› Forums › Cutaneous Melanoma Community › help needed with my daughter superficial spreading melanoma
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POW.
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- September 7, 2012 at 10:14 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
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- September 7, 2012 at 7:26 pm
Answers to you questions…only as I see them (with melanoma not necessarily very straight forward answers unfortunately).
1. Melanoma does not always come back at your daughters stage. I had a 3.7mm tumor and microscopic amounts in 2 lymph nodes. So far (2.5 years) no recurrence. As your doctor stated only a 20% chance.
2. any operation is easier if you are healthy (including weight).
3. technically correct but we here always recommend follow up with a melanoma specialist.
4. Cannot answer the question about why he was so sure the lymph nodes were clear, he must have had a crystal ball.
What kind of follow-up did he recommend for your daughter? She should at least be seeing a dermatologist on a regular basis now.
Mary
Stage 3
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- September 7, 2012 at 11:43 pm
I understand how anxiety-making this whole thing can be, but please try to relax. There is a very strong probability that your daughter's melanoma is GONE. For most people with her type of lesion and path report, the cancer is GONE. Please keep reminding yourself of that.
However, there is some chance that some cancer cells got away and will form tumors elsewhere in the body. It would be impossible to see them now. But as long as your daughter gets CT scans every 4-6 monhts, IF new tumors appear they will be found and dealt with quickly. Just now, for the first time in history, medical science is making great strides at developing effective melanoma treatments. More are coming on the market all the time. So even if your daughter does develop metastises (which she probably will NOT), that is no by means a death sentence.
The "watch and wait" period is hard to go through. It's emotionally easier to think that you can grab that nasty beast by the throat and kill it! But you can't. You and your daughter have every reason to be optimistic. Try not to let anxiety take the joy out of your life.
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- September 8, 2012 at 2:27 am
hello and thank you.
my concerns are that they are using a manual inspection by the nurse of the lymph nodes only
as follow up..no ct scans or anything else… she must develop some sign first before they do any other tests.
Seems out of the dark ages… I am going to phone another larger hospital that has a large melanoma department for
advice on monday.
We are staying quite positive i think with the normal fears.. i am not discussing any of my fears with her…
My daughter? well after she came out of the surgery and woke up at 10.30pm , she was the last surgery for the day
(with her hubby beside her)
the first thing she did was text me to tell me to rest as i had taken her to hospital at 6.00am and waited with her during
her prep (lymph node tracing thing) and was with her all day, i had to go to work to transmit a file to Japan by midnight on
that day….
–she has surgery and tells me to rest….. well that is my daughter.
After she was told she had melanoma we went shopping and i bought her two handbags. an orange and a zebra stipe.
She normally carries a dull handbag…. We decided life should be fun everyday and things are going to change a little from now on…
I am just frustrated by the lack of information from the hospital and doctor. He seems to think ignorance is best in this situation . I feel the more knowledge the better as i know one day she MAY turn to me and say "what do you think mum"" and i want to be prepared.
Her hubby is good… helps with cooking and the family as well as working full time but he does not use the computer or internet and is blissfully unaware how serious it may be…. i am going to have a talk with him soon… when everything quiets down….
I did get them to talk and admit their fears and this seemed to release a lot of tension between them.
Its a fine line to walk for a mum….you want to be protective but not intrusive into their world…supporting him as well as her is the best bet i think.
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- September 8, 2012 at 4:02 am
Yes, you are in an akward position here. If your daughter's doctor did not order full CT scans, I would be worried, too. My brother was told "they got it all" and he had no CT scans. Now he's stage IV.
However, you are not the patient and you don't get to choose the doctor. I hope you will be able to convince your daughter to at least consult with a melanoma oncologist at a major medical center. That would be the best thing you could do for her.
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- September 8, 2012 at 4:02 am
Yes, you are in an akward position here. If your daughter's doctor did not order full CT scans, I would be worried, too. My brother was told "they got it all" and he had no CT scans. Now he's stage IV.
However, you are not the patient and you don't get to choose the doctor. I hope you will be able to convince your daughter to at least consult with a melanoma oncologist at a major medical center. That would be the best thing you could do for her.
-
- September 8, 2012 at 4:02 am
Yes, you are in an akward position here. If your daughter's doctor did not order full CT scans, I would be worried, too. My brother was told "they got it all" and he had no CT scans. Now he's stage IV.
However, you are not the patient and you don't get to choose the doctor. I hope you will be able to convince your daughter to at least consult with a melanoma oncologist at a major medical center. That would be the best thing you could do for her.
-
- September 8, 2012 at 2:27 am
hello and thank you.
my concerns are that they are using a manual inspection by the nurse of the lymph nodes only
as follow up..no ct scans or anything else… she must develop some sign first before they do any other tests.
Seems out of the dark ages… I am going to phone another larger hospital that has a large melanoma department for
advice on monday.
We are staying quite positive i think with the normal fears.. i am not discussing any of my fears with her…
My daughter? well after she came out of the surgery and woke up at 10.30pm , she was the last surgery for the day
(with her hubby beside her)
the first thing she did was text me to tell me to rest as i had taken her to hospital at 6.00am and waited with her during
her prep (lymph node tracing thing) and was with her all day, i had to go to work to transmit a file to Japan by midnight on
that day….
–she has surgery and tells me to rest….. well that is my daughter.
After she was told she had melanoma we went shopping and i bought her two handbags. an orange and a zebra stipe.
She normally carries a dull handbag…. We decided life should be fun everyday and things are going to change a little from now on…
I am just frustrated by the lack of information from the hospital and doctor. He seems to think ignorance is best in this situation . I feel the more knowledge the better as i know one day she MAY turn to me and say "what do you think mum"" and i want to be prepared.
Her hubby is good… helps with cooking and the family as well as working full time but he does not use the computer or internet and is blissfully unaware how serious it may be…. i am going to have a talk with him soon… when everything quiets down….
I did get them to talk and admit their fears and this seemed to release a lot of tension between them.
Its a fine line to walk for a mum….you want to be protective but not intrusive into their world…supporting him as well as her is the best bet i think.
-
- September 8, 2012 at 2:27 am
hello and thank you.
my concerns are that they are using a manual inspection by the nurse of the lymph nodes only
as follow up..no ct scans or anything else… she must develop some sign first before they do any other tests.
Seems out of the dark ages… I am going to phone another larger hospital that has a large melanoma department for
advice on monday.
We are staying quite positive i think with the normal fears.. i am not discussing any of my fears with her…
My daughter? well after she came out of the surgery and woke up at 10.30pm , she was the last surgery for the day
(with her hubby beside her)
the first thing she did was text me to tell me to rest as i had taken her to hospital at 6.00am and waited with her during
her prep (lymph node tracing thing) and was with her all day, i had to go to work to transmit a file to Japan by midnight on
that day….
–she has surgery and tells me to rest….. well that is my daughter.
After she was told she had melanoma we went shopping and i bought her two handbags. an orange and a zebra stipe.
She normally carries a dull handbag…. We decided life should be fun everyday and things are going to change a little from now on…
I am just frustrated by the lack of information from the hospital and doctor. He seems to think ignorance is best in this situation . I feel the more knowledge the better as i know one day she MAY turn to me and say "what do you think mum"" and i want to be prepared.
Her hubby is good… helps with cooking and the family as well as working full time but he does not use the computer or internet and is blissfully unaware how serious it may be…. i am going to have a talk with him soon… when everything quiets down….
I did get them to talk and admit their fears and this seemed to release a lot of tension between them.
Its a fine line to walk for a mum….you want to be protective but not intrusive into their world…supporting him as well as her is the best bet i think.
-
- September 7, 2012 at 11:43 pm
I understand how anxiety-making this whole thing can be, but please try to relax. There is a very strong probability that your daughter's melanoma is GONE. For most people with her type of lesion and path report, the cancer is GONE. Please keep reminding yourself of that.
However, there is some chance that some cancer cells got away and will form tumors elsewhere in the body. It would be impossible to see them now. But as long as your daughter gets CT scans every 4-6 monhts, IF new tumors appear they will be found and dealt with quickly. Just now, for the first time in history, medical science is making great strides at developing effective melanoma treatments. More are coming on the market all the time. So even if your daughter does develop metastises (which she probably will NOT), that is no by means a death sentence.
The "watch and wait" period is hard to go through. It's emotionally easier to think that you can grab that nasty beast by the throat and kill it! But you can't. You and your daughter have every reason to be optimistic. Try not to let anxiety take the joy out of your life.
-
- September 7, 2012 at 11:43 pm
I understand how anxiety-making this whole thing can be, but please try to relax. There is a very strong probability that your daughter's melanoma is GONE. For most people with her type of lesion and path report, the cancer is GONE. Please keep reminding yourself of that.
However, there is some chance that some cancer cells got away and will form tumors elsewhere in the body. It would be impossible to see them now. But as long as your daughter gets CT scans every 4-6 monhts, IF new tumors appear they will be found and dealt with quickly. Just now, for the first time in history, medical science is making great strides at developing effective melanoma treatments. More are coming on the market all the time. So even if your daughter does develop metastises (which she probably will NOT), that is no by means a death sentence.
The "watch and wait" period is hard to go through. It's emotionally easier to think that you can grab that nasty beast by the throat and kill it! But you can't. You and your daughter have every reason to be optimistic. Try not to let anxiety take the joy out of your life.
-
- September 7, 2012 at 7:26 pm
Answers to you questions…only as I see them (with melanoma not necessarily very straight forward answers unfortunately).
1. Melanoma does not always come back at your daughters stage. I had a 3.7mm tumor and microscopic amounts in 2 lymph nodes. So far (2.5 years) no recurrence. As your doctor stated only a 20% chance.
2. any operation is easier if you are healthy (including weight).
3. technically correct but we here always recommend follow up with a melanoma specialist.
4. Cannot answer the question about why he was so sure the lymph nodes were clear, he must have had a crystal ball.
What kind of follow-up did he recommend for your daughter? She should at least be seeing a dermatologist on a regular basis now.
Mary
Stage 3
-
- September 7, 2012 at 7:26 pm
Answers to you questions…only as I see them (with melanoma not necessarily very straight forward answers unfortunately).
1. Melanoma does not always come back at your daughters stage. I had a 3.7mm tumor and microscopic amounts in 2 lymph nodes. So far (2.5 years) no recurrence. As your doctor stated only a 20% chance.
2. any operation is easier if you are healthy (including weight).
3. technically correct but we here always recommend follow up with a melanoma specialist.
4. Cannot answer the question about why he was so sure the lymph nodes were clear, he must have had a crystal ball.
What kind of follow-up did he recommend for your daughter? She should at least be seeing a dermatologist on a regular basis now.
Mary
Stage 3
-
Tagged: cutaneous melanoma
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