Radiation necessary?

Hi,Steve. My name is Becky and I am from Jackson, Ms. I have been stage IV since last October. They found six brain mets at that time, one the size of an egg. I had a craniotomy on the large one and had it safely removed. I had WBR on the other little ones, ending withSTR. AS of my last pet scan, my brain is stable.If I were in your position, i would definitely go forward with radiation, its just too close to the brain.  Melanoma has a mind of its own, it is very unpredictable. The equipment they used on me was called Brainlab. Its supposed to be the latest state of the art. you may want to ask that question. Good luck with whatever you decide. if you have any other questions let me know.

Hi,Steve. My name is Becky and I am from Jackson, Ms. I have been stage IV since last October. They found six brain mets at that time, one the size of an egg. I had a craniotomy on the large one and had it safely removed. I had WBR on the other little ones, ending withSTR. AS of my last pet scan, my brain is stable.If I were in your position, i would definitely go forward with radiation, its just too close to the brain.  Melanoma has a mind of its own, it is very unpredictable. The equipment they used on me was called Brainlab. Its supposed to be the latest state of the art. you may want to ask that question. Good luck with whatever you decide. if you have any other questions let me know.

Hi,Steve. My name is Becky and I am from Jackson, Ms. I have been stage IV since last October. They found six brain mets at that time, one the size of an egg. I had a craniotomy on the large one and had it safely removed. I had WBR on the other little ones, ending withSTR. AS of my last pet scan, my brain is stable.If I were in your position, i would definitely go forward with radiation, its just too close to the brain.  Melanoma has a mind of its own, it is very unpredictable. The equipment they used on me was called Brainlab. Its supposed to be the latest state of the art. you may want to ask that question. Good luck with whatever you decide. if you have any other questions let me know.

Steve,
I had WLE on the back of my head, SNB was negative. I had 5 sessions of radiation to the back of my head. About 2 1/2 years ago. I was also two months in to interferon treatment so I cannot really say how bad the fatigue would have been without interferon. I did lose hair in the area that received the radiation and really has not come back yet. The radiation I received was not to the brain only to the tissue. I opted to do what the doctors suggested and do not have any regrets. I also got a second opinion with a radiologist at UVA medical center. He also recommend radiation treatment. I hope all goes well at your appt.

Scot

Steve,
I had WLE on the back of my head, SNB was negative. I had 5 sessions of radiation to the back of my head. About 2 1/2 years ago. I was also two months in to interferon treatment so I cannot really say how bad the fatigue would have been without interferon. I did lose hair in the area that received the radiation and really has not come back yet. The radiation I received was not to the brain only to the tissue. I opted to do what the doctors suggested and do not have any regrets. I also got a second opinion with a radiologist at UVA medical center. He also recommend radiation treatment. I hope all goes well at your appt.

Scot

Steve,
I had WLE on the back of my head, SNB was negative. I had 5 sessions of radiation to the back of my head. About 2 1/2 years ago. I was also two months in to interferon treatment so I cannot really say how bad the fatigue would have been without interferon. I did lose hair in the area that received the radiation and really has not come back yet. The radiation I received was not to the brain only to the tissue. I opted to do what the doctors suggested and do not have any regrets. I also got a second opinion with a radiologist at UVA medical center. He also recommend radiation treatment. I hope all goes well at your appt.

Scot

Steve, I've posted this before but I will copy it here as it sounds like you are talking about the same area:

My original oncologist, in preparing me for what was coming after surgery, had described a focused radiation treatment with little side effects. I then had the neck nodes (20+) resection done at Moffitt and the surgeon referred me to a radiation center where they described a wider area of radiation and many more treatments. They warned me of a loss of taste buds.  I went back to the original oncologist who referred me to a colleague in his hospital who ended up doing a more focused, higher-dosed treatment with fewer sessions.  I don't remember any side effects and my taste is just fine.  My neck is still stiff but I am sure that is from the surgery. 

I will add now the one side effect is I don't have to shave that side of my neck, helpful because surgery left it uncomfortable to touch. No, no fatigue.  My cancer spread anyway but I don't regret the radiation.   Dan

Steve, I've posted this before but I will copy it here as it sounds like you are talking about the same area:

My original oncologist, in preparing me for what was coming after surgery, had described a focused radiation treatment with little side effects. I then had the neck nodes (20+) resection done at Moffitt and the surgeon referred me to a radiation center where they described a wider area of radiation and many more treatments. They warned me of a loss of taste buds.  I went back to the original oncologist who referred me to a colleague in his hospital who ended up doing a more focused, higher-dosed treatment with fewer sessions.  I don't remember any side effects and my taste is just fine.  My neck is still stiff but I am sure that is from the surgery. 

I will add now the one side effect is I don't have to shave that side of my neck, helpful because surgery left it uncomfortable to touch. No, no fatigue.  My cancer spread anyway but I don't regret the radiation.   Dan

Steve, I've posted this before but I will copy it here as it sounds like you are talking about the same area:

My original oncologist, in preparing me for what was coming after surgery, had described a focused radiation treatment with little side effects. I then had the neck nodes (20+) resection done at Moffitt and the surgeon referred me to a radiation center where they described a wider area of radiation and many more treatments. They warned me of a loss of taste buds.  I went back to the original oncologist who referred me to a colleague in his hospital who ended up doing a more focused, higher-dosed treatment with fewer sessions.  I don't remember any side effects and my taste is just fine.  My neck is still stiff but I am sure that is from the surgery. 

I will add now the one side effect is I don't have to shave that side of my neck, helpful because surgery left it uncomfortable to touch. No, no fatigue.  My cancer spread anyway but I don't regret the radiation.   Dan

Hi Steve,

Glad to hear you are continuing to recover well from the surgery!

As you may remember, my dad's case was similar to yours except that he had a bilateral neck dissection (5 positive nodes total). We received very mixed recommendations regarding radiation. Out of four oncologists, three were "not big fans" of radiation and were not in favor of him doing it. These three were all melanoma specialists. The fourth oncologist (his original oncologist) was willing to do it after the Kaiser tumor board recommended it. Dad elected to start interferon and meet with a new radiation oncologist (he switched insurance in order to see more melanoma specialists) to consider doing radiation after the first month of high dose and before the 11 months of low dose interferon (which is where we are now).

From what I understand, there is no evidence that confirms the definite benefit of radiation, which is why oncologists can be rather mixed on it. We had oncologists cite studies that suggested positive and negatiev benefits. The upshot seems to be that radiation can help prevent a local recurrence but has not been proven to have an impact on overall survival. Depending on the expected negative effect of radiation (stiffness, fatigue, etc) and length of these effects (some can be permanent), a couple oncologists talked to us about quality of life. I remember one said something like "You may want to weigh the certain negative effects of radiation with the possible negative effects of a local recurrence." That's not to say don't do it but was a rather insightful comment for us. We also considered the positive psychological benefits of doing something proactive to try and prevent a local recurrence. Also, as has been discussed here, brain mets would not count as local recurrence — we were told the skull is so thick that any appearance of cancer in the brain would be considered distance spread.

As with much of this new cancer world we find ourselves in, I think the decision to do radiation is personal and may make sense to/for some people but not everyone. Best of luck!

Hi Steve,

Glad to hear you are continuing to recover well from the surgery!

As you may remember, my dad's case was similar to yours except that he had a bilateral neck dissection (5 positive nodes total). We received very mixed recommendations regarding radiation. Out of four oncologists, three were "not big fans" of radiation and were not in favor of him doing it. These three were all melanoma specialists. The fourth oncologist (his original oncologist) was willing to do it after the Kaiser tumor board recommended it. Dad elected to start interferon and meet with a new radiation oncologist (he switched insurance in order to see more melanoma specialists) to consider doing radiation after the first month of high dose and before the 11 months of low dose interferon (which is where we are now).

From what I understand, there is no evidence that confirms the definite benefit of radiation, which is why oncologists can be rather mixed on it. We had oncologists cite studies that suggested positive and negatiev benefits. The upshot seems to be that radiation can help prevent a local recurrence but has not been proven to have an impact on overall survival. Depending on the expected negative effect of radiation (stiffness, fatigue, etc) and length of these effects (some can be permanent), a couple oncologists talked to us about quality of life. I remember one said something like "You may want to weigh the certain negative effects of radiation with the possible negative effects of a local recurrence." That's not to say don't do it but was a rather insightful comment for us. We also considered the positive psychological benefits of doing something proactive to try and prevent a local recurrence. Also, as has been discussed here, brain mets would not count as local recurrence — we were told the skull is so thick that any appearance of cancer in the brain would be considered distance spread.

As with much of this new cancer world we find ourselves in, I think the decision to do radiation is personal and may make sense to/for some people but not everyone. Best of luck!

Hi Steve,

Glad to hear you are continuing to recover well from the surgery!

As you may remember, my dad's case was similar to yours except that he had a bilateral neck dissection (5 positive nodes total). We received very mixed recommendations regarding radiation. Out of four oncologists, three were "not big fans" of radiation and were not in favor of him doing it. These three were all melanoma specialists. The fourth oncologist (his original oncologist) was willing to do it after the Kaiser tumor board recommended it. Dad elected to start interferon and meet with a new radiation oncologist (he switched insurance in order to see more melanoma specialists) to consider doing radiation after the first month of high dose and before the 11 months of low dose interferon (which is where we are now).

From what I understand, there is no evidence that confirms the definite benefit of radiation, which is why oncologists can be rather mixed on it. We had oncologists cite studies that suggested positive and negatiev benefits. The upshot seems to be that radiation can help prevent a local recurrence but has not been proven to have an impact on overall survival. Depending on the expected negative effect of radiation (stiffness, fatigue, etc) and length of these effects (some can be permanent), a couple oncologists talked to us about quality of life. I remember one said something like "You may want to weigh the certain negative effects of radiation with the possible negative effects of a local recurrence." That's not to say don't do it but was a rather insightful comment for us. We also considered the positive psychological benefits of doing something proactive to try and prevent a local recurrence. Also, as has been discussed here, brain mets would not count as local recurrence — we were told the skull is so thick that any appearance of cancer in the brain would be considered distance spread.

As with much of this new cancer world we find ourselves in, I think the decision to do radiation is personal and may make sense to/for some people but not everyone. Best of luck!

Steve – I was diagnosed in January of this year – had neck dissection in mid-January. I saw my local medical and radiation oncologist and the radiation onlcologist suggested focused radiation in neck/shoulder area, medical oncologist recommended Interferon. I decided since this was all new to me I needed a second opinion and went to Mayo clinic where I saw Dr. Markovic and Lisa Kottschade, R.N. After a thorough review of my scans etc they did agree with the local radiation – and referenced an MD Anderson Study that demonstrated a very positive effect on LOCAL reoccurence – can't remember the percentages exactly but without there is a 30% chance of reoccurence – with radiation I believe it was less then 5%.

So, there was then two options of radiation – low fraction for 5 weeks/5 days a week or high fraction for 5 treatments of 2 1/2 weeks. Based on the recommendation from Mayo I chose the shorter duration/higher fraction route. I started on March 11 and finished 9 days ago – on March 25. The side effects: my treatments were at 3:00 in the afternoon – by 6:00 I was wiped out and basically slept until 7:00 the next morning. For me (all people are different) – I had naseau for the next day – but felt pretty decent by the 2nd day after treatment. I missed about 2-4 hours of work after each of the 5 treatments. I did not completely lose my taste – but had a very metallic taste in the back of my mouth. Also have dry mouth – but that is not really that bad. My skin got very red – but only mildly sensitive – no peeling etc. 9 days after treatment and I am feeling very good – full appetite – no throat soreness at all. Start losing my hair on the very bottom of my hairline – abut a 2" x 2" patch (was told this would happen) – but again very minor. 

In short – I would recommend the treatment and would do it again. My radiation oncologist was extremely detailed – spent a lot of time developing the plan to limit the side effects. He said he consulted with someone at MD Anderson to get the best treatment plan – with minimal side effects. As for next steps – Mayo does not perscribe Interferon – instead recommend Leukine. I am starting that treatment for 3 years (14 days on/14 days off) in the next two weeks. Suppose to have minimal side effects and has shown to be very effective.

Good luck to you – it is all a lot to absourb. I will pray for the best for you!

Steve – I was diagnosed in January of this year – had neck dissection in mid-January. I saw my local medical and radiation oncologist and the radiation onlcologist suggested focused radiation in neck/shoulder area, medical oncologist recommended Interferon. I decided since this was all new to me I needed a second opinion and went to Mayo clinic where I saw Dr. Markovic and Lisa Kottschade, R.N. After a thorough review of my scans etc they did agree with the local radiation – and referenced an MD Anderson Study that demonstrated a very positive effect on LOCAL reoccurence – can't remember the percentages exactly but without there is a 30% chance of reoccurence – with radiation I believe it was less then 5%.

So, there was then two options of radiation – low fraction for 5 weeks/5 days a week or high fraction for 5 treatments of 2 1/2 weeks. Based on the recommendation from Mayo I chose the shorter duration/higher fraction route. I started on March 11 and finished 9 days ago – on March 25. The side effects: my treatments were at 3:00 in the afternoon – by 6:00 I was wiped out and basically slept until 7:00 the next morning. For me (all people are different) – I had naseau for the next day – but felt pretty decent by the 2nd day after treatment. I missed about 2-4 hours of work after each of the 5 treatments. I did not completely lose my taste – but had a very metallic taste in the back of my mouth. Also have dry mouth – but that is not really that bad. My skin got very red – but only mildly sensitive – no peeling etc. 9 days after treatment and I am feeling very good – full appetite – no throat soreness at all. Start losing my hair on the very bottom of my hairline – abut a 2" x 2" patch (was told this would happen) – but again very minor. 

In short – I would recommend the treatment and would do it again. My radiation oncologist was extremely detailed – spent a lot of time developing the plan to limit the side effects. He said he consulted with someone at MD Anderson to get the best treatment plan – with minimal side effects. As for next steps – Mayo does not perscribe Interferon – instead recommend Leukine. I am starting that treatment for 3 years (14 days on/14 days off) in the next two weeks. Suppose to have minimal side effects and has shown to be very effective.

Good luck to you – it is all a lot to absourb. I will pray for the best for you!

Steve – I was diagnosed in January of this year – had neck dissection in mid-January. I saw my local medical and radiation oncologist and the radiation onlcologist suggested focused radiation in neck/shoulder area, medical oncologist recommended Interferon. I decided since this was all new to me I needed a second opinion and went to Mayo clinic where I saw Dr. Markovic and Lisa Kottschade, R.N. After a thorough review of my scans etc they did agree with the local radiation – and referenced an MD Anderson Study that demonstrated a very positive effect on LOCAL reoccurence – can't remember the percentages exactly but without there is a 30% chance of reoccurence – with radiation I believe it was less then 5%.

So, there was then two options of radiation – low fraction for 5 weeks/5 days a week or high fraction for 5 treatments of 2 1/2 weeks. Based on the recommendation from Mayo I chose the shorter duration/higher fraction route. I started on March 11 and finished 9 days ago – on March 25. The side effects: my treatments were at 3:00 in the afternoon – by 6:00 I was wiped out and basically slept until 7:00 the next morning. For me (all people are different) – I had naseau for the next day – but felt pretty decent by the 2nd day after treatment. I missed about 2-4 hours of work after each of the 5 treatments. I did not completely lose my taste – but had a very metallic taste in the back of my mouth. Also have dry mouth – but that is not really that bad. My skin got very red – but only mildly sensitive – no peeling etc. 9 days after treatment and I am feeling very good – full appetite – no throat soreness at all. Start losing my hair on the very bottom of my hairline – abut a 2" x 2" patch (was told this would happen) – but again very minor. 

In short – I would recommend the treatment and would do it again. My radiation oncologist was extremely detailed – spent a lot of time developing the plan to limit the side effects. He said he consulted with someone at MD Anderson to get the best treatment plan – with minimal side effects. As for next steps – Mayo does not perscribe Interferon – instead recommend Leukine. I am starting that treatment for 3 years (14 days on/14 days off) in the next two weeks. Suppose to have minimal side effects and has shown to be very effective.

Good luck to you – it is all a lot to absourb. I will pray for the best for you!

Just to throw this into the mix, my father had a tumor removed from his skull in November (metastasized, but the only melanoma site known at that time, and the first notice we had had of it).  The radiation oncologist told him that without radiation, there was a 1 in 3 chance that the cancer would return at that site, and with radiation, a 1 in 6 chance.  (Sorry, no study citations.)  He was told the radiation would have no effect on occurrence at other sites, but of course in his case, the cancer had already metastasized.  He had a short 2-week course of radiation to the site on his head with very minor side effects.  Hair loss that seems permanent so far, slight redness/ dryness to the site, a little fatigue.  No regrets about radiation, no return of the melanoma at that site.

Just to throw this into the mix, my father had a tumor removed from his skull in November (metastasized, but the only melanoma site known at that time, and the first notice we had had of it).  The radiation oncologist told him that without radiation, there was a 1 in 3 chance that the cancer would return at that site, and with radiation, a 1 in 6 chance.  (Sorry, no study citations.)  He was told the radiation would have no effect on occurrence at other sites, but of course in his case, the cancer had already metastasized.  He had a short 2-week course of radiation to the site on his head with very minor side effects.  Hair loss that seems permanent so far, slight redness/ dryness to the site, a little fatigue.  No regrets about radiation, no return of the melanoma at that site.

Just to throw this into the mix, my father had a tumor removed from his skull in November (metastasized, but the only melanoma site known at that time, and the first notice we had had of it).  The radiation oncologist told him that without radiation, there was a 1 in 3 chance that the cancer would return at that site, and with radiation, a 1 in 6 chance.  (Sorry, no study citations.)  He was told the radiation would have no effect on occurrence at other sites, but of course in his case, the cancer had already metastasized.  He had a short 2-week course of radiation to the site on his head with very minor side effects.  Hair loss that seems permanent so far, slight redness/ dryness to the site, a little fatigue.  No regrets about radiation, no return of the melanoma at that site.