› Forums › General Melanoma Community › Melanoma at 2.2mm or deeper with negative SLNB?
- This topic has 24 replies, 13 voices, and was last updated 5 years, 7 months ago by
Pwest55.
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- July 14, 2018 at 6:12 pm
Senator John McCain was diagnosed with melanoma in his past – did you know? He had 4 of them excised, one being more serious at 2.2 mm depth. He had the SLNB for this which turned out negative. I was wondering who else here with 2.2 mm or deeper has had negative node biopsies. Mine was 2.6 mm and non-ulcerated, but I opted for no SLNB for personal and educated reasons. Curious…
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- July 14, 2018 at 7:55 pm
My wife's primary was greater than 4mm deep and ulcerated. Her SLNB was clear. PET/CT was clear at time of WLE and SLNB. Six months later two brain mets showed up. We're now a year after the appearance of the brain mets and no new mets have appeared.
She had craniotomy, gamma knife, is on combo immunotherapy and is currently NED.
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- July 14, 2018 at 8:48 pm
I have a friend whose mole was 16mm deep, yep 16 not 1.6. SLNB was negative, it was not ulcerated, and going on almost 3 years with follow up scans have all been clear.
Mine on the other hand was 1.9mm ulcerated and well, from the title under my name you see where that got me.
Moral of the story: each case is very unique.
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- July 14, 2018 at 10:16 pm
Mine… 9 mm, negative SLNB, Desmoplastic, 4 months later Mets to the sacrum(bone). Curious as to what your educated reasons for not having SNLB.
Brian
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- July 14, 2018 at 11:03 pm
Brian, I've done lots of research and the reasons I opted out of SLNB are:
1) It is not any kind of treatment.
2) It can't make any difference on patient survival.
3) Melanoma can travel past the sentinel node and into another node that may be missed during SLNB.
4) Melanoma can travel via bloodstream only and miss nodes entirely.
5) Having a positive SLNB result does not mean the melanoma has actually spread to distant organs or that it ever will. It only shows that the melanoma has the ability to spread, hence Stage 3 diagnosis.
6) Finally, having either a positive or negative SLNB result can give sort of an answer right after surgery, but there still is no guarantee to know what the melanoma will or won't do after that.
For me, I didn't think having this done was going to give me any answers except info on more precise staging.
Roxanne
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- July 15, 2018 at 1:42 am
Roxanne,Thanks for sharing that. It's incredible how circumstaces changed in the year and a half since I was diagnosed. Ipi was the only adjuvant treatment approved at the time for me, and the SLNB was a piece of the puzzle in deciding to "wait and see" or risk the more serious Ipi side effects. Today I would have forgone the SNLB also, and gone straight to a PD-! treatment.
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- July 15, 2018 at 2:36 am
You're welcome. By the way, I have not started any treatment yet, and am watching and waiting for the time being. Best wishes to you and everyone here.
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- July 15, 2018 at 4:58 pm
I think folks with melanoma should seek and attain the treatment they feel is best for them. However, there is one fallacy in the ideas proposed. If you have only a local lesion, which is then excised, and then decide NOT to attain a sentinel node biopsy….Roxanne is correct in noting that you have not necessarily protected yourself from further melanoma tumors, nor determined whether or not melanoma is lurking elsewhere in your body. She is correct that the SLNB is done for staging purposes. All good so far.
BUT!!! Where the rubber hits the road is that very thing. Staging. If you are not Stage III you do not qualify for adjuvant therapy as they have been approved by the FDA nor in trials as they are written. That leads to two problems: 1. Lots of docs are not comfortable prescribing something 'off label' – ie putting you on anti-PD-1 as an adjuvant when you are only diagnosed as a Stage 1 melanoma patient. 2. Insurance companies will not pay for anti-PD-1 for a Stage 1 melanoma patient. So….if you are cool with NOT seeking adjuvant treatment, then yes….it probably is not going to make any difference whether you do the SLNB or not. However, if you are a person who would want treatment should your SLNB reveal that you have a positive node and are, in fact, a Stage III melanoma patient, then you need the SLNB done.
CLND (complete lymph node dissection) is a very different thing and is no longer advised for those with a positive sentinel node. I think there is where some folks get confused. Just say'n. At any rate here is some science/research on the subject of both SLNB and CLND for those of you who may be interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=sentinel
I wish you all the best. Celeste
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- July 15, 2018 at 6:51 pm
Good advice, Celeste. However, if someone is only a Stage 1, don't doctors recommend NOT having the SLNB for this stage since it's very curable with excision only? I am a Stage 2A (as far as I know), and SLNB was recommended to me but I had opted out. My oncologist offered adjuvant treatment to me as a Stage 2 patient, and that is when I decided to "watch and wait" for a while. So, I got the impression Stage 2 patients can opt for adjuvant therapy with no problem. Is this correct?
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- July 15, 2018 at 9:17 pm
I think it's fairly unusual to be offered additional therapy at stage 2. My wife wasn't when she was stage 2. Then there is the issue of whether your insurance will pay for it at stage 2. Since each of my wife's Opdivo doses cost $32,000 and she gets one every two weeks, that gets pricey pretty quickly. Stage 3 adjuvant therapy, however, is FDA approved and covered by most insurance, so there is a big benefit to finding out if you have melanoma in the sentinel nodes or not.
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- July 16, 2018 at 12:21 am
Doragsda, is correct. Stage III patients (or Stage IV NED patients, whose mets have been removed surgically or radiologically in the case of brain mets) are the only ones, thus far, for whom adjuvant therapy is FDA approved. Stage I patients with lesions of 1mm or greater (though there are those who say >/= 0.75mm should also be included) are those who are offered/recommended undergo SLNB in order to stage further….and thereby have adjuvant care offered to them, should they have a positive node, which makes them Stage III. By definition, Stage II melanoma patients, who have thicker lesions in the first place, are obviously offered SLNB as well. Here is a basic breakdown of melanoma staging: https://www.aimatmelanoma.org/stages-of-melanoma/ Here is the definition of Stage II melanoma (which, generally speaking is simply a thicker lesion than those that are categorized as Stage I – neither Stage I nor Stage II have mets or positive nodes):
Additionally, we KNOW that adjuvant therapy is beneficial:
So, I have a hard time understanding foregoing SLNB. It is true that you could have a negative SLNB or positive SLNB and never progress. But learning you have Stage III melanoma is a pretty big deal. Luckily, we now have treatment options if you are Stage III and choose to use them. However, if you know that you do NOT want to partake in adjuvant therapy, then it is true that SLNB will offer you no information.
My best to all. Celeste
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- July 16, 2018 at 10:26 pm
I actually think since SLNB isn't as accurate as we'd like, that it should be replaced with a genetic test on the excised tumor. So far this type of test has shown to be quite accurate, and I feel insurance companies should recognize this instead of SLNB. A friend had their tumor tested this way at Castle Biosciences, and it came back "high risk" which should tell everyone he would be the right candidate for adjuvant therapy. The way it is now – whether the patient wants to or not, he/she is pretty much obligated to get SLNB in order for ins. to pay for treatments (if results are positive). If they just have the genetic test done, it's much easier on the patient too, since the excised tumor is immediately sent to the company for testing – that's all. I'm hoping in the near future that SLNB won't be standard procedure any more for newly diagnosed mel patients. (This is good: They are shying away from complete node dissections now.) Just my 2 cents.
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- July 16, 2018 at 11:23 pm
Roxanne218, with respect when people make claims like you have about changing the standard of care based on a test (Castle) that is not proven and is not the standard of care. You make is sound like melanoma patients should make decision about their lives based on a test that lacks credible data!!! The reason that CLND are not being performed any longer as standard a care is because of real science and the MSLt-2 trial that found no survival benefit. If Castle could actual publish results based on a properly designed trial then your theory would have legs to stand on.
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- September 30, 2018 at 12:52 am
I had a 9mm deep nodular melanoma with a negative SLNB. Decided to join a clinical trial with opdivo. Had one treatment and my blood tests showed thyroid issues. My choice was to continue with the trial with a 100 percent chance of permanent thyroid damage or quit. I choose to quit and am now one steroids to calm my immune system down. Hopefully my thyroid will return to normal.
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- July 16, 2018 at 1:26 pm
My Husbands original lesion was 10.5 mm and the SNB was clear. He chose the wait and see. He 8 or 9 months with no more and then it came back very near the original spot. He later advanced to Stage IV with an unresectable lesion in the Cervical Spine C1-C2 and lesions in the liver and lungs. Went on a clinical trial and has been cancer free for 6 years.
You can read more in his profile if interested.
Judy loving wife of Gene ( Stage IV and now NED for 6 years after the Clinical Trial of Ipi or Yervoy as it is now called and GMCSF))
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- July 16, 2018 at 2:59 pm
February 2016, my tumor was 3.6mm deep and ulcerated in my upper middle back. Had a wide excision with clear margins and my SLNB was negative. However, found out on July 2 that it's back – in my right shoulder and most likely in my lungs. Starting immunotherapy this month. Good luck to you!
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- July 16, 2018 at 11:59 pm
Its easy to say now that I would have skipped the pain and long recovery period for my SLNB as the Surgeon also borrowed enough skin from there to put the 2' inch patch on my primary site. Now PD1 avalable clinical trial at stage 2.
Nivolumab in Treating Patients With Stage IIB-IIC Melanoma That Can Be Removed by Surgery https://clinicaltrials.gov/ct2/show/NCT03405155
Best To ALL
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- July 17, 2018 at 12:15 am
I think this study is awesome. I hope things turn out well for these peeps!! However, you don't get out of having an SLNB. Here is a quote from the trial inclusion criteria: "Patients must have a negative sentinel lymph node biopsy." It makes sense that a negative SLNB is required! Else wise….how would you know that these patients are Stage II melanoma patients??? By definition, Stage II (as well as Stage I) have NEGATIVE sentinel nodes. Whether you like that as the staging parameter or not….right now…that's the deal. c
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- July 17, 2018 at 3:14 am
8mm+ Amelanotic nodular (bisected by a shave biopsy and actually grew back a good bit before wide excision which was alarming)
SNB clear staged 2c after excision
offered and declined interferon
castle dx 2b
2 years no recurrence but I do feel like a ticking time bomb sometimes
Just try to enjoy every day and do all I can to live healthy.
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- July 18, 2018 at 12:17 am
An interesting study on this subject. Any Thoughts? https://www.sciencedirect.com/science/article/pii/S019096221830149X
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- July 18, 2018 at 2:31 am
Interesting but retrospective, which is good to find patterns but without a prospective trial you can't say for sure if concept is accurate.
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- July 23, 2018 at 8:48 pm
My WLE and SLNB were done April 19 , with a thickness of 14.25mm and two negative nodes. Pet scan and Mri brain negative. Im very happy nodes where negative , and only treatment now is just close(every 3 months) follow up with both dermatologist and oncology surgeon. But cant help but worry some days.
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- July 24, 2018 at 6:05 am
I was close at 2.06 mm, no ulceration and negative SNB. Progressed to stage IV a few years later with no recurrance to lymph nodes. A lower back x-ray for other reasons revealed a lung met, and PET showed a second met in my pectoralis muscle. After lung surgery and IL-2, I have been NED for 9 years.
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