› Forums › General Melanoma Community › SNB NED – now what?
- This topic has 30 replies, 11 voices, and was last updated 13 years, 11 months ago by
Janner.
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- December 27, 2010 at 5:40 pm
I have been coming down from a month long high after the results of my SNB were NED. I had lost 10lbs just from the stress of waiting for results. The pathologist didn't seem to be in any hurry. And I was also not very hopeful. The primary tumour was ugly – Breslow 2.6mm, Clarke's level iv, ulcerated with Mitosis of 6/mm2.
I have been coming down from a month long high after the results of my SNB were NED. I had lost 10lbs just from the stress of waiting for results. The pathologist didn't seem to be in any hurry. And I was also not very hopeful. The primary tumour was ugly – Breslow 2.6mm, Clarke's level iv, ulcerated with Mitosis of 6/mm2.
Now in the cold light of dawn, I am thinking things over and would ask for some advice. Firstly, I read that the SNB is only 90 to95% accurate. What about the missing 10%? Did they get the wrong node? Should one do the SNB again? Or does the cancer spread directly into the blood, and if so , can blood tests detect it?
The cancer surgeon sent me away, and told me to come back in 6 months for a check-up. Seems pretty casual to me, considering the speed with which this disease works. Also, here in Calgary, with a public health system, they will not authorize any scanning unless there is good cause, and apparently there is not at the moment.
My buddies are urging me to go down to one of the good cancer hospitals in the US. But what more can they do for me? All this would be on my own nickle, and I understand that PET scanning is very expensive. Still, if it furthers the cause, I will byte the bullet and pay for it.
Any suggestions on the next step?
Springbok
- Replies
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- December 27, 2010 at 7:36 pm
First of all congratulations on the great SNB results. That wait is brutal…mine lasted for 33 days of pure hell.Did they assign a stage to your melanoma? It sounds like you may be Stage 2B. My understanding is that this stage may call for further treatment depending upon the depth, though I have not seen any reports as to what depth would trigger the need for further treatment.
Out of curiosity, how many nodes did they dissect and biopsy in your SNB? They did four nodes in my SNB. My melanoma was not ulcerated, but was actually quite a bit deeper than yours (3.7mm), and they did not suggest any further treatment for me after my negative SNB. However, they did recommend examinations at my cancer center every 3 months for a year, with more examinations on a less-frequent basis going on indefinitely.
Mark (Stage 2) from California
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- December 28, 2010 at 12:11 am
Mark,
Thanks for your response.
I am embarressed to say that I did not ask the surgeon for my Stage, and she did not offer up the information either , but from what I have read, it sounds like Stage 2.
Also, they only took out one node. I will grant the Radioligist his due. He kept searching (and X-raying) for further nodes but could not find any more, nor could the surgeon with her geiger counter.
When you mention 3 monthly examinations at your cancer center, I take it, these are skin examinations and manual checks on the lymph nodes?
regards
S
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- December 28, 2010 at 1:35 am
Yes, I believe my examinations will be just physical in nature (looking and feeling). My cancer specialist said they have found more scans or x-rays are not warranted for stage 2. Though it sounded as much an economic judgement as it did a risk vs. reward judgement in favor of not exposing the patient to further radiation.My doctor never actually told me my stage either, but I will make that my first order of business in my first follow-up appointment in February. I am not clear on why my doctors would examine me every 3 months and yet your doctors are willing to have you wait 6 months before your next exam. Perhaps you should grill them on this point.
Were you awake for your SNB? That sounded like ane eye-witness account. I was under general anesthesia for mine, but the doctor told me later that they had a tough time finding my sentinel nodes too, which led them to extend my incision up to 3 inches long.
Best regards,
Mark (Stage 2A) from California -
- December 30, 2010 at 1:33 am
Mark… To follow up on a few points you raised:
If I understand the " plan" correctly, they want you to be examined by a Dermatologist every 6 months and by a surgeon/oncologist every 6 months. So that if you stagger the appointment dates by 3 months, you effectively get an examination every quarter, but see each of them only twice a year.
On the subject of whether I was awake for the SNB. … No I was under general anaesthetic. What they do at the Tom Baker – and I do not know if this is standard practice or not – they have an anesthetist inject you with the radioactive marker at the primary site the day before the operation. After a few hours, he then x-rays the sentinel area and tries to identify and locate the sentinel nodes. He will mark their position on your skin (which the surgeon told me they find difficult to interpret from 2D on the X-rays to 3D). The next day, the surgeon verifies the anesthetist's results with a Geiger counter
regards
Springbok
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- December 30, 2010 at 4:53 am
Actually, I will be seen every 3 months by only one doctor…a dermatologist who specializes in melanoma.At my cancer center I was injected with the dye by a nuclear medicine doctor at 8 am, then was operated on within a couple of hours for the SNB, then the WLE…all the same day and all under general anesthesia.
Regards,
Mark (Stage 2A) from California -
- December 30, 2010 at 4:53 am
Actually, I will be seen every 3 months by only one doctor…a dermatologist who specializes in melanoma.At my cancer center I was injected with the dye by a nuclear medicine doctor at 8 am, then was operated on within a couple of hours for the SNB, then the WLE…all the same day and all under general anesthesia.
Regards,
Mark (Stage 2A) from California -
- December 30, 2010 at 1:33 am
Mark… To follow up on a few points you raised:
If I understand the " plan" correctly, they want you to be examined by a Dermatologist every 6 months and by a surgeon/oncologist every 6 months. So that if you stagger the appointment dates by 3 months, you effectively get an examination every quarter, but see each of them only twice a year.
On the subject of whether I was awake for the SNB. … No I was under general anaesthetic. What they do at the Tom Baker – and I do not know if this is standard practice or not – they have an anesthetist inject you with the radioactive marker at the primary site the day before the operation. After a few hours, he then x-rays the sentinel area and tries to identify and locate the sentinel nodes. He will mark their position on your skin (which the surgeon told me they find difficult to interpret from 2D on the X-rays to 3D). The next day, the surgeon verifies the anesthetist's results with a Geiger counter
regards
Springbok
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- December 28, 2010 at 1:35 am
Yes, I believe my examinations will be just physical in nature (looking and feeling). My cancer specialist said they have found more scans or x-rays are not warranted for stage 2. Though it sounded as much an economic judgement as it did a risk vs. reward judgement in favor of not exposing the patient to further radiation.My doctor never actually told me my stage either, but I will make that my first order of business in my first follow-up appointment in February. I am not clear on why my doctors would examine me every 3 months and yet your doctors are willing to have you wait 6 months before your next exam. Perhaps you should grill them on this point.
Were you awake for your SNB? That sounded like ane eye-witness account. I was under general anesthesia for mine, but the doctor told me later that they had a tough time finding my sentinel nodes too, which led them to extend my incision up to 3 inches long.
Best regards,
Mark (Stage 2A) from California -
- December 28, 2010 at 12:11 am
Mark,
Thanks for your response.
I am embarressed to say that I did not ask the surgeon for my Stage, and she did not offer up the information either , but from what I have read, it sounds like Stage 2.
Also, they only took out one node. I will grant the Radioligist his due. He kept searching (and X-raying) for further nodes but could not find any more, nor could the surgeon with her geiger counter.
When you mention 3 monthly examinations at your cancer center, I take it, these are skin examinations and manual checks on the lymph nodes?
regards
S
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- December 27, 2010 at 7:36 pm
First of all congratulations on the great SNB results. That wait is brutal…mine lasted for 33 days of pure hell.Did they assign a stage to your melanoma? It sounds like you may be Stage 2B. My understanding is that this stage may call for further treatment depending upon the depth, though I have not seen any reports as to what depth would trigger the need for further treatment.
Out of curiosity, how many nodes did they dissect and biopsy in your SNB? They did four nodes in my SNB. My melanoma was not ulcerated, but was actually quite a bit deeper than yours (3.7mm), and they did not suggest any further treatment for me after my negative SNB. However, they did recommend examinations at my cancer center every 3 months for a year, with more examinations on a less-frequent basis going on indefinitely.
Mark (Stage 2) from California
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- December 27, 2010 at 9:19 pm
Yeah!!!! That's great that the SNB was clear! I can answer a few questions for you. Melanoma can pass in the blood but it's rare – 8% (I was one of them). At the present time there are no blood tests that detect it. Get to know your body is my best recommendation. I'm not telling you to freak out if you have an ache or pain but you will be your first line of defense.
Just like you feel there should be something you should be doing, I'm stage IV and having the same issue. Right now they are watching a spot on the lung because it's too small to biopsy, but when they knew I was NED nothing was offered as a preventative. I did do a year of Leukine but have had many recurrances since then and studies have shown it's no more effective than watch and wait – at least I felt as if I was doing something!!
As time goes on it does get easier and you will not have melanoma in your brain all of the time. I don't know that you would have been told anything different in a cancer center in the US.
Wishing you a lifetime of NED!!!! For now, jump back into your life and enjoy everyday.
Linda
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- December 27, 2010 at 10:12 pm
Hi,
PET scanning is expensive, seems like my insurance is charged around $5000 for every scan I have had, give or take a few hundred dollars. Also I have about 2 dozen melanoma tumors and subqs which have not shown up on PET scans…they are "too" small…….I have had lots of cancer in my leg…….and that is the only place so far and the PET scan has never lit up on any of my spots….I have found each and every one of them….and they are biopsied positive (well not all of them, now I am doing ipi, after doing many other treatments.) So get to know your body! Look for changes in your skin.
Good luck in your decision of treatment…….
Vermont_Donna
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- December 27, 2010 at 10:12 pm
Hi,
PET scanning is expensive, seems like my insurance is charged around $5000 for every scan I have had, give or take a few hundred dollars. Also I have about 2 dozen melanoma tumors and subqs which have not shown up on PET scans…they are "too" small…….I have had lots of cancer in my leg…….and that is the only place so far and the PET scan has never lit up on any of my spots….I have found each and every one of them….and they are biopsied positive (well not all of them, now I am doing ipi, after doing many other treatments.) So get to know your body! Look for changes in your skin.
Good luck in your decision of treatment…….
Vermont_Donna
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- December 27, 2010 at 9:19 pm
Yeah!!!! That's great that the SNB was clear! I can answer a few questions for you. Melanoma can pass in the blood but it's rare – 8% (I was one of them). At the present time there are no blood tests that detect it. Get to know your body is my best recommendation. I'm not telling you to freak out if you have an ache or pain but you will be your first line of defense.
Just like you feel there should be something you should be doing, I'm stage IV and having the same issue. Right now they are watching a spot on the lung because it's too small to biopsy, but when they knew I was NED nothing was offered as a preventative. I did do a year of Leukine but have had many recurrances since then and studies have shown it's no more effective than watch and wait – at least I felt as if I was doing something!!
As time goes on it does get easier and you will not have melanoma in your brain all of the time. I don't know that you would have been told anything different in a cancer center in the US.
Wishing you a lifetime of NED!!!! For now, jump back into your life and enjoy everyday.
Linda
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- December 27, 2010 at 11:14 pm
It's tough being diagnosed and then asked to wait 6 months. Are you being treated at Cross Cancer Institute in Edmonton? That's where oncologist Dr. Smyllie works and he would be a good person to have on your side if need be. Alberta and Quebec are the only two provinces that approve PET scans for treatment, Ontario I believe is on 'an apply to government for approval basis'. I have had four in two years BUT then again, my cancer doesn't seem to want to graduate to NED so there is a reason (of course CT scans are routine as well). Don't forget too many scans can cause cancer as well so if not needed all the better. Good advice has been given…watch your body closely and take care of yourself. Val in Montreal.
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- December 27, 2010 at 11:14 pm
It's tough being diagnosed and then asked to wait 6 months. Are you being treated at Cross Cancer Institute in Edmonton? That's where oncologist Dr. Smyllie works and he would be a good person to have on your side if need be. Alberta and Quebec are the only two provinces that approve PET scans for treatment, Ontario I believe is on 'an apply to government for approval basis'. I have had four in two years BUT then again, my cancer doesn't seem to want to graduate to NED so there is a reason (of course CT scans are routine as well). Don't forget too many scans can cause cancer as well so if not needed all the better. Good advice has been given…watch your body closely and take care of yourself. Val in Montreal.
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- December 28, 2010 at 3:14 am
It's interesting you mention the issue of scans. I was very dubious about the value of doing an SNB and went back to talk the cancer surgeon a number of times with more questions. Not once did she bring up the subject of scans. I suspect, as others have mentioned, that the health region is putting pressure on the oncs to be very sparing with this scarce resource
Eventually, after learning more about the PET scan, I asked her if we could do one of those in place of an SNB. Her (correct) response was that the PETcould not pick up micro-mets.
For the record, I am being treated at the Tom Baker clinic
Regards
S
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- December 28, 2010 at 3:14 am
It's interesting you mention the issue of scans. I was very dubious about the value of doing an SNB and went back to talk the cancer surgeon a number of times with more questions. Not once did she bring up the subject of scans. I suspect, as others have mentioned, that the health region is putting pressure on the oncs to be very sparing with this scarce resource
Eventually, after learning more about the PET scan, I asked her if we could do one of those in place of an SNB. Her (correct) response was that the PETcould not pick up micro-mets.
For the record, I am being treated at the Tom Baker clinic
Regards
S
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- December 27, 2010 at 11:20 pm
Hi there, sorry you had to join us but welcome just the same.
I was 2A diagnosed 7 1/2 years earlier. 2.06 mm, Clark IV, no ulceration, minimal mititic rate. SNB was NED. Then an x-ray for back issues turned up a nodule in my lung last summer. I am now stage IV 8 years after my initial diagnosis. Mine also spread via the bloodstream, my lymph nodes are still clear.
I was one of the lucky one's who was a complete responder to IL-2. Surgery removed my lung met, and IL-2 the remaining met in my chest wall muscle.
Back then there was only one trial of a month high dose INF for stage 2. Now there are a few more trials to choose from. Personally that would be the route I would take. For ME, I wasn't a great fan of INF and it didn't seem to provide an extended life. Your research on the topic will be mixed, even with the experts.
If I were in your shoes, I would try a clinical trial if something other than INF were offered like vaccine etc. I would hesitate to do an inhibitor and save that as my ace in the hole. There are problems with resistance after taking inhibitors after a few months so wouldn't waste it on NED stage 2B.
It does get better I promise. Life will return to "normal". Just keep up with routine appts. and possibly some baseline things like a chest x-ray. If it comes back, it usually does so within the first 2-3 years. Don't look at me, I was an exception to the rule on so many levels. Thankfully, one of those exceptions was being a complete responder to IL-2.
BTW – I never had any symptoms and with the recommended screenings (which now drop routine chest x-ray), my met still never would have been detected. My chiropracter saved my life. Oh, and yes, my back still hurts. It is a muscle thing. Belive it or not, even as a new stage IV, my life has returned to "normal". You adapt, even getting to the point of "my disease isn't too bad, or is stable, and I am not actively dying, therefore life is good and relatively normal". Scanxiety never gets better though……
Don't worry about the what if's, it will only drive you crazy. Deal with – what do you plan to do from here on out. Information and a plan, even if it is only observation, is still a plan. In some way it gives you control over something we don't have control over. The research and understanding of this disease is rapidly developing. Keep apprised of it so you can know what to ask or what to do. Stay NED forever.
Best of luck,
Kim K – stage 2A 7/02, stage IV 8/09, currently NED since 7/10.
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- December 27, 2010 at 11:20 pm
Hi there, sorry you had to join us but welcome just the same.
I was 2A diagnosed 7 1/2 years earlier. 2.06 mm, Clark IV, no ulceration, minimal mititic rate. SNB was NED. Then an x-ray for back issues turned up a nodule in my lung last summer. I am now stage IV 8 years after my initial diagnosis. Mine also spread via the bloodstream, my lymph nodes are still clear.
I was one of the lucky one's who was a complete responder to IL-2. Surgery removed my lung met, and IL-2 the remaining met in my chest wall muscle.
Back then there was only one trial of a month high dose INF for stage 2. Now there are a few more trials to choose from. Personally that would be the route I would take. For ME, I wasn't a great fan of INF and it didn't seem to provide an extended life. Your research on the topic will be mixed, even with the experts.
If I were in your shoes, I would try a clinical trial if something other than INF were offered like vaccine etc. I would hesitate to do an inhibitor and save that as my ace in the hole. There are problems with resistance after taking inhibitors after a few months so wouldn't waste it on NED stage 2B.
It does get better I promise. Life will return to "normal". Just keep up with routine appts. and possibly some baseline things like a chest x-ray. If it comes back, it usually does so within the first 2-3 years. Don't look at me, I was an exception to the rule on so many levels. Thankfully, one of those exceptions was being a complete responder to IL-2.
BTW – I never had any symptoms and with the recommended screenings (which now drop routine chest x-ray), my met still never would have been detected. My chiropracter saved my life. Oh, and yes, my back still hurts. It is a muscle thing. Belive it or not, even as a new stage IV, my life has returned to "normal". You adapt, even getting to the point of "my disease isn't too bad, or is stable, and I am not actively dying, therefore life is good and relatively normal". Scanxiety never gets better though……
Don't worry about the what if's, it will only drive you crazy. Deal with – what do you plan to do from here on out. Information and a plan, even if it is only observation, is still a plan. In some way it gives you control over something we don't have control over. The research and understanding of this disease is rapidly developing. Keep apprised of it so you can know what to ask or what to do. Stay NED forever.
Best of luck,
Kim K – stage 2A 7/02, stage IV 8/09, currently NED since 7/10.
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- December 28, 2010 at 8:23 pm
Springbok,
As I say frequently, take a deep breath, count your blessings and you'd be better off if you don't hang around here much.
Keep aware with regular checkups. Stay with a recognized melanoma center in the event that there is a breakthrough on a "preventative" treatment. Stay aware of your own body and most of all LIVE.
Jerry from Cape Cod
Stage IV
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- December 28, 2010 at 8:23 pm
Springbok,
As I say frequently, take a deep breath, count your blessings and you'd be better off if you don't hang around here much.
Keep aware with regular checkups. Stay with a recognized melanoma center in the event that there is a breakthrough on a "preventative" treatment. Stay aware of your own body and most of all LIVE.
Jerry from Cape Cod
Stage IV
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- December 30, 2010 at 3:22 am
I live in Canada, BC, but lived in Calgary and Edmonton as well. Melanoma care different throughout Canada, however with your proximity to edmonton you are fortunate to have Dr. Smylie. He will no doubt do a PET/CT scan if he deems it necessary, and it shouldn't cost you anything, if he says you don't need one, then I would be comfortable with that.
So sorry to hear about your diagnosis. You must do a couple of things.
1. Get all your pathology reports, and keep them in a file, track every phone call and every appointment.
2. Get to Edmonton and see Dr. Smylie, he is one, if not the best melanoma specialist in Canada.
3. Don't panic, but take control, and make sure you take advantage of Dr.Smylie when he is so close, there are people here who have traveled from NFLD to see him. You can phone Cross Cancer centre for an appointment.
4.Have a list of questions for each appointment and take someone with you….remember dermatologists are not(very often) oncologists, and nor are surgeons..you need a melanoma specialist…
Please make sure you come to this site often and with any questyions and concerns…the site is reliable and your questions will be answered competently. I have been coming here for 10 years.
Cheers Joan R
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- December 30, 2010 at 3:22 am
I live in Canada, BC, but lived in Calgary and Edmonton as well. Melanoma care different throughout Canada, however with your proximity to edmonton you are fortunate to have Dr. Smylie. He will no doubt do a PET/CT scan if he deems it necessary, and it shouldn't cost you anything, if he says you don't need one, then I would be comfortable with that.
So sorry to hear about your diagnosis. You must do a couple of things.
1. Get all your pathology reports, and keep them in a file, track every phone call and every appointment.
2. Get to Edmonton and see Dr. Smylie, he is one, if not the best melanoma specialist in Canada.
3. Don't panic, but take control, and make sure you take advantage of Dr.Smylie when he is so close, there are people here who have traveled from NFLD to see him. You can phone Cross Cancer centre for an appointment.
4.Have a list of questions for each appointment and take someone with you….remember dermatologists are not(very often) oncologists, and nor are surgeons..you need a melanoma specialist…
Please make sure you come to this site often and with any questyions and concerns…the site is reliable and your questions will be answered competently. I have been coming here for 10 years.
Cheers Joan R
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- January 3, 2011 at 1:23 am
HI-
Congrats on your awesome New Year's news!! I usually don't respond to many posts, but I felt the exact same way when I (thank goodness) got my own NED from my SNB. (I am Stage 1B) I was like "AHHHHHHHHHHH!!!!!! AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"… now what???????????????????????????????????????????????????????? Oh, see you in SIX months… What?!?! How am I going to wait 6 mos??? It's all so overwhelming.
I got my NED from my SNB in October & was going nuts not knowing what to do next. I paid on my own to get a 2nd opinion from a Mel specialist (just to hear it was all ok again) and I was able to get my doc to request a PET Scan. That scan was just a month ago so I don't have my bill from that (and I'm sure it's pretty bad even with insurance!!!) but I really wanted more peace of mind. There was no way I could wait 6mos w/out another form of reassurance. Oh well, I guess that's what we all want who have been diagnosed w/ Mel… reassurance that it won't come back.
Good luck to you… i wish you a lifetime of NED!!! 🙂
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- January 3, 2011 at 2:55 am
Just adding a little note here for other stage IB's (and even stage II's) who might be reading this. PET scans are rarely given for early stages. They do not show microscopic disease. This is why a SNB is done and not a PET scan to determine if melanoma has spread to the lymph nodes. PET scans just don't have the small resolution needed. They also are notorious for false positives, and false negatives too. Many people end up doing other diagnostic tests to rule out "positives" shown on a PET scan. So while it might give some comfort, please know a PET scan is hardly a guarantee of anything. (Not knocking your PET scan, simone, just clarifying what it does and doesn't show so others are aware of the pros and cons).
Being newly diagnosed sucks. Everything revolves around melanoma and learning to live with the idea of cancer can be tough. For early stages, there is nothing you can really do, either. No treatments, no nothing. It's hard when you lose that feeling of "control". The key is to be vigilant, not paranoid. Watch your body for change. If something is bothering you…. ask yourself if it would have bothered you BEFORE your diagnosis. (Easy to be paranoid after a cancer diagnosis). Something that doesn't seem right, see your doctor. Over time, it does get easier. The first year is the toughest.
Best wishes,
Janner
Stage IB since 1992, 3 MM primaries
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- January 3, 2011 at 2:55 am
Just adding a little note here for other stage IB's (and even stage II's) who might be reading this. PET scans are rarely given for early stages. They do not show microscopic disease. This is why a SNB is done and not a PET scan to determine if melanoma has spread to the lymph nodes. PET scans just don't have the small resolution needed. They also are notorious for false positives, and false negatives too. Many people end up doing other diagnostic tests to rule out "positives" shown on a PET scan. So while it might give some comfort, please know a PET scan is hardly a guarantee of anything. (Not knocking your PET scan, simone, just clarifying what it does and doesn't show so others are aware of the pros and cons).
Being newly diagnosed sucks. Everything revolves around melanoma and learning to live with the idea of cancer can be tough. For early stages, there is nothing you can really do, either. No treatments, no nothing. It's hard when you lose that feeling of "control". The key is to be vigilant, not paranoid. Watch your body for change. If something is bothering you…. ask yourself if it would have bothered you BEFORE your diagnosis. (Easy to be paranoid after a cancer diagnosis). Something that doesn't seem right, see your doctor. Over time, it does get easier. The first year is the toughest.
Best wishes,
Janner
Stage IB since 1992, 3 MM primaries
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- January 3, 2011 at 1:23 am
HI-
Congrats on your awesome New Year's news!! I usually don't respond to many posts, but I felt the exact same way when I (thank goodness) got my own NED from my SNB. (I am Stage 1B) I was like "AHHHHHHHHHHH!!!!!! AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"… now what???????????????????????????????????????????????????????? Oh, see you in SIX months… What?!?! How am I going to wait 6 mos??? It's all so overwhelming.
I got my NED from my SNB in October & was going nuts not knowing what to do next. I paid on my own to get a 2nd opinion from a Mel specialist (just to hear it was all ok again) and I was able to get my doc to request a PET Scan. That scan was just a month ago so I don't have my bill from that (and I'm sure it's pretty bad even with insurance!!!) but I really wanted more peace of mind. There was no way I could wait 6mos w/out another form of reassurance. Oh well, I guess that's what we all want who have been diagnosed w/ Mel… reassurance that it won't come back.
Good luck to you… i wish you a lifetime of NED!!! 🙂
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