› Forums › General Melanoma Community › need some more info about Nodular melanoma
- This topic has 69 replies, 6 voices, and was last updated 12 years, 5 months ago by
Karolina.
- Post
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- November 4, 2011 at 11:47 am
hi,
hi,
My friend has found out that she has a nodular melanoma. Unfortunately I did not find a lot of info about this unusual type of melanoma… most of the information available is very general and probably more relevant for any other type of melanoma… i am specifically looking for information regarding the prognosis of nodular melanoma, if within a month a lump has grown back on my friend's neck and was 200mm big! however, this 200mm does not refer to how deep it grown back. i don't know how deep it grown back because the doctor who looks after my friend is not very precise!!!
I just want to find out some more details information as to how nodular melanoma needs to be treated and more importantly, what is the suggested timescale for all treatments.
I would be very grateful for any additional information.
Best to all
Karolina
- Replies
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- November 4, 2011 at 1:07 pm
Karolina, welcome to our forum. I encourage you to fill in some info on the profile page that you may wish to create for your friend. This will help us to help you better.
The depth of the primary tumour is the best indicator of prognosis. Would your friend have a copy of the pathology report? I feel that nodular melanoma tends to be more aggressive than other types, although nothing is certain with this cancer.
Therefore, it is important that your friend is treated by a competent oncologist who should ideally be a melanoma specialist.
Hope this helps.
Frank from Australia
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- November 4, 2011 at 1:07 pm
Karolina, welcome to our forum. I encourage you to fill in some info on the profile page that you may wish to create for your friend. This will help us to help you better.
The depth of the primary tumour is the best indicator of prognosis. Would your friend have a copy of the pathology report? I feel that nodular melanoma tends to be more aggressive than other types, although nothing is certain with this cancer.
Therefore, it is important that your friend is treated by a competent oncologist who should ideally be a melanoma specialist.
Hope this helps.
Frank from Australia
-
- November 4, 2011 at 1:24 pm
hi,
thank you very much for a quick response. Unfortunately, as mentioned, my friend do not have any results as yet… i find it very strange as she has 3 visits already, including 2 tests and one operation and she still is not told anything… all what she is told is, we need some more test, we need some more tests….
she had a surgery on the lump she had (the second one) this wednesday, 30th nov, and they also have cut something from her lymph. She now will be seen by her consultant next Thursday! The problem is that my friend is really concerned and she doesn’t want to as questions… she only takes what she is told. I understand her uncertainty BUT I can not understand why she is now asking any questions.
I just wanted to find out:
- what does it really mean when a lump has grown back within a month and was as big as an egg in a first place and the second one was not much smaller.
- Whether there are a standard procedures to follow in this scenario
- Whether a week of waiting is an acceptable timescale in this case.
k.
-
- November 4, 2011 at 1:34 pm
I see from your profile that you are in England. There are several people here from England, so maybe they will see your post soon.
Where is she being seen? As Frank said, nodular tends to be more agressive so a oncologist, prefereberly melanoma onc should be seen.
It seems that your frined may have had a WLE/SNB wide local excision/Sentimnel node biopsy and perhaps they are waiting on results. She will most likely be stage three if the node or nodes come back positive and/or possibly even stage four based on what you have said so far about the second lump.
This is quite serious, your friend needs to be proactive and start asking questions. She is her own best advocate and she needs to know what is going on and become better aware of any and all options..
Good luck.
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- November 4, 2011 at 2:17 pm
hi,
thank you for your interest. I am not sure where she has been seen. We live in South East England and I understand that she is under control of the local hospital…
what WLE/SNB is? Can you advise what treatment she should expect if she is in stage 3 or 4, as you said? Again, I am not sure what tests they normally do in this circumstance and because my friend rather wait till they decide to tell her anything then ask herself I am just concerned. Therefore, I would appreciate some guidance from people as to what we could expect
k.
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- November 4, 2011 at 2:17 pm
hi,
thank you for your interest. I am not sure where she has been seen. We live in South East England and I understand that she is under control of the local hospital…
what WLE/SNB is? Can you advise what treatment she should expect if she is in stage 3 or 4, as you said? Again, I am not sure what tests they normally do in this circumstance and because my friend rather wait till they decide to tell her anything then ask herself I am just concerned. Therefore, I would appreciate some guidance from people as to what we could expect
k.
-
- November 4, 2011 at 2:17 pm
hi,
thank you for your interest. I am not sure where she has been seen. We live in South East England and I understand that she is under control of the local hospital…
what WLE/SNB is? Can you advise what treatment she should expect if she is in stage 3 or 4, as you said? Again, I am not sure what tests they normally do in this circumstance and because my friend rather wait till they decide to tell her anything then ask herself I am just concerned. Therefore, I would appreciate some guidance from people as to what we could expect
k.
-
- November 4, 2011 at 2:52 pm
A WLE is what is called a wide local excision. It is what is done around the mole to make sure all margins (side and depth) are clear of melanoma. A SNB is what is called a Sentinel node biopsy. The person will be injected with dye, and depending on which node it goes to, that lymph node will be removed and checked for melanoma (cancer) cells. Depending on the results of these, a stage will be given.
You also mention a lump has grown back. Has that been tested (biopsied) yet?
Then , depending on the staging, treatment options will be discussed.
If stage three: Interferon, watch and wait or possibly a clinical trial.
If stage four, there are several options as well such as interleukin-2, , BRAF inhibitors if a tumor tests positive or a clinical trial as well as other options such as Ipilimumab (Yervoy) which should be discussed if available.
If your friend has trouble making herself heard, or understanding ,she should bring a family member or at least a recorder so she better understands her options.
Let us know how it is going concerning her staging, and someone will help you further.
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- November 4, 2011 at 2:52 pm
A WLE is what is called a wide local excision. It is what is done around the mole to make sure all margins (side and depth) are clear of melanoma. A SNB is what is called a Sentinel node biopsy. The person will be injected with dye, and depending on which node it goes to, that lymph node will be removed and checked for melanoma (cancer) cells. Depending on the results of these, a stage will be given.
You also mention a lump has grown back. Has that been tested (biopsied) yet?
Then , depending on the staging, treatment options will be discussed.
If stage three: Interferon, watch and wait or possibly a clinical trial.
If stage four, there are several options as well such as interleukin-2, , BRAF inhibitors if a tumor tests positive or a clinical trial as well as other options such as Ipilimumab (Yervoy) which should be discussed if available.
If your friend has trouble making herself heard, or understanding ,she should bring a family member or at least a recorder so she better understands her options.
Let us know how it is going concerning her staging, and someone will help you further.
-
- November 4, 2011 at 3:03 pm
thank you very much for this. it was actually what i was looking for.
the first lump has been removed and i believe has been tested. however, no results being given!
the second lump has also been removed last Wednesday 30th nov and i understand that it also was or will be tested. however, my friend has been asked to see a doctor next Thursday, 8th December. so i hope she will be then told the stage and any other relevant information.
from what you have described, she had SNB done also on Wednesday 30th.
do you consider a week waiting for the results of SNB being a standard timescale? What do you think about a lump growing back within a month? Does it mean anything?
My friend understands everything and it is not a case of this. it is just a case of that she doesn't want to ask any questions. I may only guess that she doesn't want to be told something what she wouldn’t like… understandable. She has a private medical insurance but she doesn’t want to use it and she is seeing a local hospital. But as I said, hopefully, next Thursday we will find out more
Thank you for this info. That was the most helpful as so far
k.
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- November 4, 2011 at 3:11 pm
I just double checked, Yervoy is still not available there.
Sounds like she is going to get the results and options on the 8th. A week is good timeframe, sometimes depending on the country it takes longer. She really needs to see someone versed in melanoma and treatment options, not a local hospital. She most likely be referred to s melanoma oncologist/specialist after her appointment anyway.
Being honest, if the lump is melanoma and it grew back that quickly, that is not good. Any chance it could be swelling, infection, scar tissue etc?
keep the board posted.
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- November 8, 2011 at 9:07 am
Was it just a SNB or was more than one Node removed? Was there a drain installed that should be draining fluid from the incision? If swelling, Is it hot and does it appear inflamed? It there is a drain installed, it may be clogged up. Was she taught how to "milk" the tube from the drain to help unclog any buildup of mucus/fluid that may be trapped in the tube? If it is continuing to swell and/or leaking fluid she should retur to the Doctors office. I have knnpwn of aa few cses where the paatient was not informed of how to milk a drain, Other cases have had an infection. Normanlly I woould expect that the incision area would not be continuing to well after a week if there is neither a drainage nor infection problem.
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- November 8, 2011 at 9:07 am
Was it just a SNB or was more than one Node removed? Was there a drain installed that should be draining fluid from the incision? If swelling, Is it hot and does it appear inflamed? It there is a drain installed, it may be clogged up. Was she taught how to "milk" the tube from the drain to help unclog any buildup of mucus/fluid that may be trapped in the tube? If it is continuing to swell and/or leaking fluid she should retur to the Doctors office. I have knnpwn of aa few cses where the paatient was not informed of how to milk a drain, Other cases have had an infection. Normanlly I woould expect that the incision area would not be continuing to well after a week if there is neither a drainage nor infection problem.
-
- November 8, 2011 at 9:07 am
Was it just a SNB or was more than one Node removed? Was there a drain installed that should be draining fluid from the incision? If swelling, Is it hot and does it appear inflamed? It there is a drain installed, it may be clogged up. Was she taught how to "milk" the tube from the drain to help unclog any buildup of mucus/fluid that may be trapped in the tube? If it is continuing to swell and/or leaking fluid she should retur to the Doctors office. I have knnpwn of aa few cses where the paatient was not informed of how to milk a drain, Other cases have had an infection. Normanlly I woould expect that the incision area would not be continuing to well after a week if there is neither a drainage nor infection problem.
-
- November 4, 2011 at 3:11 pm
I just double checked, Yervoy is still not available there.
Sounds like she is going to get the results and options on the 8th. A week is good timeframe, sometimes depending on the country it takes longer. She really needs to see someone versed in melanoma and treatment options, not a local hospital. She most likely be referred to s melanoma oncologist/specialist after her appointment anyway.
Being honest, if the lump is melanoma and it grew back that quickly, that is not good. Any chance it could be swelling, infection, scar tissue etc?
keep the board posted.
-
- November 4, 2011 at 3:11 pm
I just double checked, Yervoy is still not available there.
Sounds like she is going to get the results and options on the 8th. A week is good timeframe, sometimes depending on the country it takes longer. She really needs to see someone versed in melanoma and treatment options, not a local hospital. She most likely be referred to s melanoma oncologist/specialist after her appointment anyway.
Being honest, if the lump is melanoma and it grew back that quickly, that is not good. Any chance it could be swelling, infection, scar tissue etc?
keep the board posted.
-
- November 4, 2011 at 3:03 pm
thank you very much for this. it was actually what i was looking for.
the first lump has been removed and i believe has been tested. however, no results being given!
the second lump has also been removed last Wednesday 30th nov and i understand that it also was or will be tested. however, my friend has been asked to see a doctor next Thursday, 8th December. so i hope she will be then told the stage and any other relevant information.
from what you have described, she had SNB done also on Wednesday 30th.
do you consider a week waiting for the results of SNB being a standard timescale? What do you think about a lump growing back within a month? Does it mean anything?
My friend understands everything and it is not a case of this. it is just a case of that she doesn't want to ask any questions. I may only guess that she doesn't want to be told something what she wouldn’t like… understandable. She has a private medical insurance but she doesn’t want to use it and she is seeing a local hospital. But as I said, hopefully, next Thursday we will find out more
Thank you for this info. That was the most helpful as so far
k.
-
- November 4, 2011 at 3:03 pm
thank you very much for this. it was actually what i was looking for.
the first lump has been removed and i believe has been tested. however, no results being given!
the second lump has also been removed last Wednesday 30th nov and i understand that it also was or will be tested. however, my friend has been asked to see a doctor next Thursday, 8th December. so i hope she will be then told the stage and any other relevant information.
from what you have described, she had SNB done also on Wednesday 30th.
do you consider a week waiting for the results of SNB being a standard timescale? What do you think about a lump growing back within a month? Does it mean anything?
My friend understands everything and it is not a case of this. it is just a case of that she doesn't want to ask any questions. I may only guess that she doesn't want to be told something what she wouldn’t like… understandable. She has a private medical insurance but she doesn’t want to use it and she is seeing a local hospital. But as I said, hopefully, next Thursday we will find out more
Thank you for this info. That was the most helpful as so far
k.
-
- November 4, 2011 at 2:52 pm
A WLE is what is called a wide local excision. It is what is done around the mole to make sure all margins (side and depth) are clear of melanoma. A SNB is what is called a Sentinel node biopsy. The person will be injected with dye, and depending on which node it goes to, that lymph node will be removed and checked for melanoma (cancer) cells. Depending on the results of these, a stage will be given.
You also mention a lump has grown back. Has that been tested (biopsied) yet?
Then , depending on the staging, treatment options will be discussed.
If stage three: Interferon, watch and wait or possibly a clinical trial.
If stage four, there are several options as well such as interleukin-2, , BRAF inhibitors if a tumor tests positive or a clinical trial as well as other options such as Ipilimumab (Yervoy) which should be discussed if available.
If your friend has trouble making herself heard, or understanding ,she should bring a family member or at least a recorder so she better understands her options.
Let us know how it is going concerning her staging, and someone will help you further.
-
- November 4, 2011 at 1:34 pm
I see from your profile that you are in England. There are several people here from England, so maybe they will see your post soon.
Where is she being seen? As Frank said, nodular tends to be more agressive so a oncologist, prefereberly melanoma onc should be seen.
It seems that your frined may have had a WLE/SNB wide local excision/Sentimnel node biopsy and perhaps they are waiting on results. She will most likely be stage three if the node or nodes come back positive and/or possibly even stage four based on what you have said so far about the second lump.
This is quite serious, your friend needs to be proactive and start asking questions. She is her own best advocate and she needs to know what is going on and become better aware of any and all options..
Good luck.
-
- November 4, 2011 at 1:34 pm
I see from your profile that you are in England. There are several people here from England, so maybe they will see your post soon.
Where is she being seen? As Frank said, nodular tends to be more agressive so a oncologist, prefereberly melanoma onc should be seen.
It seems that your frined may have had a WLE/SNB wide local excision/Sentimnel node biopsy and perhaps they are waiting on results. She will most likely be stage three if the node or nodes come back positive and/or possibly even stage four based on what you have said so far about the second lump.
This is quite serious, your friend needs to be proactive and start asking questions. She is her own best advocate and she needs to know what is going on and become better aware of any and all options..
Good luck.
-
- November 4, 2011 at 2:16 pm
Karolina, the overall situation appears to be serious.
From what you have said, I really wonder about the standard of care that your friend is receiving. Without further information from pathology report(s), I am hesitant to speculate about your friend's situation. There are procedures that oncologists will follow according to treatment guidelines. However, they really have to be aware of the aggressive nature of melanoma.
Best wishes
Frank from Australia
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- November 4, 2011 at 2:25 pm
well, i know that without any more information it is difficult to asses the situation. i personally am very concerned and I am not happy with the service she receives from her consultant but I can not do anything because she said she is happy with what is going on as so far!
I think that next Thursday she must be given something! I just thought that someone could come up with some kind of scenarios of what now can be done or should be done. I am aware about the seriousness of this cancer but I am not sure if my friend if. She only has been told that it is very rare type of cancer but they didn’t say much about it. All I have found out about it was from internet. My friend did not look at internet as she is not internet user (she is 53 years old)
k.
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- November 4, 2011 at 2:25 pm
well, i know that without any more information it is difficult to asses the situation. i personally am very concerned and I am not happy with the service she receives from her consultant but I can not do anything because she said she is happy with what is going on as so far!
I think that next Thursday she must be given something! I just thought that someone could come up with some kind of scenarios of what now can be done or should be done. I am aware about the seriousness of this cancer but I am not sure if my friend if. She only has been told that it is very rare type of cancer but they didn’t say much about it. All I have found out about it was from internet. My friend did not look at internet as she is not internet user (she is 53 years old)
k.
-
- November 4, 2011 at 2:25 pm
well, i know that without any more information it is difficult to asses the situation. i personally am very concerned and I am not happy with the service she receives from her consultant but I can not do anything because she said she is happy with what is going on as so far!
I think that next Thursday she must be given something! I just thought that someone could come up with some kind of scenarios of what now can be done or should be done. I am aware about the seriousness of this cancer but I am not sure if my friend if. She only has been told that it is very rare type of cancer but they didn’t say much about it. All I have found out about it was from internet. My friend did not look at internet as she is not internet user (she is 53 years old)
k.
-
- November 4, 2011 at 2:16 pm
Karolina, the overall situation appears to be serious.
From what you have said, I really wonder about the standard of care that your friend is receiving. Without further information from pathology report(s), I am hesitant to speculate about your friend's situation. There are procedures that oncologists will follow according to treatment guidelines. However, they really have to be aware of the aggressive nature of melanoma.
Best wishes
Frank from Australia
-
- November 4, 2011 at 2:16 pm
Karolina, the overall situation appears to be serious.
From what you have said, I really wonder about the standard of care that your friend is receiving. Without further information from pathology report(s), I am hesitant to speculate about your friend's situation. There are procedures that oncologists will follow according to treatment guidelines. However, they really have to be aware of the aggressive nature of melanoma.
Best wishes
Frank from Australia
-
- November 4, 2011 at 1:24 pm
hi,
thank you very much for a quick response. Unfortunately, as mentioned, my friend do not have any results as yet… i find it very strange as she has 3 visits already, including 2 tests and one operation and she still is not told anything… all what she is told is, we need some more test, we need some more tests….
she had a surgery on the lump she had (the second one) this wednesday, 30th nov, and they also have cut something from her lymph. She now will be seen by her consultant next Thursday! The problem is that my friend is really concerned and she doesn’t want to as questions… she only takes what she is told. I understand her uncertainty BUT I can not understand why she is now asking any questions.
I just wanted to find out:
- what does it really mean when a lump has grown back within a month and was as big as an egg in a first place and the second one was not much smaller.
- Whether there are a standard procedures to follow in this scenario
- Whether a week of waiting is an acceptable timescale in this case.
k.
-
- November 4, 2011 at 1:24 pm
hi,
thank you very much for a quick response. Unfortunately, as mentioned, my friend do not have any results as yet… i find it very strange as she has 3 visits already, including 2 tests and one operation and she still is not told anything… all what she is told is, we need some more test, we need some more tests….
she had a surgery on the lump she had (the second one) this wednesday, 30th nov, and they also have cut something from her lymph. She now will be seen by her consultant next Thursday! The problem is that my friend is really concerned and she doesn’t want to as questions… she only takes what she is told. I understand her uncertainty BUT I can not understand why she is now asking any questions.
I just wanted to find out:
- what does it really mean when a lump has grown back within a month and was as big as an egg in a first place and the second one was not much smaller.
- Whether there are a standard procedures to follow in this scenario
- Whether a week of waiting is an acceptable timescale in this case.
k.
-
- November 6, 2011 at 7:28 am
All,
Thank you very much for your responses, help and avises. all was really very helpful. As my friend doesn't really want to try and find out anything more from dirrerent sources, there is not a lot i can do.
She wants to wait till this Thursday and see what she will be told. Very enough. I will try and let you know if I find out some more
i will be stayin in touch with melanoma.org as I consider myself also as being in risk of melanoma due to the lots of moles on my body. now more then ever i treat it seriously and i have realised how important it is to monitor it.
once again thank you for all comments and, as mentioned, i will keep you informed what's going on with my friend
best to All of you
Karolina
-
- November 6, 2011 at 7:28 am
All,
Thank you very much for your responses, help and avises. all was really very helpful. As my friend doesn't really want to try and find out anything more from dirrerent sources, there is not a lot i can do.
She wants to wait till this Thursday and see what she will be told. Very enough. I will try and let you know if I find out some more
i will be stayin in touch with melanoma.org as I consider myself also as being in risk of melanoma due to the lots of moles on my body. now more then ever i treat it seriously and i have realised how important it is to monitor it.
once again thank you for all comments and, as mentioned, i will keep you informed what's going on with my friend
best to All of you
Karolina
-
- November 6, 2011 at 7:28 am
All,
Thank you very much for your responses, help and avises. all was really very helpful. As my friend doesn't really want to try and find out anything more from dirrerent sources, there is not a lot i can do.
She wants to wait till this Thursday and see what she will be told. Very enough. I will try and let you know if I find out some more
i will be stayin in touch with melanoma.org as I consider myself also as being in risk of melanoma due to the lots of moles on my body. now more then ever i treat it seriously and i have realised how important it is to monitor it.
once again thank you for all comments and, as mentioned, i will keep you informed what's going on with my friend
best to All of you
Karolina
-
- November 4, 2011 at 1:07 pm
Karolina, welcome to our forum. I encourage you to fill in some info on the profile page that you may wish to create for your friend. This will help us to help you better.
The depth of the primary tumour is the best indicator of prognosis. Would your friend have a copy of the pathology report? I feel that nodular melanoma tends to be more aggressive than other types, although nothing is certain with this cancer.
Therefore, it is important that your friend is treated by a competent oncologist who should ideally be a melanoma specialist.
Hope this helps.
Frank from Australia
-
- November 4, 2011 at 2:54 pm
Nodular melanoma usually grows quicker then others. If you find your friend that is now at a further stage the treatments will be the same options even though nodular. It sounds like the surgery (SNB)has been done to discover if they have found the cancer in the nodes. It does take at first to gather the information but with her not asking questions they are just not offering as much as needed. If they discovered the first surgery have they done a second surgery where they have removed more nodes?)
As a patient it does take a few weeks to absorb what is going on before they can kick into asking the proper questions. Offer your friend if you can go to the appointments, if they do not have a family member to be there. Oncologists will respect lists of questions! They also the oncologist not only agrees but often suggests a second opinion. Melanoma treatments are changing and a speciallist can keep up with the different treatment opions. However, if they have discovered advanced cells but at this point would be clear surgically there still might be few options systemically.
Without more specifics it's hard to give you imuch nformation. To me the most important is for them to send off biopsies that will test the different DNA testing. This would be done from biopsies that have already been from other surgeries in the past.
Have your friend to ask for copies of all paperwork and to keep copies of all DVD's. If your friend will allow you can post pathology reports and then maybe we can answer questions.
Linda
Stage IV since 06 Presently dealing with brain met
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- November 4, 2011 at 3:14 pm
Linda,
thank you for your comments. first of all, let me clarify that the first surgery she had was done on a lump (on the neck) which was not consider as cancer! After removing this first lump (of size of an egg – she had it for ca. 4 month) they have “discovered” that it is melanoma. At this same time my friend has noticed that it is growing back in this same place! She has been called to the consultant to be told that it is a rare cancer. She had a sample taken from her underarm and 3 days later she had a consultation. She hasn’t been told anything other that next surgery is planned for following week (Wednesday 30th). She has been told that the sample which they took from under arm was not good enough to say anything.
On Wednesday 30th nov she had an operation of removing the second lump and SNB has been done. Now she is waiting for an appointment with the consultant which will be next Thursday 8th November.
She hasn’t been given any paperwork other then the normal papers which everyone are getting when leaving a hospital. This only included what has been done and what medicine has been used. No reference to cancer’s measurement or so.
k
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- November 4, 2011 at 4:01 pm
Pathology reports are rarely given out without being specifically asked for. I think it's probably more common in the US than in England, too. She needs to ask for the info. Nodular melanoma isn't all that rare, but it certainly isn't the most common type of cutaneous (skin) melanoma. But once it has spread to lymph nodes or elsewhere, they don't distinguish the different types of melanoma in prognosis. Nodular melanoma tends to grow faster on the skin and is often caught later than other types of melanoma because it is fast growing.
Hopefully, you're friend will soon understand that this is serious and she needs to take a more active role in her care. While doctors try to have their patient's best interest in mind, if the patient isn't an active participant in the choices, they are basically just relying on one doctor's opinion. You might also suggest she get a second opinion if that is possible and see someone specializing in melanoma. I'm not sure what options are available if she's under the national health service.
Best wishes,
Janner
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- November 4, 2011 at 4:01 pm
Pathology reports are rarely given out without being specifically asked for. I think it's probably more common in the US than in England, too. She needs to ask for the info. Nodular melanoma isn't all that rare, but it certainly isn't the most common type of cutaneous (skin) melanoma. But once it has spread to lymph nodes or elsewhere, they don't distinguish the different types of melanoma in prognosis. Nodular melanoma tends to grow faster on the skin and is often caught later than other types of melanoma because it is fast growing.
Hopefully, you're friend will soon understand that this is serious and she needs to take a more active role in her care. While doctors try to have their patient's best interest in mind, if the patient isn't an active participant in the choices, they are basically just relying on one doctor's opinion. You might also suggest she get a second opinion if that is possible and see someone specializing in melanoma. I'm not sure what options are available if she's under the national health service.
Best wishes,
Janner
-
- November 4, 2011 at 4:01 pm
Pathology reports are rarely given out without being specifically asked for. I think it's probably more common in the US than in England, too. She needs to ask for the info. Nodular melanoma isn't all that rare, but it certainly isn't the most common type of cutaneous (skin) melanoma. But once it has spread to lymph nodes or elsewhere, they don't distinguish the different types of melanoma in prognosis. Nodular melanoma tends to grow faster on the skin and is often caught later than other types of melanoma because it is fast growing.
Hopefully, you're friend will soon understand that this is serious and she needs to take a more active role in her care. While doctors try to have their patient's best interest in mind, if the patient isn't an active participant in the choices, they are basically just relying on one doctor's opinion. You might also suggest she get a second opinion if that is possible and see someone specializing in melanoma. I'm not sure what options are available if she's under the national health service.
Best wishes,
Janner
-
- November 4, 2011 at 3:14 pm
Linda,
thank you for your comments. first of all, let me clarify that the first surgery she had was done on a lump (on the neck) which was not consider as cancer! After removing this first lump (of size of an egg – she had it for ca. 4 month) they have “discovered” that it is melanoma. At this same time my friend has noticed that it is growing back in this same place! She has been called to the consultant to be told that it is a rare cancer. She had a sample taken from her underarm and 3 days later she had a consultation. She hasn’t been told anything other that next surgery is planned for following week (Wednesday 30th). She has been told that the sample which they took from under arm was not good enough to say anything.
On Wednesday 30th nov she had an operation of removing the second lump and SNB has been done. Now she is waiting for an appointment with the consultant which will be next Thursday 8th November.
She hasn’t been given any paperwork other then the normal papers which everyone are getting when leaving a hospital. This only included what has been done and what medicine has been used. No reference to cancer’s measurement or so.
k
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- November 4, 2011 at 3:14 pm
Linda,
thank you for your comments. first of all, let me clarify that the first surgery she had was done on a lump (on the neck) which was not consider as cancer! After removing this first lump (of size of an egg – she had it for ca. 4 month) they have “discovered” that it is melanoma. At this same time my friend has noticed that it is growing back in this same place! She has been called to the consultant to be told that it is a rare cancer. She had a sample taken from her underarm and 3 days later she had a consultation. She hasn’t been told anything other that next surgery is planned for following week (Wednesday 30th). She has been told that the sample which they took from under arm was not good enough to say anything.
On Wednesday 30th nov she had an operation of removing the second lump and SNB has been done. Now she is waiting for an appointment with the consultant which will be next Thursday 8th November.
She hasn’t been given any paperwork other then the normal papers which everyone are getting when leaving a hospital. This only included what has been done and what medicine has been used. No reference to cancer’s measurement or so.
k
-
- November 4, 2011 at 2:54 pm
Nodular melanoma usually grows quicker then others. If you find your friend that is now at a further stage the treatments will be the same options even though nodular. It sounds like the surgery (SNB)has been done to discover if they have found the cancer in the nodes. It does take at first to gather the information but with her not asking questions they are just not offering as much as needed. If they discovered the first surgery have they done a second surgery where they have removed more nodes?)
As a patient it does take a few weeks to absorb what is going on before they can kick into asking the proper questions. Offer your friend if you can go to the appointments, if they do not have a family member to be there. Oncologists will respect lists of questions! They also the oncologist not only agrees but often suggests a second opinion. Melanoma treatments are changing and a speciallist can keep up with the different treatment opions. However, if they have discovered advanced cells but at this point would be clear surgically there still might be few options systemically.
Without more specifics it's hard to give you imuch nformation. To me the most important is for them to send off biopsies that will test the different DNA testing. This would be done from biopsies that have already been from other surgeries in the past.
Have your friend to ask for copies of all paperwork and to keep copies of all DVD's. If your friend will allow you can post pathology reports and then maybe we can answer questions.
Linda
Stage IV since 06 Presently dealing with brain met
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- November 4, 2011 at 2:54 pm
Nodular melanoma usually grows quicker then others. If you find your friend that is now at a further stage the treatments will be the same options even though nodular. It sounds like the surgery (SNB)has been done to discover if they have found the cancer in the nodes. It does take at first to gather the information but with her not asking questions they are just not offering as much as needed. If they discovered the first surgery have they done a second surgery where they have removed more nodes?)
As a patient it does take a few weeks to absorb what is going on before they can kick into asking the proper questions. Offer your friend if you can go to the appointments, if they do not have a family member to be there. Oncologists will respect lists of questions! They also the oncologist not only agrees but often suggests a second opinion. Melanoma treatments are changing and a speciallist can keep up with the different treatment opions. However, if they have discovered advanced cells but at this point would be clear surgically there still might be few options systemically.
Without more specifics it's hard to give you imuch nformation. To me the most important is for them to send off biopsies that will test the different DNA testing. This would be done from biopsies that have already been from other surgeries in the past.
Have your friend to ask for copies of all paperwork and to keep copies of all DVD's. If your friend will allow you can post pathology reports and then maybe we can answer questions.
Linda
Stage IV since 06 Presently dealing with brain met
-
- November 6, 2011 at 4:08 am
I was going to say get copies of all the Pathology reports and PET and CT scan reports. I also get copies of the scans themselves on disk. I am not sure if there was a patholgy report on the first tumor removed. If so ask for that report as well. It the surgeon just took the closest margin and did not get clear margins, then a lot of cells could easily have been left and could rapidly grow another tumor. A new tumor close to the old one is not unusual. and doesn't necessarily change the stage.
Over here we have started doing more Tumor DNA testing, since they have learned that different DNA mutations need to be treated differently. They are still trying to find out which treatment works on which mutation and which signaling path.
It usually takes about a week to get a patholgy report. CT scan reports may take only a couple of hours at some place or days at others over here.
I do strongly recommend seeing a meanoma specialist. There is so much going on in the melanoma world today that even a specialist cannot keep up with everything. I was reading last night that there are over 100 drugs being investigatd/tried for melanoma at the present time. This, after us going 12 years without a new drug being developed far enough for FDA approval.
I was misdiagnosed for 3 1/2 years before I found the diagnosis and then finaly found a great melanoma specialist.
Linda is a great fighter and often tells her Oncologist what to do. She has studied and learned more about herself and this diseae than she ever wanted to know.
Often they cannot tell for sure from just looking at the tissue removed and have to run an actual patholgy on the tissue to tell what is contained in it.
Have they determined if there were melanoma cells in the lymph nodes yet?
It does take a while to to get over the stun of the diagnosis and to learn this special language that is used for melanoma. It is not exactly the same as for other cancers. Melanoma is really probably ovr a hundred different diseases rather than just one that needs just one way of being attacked.
You are great for helping your friend through this struggle.
Good l uck and keep us informed.
-
- November 6, 2011 at 7:30 am
All,
Thank you very much for your responses, help and avises. all was really very helpful. As my friend doesn't really want to try and find out anything more from dirrerent sources, there is not a lot i can do.
She wants to wait till this Thursday and see what she will be told. Very enough. I will try and let you know if I find out some more
i will be stayin in touch with melanoma.org as I consider myself also as being in risk of melanoma due to the lots of moles on my body. now more then ever i treat it seriously and i have realised how important it is to monitor it.
once again thank you for all comments and, as mentioned, i will keep you informed what's going on with my friend
best to All of you
Karolina
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- November 9, 2011 at 2:39 pm
Dear All,
My friend has an appointment tomorrow with her consultant to discuss her SNB results. Can you advise what set of questions she should ask? My cunning plan is to give her a list of questions she can ask (which she has agree to do). Based on the information I gave you before i.e. she doesn’t know how advanced this cancer is, how big the lump was etc, some questions may be obvious, however, I still would like to prepare a full set of questions for her.
Can you help me?
Karolina
-
- November 9, 2011 at 2:39 pm
Dear All,
My friend has an appointment tomorrow with her consultant to discuss her SNB results. Can you advise what set of questions she should ask? My cunning plan is to give her a list of questions she can ask (which she has agree to do). Based on the information I gave you before i.e. she doesn’t know how advanced this cancer is, how big the lump was etc, some questions may be obvious, however, I still would like to prepare a full set of questions for her.
Can you help me?
Karolina
-
- November 9, 2011 at 2:39 pm
Dear All,
My friend has an appointment tomorrow with her consultant to discuss her SNB results. Can you advise what set of questions she should ask? My cunning plan is to give her a list of questions she can ask (which she has agree to do). Based on the information I gave you before i.e. she doesn’t know how advanced this cancer is, how big the lump was etc, some questions may be obvious, however, I still would like to prepare a full set of questions for her.
Can you help me?
Karolina
-
- November 6, 2011 at 7:30 am
All,
Thank you very much for your responses, help and avises. all was really very helpful. As my friend doesn't really want to try and find out anything more from dirrerent sources, there is not a lot i can do.
She wants to wait till this Thursday and see what she will be told. Very enough. I will try and let you know if I find out some more
i will be stayin in touch with melanoma.org as I consider myself also as being in risk of melanoma due to the lots of moles on my body. now more then ever i treat it seriously and i have realised how important it is to monitor it.
once again thank you for all comments and, as mentioned, i will keep you informed what's going on with my friend
best to All of you
Karolina
-
- November 6, 2011 at 7:30 am
All,
Thank you very much for your responses, help and avises. all was really very helpful. As my friend doesn't really want to try and find out anything more from dirrerent sources, there is not a lot i can do.
She wants to wait till this Thursday and see what she will be told. Very enough. I will try and let you know if I find out some more
i will be stayin in touch with melanoma.org as I consider myself also as being in risk of melanoma due to the lots of moles on my body. now more then ever i treat it seriously and i have realised how important it is to monitor it.
once again thank you for all comments and, as mentioned, i will keep you informed what's going on with my friend
best to All of you
Karolina
-
- November 6, 2011 at 4:08 am
I was going to say get copies of all the Pathology reports and PET and CT scan reports. I also get copies of the scans themselves on disk. I am not sure if there was a patholgy report on the first tumor removed. If so ask for that report as well. It the surgeon just took the closest margin and did not get clear margins, then a lot of cells could easily have been left and could rapidly grow another tumor. A new tumor close to the old one is not unusual. and doesn't necessarily change the stage.
Over here we have started doing more Tumor DNA testing, since they have learned that different DNA mutations need to be treated differently. They are still trying to find out which treatment works on which mutation and which signaling path.
It usually takes about a week to get a patholgy report. CT scan reports may take only a couple of hours at some place or days at others over here.
I do strongly recommend seeing a meanoma specialist. There is so much going on in the melanoma world today that even a specialist cannot keep up with everything. I was reading last night that there are over 100 drugs being investigatd/tried for melanoma at the present time. This, after us going 12 years without a new drug being developed far enough for FDA approval.
I was misdiagnosed for 3 1/2 years before I found the diagnosis and then finaly found a great melanoma specialist.
Linda is a great fighter and often tells her Oncologist what to do. She has studied and learned more about herself and this diseae than she ever wanted to know.
Often they cannot tell for sure from just looking at the tissue removed and have to run an actual patholgy on the tissue to tell what is contained in it.
Have they determined if there were melanoma cells in the lymph nodes yet?
It does take a while to to get over the stun of the diagnosis and to learn this special language that is used for melanoma. It is not exactly the same as for other cancers. Melanoma is really probably ovr a hundred different diseases rather than just one that needs just one way of being attacked.
You are great for helping your friend through this struggle.
Good l uck and keep us informed.
-
- November 6, 2011 at 4:08 am
I was going to say get copies of all the Pathology reports and PET and CT scan reports. I also get copies of the scans themselves on disk. I am not sure if there was a patholgy report on the first tumor removed. If so ask for that report as well. It the surgeon just took the closest margin and did not get clear margins, then a lot of cells could easily have been left and could rapidly grow another tumor. A new tumor close to the old one is not unusual. and doesn't necessarily change the stage.
Over here we have started doing more Tumor DNA testing, since they have learned that different DNA mutations need to be treated differently. They are still trying to find out which treatment works on which mutation and which signaling path.
It usually takes about a week to get a patholgy report. CT scan reports may take only a couple of hours at some place or days at others over here.
I do strongly recommend seeing a meanoma specialist. There is so much going on in the melanoma world today that even a specialist cannot keep up with everything. I was reading last night that there are over 100 drugs being investigatd/tried for melanoma at the present time. This, after us going 12 years without a new drug being developed far enough for FDA approval.
I was misdiagnosed for 3 1/2 years before I found the diagnosis and then finaly found a great melanoma specialist.
Linda is a great fighter and often tells her Oncologist what to do. She has studied and learned more about herself and this diseae than she ever wanted to know.
Often they cannot tell for sure from just looking at the tissue removed and have to run an actual patholgy on the tissue to tell what is contained in it.
Have they determined if there were melanoma cells in the lymph nodes yet?
It does take a while to to get over the stun of the diagnosis and to learn this special language that is used for melanoma. It is not exactly the same as for other cancers. Melanoma is really probably ovr a hundred different diseases rather than just one that needs just one way of being attacked.
You are great for helping your friend through this struggle.
Good l uck and keep us informed.
-
- November 14, 2011 at 2:19 pm
Hello everyone,
just to let you know, my friend is still awaiting her SNB results. She didn't get them at her last appointment on Thursday. he has been told that she has got a Desmoplastic melanoma. Unfortunately, I haven't find a lot about this type of melanoma and she also hasn't been given any details of what they have done as so far. However they said they will post her a report from her operation.
I don't know what I should think about it. It seems that she is loosing her weight every week but I understand that it could be because of nerves.
k.
-
- November 14, 2011 at 2:19 pm
Hello everyone,
just to let you know, my friend is still awaiting her SNB results. She didn't get them at her last appointment on Thursday. he has been told that she has got a Desmoplastic melanoma. Unfortunately, I haven't find a lot about this type of melanoma and she also hasn't been given any details of what they have done as so far. However they said they will post her a report from her operation.
I don't know what I should think about it. It seems that she is loosing her weight every week but I understand that it could be because of nerves.
k.
-
- November 14, 2011 at 2:19 pm
Hello everyone,
just to let you know, my friend is still awaiting her SNB results. She didn't get them at her last appointment on Thursday. he has been told that she has got a Desmoplastic melanoma. Unfortunately, I haven't find a lot about this type of melanoma and she also hasn't been given any details of what they have done as so far. However they said they will post her a report from her operation.
I don't know what I should think about it. It seems that she is loosing her weight every week but I understand that it could be because of nerves.
k.
-
Tagged: cutaneous melanoma
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