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April 8, 2013 at 8:10 pm #21179
Just a quick recap-
My dad (age 59) was diagnosed about 2 weeks ago with nodular melanoma. Pathology showed it was 3.1mm, non-ulcerated, mitotic rate of 2 and clear margins. He went in today for a SLNB and WLE.
The mole removed was on his neck near his shoulder. They injected the radioactive dye and looked for the path it took to the lymph nodes to find the sentinel lymph node (hopefully that’s right-I think thats what they said). They did a total of 6 injections and watched for close to 1.5 hours-the dye didn’t travel at all. The guy that was doing the test said he’s been doing it for years and it’s rare for it to not travel unless there is no lymph pathway for the tumor to have taken.
After 1.5 hours, they took him back and did a WLE. The surgeon then probed around with a gamma knife (I think thats what it was ) and said he could feel some lymph nodes but none “lit up” and he could not find the sentinel lymph node. So, they just did a WLE to ensure it doesn’t come back and told him he’ll have a PET scan and f/u with an oncologist for 4-5 years.
So, is this normal?! The surgeon was very non-commital (typical of surgeons I know-I work with a bunch of them
). Said there are no guarantees and he can’t say it hasn’t spread through the blood stream and thats why the PET scan will be done. He did have a chest x-ray last week that was normal with nothing noted in that and all his lab work to date has been normal. He said that chances are minimal that its in the lymph nodes since they couldn’t find a sentinel node with both the dye and the gamma knife but once more, no guarantees….
Any feedback? Thanks.
MeganApril 8, 2013 at 8:25 pm #60013
A little more info…I’m looking up stuff and found one site that said if they can’t determine lymph node involvement, they should treat as stage III and assume it’s in the lymph nodes. This was on a case of a woman who they tried to do it and the dye kept washing out of her nodes (?). On my dad today, the dye just sat there as if it had nowhere to travel per the tech. It wouldn’t move towards the nodes at all. And when they used the probe during surgery, nothing lit up. Is this good or bad?!April 8, 2013 at 10:10 pm #60014Catherine PooleKeymaster So they didn’t take a sample of the first few nodes anyway? This is all relatively new enough technology that there may not be a certain answer. True, it can travel the blood stream, and nodular tends to skip the early biological phases which is why it is consider more high risk. Are you at a leading melanoma center? Would your dad be up for a second opinion?April 8, 2013 at 11:24 pm #60015 We’re not at a leading melanoma center right now. They did not sample any nodes as the surgeon felt certain that none were the senitel ones since they used both the dye and the gamma knife probe and none lit up. He’ll get a PET scan and see an oncologist and I guess we’ll go from there.April 9, 2013 at 3:12 pm #60016chas66Participant The way it was explained to me by my oncologists is that there is a possibility that they wouldn’t be able to identify a lymph node with the dye. Mine was able to be indentified. Not normal but has happenned. In England, they don’t do SLNB (although I believe they are starting to embrace it). You have the WLE and you decide from there. The SLNB is a tool (one of many) to determine if the cancer has spread. Some people in the US opt for the just the WLE and forego the SLNB.
So, it’s not common but it does happen. It may be helpful to try to work with what you have and what you know. See how the PET scan goes. I never had a PET scan but I do know that CAT scans would show enlarged lymph nodes.
Good luck.April 9, 2013 at 5:56 pm #60017
Of course they do SLNB in England and at the same time as the WLE and have been doing so for some years. The guidelines followed are based on the latest AJCC report, namely for melanomas of stage 1b and above.April 9, 2013 at 8:23 pm #60018washoegalParticipant I am not sure if this is really that unusually. The dye didn’t move for me either. They tried warming the areas up, changing position, finally injecting more dye and staring again and they got results! Boy was I happy because otherwise the surgeon was going to have to go after two separate location due to the location of my tumor. If I were you, I be a lot more comfortable if they could get a look at those darn sentinel lymph nodes.
MaryApril 9, 2013 at 8:25 pm #60019cohanjaParticipant
SNB is not a guarantee and it is not a treatment. It is a staging tool only. Of course the information from a negative result might bring some peace of mind nonetheless.April 10, 2013 at 12:44 am #60020tbeauParticipant True, it can travel the blood stream, and nodular tends to skip the early biological phases which is why it is consider more high risk.
Can you explain what it means that nodular tends to skip the early biological phases for me? I have nodular and I know its higher risk but I’m not sure what that means. Thank you.April 10, 2013 at 1:54 pm #60021chas66Participantbon15 wrote:
Of course they do SLNB in England and at the same time as the WLE and have been doing so for some years. The guidelines followed are based on the latest AJCC report, namely for melanomas of stage 1b and above.
Are you saying it’s a common practice in England? Did you get that info from your oncologist? My oncologist’s stated it’s not standard protocol in England.April 10, 2013 at 5:49 pm #60022
The profession in the UK adhere to the “Revised UK guidelines for the management of cutaneous melanoma”. this states that”SLNB can be considered in stage 1B melanoma and upwards” but also says “SLNB is normally considered for patients with melanoma more than or equal to 1mm”.
I have no reason to believe that these guidelines are not followed throughout the UK although there may be regional differences regarding easy access to a centre equipped to perform the procedure. I would imagine, though, that any clued up patient who knows that he should strictly have an SNLB would have no trouble getting one free under the NHS (if not already automatically offered one) if he fell within the eligibilty criteria.
I do not see an oncologist as I am stage 1A (0.72mm depth, zero mitosis) and instead see a consultant dermatologist. He advised me that even if I’d been stage 1B I wouldn’t get an SNLB as my melanoma was less than 1mm in depth. Even though I was prepared to pay privately, he said he knew of no one he could refer me to as it would be outside the guidelines. This is why it is so frustrating when there are posts on this board which say you are on the borderline for needing an SLNB if your depth is 0.75mm or more, regardless of Stage 1A or 1B, as there is very little chance of having the procedure in the UK if your depth is between 0.75mm and 1mm even if you are prepared to pay!April 10, 2013 at 7:13 pm #60023Catherine PooleKeymaster
I don’t know if this will make you feel any better, but I was a .76 with ulceration, mitosis greater than 1, vertical growth phase, but had no SLNB, because it wasn’t invented yet. I am fine today, 23 years later.April 11, 2013 at 9:44 am #600247spiderParticipant I would trust the advise of the Drs and experts like Catherine and not let the opinions of some people that cause you unnecessary stress. The criteria is what it is for a reason, and the odds are so low when the melanoma is less than 1mm period. Nowadays if ya have ulceration or some mitosis they’ll do the SLNB at.75mm, but even then very low odds. Back of my arm is still numb a year later after my SLNB, if I didn’t have that little mitosis I would of happily done without that procedure.April 11, 2013 at 4:23 pm #60025 Thanks Catherine, you give me hope!
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