that, but cancer does not. I suggest that you do 2 things: 1) take photographs of the spot periodically to document how and when it changes, and 2) assume for the time being that it is a boil and treat it with antibiotics (systemic or topical) and see what happepns. Don't drive yourself crazy worrying about this unless and until you really have to.
I do wonder why your husband has so many skin cancers. Perhaps he has a genetic predisposition to skin cancers like Janner does. I seem to remember a clinical trial being conducted to identify genes associated with multiple skin cancers. That might be a good way for your husband to get really thorough skin checks over a long period of time.
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- February 11, 2013 at 3:45 pm
I too have never heard of cancer that comes and goes. I completely understand your concern, based on everything that has happened. It would be great if your husband would take photos and keep things documented, but it sounds like that will not happen (my husband relies on me for all things medical because he thinks I know more, but I wish he would take more "ownership" of his medical issues as I might know more, but it is only relatively speaking as compared to him, besides, I am not a physician or trained caregiver).
So, back to your question, I agree with POW…it is always best to stay vigilant and make your physician respond to your concerns/questions. If they don't, it is time to go doctor shopping!
Hope this helps…melanoma is scary and sometimes it gets to you. Come here to the board as often as you like. It is filled with people who care and many of them have a wealth of knowledge to share.
Take care!
Libby
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- February 11, 2013 at 3:45 pm
I too have never heard of cancer that comes and goes. I completely understand your concern, based on everything that has happened. It would be great if your husband would take photos and keep things documented, but it sounds like that will not happen (my husband relies on me for all things medical because he thinks I know more, but I wish he would take more "ownership" of his medical issues as I might know more, but it is only relatively speaking as compared to him, besides, I am not a physician or trained caregiver).
So, back to your question, I agree with POW…it is always best to stay vigilant and make your physician respond to your concerns/questions. If they don't, it is time to go doctor shopping!
Hope this helps…melanoma is scary and sometimes it gets to you. Come here to the board as often as you like. It is filled with people who care and many of them have a wealth of knowledge to share.
Take care!
Libby
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- February 11, 2013 at 3:45 pm
I too have never heard of cancer that comes and goes. I completely understand your concern, based on everything that has happened. It would be great if your husband would take photos and keep things documented, but it sounds like that will not happen (my husband relies on me for all things medical because he thinks I know more, but I wish he would take more "ownership" of his medical issues as I might know more, but it is only relatively speaking as compared to him, besides, I am not a physician or trained caregiver).
So, back to your question, I agree with POW…it is always best to stay vigilant and make your physician respond to your concerns/questions. If they don't, it is time to go doctor shopping!
Hope this helps…melanoma is scary and sometimes it gets to you. Come here to the board as often as you like. It is filled with people who care and many of them have a wealth of knowledge to share.
Take care!
Libby
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- February 11, 2013 at 4:16 pm
Sometimes, BCC and SCC will appear to start to heal, but then they erupt again. The lesion never goes away but at times may look worse or better. This is why I suggested (on the Off Topic board) that these cancers are more likely than melanoma for the lesion described. I haven't really heard of melanoma presenting this way. But without a biopsy, there is no way to know for sure what you are dealing with.
Janner
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- February 11, 2013 at 4:16 pm
Sometimes, BCC and SCC will appear to start to heal, but then they erupt again. The lesion never goes away but at times may look worse or better. This is why I suggested (on the Off Topic board) that these cancers are more likely than melanoma for the lesion described. I haven't really heard of melanoma presenting this way. But without a biopsy, there is no way to know for sure what you are dealing with.
Janner
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- February 11, 2013 at 4:16 pm
Sometimes, BCC and SCC will appear to start to heal, but then they erupt again. The lesion never goes away but at times may look worse or better. This is why I suggested (on the Off Topic board) that these cancers are more likely than melanoma for the lesion described. I haven't really heard of melanoma presenting this way. But without a biopsy, there is no way to know for sure what you are dealing with.
Janner
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- February 11, 2013 at 5:44 pm
Thanks, all. I guess I'm just nervous because I am the one who found both of his melanomas. The derm almost didn't biopsy the one on his jaw, saying "oh that's nothing". I found the one on his head — the derm hadn't been doing scalp checks. Then the two "atypical basal cell" carcinomas worried me … they were worried about nodular melanoma or Merkel cell. The pathology came back as "recurrent BCC". I questioned the derm about this because DH had never had any previous cancers in those spots — never anything on his arm. And now two "atypical", "recurrent" pop up within three weeks of each other? None of it makes sense to me. I'll try not to make mountains out of molehills, though.
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- February 11, 2013 at 11:06 pm
You husband sounds a lot like me. I have had a bunch of BCC and some SC removed mostly from my face,legs and trunk. None on my arms. More aytypical stuff than I can count! One fast growing one from the top of my head removed that looked more loke a pink mole and scared the heck out of my Onc, in fact he scheduled me for surgery the next day! Whew, just BCC!!!! But a wide excision was still done and boy do I have a cute hair cut now! The surgical Onc was pretty sure it was BCC and was not at all surprised at the location, neither was my Derm when I went back to see him. So I'm a little surprised to hear your Derm's comment.
I read somewhere a study that said that men like roofers were a lot less likely to get melanoma than men who were out in the sun for recreation. I think maybe that goes alongs with why we tend to see less Mel in the area that are regularly exposed to sun like arms. I've gotten used to the "connect the dot look", except on the face. Yes, I was a sun worshiper in my youth. The odd part is the melanoma showed up on my waist line on my side where it got little or no sun exposure ..go figure.
When I was first dx I saw the derm every 3 months, now I am at every 6 months or when I feel the need. I try to wait 6 months but often don't make it. I am not the panic type at all but I know this is one thing I don't want to play around with.
You will get better as time goes on. I think it's probably harder when it's someone you love, especially a man because they can sometimes be so bull headed about taking care of themselves…..sorry guys!
Mary
Stage 3
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- February 11, 2013 at 11:06 pm
You husband sounds a lot like me. I have had a bunch of BCC and some SC removed mostly from my face,legs and trunk. None on my arms. More aytypical stuff than I can count! One fast growing one from the top of my head removed that looked more loke a pink mole and scared the heck out of my Onc, in fact he scheduled me for surgery the next day! Whew, just BCC!!!! But a wide excision was still done and boy do I have a cute hair cut now! The surgical Onc was pretty sure it was BCC and was not at all surprised at the location, neither was my Derm when I went back to see him. So I'm a little surprised to hear your Derm's comment.
I read somewhere a study that said that men like roofers were a lot less likely to get melanoma than men who were out in the sun for recreation. I think maybe that goes alongs with why we tend to see less Mel in the area that are regularly exposed to sun like arms. I've gotten used to the "connect the dot look", except on the face. Yes, I was a sun worshiper in my youth. The odd part is the melanoma showed up on my waist line on my side where it got little or no sun exposure ..go figure.
When I was first dx I saw the derm every 3 months, now I am at every 6 months or when I feel the need. I try to wait 6 months but often don't make it. I am not the panic type at all but I know this is one thing I don't want to play around with.
You will get better as time goes on. I think it's probably harder when it's someone you love, especially a man because they can sometimes be so bull headed about taking care of themselves…..sorry guys!
Mary
Stage 3
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- February 11, 2013 at 11:06 pm
You husband sounds a lot like me. I have had a bunch of BCC and some SC removed mostly from my face,legs and trunk. None on my arms. More aytypical stuff than I can count! One fast growing one from the top of my head removed that looked more loke a pink mole and scared the heck out of my Onc, in fact he scheduled me for surgery the next day! Whew, just BCC!!!! But a wide excision was still done and boy do I have a cute hair cut now! The surgical Onc was pretty sure it was BCC and was not at all surprised at the location, neither was my Derm when I went back to see him. So I'm a little surprised to hear your Derm's comment.
I read somewhere a study that said that men like roofers were a lot less likely to get melanoma than men who were out in the sun for recreation. I think maybe that goes alongs with why we tend to see less Mel in the area that are regularly exposed to sun like arms. I've gotten used to the "connect the dot look", except on the face. Yes, I was a sun worshiper in my youth. The odd part is the melanoma showed up on my waist line on my side where it got little or no sun exposure ..go figure.
When I was first dx I saw the derm every 3 months, now I am at every 6 months or when I feel the need. I try to wait 6 months but often don't make it. I am not the panic type at all but I know this is one thing I don't want to play around with.
You will get better as time goes on. I think it's probably harder when it's someone you love, especially a man because they can sometimes be so bull headed about taking care of themselves…..sorry guys!
Mary
Stage 3
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- February 11, 2013 at 5:44 pm
Thanks, all. I guess I'm just nervous because I am the one who found both of his melanomas. The derm almost didn't biopsy the one on his jaw, saying "oh that's nothing". I found the one on his head — the derm hadn't been doing scalp checks. Then the two "atypical basal cell" carcinomas worried me … they were worried about nodular melanoma or Merkel cell. The pathology came back as "recurrent BCC". I questioned the derm about this because DH had never had any previous cancers in those spots — never anything on his arm. And now two "atypical", "recurrent" pop up within three weeks of each other? None of it makes sense to me. I'll try not to make mountains out of molehills, though.
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- February 11, 2013 at 5:44 pm
Thanks, all. I guess I'm just nervous because I am the one who found both of his melanomas. The derm almost didn't biopsy the one on his jaw, saying "oh that's nothing". I found the one on his head — the derm hadn't been doing scalp checks. Then the two "atypical basal cell" carcinomas worried me … they were worried about nodular melanoma or Merkel cell. The pathology came back as "recurrent BCC". I questioned the derm about this because DH had never had any previous cancers in those spots — never anything on his arm. And now two "atypical", "recurrent" pop up within three weeks of each other? None of it makes sense to me. I'll try not to make mountains out of molehills, though.
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- February 11, 2013 at 6:38 pm
I have had two stage 1 melanomas, and dozens of squamous cell carcinomas removed from my poor skin. I have literally hundreds of moles. Periodically, I have the "boil" thing you talk about come and go in various places. My husband always freaks out and wants me to run instantly to the dermo, but I have learned from this board to take a photo and put it on my calendar to look at it again in six weeks. Almost always, the thing goes away without so much as an explanation of itself. Those that persist are biopsied–always negative. Melanoma doesn't present like that on me.
The dermo also gave me an ointment to put on little things that are slow to heal, and it helps to heal them right up with consistent application.
Be persistent with your observations and stay vigilant, but calm.
Love,
Liz.
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- February 11, 2013 at 6:38 pm
I have had two stage 1 melanomas, and dozens of squamous cell carcinomas removed from my poor skin. I have literally hundreds of moles. Periodically, I have the "boil" thing you talk about come and go in various places. My husband always freaks out and wants me to run instantly to the dermo, but I have learned from this board to take a photo and put it on my calendar to look at it again in six weeks. Almost always, the thing goes away without so much as an explanation of itself. Those that persist are biopsied–always negative. Melanoma doesn't present like that on me.
The dermo also gave me an ointment to put on little things that are slow to heal, and it helps to heal them right up with consistent application.
Be persistent with your observations and stay vigilant, but calm.
Love,
Liz.
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- February 11, 2013 at 6:38 pm
I have had two stage 1 melanomas, and dozens of squamous cell carcinomas removed from my poor skin. I have literally hundreds of moles. Periodically, I have the "boil" thing you talk about come and go in various places. My husband always freaks out and wants me to run instantly to the dermo, but I have learned from this board to take a photo and put it on my calendar to look at it again in six weeks. Almost always, the thing goes away without so much as an explanation of itself. Those that persist are biopsied–always negative. Melanoma doesn't present like that on me.
The dermo also gave me an ointment to put on little things that are slow to heal, and it helps to heal them right up with consistent application.
Be persistent with your observations and stay vigilant, but calm.
Love,
Liz.
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- February 12, 2013 at 9:13 pm
Hi,
My husband was dx in October 2011 with spindle cell melanoma with neural involvement.
He has had numerous surgeries with skin grafts. All were on the head. Prior to the last scheduled surgery (Sept 2012) he had a whole body Pet/CT scan which showed mets to the lungs. The surgery was canceled. He went on Yervoy for 4 treatments (std) from Oct. 2012 to Dec. 2012. Last Ct showed progression of the disease. He signed on for a clinical trial at UCLA but had to cancel because of another medical problem. We have another appt at UCLA to see if he is still eligible for the clinical trial. The drug is referred to as MK3475 and it is in phase II. The oncologist refers to it as "super Yervoy" and he is very enthusiastic about the results he is getting.
The first melanoma was a reddish infected looking "boil" and it was deep. Bad!!!
A couple of the melanomas presented themselves as "pink warts" very innocent looking but vicious.
The lymphnodes were always negative and the surgeon always got clear margins during surgery. The cancer cells are using the nerve pathways to move around thus the clear margins. My husband has a couple of enlarged lymphnodes on the left side just below the ear, and enlarged lymphnodes in the neck on the right side. The Yervoy did reduce the size of the lymphnodes.
I will not go into all teh Mohs procedures my husband has had during 2011 and 2012.
Every person is different. As patients and spouses we need to be our own advocates. It you are not confident that your doctor is doing his outmost for the well being of the patient then by all means find another doctor.
I am the one asking most of the questions at the drs appts, I make all the appts etc. I know where you are coming from, it is a full time job. Good luck and keep writing on this post.
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- February 12, 2013 at 9:13 pm
Hi,
My husband was dx in October 2011 with spindle cell melanoma with neural involvement.
He has had numerous surgeries with skin grafts. All were on the head. Prior to the last scheduled surgery (Sept 2012) he had a whole body Pet/CT scan which showed mets to the lungs. The surgery was canceled. He went on Yervoy for 4 treatments (std) from Oct. 2012 to Dec. 2012. Last Ct showed progression of the disease. He signed on for a clinical trial at UCLA but had to cancel because of another medical problem. We have another appt at UCLA to see if he is still eligible for the clinical trial. The drug is referred to as MK3475 and it is in phase II. The oncologist refers to it as "super Yervoy" and he is very enthusiastic about the results he is getting.
The first melanoma was a reddish infected looking "boil" and it was deep. Bad!!!
A couple of the melanomas presented themselves as "pink warts" very innocent looking but vicious.
The lymphnodes were always negative and the surgeon always got clear margins during surgery. The cancer cells are using the nerve pathways to move around thus the clear margins. My husband has a couple of enlarged lymphnodes on the left side just below the ear, and enlarged lymphnodes in the neck on the right side. The Yervoy did reduce the size of the lymphnodes.
I will not go into all teh Mohs procedures my husband has had during 2011 and 2012.
Every person is different. As patients and spouses we need to be our own advocates. It you are not confident that your doctor is doing his outmost for the well being of the patient then by all means find another doctor.
I am the one asking most of the questions at the drs appts, I make all the appts etc. I know where you are coming from, it is a full time job. Good luck and keep writing on this post.
-
- February 12, 2013 at 9:13 pm
Hi,
My husband was dx in October 2011 with spindle cell melanoma with neural involvement.
He has had numerous surgeries with skin grafts. All were on the head. Prior to the last scheduled surgery (Sept 2012) he had a whole body Pet/CT scan which showed mets to the lungs. The surgery was canceled. He went on Yervoy for 4 treatments (std) from Oct. 2012 to Dec. 2012. Last Ct showed progression of the disease. He signed on for a clinical trial at UCLA but had to cancel because of another medical problem. We have another appt at UCLA to see if he is still eligible for the clinical trial. The drug is referred to as MK3475 and it is in phase II. The oncologist refers to it as "super Yervoy" and he is very enthusiastic about the results he is getting.
The first melanoma was a reddish infected looking "boil" and it was deep. Bad!!!
A couple of the melanomas presented themselves as "pink warts" very innocent looking but vicious.
The lymphnodes were always negative and the surgeon always got clear margins during surgery. The cancer cells are using the nerve pathways to move around thus the clear margins. My husband has a couple of enlarged lymphnodes on the left side just below the ear, and enlarged lymphnodes in the neck on the right side. The Yervoy did reduce the size of the lymphnodes.
I will not go into all teh Mohs procedures my husband has had during 2011 and 2012.
Every person is different. As patients and spouses we need to be our own advocates. It you are not confident that your doctor is doing his outmost for the well being of the patient then by all means find another doctor.
I am the one asking most of the questions at the drs appts, I make all the appts etc. I know where you are coming from, it is a full time job. Good luck and keep writing on this post.
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- February 13, 2013 at 7:58 pm
Hi, my fiance had a mole removed in June of 2012. With a large excision to remove possible remaining cancer cells and two lymp nodes removed he was given the all clear.
Now, 7 months later, it has traveled to MANY organs and we are awaiting treatment. He didn't have other spots come up, but he had a very bad flu, or so we thought, and a cough that just wouldn't go away. His oncologist follow ups always were good. I wish I would have been more aggresive with getting him in sooner and insisting that they test more. I will never forgive myself for that. If I had been a better advocate, the cancer would not have gotten so bad.
So, I say to you, take him in to the doctor! Insist they run more tests. If that doctor wont, find one that will!! That little voice in your head is there for a reason, listen to it!!! I should have listened to it sooner. Maybe my insisting upon you will help your husband get the proper help and that will be some good that comes of this.
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- February 13, 2013 at 7:58 pm
Hi, my fiance had a mole removed in June of 2012. With a large excision to remove possible remaining cancer cells and two lymp nodes removed he was given the all clear.
Now, 7 months later, it has traveled to MANY organs and we are awaiting treatment. He didn't have other spots come up, but he had a very bad flu, or so we thought, and a cough that just wouldn't go away. His oncologist follow ups always were good. I wish I would have been more aggresive with getting him in sooner and insisting that they test more. I will never forgive myself for that. If I had been a better advocate, the cancer would not have gotten so bad.
So, I say to you, take him in to the doctor! Insist they run more tests. If that doctor wont, find one that will!! That little voice in your head is there for a reason, listen to it!!! I should have listened to it sooner. Maybe my insisting upon you will help your husband get the proper help and that will be some good that comes of this.
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- February 14, 2013 at 5:30 pm
I am so sorry to hear your story and hope with time that will not blame yourself. Melanoma is sneaky and even with lots of vigilance, it just "shows up" unannounced. You sound like an excellent advocate and I wish your fiance all the best in this battle. Hang tough, on the "beast" that is, not yourself.
Sharing your story will do much good for others…this board is such a great place for both support and information. It was a lifeline for me when first dx'ed. Keep us posted and come here anytime you need anything.
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- February 14, 2013 at 5:30 pm
I am so sorry to hear your story and hope with time that will not blame yourself. Melanoma is sneaky and even with lots of vigilance, it just "shows up" unannounced. You sound like an excellent advocate and I wish your fiance all the best in this battle. Hang tough, on the "beast" that is, not yourself.
Sharing your story will do much good for others…this board is such a great place for both support and information. It was a lifeline for me when first dx'ed. Keep us posted and come here anytime you need anything.
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- February 14, 2013 at 5:30 pm
I am so sorry to hear your story and hope with time that will not blame yourself. Melanoma is sneaky and even with lots of vigilance, it just "shows up" unannounced. You sound like an excellent advocate and I wish your fiance all the best in this battle. Hang tough, on the "beast" that is, not yourself.
Sharing your story will do much good for others…this board is such a great place for both support and information. It was a lifeline for me when first dx'ed. Keep us posted and come here anytime you need anything.
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- February 13, 2013 at 7:58 pm
Hi, my fiance had a mole removed in June of 2012. With a large excision to remove possible remaining cancer cells and two lymp nodes removed he was given the all clear.
Now, 7 months later, it has traveled to MANY organs and we are awaiting treatment. He didn't have other spots come up, but he had a very bad flu, or so we thought, and a cough that just wouldn't go away. His oncologist follow ups always were good. I wish I would have been more aggresive with getting him in sooner and insisting that they test more. I will never forgive myself for that. If I had been a better advocate, the cancer would not have gotten so bad.
So, I say to you, take him in to the doctor! Insist they run more tests. If that doctor wont, find one that will!! That little voice in your head is there for a reason, listen to it!!! I should have listened to it sooner. Maybe my insisting upon you will help your husband get the proper help and that will be some good that comes of this.
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