› Forums › Cutaneous Melanoma Community › Mixed news from WLE/SNB
- This topic has 39 replies, 7 voices, and was last updated 10 years, 9 months ago by
Socks.
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- February 20, 2014 at 6:46 pm
Finally got the results back from last week's WLE and SNB.
WLE shows they got all of the melanoma in that area: everything else is clean, so they can go ahead and put a skin graft back there (it was on the back of my head) and that can start healing up. I am so ready to be rid of this damn bolster, you have no idea. (Well, some of you probably do. ^_^)
The SNB though… they took 4 nodes from 3 sites in my neck, and every single node came back positive for cancer. So next Tuesday is the dissection (and the skin graft for my head), and we go tomorrow to discuss what-all we do from here (besides the surgery). There'll be a CT tomorrow, too, and I'll have an MRI and maybe a PET at some point, but that's a bit harder to schedule (we're essentially sneaking in the CT scan).
My nodular melanoma was 8.40mm at initial biopsy, after only a couple months' of growth. I was clinging to the no ulceration/satellite lesions and low mitotic rate for hope, but with the news that it's on the move, I'm thinking we're probably looking at Stage III or IV here? I'll ask for sure about the staging tomorrow, of course.
I just could use a fill-up of the hope tank here.
Oh, there is one dodged bullet: they took a chest X-ray on our first visit there and that shows no evidence of lung nodules or metastasis at all, so no matter where the melanoma's wandered off to, it hasn't gotten to the lungs (yet anyway).
- Replies
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- February 20, 2014 at 7:26 pm
I'm sorry, Socks. Having 3/4 positive sentinel nodes is not happy news. Sounds like you have a good surgeon, though– finding all those nodes requires a lot of skill and experience!
With positive nodes you are at least Stage III. Which Stage III or whether you are a Stage IV will depend on the results of your CLND and scans (I hope your MRI is a brain scan. Is it?) Once you get those results, you will be able to start thinking about clinical trials and/or a treatment plan.
Try to hang tough. Have a glass of wine (or 2) at dinner tonight to mellow out some. Keep reminding yourself that there are a heck of a lot more treatment options out there than there were 2 or 3 years ago and you have good reasons to be optimistic. Yes, this is a tense and anxious time, but you WILL pull through!
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- February 20, 2014 at 7:26 pm
I'm sorry, Socks. Having 3/4 positive sentinel nodes is not happy news. Sounds like you have a good surgeon, though– finding all those nodes requires a lot of skill and experience!
With positive nodes you are at least Stage III. Which Stage III or whether you are a Stage IV will depend on the results of your CLND and scans (I hope your MRI is a brain scan. Is it?) Once you get those results, you will be able to start thinking about clinical trials and/or a treatment plan.
Try to hang tough. Have a glass of wine (or 2) at dinner tonight to mellow out some. Keep reminding yourself that there are a heck of a lot more treatment options out there than there were 2 or 3 years ago and you have good reasons to be optimistic. Yes, this is a tense and anxious time, but you WILL pull through!
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- February 20, 2014 at 7:49 pm
I do have a very good surgeon; in fact, he's published papers on sentinel lymph node biopsies for head/neck melanoma. 🙂 I'm very lucky to have him. (Dr. Scott A. McLean, University of Michigan, if anyone's interested.)
I don't know what the MRI will be yet; we don't even have it scheduled. I'd be awfully surprised if it won't be a brain scan though. That's probably stuff we'll discuss tomorrow when we see the doctor. The very nice lady I talked to on the phone (whose name I have already forgotten) just said I'd have to an MRI, in addition to a CT/PET, but that we'd have to schedule the PET and MRI, whereas she can just sort of sneak me in to the CT rotation tomorrow.
What's the CLND? I'm still learning all the acronyms. And thank you for your reply. (Though I can't have wine; even if I liked it, I'm on Zoloft (for anxiety/depression) and Hydrocodone (for the post-WLE/SNB pain). Sneaking in a rum & coke is sounding like a good idea anyway though…)
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- February 20, 2014 at 8:12 pm
A CLND is a "complete lymph node dissection". The sentinel nodes are just the first ones in a chain of lymph nodes that serve a given region of your body. Since melanoma spreads primarily through the lymph system first, if one or more of the sentinel nodes are positive you have to wonder if it has progressed to other, more distant lymph nodes in the same region. So a surgeon will remove all of the lymph nodes in the region and a pathologist will examine them for the presence of melanoma.
There is some controversy surrounding CLNDs; I think there is a clinical trial going on now comparing CLND to just observation with ultrasound. The reasons to do a CLND are: 1) remove any melanoma-infected nodes to try to slow or stop the spread of the disease and 2) to more accurately determine whether and how much the melanoma has spread to assist you and your doctors in future treatment decisions. The reasons not to do CLND are: 1) the procedure itself is fairly involved surgery which has associated risks, 2) many people struggle with lymphedema after a CLND and that can be pretty uncomfortable, and 3) there is no solid evidence that having a CLND decreaes your risk of recurrence or lengthens your life (hence the clinical trial).
If you are already Stage IV, there is not much point in a CLND–you are going to need some type of systemic treatment anyway. You will need to discuss the pros and cons of CLND with your doctors.
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- February 20, 2014 at 8:12 pm
A CLND is a "complete lymph node dissection". The sentinel nodes are just the first ones in a chain of lymph nodes that serve a given region of your body. Since melanoma spreads primarily through the lymph system first, if one or more of the sentinel nodes are positive you have to wonder if it has progressed to other, more distant lymph nodes in the same region. So a surgeon will remove all of the lymph nodes in the region and a pathologist will examine them for the presence of melanoma.
There is some controversy surrounding CLNDs; I think there is a clinical trial going on now comparing CLND to just observation with ultrasound. The reasons to do a CLND are: 1) remove any melanoma-infected nodes to try to slow or stop the spread of the disease and 2) to more accurately determine whether and how much the melanoma has spread to assist you and your doctors in future treatment decisions. The reasons not to do CLND are: 1) the procedure itself is fairly involved surgery which has associated risks, 2) many people struggle with lymphedema after a CLND and that can be pretty uncomfortable, and 3) there is no solid evidence that having a CLND decreaes your risk of recurrence or lengthens your life (hence the clinical trial).
If you are already Stage IV, there is not much point in a CLND–you are going to need some type of systemic treatment anyway. You will need to discuss the pros and cons of CLND with your doctors.
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- February 20, 2014 at 8:12 pm
A CLND is a "complete lymph node dissection". The sentinel nodes are just the first ones in a chain of lymph nodes that serve a given region of your body. Since melanoma spreads primarily through the lymph system first, if one or more of the sentinel nodes are positive you have to wonder if it has progressed to other, more distant lymph nodes in the same region. So a surgeon will remove all of the lymph nodes in the region and a pathologist will examine them for the presence of melanoma.
There is some controversy surrounding CLNDs; I think there is a clinical trial going on now comparing CLND to just observation with ultrasound. The reasons to do a CLND are: 1) remove any melanoma-infected nodes to try to slow or stop the spread of the disease and 2) to more accurately determine whether and how much the melanoma has spread to assist you and your doctors in future treatment decisions. The reasons not to do CLND are: 1) the procedure itself is fairly involved surgery which has associated risks, 2) many people struggle with lymphedema after a CLND and that can be pretty uncomfortable, and 3) there is no solid evidence that having a CLND decreaes your risk of recurrence or lengthens your life (hence the clinical trial).
If you are already Stage IV, there is not much point in a CLND–you are going to need some type of systemic treatment anyway. You will need to discuss the pros and cons of CLND with your doctors.
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- February 20, 2014 at 8:18 pm
Ah, okay. It sounded to me like they're going to go ahead and do the CLND on Tuesday. The woman on the phone just called it a "neck dissection" (since that's where the nodes are). I've been joking about how it sounds like a beheading – that'd certainly keep me from worrying about cancer! ^_^;;; (defensive humor for the win)
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- February 20, 2014 at 8:18 pm
Ah, okay. It sounded to me like they're going to go ahead and do the CLND on Tuesday. The woman on the phone just called it a "neck dissection" (since that's where the nodes are). I've been joking about how it sounds like a beheading – that'd certainly keep me from worrying about cancer! ^_^;;; (defensive humor for the win)
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- February 20, 2014 at 8:18 pm
Ah, okay. It sounded to me like they're going to go ahead and do the CLND on Tuesday. The woman on the phone just called it a "neck dissection" (since that's where the nodes are). I've been joking about how it sounds like a beheading – that'd certainly keep me from worrying about cancer! ^_^;;; (defensive humor for the win)
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- February 20, 2014 at 7:49 pm
I do have a very good surgeon; in fact, he's published papers on sentinel lymph node biopsies for head/neck melanoma. 🙂 I'm very lucky to have him. (Dr. Scott A. McLean, University of Michigan, if anyone's interested.)
I don't know what the MRI will be yet; we don't even have it scheduled. I'd be awfully surprised if it won't be a brain scan though. That's probably stuff we'll discuss tomorrow when we see the doctor. The very nice lady I talked to on the phone (whose name I have already forgotten) just said I'd have to an MRI, in addition to a CT/PET, but that we'd have to schedule the PET and MRI, whereas she can just sort of sneak me in to the CT rotation tomorrow.
What's the CLND? I'm still learning all the acronyms. And thank you for your reply. (Though I can't have wine; even if I liked it, I'm on Zoloft (for anxiety/depression) and Hydrocodone (for the post-WLE/SNB pain). Sneaking in a rum & coke is sounding like a good idea anyway though…)
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- February 20, 2014 at 7:49 pm
I do have a very good surgeon; in fact, he's published papers on sentinel lymph node biopsies for head/neck melanoma. 🙂 I'm very lucky to have him. (Dr. Scott A. McLean, University of Michigan, if anyone's interested.)
I don't know what the MRI will be yet; we don't even have it scheduled. I'd be awfully surprised if it won't be a brain scan though. That's probably stuff we'll discuss tomorrow when we see the doctor. The very nice lady I talked to on the phone (whose name I have already forgotten) just said I'd have to an MRI, in addition to a CT/PET, but that we'd have to schedule the PET and MRI, whereas she can just sort of sneak me in to the CT rotation tomorrow.
What's the CLND? I'm still learning all the acronyms. And thank you for your reply. (Though I can't have wine; even if I liked it, I'm on Zoloft (for anxiety/depression) and Hydrocodone (for the post-WLE/SNB pain). Sneaking in a rum & coke is sounding like a good idea anyway though…)
-
- February 20, 2014 at 7:26 pm
I'm sorry, Socks. Having 3/4 positive sentinel nodes is not happy news. Sounds like you have a good surgeon, though– finding all those nodes requires a lot of skill and experience!
With positive nodes you are at least Stage III. Which Stage III or whether you are a Stage IV will depend on the results of your CLND and scans (I hope your MRI is a brain scan. Is it?) Once you get those results, you will be able to start thinking about clinical trials and/or a treatment plan.
Try to hang tough. Have a glass of wine (or 2) at dinner tonight to mellow out some. Keep reminding yourself that there are a heck of a lot more treatment options out there than there were 2 or 3 years ago and you have good reasons to be optimistic. Yes, this is a tense and anxious time, but you WILL pull through!
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- February 20, 2014 at 8:45 pm
Hi, Socks! Our stories are very similar. My primary melanoma was behind my ear and had only been growing for less than a month. During my WLE/SNB, my doctor was able to get clear margins and removed 8 lymph nodes from 3 areas. 4/8 came back positive. However, when they did the neck dissection, no more positive nodes were found! He removed dozens at that time. My PET scan came back clear and now I am doing clinical trial E1609 and I was randomized for high dose ipi. I'll be thinking of you this week!
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- February 20, 2014 at 8:45 pm
Hi, Socks! Our stories are very similar. My primary melanoma was behind my ear and had only been growing for less than a month. During my WLE/SNB, my doctor was able to get clear margins and removed 8 lymph nodes from 3 areas. 4/8 came back positive. However, when they did the neck dissection, no more positive nodes were found! He removed dozens at that time. My PET scan came back clear and now I am doing clinical trial E1609 and I was randomized for high dose ipi. I'll be thinking of you this week!
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- February 21, 2014 at 12:39 am
Dear Socks Sorry for the news. There will be alot of decisions coming fast. Please ask your doctors all the quesions you think of. The fact is that a CLND does provide improved survival in your circumstance. I will paste in the study just released from the New England Journal of Medicine.
- This long-term follow-up analysis of a phase III study confirmed the benefit of sentinel lymph node biopsy vs observation in patients with cutaneous melanoma. The 10-year disease-free survival (DFS) rates for patients with intermediate-thickness and thick melanomas were 71.3% vs 64.7% and 50.7% vs 40.5%, respectively. In addition, 10-year distant DFS and 10-year melanoma-specific survival were significantly better in the biopsy vs the observation group (HR, 0.62; and HR, 0.56).
- Sentinel lymph node biopsy provided accurate information on staging, improved regional disease control, and prolonged melanoma-specific survival.
ABSTRACT
Background
Sentinel-node biopsy, a minimally invasive procedure for regional melanoma staging, was evaluated in a phase 3 trial.
Methods
We evaluated outcomes in 2001 patients with primary cutaneous melanomas randomly assigned to undergo wide excision and nodal observation, with lymphadenectomy for nodal relapse (observation group), or wide excision and sentinel-node biopsy, with immediate lymphadenectomy for nodal metastases detected on biopsy (biopsy group).
Results
No significant treatment-related difference in the 10-year melanoma-specific survival rate was seen in the overall study population (20.8% with and 79.2% without nodal metastases). Mean (±SE) 10-year disease-free survival rates were significantly improved in the biopsy group, as compared with the observation group, among patients with intermediate-thickness melanomas, defined as 1.20 to 3.50 mm (71.3±1.8% vs. 64.7±2.3%; hazard ratio for recurrence or metastasis, 0.76; P = 0.01), and those with thick melanomas, defined as >3.50 mm (50.7±4.0% vs. 40.5±4.7%; hazard ratio, 0.70; P = 0.03). Among patients with intermediate-thickness melanomas, the 10-year melanoma-specific survival rate was 62.1±4.8% among those with metastasis versus 85.1±1.5% for those without metastasis (hazard ratio for death from melanoma, 3.09; P<0.001); among patients with thick melanomas, the respective rates were 48.0±7.0% and 64.6±4.9% (hazard ratio, 1.75; P = 0.03). Biopsy-based management improved the 10-year rate of distant disease–free survival (hazard ratio for distant metastasis, 0.62; P = 0.02) and the 10-year rate of melanoma-specific survival (hazard ratio for death from melanoma, 0.56; P = 0.006) for patients with intermediate-thickness melanomas and nodal metastases. Accelerated-failure-time latent-subgroup analysis was performed to account for the fact that nodal status was initially known only in the biopsy group, and a significant treatment benefit persisted.
Conclusions
Biopsy-based staging of intermediate-thickness or thick primary melanomas provides important prognostic information and identifies patients with nodal metastases who may benefit from immediate complete lymphadenectomy. Biopsy-based management prolongs disease-free survival for all patients and prolongs distant disease–free survival and melanoma-specific survival for patients with nodal metastases from intermediate-thickness melanomas.
The New England Journal of Medicine
Final Trial Report of Sentinel-Node Biopsy Versus Nodal Observation in Melanoma
N. Engl. J. Med 2014 Feb 13;370(7)599-609, DL Morton, JF Thompson, AJ Cochran, N Mozzillo, OE Nieweg, DF Roses, HJ Hoekstra, CP Karakousis, CA Puleo, BJ Coventry, M Kashani-Sabet, BM Smithers, E Paul, WG Kraybill, JG McKinnon, H-J Wang, R Elashoff, MB FariesI have underlined the important part of the conclusion. Good luck. -
- February 21, 2014 at 12:39 am
Dear Socks Sorry for the news. There will be alot of decisions coming fast. Please ask your doctors all the quesions you think of. The fact is that a CLND does provide improved survival in your circumstance. I will paste in the study just released from the New England Journal of Medicine.
- This long-term follow-up analysis of a phase III study confirmed the benefit of sentinel lymph node biopsy vs observation in patients with cutaneous melanoma. The 10-year disease-free survival (DFS) rates for patients with intermediate-thickness and thick melanomas were 71.3% vs 64.7% and 50.7% vs 40.5%, respectively. In addition, 10-year distant DFS and 10-year melanoma-specific survival were significantly better in the biopsy vs the observation group (HR, 0.62; and HR, 0.56).
- Sentinel lymph node biopsy provided accurate information on staging, improved regional disease control, and prolonged melanoma-specific survival.
ABSTRACT
Background
Sentinel-node biopsy, a minimally invasive procedure for regional melanoma staging, was evaluated in a phase 3 trial.
Methods
We evaluated outcomes in 2001 patients with primary cutaneous melanomas randomly assigned to undergo wide excision and nodal observation, with lymphadenectomy for nodal relapse (observation group), or wide excision and sentinel-node biopsy, with immediate lymphadenectomy for nodal metastases detected on biopsy (biopsy group).
Results
No significant treatment-related difference in the 10-year melanoma-specific survival rate was seen in the overall study population (20.8% with and 79.2% without nodal metastases). Mean (±SE) 10-year disease-free survival rates were significantly improved in the biopsy group, as compared with the observation group, among patients with intermediate-thickness melanomas, defined as 1.20 to 3.50 mm (71.3±1.8% vs. 64.7±2.3%; hazard ratio for recurrence or metastasis, 0.76; P = 0.01), and those with thick melanomas, defined as >3.50 mm (50.7±4.0% vs. 40.5±4.7%; hazard ratio, 0.70; P = 0.03). Among patients with intermediate-thickness melanomas, the 10-year melanoma-specific survival rate was 62.1±4.8% among those with metastasis versus 85.1±1.5% for those without metastasis (hazard ratio for death from melanoma, 3.09; P<0.001); among patients with thick melanomas, the respective rates were 48.0±7.0% and 64.6±4.9% (hazard ratio, 1.75; P = 0.03). Biopsy-based management improved the 10-year rate of distant disease–free survival (hazard ratio for distant metastasis, 0.62; P = 0.02) and the 10-year rate of melanoma-specific survival (hazard ratio for death from melanoma, 0.56; P = 0.006) for patients with intermediate-thickness melanomas and nodal metastases. Accelerated-failure-time latent-subgroup analysis was performed to account for the fact that nodal status was initially known only in the biopsy group, and a significant treatment benefit persisted.
Conclusions
Biopsy-based staging of intermediate-thickness or thick primary melanomas provides important prognostic information and identifies patients with nodal metastases who may benefit from immediate complete lymphadenectomy. Biopsy-based management prolongs disease-free survival for all patients and prolongs distant disease–free survival and melanoma-specific survival for patients with nodal metastases from intermediate-thickness melanomas.
The New England Journal of Medicine
Final Trial Report of Sentinel-Node Biopsy Versus Nodal Observation in Melanoma
N. Engl. J. Med 2014 Feb 13;370(7)599-609, DL Morton, JF Thompson, AJ Cochran, N Mozzillo, OE Nieweg, DF Roses, HJ Hoekstra, CP Karakousis, CA Puleo, BJ Coventry, M Kashani-Sabet, BM Smithers, E Paul, WG Kraybill, JG McKinnon, H-J Wang, R Elashoff, MB FariesI have underlined the important part of the conclusion. Good luck. -
- February 21, 2014 at 12:39 am
Dear Socks Sorry for the news. There will be alot of decisions coming fast. Please ask your doctors all the quesions you think of. The fact is that a CLND does provide improved survival in your circumstance. I will paste in the study just released from the New England Journal of Medicine.
- This long-term follow-up analysis of a phase III study confirmed the benefit of sentinel lymph node biopsy vs observation in patients with cutaneous melanoma. The 10-year disease-free survival (DFS) rates for patients with intermediate-thickness and thick melanomas were 71.3% vs 64.7% and 50.7% vs 40.5%, respectively. In addition, 10-year distant DFS and 10-year melanoma-specific survival were significantly better in the biopsy vs the observation group (HR, 0.62; and HR, 0.56).
- Sentinel lymph node biopsy provided accurate information on staging, improved regional disease control, and prolonged melanoma-specific survival.
ABSTRACT
Background
Sentinel-node biopsy, a minimally invasive procedure for regional melanoma staging, was evaluated in a phase 3 trial.
Methods
We evaluated outcomes in 2001 patients with primary cutaneous melanomas randomly assigned to undergo wide excision and nodal observation, with lymphadenectomy for nodal relapse (observation group), or wide excision and sentinel-node biopsy, with immediate lymphadenectomy for nodal metastases detected on biopsy (biopsy group).
Results
No significant treatment-related difference in the 10-year melanoma-specific survival rate was seen in the overall study population (20.8% with and 79.2% without nodal metastases). Mean (±SE) 10-year disease-free survival rates were significantly improved in the biopsy group, as compared with the observation group, among patients with intermediate-thickness melanomas, defined as 1.20 to 3.50 mm (71.3±1.8% vs. 64.7±2.3%; hazard ratio for recurrence or metastasis, 0.76; P = 0.01), and those with thick melanomas, defined as >3.50 mm (50.7±4.0% vs. 40.5±4.7%; hazard ratio, 0.70; P = 0.03). Among patients with intermediate-thickness melanomas, the 10-year melanoma-specific survival rate was 62.1±4.8% among those with metastasis versus 85.1±1.5% for those without metastasis (hazard ratio for death from melanoma, 3.09; P<0.001); among patients with thick melanomas, the respective rates were 48.0±7.0% and 64.6±4.9% (hazard ratio, 1.75; P = 0.03). Biopsy-based management improved the 10-year rate of distant disease–free survival (hazard ratio for distant metastasis, 0.62; P = 0.02) and the 10-year rate of melanoma-specific survival (hazard ratio for death from melanoma, 0.56; P = 0.006) for patients with intermediate-thickness melanomas and nodal metastases. Accelerated-failure-time latent-subgroup analysis was performed to account for the fact that nodal status was initially known only in the biopsy group, and a significant treatment benefit persisted.
Conclusions
Biopsy-based staging of intermediate-thickness or thick primary melanomas provides important prognostic information and identifies patients with nodal metastases who may benefit from immediate complete lymphadenectomy. Biopsy-based management prolongs disease-free survival for all patients and prolongs distant disease–free survival and melanoma-specific survival for patients with nodal metastases from intermediate-thickness melanomas.
The New England Journal of Medicine
Final Trial Report of Sentinel-Node Biopsy Versus Nodal Observation in Melanoma
N. Engl. J. Med 2014 Feb 13;370(7)599-609, DL Morton, JF Thompson, AJ Cochran, N Mozzillo, OE Nieweg, DF Roses, HJ Hoekstra, CP Karakousis, CA Puleo, BJ Coventry, M Kashani-Sabet, BM Smithers, E Paul, WG Kraybill, JG McKinnon, H-J Wang, R Elashoff, MB FariesI have underlined the important part of the conclusion. Good luck.
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- February 20, 2014 at 8:45 pm
Hi, Socks! Our stories are very similar. My primary melanoma was behind my ear and had only been growing for less than a month. During my WLE/SNB, my doctor was able to get clear margins and removed 8 lymph nodes from 3 areas. 4/8 came back positive. However, when they did the neck dissection, no more positive nodes were found! He removed dozens at that time. My PET scan came back clear and now I am doing clinical trial E1609 and I was randomized for high dose ipi. I'll be thinking of you this week!
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- February 21, 2014 at 1:24 am
Dear Socks,
Sorry that you are being hit with so much, so quickly. But, here's some good news! The article above DOES provide data (collected over 10 years!!!!) showing that folks with even ONE positive sentinel node (the one that lights up nearest the tumor site) who then had a complete lymphadenectomy (removal of all lymph nodes in that particular area) did MUCH BETTER than the patients who went with observation!!! On top of that…I'm still here!!!! More than ten years after my initial melanoma lesion and after TWO complete lymph node disections in both arm pits. Yes, there have been many bumps in the road….but I'm still here and I am certain that, though it is not a sure thing….the fact that I did have complete disections helped.
I recently made a blog post about this very issue and the article that is noted above, with some additional comments from docs with a good deal of knowledge in this particular area. (You can google "chaotically precise…" and look at the Feb 15, 2014 post if you are interested.)
Additionally, I would have a serious talk with my doc about my options and the still possible benefit of the dissection even if (and all my fingers and toes are crossed hoping that CT's and MRI's show NOTHING!!!) you do turn out to have disease elsewhere. Many (if not all!) of the systemic treatments work best with the lowest possible disease burden.
Sorry for so many worries and all the hard choices that I know you will soon be faced with. Hang in there. Wishing you my very best. Celeste
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- February 21, 2014 at 1:24 am
Dear Socks,
Sorry that you are being hit with so much, so quickly. But, here's some good news! The article above DOES provide data (collected over 10 years!!!!) showing that folks with even ONE positive sentinel node (the one that lights up nearest the tumor site) who then had a complete lymphadenectomy (removal of all lymph nodes in that particular area) did MUCH BETTER than the patients who went with observation!!! On top of that…I'm still here!!!! More than ten years after my initial melanoma lesion and after TWO complete lymph node disections in both arm pits. Yes, there have been many bumps in the road….but I'm still here and I am certain that, though it is not a sure thing….the fact that I did have complete disections helped.
I recently made a blog post about this very issue and the article that is noted above, with some additional comments from docs with a good deal of knowledge in this particular area. (You can google "chaotically precise…" and look at the Feb 15, 2014 post if you are interested.)
Additionally, I would have a serious talk with my doc about my options and the still possible benefit of the dissection even if (and all my fingers and toes are crossed hoping that CT's and MRI's show NOTHING!!!) you do turn out to have disease elsewhere. Many (if not all!) of the systemic treatments work best with the lowest possible disease burden.
Sorry for so many worries and all the hard choices that I know you will soon be faced with. Hang in there. Wishing you my very best. Celeste
-
- February 21, 2014 at 1:24 am
Dear Socks,
Sorry that you are being hit with so much, so quickly. But, here's some good news! The article above DOES provide data (collected over 10 years!!!!) showing that folks with even ONE positive sentinel node (the one that lights up nearest the tumor site) who then had a complete lymphadenectomy (removal of all lymph nodes in that particular area) did MUCH BETTER than the patients who went with observation!!! On top of that…I'm still here!!!! More than ten years after my initial melanoma lesion and after TWO complete lymph node disections in both arm pits. Yes, there have been many bumps in the road….but I'm still here and I am certain that, though it is not a sure thing….the fact that I did have complete disections helped.
I recently made a blog post about this very issue and the article that is noted above, with some additional comments from docs with a good deal of knowledge in this particular area. (You can google "chaotically precise…" and look at the Feb 15, 2014 post if you are interested.)
Additionally, I would have a serious talk with my doc about my options and the still possible benefit of the dissection even if (and all my fingers and toes are crossed hoping that CT's and MRI's show NOTHING!!!) you do turn out to have disease elsewhere. Many (if not all!) of the systemic treatments work best with the lowest possible disease burden.
Sorry for so many worries and all the hard choices that I know you will soon be faced with. Hang in there. Wishing you my very best. Celeste
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- February 21, 2014 at 5:40 am
Hi Socks,
Glad you are posting here. While this type of news may not be the best, hopefully you are feeling good about having a plan in place and to be moving forward/taking action!
It sounds like the oncologist's office is moving in the right direction, but you may want to push for a brain MRI and PET/CT. Is there another facility you might be able to go to if the regular office is full? I'm a bit surprised those scans haven't been done already to confirm that the rest of your body is clear. Like someone else mentioned, if there is spread elsewhere beyond the lymph nodes, systemic treatment is a better option because it will go after all the cancer cells while surgery will just take out some (and you typically can't start systemic treatment, like Zelboraf or Yervoy, until you have recovered from surgery. Just a good thing to rule out.
My dad was diagnosed over a year ago with a scalp primary and also had a dissection that sounds similar to what your onc is planning so the notes on his case/in my profile here might be of interest to you.
Keep us posted! Thinking good thoughts your way!
Doro
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- February 21, 2014 at 5:40 am
Hi Socks,
Glad you are posting here. While this type of news may not be the best, hopefully you are feeling good about having a plan in place and to be moving forward/taking action!
It sounds like the oncologist's office is moving in the right direction, but you may want to push for a brain MRI and PET/CT. Is there another facility you might be able to go to if the regular office is full? I'm a bit surprised those scans haven't been done already to confirm that the rest of your body is clear. Like someone else mentioned, if there is spread elsewhere beyond the lymph nodes, systemic treatment is a better option because it will go after all the cancer cells while surgery will just take out some (and you typically can't start systemic treatment, like Zelboraf or Yervoy, until you have recovered from surgery. Just a good thing to rule out.
My dad was diagnosed over a year ago with a scalp primary and also had a dissection that sounds similar to what your onc is planning so the notes on his case/in my profile here might be of interest to you.
Keep us posted! Thinking good thoughts your way!
Doro
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- February 21, 2014 at 6:26 am
Technically I don't yet have an oncologist. Dr. McLean is the surgeon who did the WLE/SNB. We're getting the CT done tomorrow/later today (depending on your timezone) because the University of Michigan Melanoma Clinic (which is where my dermatologist suggested I go after the biopsy on the mass I had removed came back malignant) can apparently squeeze in CTs whenever but MRIs and PETs need to be scheduled. I'm sure we'll discuss scheduling for those when I talk with Dr. Misko (Dr. McLean's PA) today (Friday). It was mentioned to me that these would be scans my oncologist will want done, and I believe part of the agenda for today is getting me set up with an onc there at U of M.
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- February 21, 2014 at 6:26 am
Technically I don't yet have an oncologist. Dr. McLean is the surgeon who did the WLE/SNB. We're getting the CT done tomorrow/later today (depending on your timezone) because the University of Michigan Melanoma Clinic (which is where my dermatologist suggested I go after the biopsy on the mass I had removed came back malignant) can apparently squeeze in CTs whenever but MRIs and PETs need to be scheduled. I'm sure we'll discuss scheduling for those when I talk with Dr. Misko (Dr. McLean's PA) today (Friday). It was mentioned to me that these would be scans my oncologist will want done, and I believe part of the agenda for today is getting me set up with an onc there at U of M.
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- February 21, 2014 at 6:26 am
Technically I don't yet have an oncologist. Dr. McLean is the surgeon who did the WLE/SNB. We're getting the CT done tomorrow/later today (depending on your timezone) because the University of Michigan Melanoma Clinic (which is where my dermatologist suggested I go after the biopsy on the mass I had removed came back malignant) can apparently squeeze in CTs whenever but MRIs and PETs need to be scheduled. I'm sure we'll discuss scheduling for those when I talk with Dr. Misko (Dr. McLean's PA) today (Friday). It was mentioned to me that these would be scans my oncologist will want done, and I believe part of the agenda for today is getting me set up with an onc there at U of M.
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- February 21, 2014 at 5:40 am
Hi Socks,
Glad you are posting here. While this type of news may not be the best, hopefully you are feeling good about having a plan in place and to be moving forward/taking action!
It sounds like the oncologist's office is moving in the right direction, but you may want to push for a brain MRI and PET/CT. Is there another facility you might be able to go to if the regular office is full? I'm a bit surprised those scans haven't been done already to confirm that the rest of your body is clear. Like someone else mentioned, if there is spread elsewhere beyond the lymph nodes, systemic treatment is a better option because it will go after all the cancer cells while surgery will just take out some (and you typically can't start systemic treatment, like Zelboraf or Yervoy, until you have recovered from surgery. Just a good thing to rule out.
My dad was diagnosed over a year ago with a scalp primary and also had a dissection that sounds similar to what your onc is planning so the notes on his case/in my profile here might be of interest to you.
Keep us posted! Thinking good thoughts your way!
Doro
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- February 22, 2014 at 3:49 pm
Okay, Tuesday's the CLND and the skin graft. I'll have my laptop with me at the hospital (it's inpatient, after all), so I'll keep up on the board. MRI is scheduled for the 10th and it is of the head. Should get yesterday's CT results this Monday. Still have the bolster on, but they at least took the stitches out of my neck. 'Course, they're about to just open practically my entire neck up in a few days, so I guess that's a small victory.
Is there anything I should keep in mind post-CLND? I know they're going to have drains in my neck immediately following the surgery, but anyone else had a neck dissection who can give me some idea of what it'll be like afterwards (pain, fatigue, general quality of life stuff)? I know everyone's different, but some idea of what to expect when I wake up is better than nothing. ^_^;;
Thanks for your time and all your help, everyone!
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- February 22, 2014 at 3:49 pm
Okay, Tuesday's the CLND and the skin graft. I'll have my laptop with me at the hospital (it's inpatient, after all), so I'll keep up on the board. MRI is scheduled for the 10th and it is of the head. Should get yesterday's CT results this Monday. Still have the bolster on, but they at least took the stitches out of my neck. 'Course, they're about to just open practically my entire neck up in a few days, so I guess that's a small victory.
Is there anything I should keep in mind post-CLND? I know they're going to have drains in my neck immediately following the surgery, but anyone else had a neck dissection who can give me some idea of what it'll be like afterwards (pain, fatigue, general quality of life stuff)? I know everyone's different, but some idea of what to expect when I wake up is better than nothing. ^_^;;
Thanks for your time and all your help, everyone!
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- February 25, 2014 at 4:04 pm
Even if Stage IV, don't give up. (Hopefully it stopped before getting to the lungs, but a watch will be kept on the lungs for the future.) I had innumerable lung tumors in 2007, still have them, innumerable new lung tumors in 2009. Still going on with life, the tumors have stabilized, not gone away. Have they tested your tumors for the DNA mutation they contain? This can help determine future treatments options. There are manymore now thatn the only one feasible in 2007.
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- February 25, 2014 at 4:04 pm
Even if Stage IV, don't give up. (Hopefully it stopped before getting to the lungs, but a watch will be kept on the lungs for the future.) I had innumerable lung tumors in 2007, still have them, innumerable new lung tumors in 2009. Still going on with life, the tumors have stabilized, not gone away. Have they tested your tumors for the DNA mutation they contain? This can help determine future treatments options. There are manymore now thatn the only one feasible in 2007.
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- February 25, 2014 at 4:04 pm
Even if Stage IV, don't give up. (Hopefully it stopped before getting to the lungs, but a watch will be kept on the lungs for the future.) I had innumerable lung tumors in 2007, still have them, innumerable new lung tumors in 2009. Still going on with life, the tumors have stabilized, not gone away. Have they tested your tumors for the DNA mutation they contain? This can help determine future treatments options. There are manymore now thatn the only one feasible in 2007.
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- February 22, 2014 at 3:49 pm
Okay, Tuesday's the CLND and the skin graft. I'll have my laptop with me at the hospital (it's inpatient, after all), so I'll keep up on the board. MRI is scheduled for the 10th and it is of the head. Should get yesterday's CT results this Monday. Still have the bolster on, but they at least took the stitches out of my neck. 'Course, they're about to just open practically my entire neck up in a few days, so I guess that's a small victory.
Is there anything I should keep in mind post-CLND? I know they're going to have drains in my neck immediately following the surgery, but anyone else had a neck dissection who can give me some idea of what it'll be like afterwards (pain, fatigue, general quality of life stuff)? I know everyone's different, but some idea of what to expect when I wake up is better than nothing. ^_^;;
Thanks for your time and all your help, everyone!
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Tagged: cutaneous melanoma
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