› Forums › Cutaneous Melanoma Community › help needed with my daughter superficial spreading melanoma
- This topic has 15 replies, 3 voices, and was last updated 11 years, 7 months ago by
bron.
- Post
-
- September 7, 2012 at 10:15 am
Hello… i have just joined this MRF messageboard today. please be patient. i have never used one of these boards before. i will be clinical and brief.
Please excuse any spelling errors i am very stressed…
My daughter is 42 years old.
Had melanoma removed by local doctor on 25.07.12 FROM the middle of her back between her shoulder blades.
Pathology results.
-superficial spreading melanoma.
-BRESLOW 2MM.
-CLARK Level 4.
-ulcerated-YES.
-mitotic rate >5
Hello… i have just joined this MRF messageboard today. please be patient. i have never used one of these boards before. i will be clinical and brief.
Please excuse any spelling errors i am very stressed…
My daughter is 42 years old.
Had melanoma removed by local doctor on 25.07.12 FROM the middle of her back between her shoulder blades.
Pathology results.
-superficial spreading melanoma.
-BRESLOW 2MM.
-CLARK Level 4.
-ulcerated-YES.
-mitotic rate >5
I have done hours on the computer and worked out she would be
T2BN0M0
She was referred to an ONCOLOGY SURGEON who removed a large piece of skin from the original site to just below her right shoulder.
He also removed the lymph node under her right arm. (although he kept stating he did not need to as the results would be clear).
The surgeon would not tell us why he thought the results would be clear.
Pathology on the removed skin and lymph nodes are clear…
We had two visits with the surgeon. 1 prior to surgery and 1 after to get the results.
She is scheduled to have follow up visits every 4 months.
NO ONE will give us any further information. The surgeon stated there is a 20% chance the melanoma will come back. After being pressed he stated
it will come back in her organs and he based that on her high? mitotic rate. I had to ask three times to get that answer. It seems he does not want to discuss her case… this is frightening me as i think HE thinks she is a lost cause….. (and i dont frighten easily).
SEEMS WE MUST JUST SIT AND WAIT.
MY burning questions are.
-Does the melanoma ALWAYS come back with everyone with these pathology readings above or only some peoples.
-If it comes back and they find a tumor and need to operate, is it easier if she is normal weight.. (she is overweight).
-I phoned the melanoma unit at the hospitall and they state she does NOT need an oncologist unless her surgeon refers her. (the surgeon is NOT an oncologist). Is this correct.
-Why was he so sure the lymph node would be clear. Does he think the cancer has gone below the skin into the blood or tissue.
If anyone can help me i would appreciate it….
very kind regards from Bron (queensland australia)
PS is it ok to post on this board. i found this the best one so i joined.
l
my mmy
- Replies
-
-
- September 7, 2012 at 12:27 pm
Not sure I can answer all your questions…
Does the melanoma ALWAYS come back with everyone with these pathology readings above or only some peoples? There are people who survive at every stage including stage II. Surgery can be curative. There is no way to predict who it will return in, however. Your daughter is at higher risk for a recurrence, but so are those who are in the same stage as she is.
If it comes back and they find a tumor and need to operate, is it easier if she is normal weight.. (she is overweight). Depends on how overweight. Truthfully, this wouldn't be my first concern other than for general health.
-I phoned the melanoma unit at the hospitall and they state she does NOT need an oncologist unless her surgeon refers her. (the surgeon is NOT an oncologist). Is this correct. In the US, she would probably have an oncologist for followup. They are the ones who would treat her if something returned.
-Why was he so sure the lymph node would be clear. Does he think the cancer has gone below the skin into the blood or tissue. The most likely area for recurrence would be the lymph nodes first, organs second. The key would be to monitor the lymph node basin where her sentinel node biopsy was done. As for the surgeons surity that the lymph nodes would be negative, no clue. It certainly would not be unusual for a 2mm lesion to have spread to the lymph nodes. Maybe his goal was to be reassuring – hard to tell.
You say the surgeon does not want to discuss her case. That would be reason enough for me to find someone else to look after your daughter. However, the reality is he cannot predict whether she will have a recurrence, where it would recur, her real odds (vs historic percentages) or anything like that. It is all speculative. Melanoma is unpredictable – that's not speculative. This is not a lost cause and I certainly wouldn't assume that is what the doctor thinks based on his actions. There have been two new drugs approved recently for advanced melanoma. I'm not sure that they were approved in Australia, though, so I might be misspeaking. There is ongoing research and other drugs on the horizon that show good promise as well.
Above all, your daughter needs to be comfortable with her doctor. If she's not, then I'd look elsewhere. Not sure how feasible that is with your healthcare system and location, but Australia has the highest rates of melanoma in the world. There are certainly major melanoma centers there and that is where I'd want to be if at all possible.
Best wishes,
Janner
-
- September 7, 2012 at 3:10 pm
hello and thank you Janner for taking the time to answer my query. I noted that you help many people here…
My concerns are,
The doctor did not take any time to explain the procedure or complications of the op. lymph node. etc
When asked if she could fly interstate some 6 days after op he said no problems. (she is having problems where the
lymph node was removed.)
Her follow up will be with a nurse who works 2 and half days a week and who also does not answer questions.
Both the surgeon and nurse spent approx. 3 minutes with my daughter.
Neither the nurse nor surgeon examined her lymph areas thoughly , simply prodded her as she stood up.
No follow up care of her incisions or general health was discussed.
Nothing was discussed about what she could check for in the future. Self examination etc.
All this information i have obtained from the internet and from these boards and passed onto her.
My daughter walked away from the second visit shellshocked and thinking it was all over and a minor chance of re occuring.
Her weight issue stems from the difficulty she had after surgery and stiches.. (she is going to attend weight watchers this week-she is a tiny person and quite overweight). From a simple mechanical point of view it would be better (i think) if she sheds weight she would cope with the lack of movement after surgery if she needs further surgery down the track.. (and we hope she does not).
She is a public patient with no private health care so very much at the mercy of the system.
Questions please……
How do you monitor the lymph node basin where the sentinel node biopsy was done.?
What are we monitoring for.?
Is this something we can do or is it a doctor thing.?
I have done some research and will phone the PA hospital on monday. (it is friday night here) as they have a number of websites saying they are the biggest melanoma centre in queensland…. step 1.
thank you and very kind regards from bron
-
- September 7, 2012 at 5:30 pm
Hello Bron – I urge you to contact the Melanoma Institute in Australia – Jay Allen's (Stage 3 survivor and a great guy) email address is on this support group page and he can help you with the best place to go in AU – http://www.melanoma.org.au/patients/support-groups.html
You need a doctor who will show her how to monitor her lymph nodes (usually the node basin nearest the melanoma) and look for recurrences in the skin (bumps) near the area where the mole was removed. My husband's doctor told him how to do this each morning in the shower. Don't rely on doctors to check her out – she needs to be very proactive in monitoring herself.
Take care
Emily
-
- September 7, 2012 at 5:30 pm
Hello Bron – I urge you to contact the Melanoma Institute in Australia – Jay Allen's (Stage 3 survivor and a great guy) email address is on this support group page and he can help you with the best place to go in AU – http://www.melanoma.org.au/patients/support-groups.html
You need a doctor who will show her how to monitor her lymph nodes (usually the node basin nearest the melanoma) and look for recurrences in the skin (bumps) near the area where the mole was removed. My husband's doctor told him how to do this each morning in the shower. Don't rely on doctors to check her out – she needs to be very proactive in monitoring herself.
Take care
Emily
-
- September 7, 2012 at 5:30 pm
Hello Bron – I urge you to contact the Melanoma Institute in Australia – Jay Allen's (Stage 3 survivor and a great guy) email address is on this support group page and he can help you with the best place to go in AU – http://www.melanoma.org.au/patients/support-groups.html
You need a doctor who will show her how to monitor her lymph nodes (usually the node basin nearest the melanoma) and look for recurrences in the skin (bumps) near the area where the mole was removed. My husband's doctor told him how to do this each morning in the shower. Don't rely on doctors to check her out – she needs to be very proactive in monitoring herself.
Take care
Emily
-
- September 7, 2012 at 5:52 pm
I believe you said the lymph node was removed from the armpit. She has another armpit 🙂 on the other side that can be used for comparison. Hard, enlarge and umovable bumps would be something to look for, but also differences from one side to the other or changes. Changes can be a result of scar tissue and such, but the key is for your daughter to learn what is normal for her, so abnormal will be noticed. (Obviously, she has to wait for the current area to heal before learning what the new normal is). I think it is much more important for a patient to monitor themselves than a doctor – the patient is in a much better position to monitor changes!
The SNB can have complications including lymphedema. Most doctors downplay that because most patients have no difficulties. Flying shouldn't be a problem, either. But it is nice to have a medical professional who will talk to you and tell you what to expect. Calling elsewhere sounds like a good choice.
Janner
-
- September 8, 2012 at 12:20 am
Thank you all for your help and information. From your answers i have been able to research the next steps.
Fear levels going down as I dont feel so helpless now.
I will contact Jay on monday.
I have done heaps of research on the lymph node removal and checking. ( excellent site MI institute in Sydney that walks you
through all stages from first finding the intial melanoma to agressive care at advanced stages).
I dont know if this helps but i will post it just in case it helps even one person.
I have four daughter.
They have 9 children between them.
We have had everyone checked for melanoma in the last few weeks.
No one checked was found to have any signs of melanoma or problems. (everyone will be checked yearly from now on).
My daughter with the melanoma has twins, boy and girl aged 13 ,non identical and one older daughter aged 16.
The girl aged 13 was noted as having nearly identical skin type as her mother and we were advised to monitor her closely.
My daughter who has the melanoma had roughly the same skin as the other three when young. fair to very slight olive.
None of the girls have light skin. red hair or freckles or excessive moles… a few here and there.
When at the hospital on the second visit the nurse removed her bandages from her back i was shocked to see
that she her entire back was covered with large flat freckles (using freckles because i dont know the correct term)… (being overweight she has never worn t shirts or skimpy tops so i had never seen these before) .
When i questioned her about these freckles she stated that they had appeared over the last 10-15 years. The freckles
are not on any other area of her body.
This is the only difference we can find between the girls. No one else developed these…None of the my children or grandchildren sunbake and they all use the highest sunscreen available and always have.
PLEASE, i stress these freckles developed…not part of her normal skin from birth to say approximatly 25 years old.
(so please dont stress if you have freckles as a normal part of your life),
The surgeon had made a comment of " you are just unlucky and skin type " (when asked why she developed a melanoma in an area that did not get sun).
Another important thing we found. Make sure yours test are done correctly.
In Australia there are MOLE CLINICS all over . Several in every suburb and shopping centres.
We all went to different locations. We found some to be utterly useless. Two missed some moles all together and some did not check between toes , finger or in hair..
We have now found a very good centre . We rebooked through this centre and had some checks redone.
Had we not had melanoma in the family and done this research we would not have know some of our checks
were not good enough.
My daughter with the melanoma is lucky .
Her doctor of 10 years had checked this growth yearly (it was not a mole, it was a pinky ,skin coloured small growth).
He never considered the growth to be a problem.
Her doctor moved his surgery last year .
My daughter went to a new doctor this year.
This doctor removed it at once, and now we are on this journey , stage 2.
Had she not changed doctors she may not have been found till much later.
-
- September 8, 2012 at 12:20 am
Thank you all for your help and information. From your answers i have been able to research the next steps.
Fear levels going down as I dont feel so helpless now.
I will contact Jay on monday.
I have done heaps of research on the lymph node removal and checking. ( excellent site MI institute in Sydney that walks you
through all stages from first finding the intial melanoma to agressive care at advanced stages).
I dont know if this helps but i will post it just in case it helps even one person.
I have four daughter.
They have 9 children between them.
We have had everyone checked for melanoma in the last few weeks.
No one checked was found to have any signs of melanoma or problems. (everyone will be checked yearly from now on).
My daughter with the melanoma has twins, boy and girl aged 13 ,non identical and one older daughter aged 16.
The girl aged 13 was noted as having nearly identical skin type as her mother and we were advised to monitor her closely.
My daughter who has the melanoma had roughly the same skin as the other three when young. fair to very slight olive.
None of the girls have light skin. red hair or freckles or excessive moles… a few here and there.
When at the hospital on the second visit the nurse removed her bandages from her back i was shocked to see
that she her entire back was covered with large flat freckles (using freckles because i dont know the correct term)… (being overweight she has never worn t shirts or skimpy tops so i had never seen these before) .
When i questioned her about these freckles she stated that they had appeared over the last 10-15 years. The freckles
are not on any other area of her body.
This is the only difference we can find between the girls. No one else developed these…None of the my children or grandchildren sunbake and they all use the highest sunscreen available and always have.
PLEASE, i stress these freckles developed…not part of her normal skin from birth to say approximatly 25 years old.
(so please dont stress if you have freckles as a normal part of your life),
The surgeon had made a comment of " you are just unlucky and skin type " (when asked why she developed a melanoma in an area that did not get sun).
Another important thing we found. Make sure yours test are done correctly.
In Australia there are MOLE CLINICS all over . Several in every suburb and shopping centres.
We all went to different locations. We found some to be utterly useless. Two missed some moles all together and some did not check between toes , finger or in hair..
We have now found a very good centre . We rebooked through this centre and had some checks redone.
Had we not had melanoma in the family and done this research we would not have know some of our checks
were not good enough.
My daughter with the melanoma is lucky .
Her doctor of 10 years had checked this growth yearly (it was not a mole, it was a pinky ,skin coloured small growth).
He never considered the growth to be a problem.
Her doctor moved his surgery last year .
My daughter went to a new doctor this year.
This doctor removed it at once, and now we are on this journey , stage 2.
Had she not changed doctors she may not have been found till much later.
-
- September 8, 2012 at 12:20 am
Thank you all for your help and information. From your answers i have been able to research the next steps.
Fear levels going down as I dont feel so helpless now.
I will contact Jay on monday.
I have done heaps of research on the lymph node removal and checking. ( excellent site MI institute in Sydney that walks you
through all stages from first finding the intial melanoma to agressive care at advanced stages).
I dont know if this helps but i will post it just in case it helps even one person.
I have four daughter.
They have 9 children between them.
We have had everyone checked for melanoma in the last few weeks.
No one checked was found to have any signs of melanoma or problems. (everyone will be checked yearly from now on).
My daughter with the melanoma has twins, boy and girl aged 13 ,non identical and one older daughter aged 16.
The girl aged 13 was noted as having nearly identical skin type as her mother and we were advised to monitor her closely.
My daughter who has the melanoma had roughly the same skin as the other three when young. fair to very slight olive.
None of the girls have light skin. red hair or freckles or excessive moles… a few here and there.
When at the hospital on the second visit the nurse removed her bandages from her back i was shocked to see
that she her entire back was covered with large flat freckles (using freckles because i dont know the correct term)… (being overweight she has never worn t shirts or skimpy tops so i had never seen these before) .
When i questioned her about these freckles she stated that they had appeared over the last 10-15 years. The freckles
are not on any other area of her body.
This is the only difference we can find between the girls. No one else developed these…None of the my children or grandchildren sunbake and they all use the highest sunscreen available and always have.
PLEASE, i stress these freckles developed…not part of her normal skin from birth to say approximatly 25 years old.
(so please dont stress if you have freckles as a normal part of your life),
The surgeon had made a comment of " you are just unlucky and skin type " (when asked why she developed a melanoma in an area that did not get sun).
Another important thing we found. Make sure yours test are done correctly.
In Australia there are MOLE CLINICS all over . Several in every suburb and shopping centres.
We all went to different locations. We found some to be utterly useless. Two missed some moles all together and some did not check between toes , finger or in hair..
We have now found a very good centre . We rebooked through this centre and had some checks redone.
Had we not had melanoma in the family and done this research we would not have know some of our checks
were not good enough.
My daughter with the melanoma is lucky .
Her doctor of 10 years had checked this growth yearly (it was not a mole, it was a pinky ,skin coloured small growth).
He never considered the growth to be a problem.
Her doctor moved his surgery last year .
My daughter went to a new doctor this year.
This doctor removed it at once, and now we are on this journey , stage 2.
Had she not changed doctors she may not have been found till much later.
-
- September 7, 2012 at 5:52 pm
I believe you said the lymph node was removed from the armpit. She has another armpit 🙂 on the other side that can be used for comparison. Hard, enlarge and umovable bumps would be something to look for, but also differences from one side to the other or changes. Changes can be a result of scar tissue and such, but the key is for your daughter to learn what is normal for her, so abnormal will be noticed. (Obviously, she has to wait for the current area to heal before learning what the new normal is). I think it is much more important for a patient to monitor themselves than a doctor – the patient is in a much better position to monitor changes!
The SNB can have complications including lymphedema. Most doctors downplay that because most patients have no difficulties. Flying shouldn't be a problem, either. But it is nice to have a medical professional who will talk to you and tell you what to expect. Calling elsewhere sounds like a good choice.
Janner
-
- September 7, 2012 at 5:52 pm
I believe you said the lymph node was removed from the armpit. She has another armpit 🙂 on the other side that can be used for comparison. Hard, enlarge and umovable bumps would be something to look for, but also differences from one side to the other or changes. Changes can be a result of scar tissue and such, but the key is for your daughter to learn what is normal for her, so abnormal will be noticed. (Obviously, she has to wait for the current area to heal before learning what the new normal is). I think it is much more important for a patient to monitor themselves than a doctor – the patient is in a much better position to monitor changes!
The SNB can have complications including lymphedema. Most doctors downplay that because most patients have no difficulties. Flying shouldn't be a problem, either. But it is nice to have a medical professional who will talk to you and tell you what to expect. Calling elsewhere sounds like a good choice.
Janner
-
- September 7, 2012 at 3:10 pm
hello and thank you Janner for taking the time to answer my query. I noted that you help many people here…
My concerns are,
The doctor did not take any time to explain the procedure or complications of the op. lymph node. etc
When asked if she could fly interstate some 6 days after op he said no problems. (she is having problems where the
lymph node was removed.)
Her follow up will be with a nurse who works 2 and half days a week and who also does not answer questions.
Both the surgeon and nurse spent approx. 3 minutes with my daughter.
Neither the nurse nor surgeon examined her lymph areas thoughly , simply prodded her as she stood up.
No follow up care of her incisions or general health was discussed.
Nothing was discussed about what she could check for in the future. Self examination etc.
All this information i have obtained from the internet and from these boards and passed onto her.
My daughter walked away from the second visit shellshocked and thinking it was all over and a minor chance of re occuring.
Her weight issue stems from the difficulty she had after surgery and stiches.. (she is going to attend weight watchers this week-she is a tiny person and quite overweight). From a simple mechanical point of view it would be better (i think) if she sheds weight she would cope with the lack of movement after surgery if she needs further surgery down the track.. (and we hope she does not).
She is a public patient with no private health care so very much at the mercy of the system.
Questions please……
How do you monitor the lymph node basin where the sentinel node biopsy was done.?
What are we monitoring for.?
Is this something we can do or is it a doctor thing.?
I have done some research and will phone the PA hospital on monday. (it is friday night here) as they have a number of websites saying they are the biggest melanoma centre in queensland…. step 1.
thank you and very kind regards from bron
-
- September 7, 2012 at 3:10 pm
hello and thank you Janner for taking the time to answer my query. I noted that you help many people here…
My concerns are,
The doctor did not take any time to explain the procedure or complications of the op. lymph node. etc
When asked if she could fly interstate some 6 days after op he said no problems. (she is having problems where the
lymph node was removed.)
Her follow up will be with a nurse who works 2 and half days a week and who also does not answer questions.
Both the surgeon and nurse spent approx. 3 minutes with my daughter.
Neither the nurse nor surgeon examined her lymph areas thoughly , simply prodded her as she stood up.
No follow up care of her incisions or general health was discussed.
Nothing was discussed about what she could check for in the future. Self examination etc.
All this information i have obtained from the internet and from these boards and passed onto her.
My daughter walked away from the second visit shellshocked and thinking it was all over and a minor chance of re occuring.
Her weight issue stems from the difficulty she had after surgery and stiches.. (she is going to attend weight watchers this week-she is a tiny person and quite overweight). From a simple mechanical point of view it would be better (i think) if she sheds weight she would cope with the lack of movement after surgery if she needs further surgery down the track.. (and we hope she does not).
She is a public patient with no private health care so very much at the mercy of the system.
Questions please……
How do you monitor the lymph node basin where the sentinel node biopsy was done.?
What are we monitoring for.?
Is this something we can do or is it a doctor thing.?
I have done some research and will phone the PA hospital on monday. (it is friday night here) as they have a number of websites saying they are the biggest melanoma centre in queensland…. step 1.
thank you and very kind regards from bron
-
- September 7, 2012 at 12:27 pm
Not sure I can answer all your questions…
Does the melanoma ALWAYS come back with everyone with these pathology readings above or only some peoples? There are people who survive at every stage including stage II. Surgery can be curative. There is no way to predict who it will return in, however. Your daughter is at higher risk for a recurrence, but so are those who are in the same stage as she is.
If it comes back and they find a tumor and need to operate, is it easier if she is normal weight.. (she is overweight). Depends on how overweight. Truthfully, this wouldn't be my first concern other than for general health.
-I phoned the melanoma unit at the hospitall and they state she does NOT need an oncologist unless her surgeon refers her. (the surgeon is NOT an oncologist). Is this correct. In the US, she would probably have an oncologist for followup. They are the ones who would treat her if something returned.
-Why was he so sure the lymph node would be clear. Does he think the cancer has gone below the skin into the blood or tissue. The most likely area for recurrence would be the lymph nodes first, organs second. The key would be to monitor the lymph node basin where her sentinel node biopsy was done. As for the surgeons surity that the lymph nodes would be negative, no clue. It certainly would not be unusual for a 2mm lesion to have spread to the lymph nodes. Maybe his goal was to be reassuring – hard to tell.
You say the surgeon does not want to discuss her case. That would be reason enough for me to find someone else to look after your daughter. However, the reality is he cannot predict whether she will have a recurrence, where it would recur, her real odds (vs historic percentages) or anything like that. It is all speculative. Melanoma is unpredictable – that's not speculative. This is not a lost cause and I certainly wouldn't assume that is what the doctor thinks based on his actions. There have been two new drugs approved recently for advanced melanoma. I'm not sure that they were approved in Australia, though, so I might be misspeaking. There is ongoing research and other drugs on the horizon that show good promise as well.
Above all, your daughter needs to be comfortable with her doctor. If she's not, then I'd look elsewhere. Not sure how feasible that is with your healthcare system and location, but Australia has the highest rates of melanoma in the world. There are certainly major melanoma centers there and that is where I'd want to be if at all possible.
Best wishes,
Janner
-
- September 7, 2012 at 12:27 pm
Not sure I can answer all your questions…
Does the melanoma ALWAYS come back with everyone with these pathology readings above or only some peoples? There are people who survive at every stage including stage II. Surgery can be curative. There is no way to predict who it will return in, however. Your daughter is at higher risk for a recurrence, but so are those who are in the same stage as she is.
If it comes back and they find a tumor and need to operate, is it easier if she is normal weight.. (she is overweight). Depends on how overweight. Truthfully, this wouldn't be my first concern other than for general health.
-I phoned the melanoma unit at the hospitall and they state she does NOT need an oncologist unless her surgeon refers her. (the surgeon is NOT an oncologist). Is this correct. In the US, she would probably have an oncologist for followup. They are the ones who would treat her if something returned.
-Why was he so sure the lymph node would be clear. Does he think the cancer has gone below the skin into the blood or tissue. The most likely area for recurrence would be the lymph nodes first, organs second. The key would be to monitor the lymph node basin where her sentinel node biopsy was done. As for the surgeons surity that the lymph nodes would be negative, no clue. It certainly would not be unusual for a 2mm lesion to have spread to the lymph nodes. Maybe his goal was to be reassuring – hard to tell.
You say the surgeon does not want to discuss her case. That would be reason enough for me to find someone else to look after your daughter. However, the reality is he cannot predict whether she will have a recurrence, where it would recur, her real odds (vs historic percentages) or anything like that. It is all speculative. Melanoma is unpredictable – that's not speculative. This is not a lost cause and I certainly wouldn't assume that is what the doctor thinks based on his actions. There have been two new drugs approved recently for advanced melanoma. I'm not sure that they were approved in Australia, though, so I might be misspeaking. There is ongoing research and other drugs on the horizon that show good promise as well.
Above all, your daughter needs to be comfortable with her doctor. If she's not, then I'd look elsewhere. Not sure how feasible that is with your healthcare system and location, but Australia has the highest rates of melanoma in the world. There are certainly major melanoma centers there and that is where I'd want to be if at all possible.
Best wishes,
Janner
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.