› Forums › General Melanoma Community › Advice sought please. Diagnosed as Stage 4 malignant melanoma
- This topic has 27 replies, 5 voices, and was last updated 10 years, 1 month ago by oldblue.
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- July 18, 2014 at 4:22 pm
Dear All.
Last month I had what I thought was a wart removed frommy L thigh and it turns out it was a stage malignant melanoma. It was graded as Clarl Level 4 and Breslow depth 5mm. There is vascular involvement. Mitosis was scored at 5. My LDH blood test was normal.
I then had a PET CT scan and the results were negative to tumour or mets.
This week I had a lymphocytogram (agony) and ultrasound and the reports were good. It showed normal lymph in my groin and uptake from the primary into two sentinel nodes.
I went to theatre two days ago and had a wide margin excision and removal the two sentinel nodes in my groin. I had another suspicious but not sinister mole removed as a precaution and for testing from my L cheek.
I will receive the results from the procedures in two weeks.
Is this how the disease picture progresses? My feeling is that I some good prognostics and some bad prognostics, but I am not sure if that is how it tends to go and that I am now following a well trodden path to my extinction a year or two from now. Or,is it possiblethat the initial histopathology report may have been over stated.
I'd be grateful for any advice.
With best wishes and thanks to all.
Nigel.
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- July 18, 2014 at 6:48 pm
First Clark 4 and Stage IV are two different things. In most instances they don't even give you the Clark Level anymore.
I have read where some have started with a much larger melanoma than yours and progressed to Stage IV and have lived many years so it might be good to wait for the remainder of the pathology to come back before jumping the gun.
See a melanoma specialist if you can as they will be of more help.
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- July 18, 2014 at 6:48 pm
First Clark 4 and Stage IV are two different things. In most instances they don't even give you the Clark Level anymore.
I have read where some have started with a much larger melanoma than yours and progressed to Stage IV and have lived many years so it might be good to wait for the remainder of the pathology to come back before jumping the gun.
See a melanoma specialist if you can as they will be of more help.
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- July 18, 2014 at 6:48 pm
First Clark 4 and Stage IV are two different things. In most instances they don't even give you the Clark Level anymore.
I have read where some have started with a much larger melanoma than yours and progressed to Stage IV and have lived many years so it might be good to wait for the remainder of the pathology to come back before jumping the gun.
See a melanoma specialist if you can as they will be of more help.
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- July 18, 2014 at 9:21 pm
I agree with the previous reply – please see a melanoma specialist if you can. It's worth traveling for.
One thing my oncologist always says is that melanoma is THE most unpredictable cancers, so don't look at survival rates or articles or anything if you can avoid it. Wait at least until you have a full, clear picture of what is going on in your body.
Even if it is worst case scenario, there are so many new treatments that you should do your best to focus on that.
Please let us know what your results have to say.
laura
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- July 18, 2014 at 9:21 pm
I agree with the previous reply – please see a melanoma specialist if you can. It's worth traveling for.
One thing my oncologist always says is that melanoma is THE most unpredictable cancers, so don't look at survival rates or articles or anything if you can avoid it. Wait at least until you have a full, clear picture of what is going on in your body.
Even if it is worst case scenario, there are so many new treatments that you should do your best to focus on that.
Please let us know what your results have to say.
laura
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- July 18, 2014 at 9:21 pm
I agree with the previous reply – please see a melanoma specialist if you can. It's worth traveling for.
One thing my oncologist always says is that melanoma is THE most unpredictable cancers, so don't look at survival rates or articles or anything if you can avoid it. Wait at least until you have a full, clear picture of what is going on in your body.
Even if it is worst case scenario, there are so many new treatments that you should do your best to focus on that.
Please let us know what your results have to say.
laura
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- July 18, 2014 at 10:06 pm
Hi Nigel, I would have to agree with the other post about being stage 4. It sounds more like early days with sentinal nodes and all the fun of waiting on results so that you can be staged. If there is melanoma in the nodes you would then be in the stage 3 phase. I see that you are in Australia, I follow Jay Allen on face book http://www.sunbedban.com lots of great info on Melanoma in Australia. Best of luck with the sentinal nodes! Ed
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- July 18, 2014 at 10:06 pm
Hi Nigel, I would have to agree with the other post about being stage 4. It sounds more like early days with sentinal nodes and all the fun of waiting on results so that you can be staged. If there is melanoma in the nodes you would then be in the stage 3 phase. I see that you are in Australia, I follow Jay Allen on face book http://www.sunbedban.com lots of great info on Melanoma in Australia. Best of luck with the sentinal nodes! Ed
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- July 18, 2014 at 10:06 pm
Hi Nigel, I would have to agree with the other post about being stage 4. It sounds more like early days with sentinal nodes and all the fun of waiting on results so that you can be staged. If there is melanoma in the nodes you would then be in the stage 3 phase. I see that you are in Australia, I follow Jay Allen on face book http://www.sunbedban.com lots of great info on Melanoma in Australia. Best of luck with the sentinal nodes! Ed
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- July 19, 2014 at 6:00 am
Hi Nigel,
I, too, was recently diagnosed with malignant melanoma after going to the dermatologist to have a "wart" removed. It turned out to be a "Spitzoid melanoma" with a Breslow's depth of 1.9mm. I haven't had any imaging done (except a chest x-ray), but I've already had my WLE and Sentinel Node removal–sentinal node came back positive for microscopic mets. I'm going back to the doctor this coming Thursday, so I'll know more about a plan of action then.
Best of luck with everything–I know how nerve-wracking it is to be waiting for the path report!
Warm regards,
Val
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- July 19, 2014 at 6:00 am
Hi Nigel,
I, too, was recently diagnosed with malignant melanoma after going to the dermatologist to have a "wart" removed. It turned out to be a "Spitzoid melanoma" with a Breslow's depth of 1.9mm. I haven't had any imaging done (except a chest x-ray), but I've already had my WLE and Sentinel Node removal–sentinal node came back positive for microscopic mets. I'm going back to the doctor this coming Thursday, so I'll know more about a plan of action then.
Best of luck with everything–I know how nerve-wracking it is to be waiting for the path report!
Warm regards,
Val
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- September 26, 2014 at 4:42 pm
it's been a while sohereis my update:
I had the total lymph node removal from my left groin – they found aother lymph nodewith melanoma in it. Postop, I had a serious wound infection and 5 PE's in my lungs. I was in hospital for five weeks. I'm graded at 3b.
Now, I have been offered a trial – the COMBI – AD trial (worth googling it). I am BRAF positive. Its randomised and placebo controlled so I have a 50% chanceof getting the sugar pills rather than the real thing. The real thing is dabfrenib and tramethnib combined.
Is anyone else onthis trial? I am in Australia.
Many thanks in advance.
Nigel
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- September 26, 2014 at 4:42 pm
it's been a while sohereis my update:
I had the total lymph node removal from my left groin – they found aother lymph nodewith melanoma in it. Postop, I had a serious wound infection and 5 PE's in my lungs. I was in hospital for five weeks. I'm graded at 3b.
Now, I have been offered a trial – the COMBI – AD trial (worth googling it). I am BRAF positive. Its randomised and placebo controlled so I have a 50% chanceof getting the sugar pills rather than the real thing. The real thing is dabfrenib and tramethnib combined.
Is anyone else onthis trial? I am in Australia.
Many thanks in advance.
Nigel
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- September 26, 2014 at 4:42 pm
it's been a while sohereis my update:
I had the total lymph node removal from my left groin – they found aother lymph nodewith melanoma in it. Postop, I had a serious wound infection and 5 PE's in my lungs. I was in hospital for five weeks. I'm graded at 3b.
Now, I have been offered a trial – the COMBI – AD trial (worth googling it). I am BRAF positive. Its randomised and placebo controlled so I have a 50% chanceof getting the sugar pills rather than the real thing. The real thing is dabfrenib and tramethnib combined.
Is anyone else onthis trial? I am in Australia.
Many thanks in advance.
Nigel
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- July 19, 2014 at 6:00 am
Hi Nigel,
I, too, was recently diagnosed with malignant melanoma after going to the dermatologist to have a "wart" removed. It turned out to be a "Spitzoid melanoma" with a Breslow's depth of 1.9mm. I haven't had any imaging done (except a chest x-ray), but I've already had my WLE and Sentinel Node removal–sentinal node came back positive for microscopic mets. I'm going back to the doctor this coming Thursday, so I'll know more about a plan of action then.
Best of luck with everything–I know how nerve-wracking it is to be waiting for the path report!
Warm regards,
Val
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Tagged: cutaneous melanoma
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