› Forums › General Melanoma Community › What do you think my Oncologist will suggest?
- This topic has 56 replies, 18 voices, and was last updated 13 years, 7 months ago by nicoli.
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- May 10, 2011 at 2:16 am
Hi I'm Becca, stage III. I don't know if I'm 3a, b or c… can't seem to get an answer from my doc. Anyways, had Melanoma on my upper chest, had a wide excision done, Lymph node biopsy in right armpit was positive for cancer. Had all lymph nodes removed 1 1/2 weeks ago in that arm, they all came up negative, so only the initial node was cancerous.
Hi I'm Becca, stage III. I don't know if I'm 3a, b or c… can't seem to get an answer from my doc. Anyways, had Melanoma on my upper chest, had a wide excision done, Lymph node biopsy in right armpit was positive for cancer. Had all lymph nodes removed 1 1/2 weeks ago in that arm, they all came up negative, so only the initial node was cancerous.
My oncologist has been waiting for surgical to get done with their part before he suggested further treatment, and now they are done. I'm scheduled to see him the day after tomorrow and I'm wondering what he's going to suggest. I know he's not a big fan of Interferon. As he said, it makes you feel like you have a bad case of the flu for a whole year. That doesn't sound like fun. My mom says she's going to push for observation, but I want to be proactive and make sure it doesn't come back. I don't want to just "wait and see". So what do you think my oncologist will suggest? And if he does suggest only observation, what does that mean? What kind of scans and/or tests and how often?
Thanks for any feedback…
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- May 10, 2011 at 2:53 am
Becca,
If you only had one node that was mel and there were no other issues like the node was matted, I believe you would be stage 3A. To my knowledge if 3A there really aren't many options besides interfuron or wait and watch. There are no standard practices for scanning so each Dr. is different. You might be scanned every 3 months for a year and then it would go to 6 months and then to a year. That being said, some major cancer centers like U of Michigan do not scan stage 3 without symptoms.
Have you thought about doing just the high dose month of interfuron? Some Doctors might suggest a year of GMCSF but that would be off label and not FDA approved. I hope others have suggestions for you. Watch and wait is difficult, that's what I'm doing at Stage IV but for many it works!
Let us know what the Dr suggests,
Linda
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- May 10, 2011 at 2:53 am
Becca,
If you only had one node that was mel and there were no other issues like the node was matted, I believe you would be stage 3A. To my knowledge if 3A there really aren't many options besides interfuron or wait and watch. There are no standard practices for scanning so each Dr. is different. You might be scanned every 3 months for a year and then it would go to 6 months and then to a year. That being said, some major cancer centers like U of Michigan do not scan stage 3 without symptoms.
Have you thought about doing just the high dose month of interfuron? Some Doctors might suggest a year of GMCSF but that would be off label and not FDA approved. I hope others have suggestions for you. Watch and wait is difficult, that's what I'm doing at Stage IV but for many it works!
Let us know what the Dr suggests,
Linda
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- May 10, 2011 at 10:36 am
I think that GMCSF would be good to consider. This is because it does change the nature of
melanoma in some people, making surgical removable of any new tumours a viable option.Frank from Australia
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- May 10, 2011 at 10:36 am
I think that GMCSF would be good to consider. This is because it does change the nature of
melanoma in some people, making surgical removable of any new tumours a viable option.Frank from Australia
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- May 10, 2011 at 10:59 am
Hi Becca
Your case very similar to mine (except leg not arm lymph nodes), and I met several oncs both here (Thailand) and in Australia + read much from this Board, and choose observation over Interferon. Each oncologist was basically neutral – i.e. no attempt to sway my choice to either option, but all were fine with my no interferon decision.
The good news is that after 3 + years no evidence of a recurrence at all – so please stay positive if this the option you are recommended.
This post is not intended to recommend any course of action – just to let you know my story and that there are plenty of good news cases around.
Live Strong and best of luck.
John in Bangkok
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- May 10, 2011 at 10:59 am
Hi Becca
Your case very similar to mine (except leg not arm lymph nodes), and I met several oncs both here (Thailand) and in Australia + read much from this Board, and choose observation over Interferon. Each oncologist was basically neutral – i.e. no attempt to sway my choice to either option, but all were fine with my no interferon decision.
The good news is that after 3 + years no evidence of a recurrence at all – so please stay positive if this the option you are recommended.
This post is not intended to recommend any course of action – just to let you know my story and that there are plenty of good news cases around.
Live Strong and best of luck.
John in Bangkok
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- May 10, 2011 at 4:07 pm
Becca Sometimes, I feel like I am the cheerleader for interferon, as I have often posted on how well my husband did during his year of Interferon shots. I don't mean to sound that way, its just that I like to comment when I read things like you wrote, that your doctor describes taking interferon as having a bad case of the flu for the whole year. My husband just finished his year of interferon this past Sunday, and never missed work, our children's events, and still cut the wood for the winter. He did lose weight and was more tired, sleeping in, any morning that would allow it, but other than that he had few side effects. We were really amazed at how well he did on interferon. I think how you do on interferon is very individualized, so if you decide to give it a try, you can see how if goes and always stop taking it if you feel miserable. That was the approach we took, when making our decision. I also think that watching and waiting is a very viable approach. We just needed to do something for our mental healths, and hope for the best. Good luck with whatever decision you make. God Bless! Valerie (Phil's wife)
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- May 10, 2011 at 4:07 pm
Becca Sometimes, I feel like I am the cheerleader for interferon, as I have often posted on how well my husband did during his year of Interferon shots. I don't mean to sound that way, its just that I like to comment when I read things like you wrote, that your doctor describes taking interferon as having a bad case of the flu for the whole year. My husband just finished his year of interferon this past Sunday, and never missed work, our children's events, and still cut the wood for the winter. He did lose weight and was more tired, sleeping in, any morning that would allow it, but other than that he had few side effects. We were really amazed at how well he did on interferon. I think how you do on interferon is very individualized, so if you decide to give it a try, you can see how if goes and always stop taking it if you feel miserable. That was the approach we took, when making our decision. I also think that watching and waiting is a very viable approach. We just needed to do something for our mental healths, and hope for the best. Good luck with whatever decision you make. God Bless! Valerie (Phil's wife)
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- May 10, 2011 at 4:32 pm
I'm going to repeat what Valerie said. My hubby is currently in month 4 of the lowdose interferon and he is tired all the time. If he could, he said he would sleep all day. With that being said, he does all the day to day stuff, goes to work, plays with our son, etc. He gets frustrated with the lack of energy and has lost weight. He started taking an anti-depressant because he was starting to get a very short temper and was getting mad quickly. That has helped to relax him a bit, and we haven't noticed any side effects. His doctor has left it all up to him whether to contininue for the rest of the year or not. He kind of goes back and forth. He really hates having the shots, but at this point he is going to continue with it. Maybe that will change in a month or two, I don't know, but I don't think it will hurt either way. Good luck with whatever you decide. the good thing with interferon is that you can stop at any time, you aren't locked in.
Akilyn
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- May 10, 2011 at 4:32 pm
I'm going to repeat what Valerie said. My hubby is currently in month 4 of the lowdose interferon and he is tired all the time. If he could, he said he would sleep all day. With that being said, he does all the day to day stuff, goes to work, plays with our son, etc. He gets frustrated with the lack of energy and has lost weight. He started taking an anti-depressant because he was starting to get a very short temper and was getting mad quickly. That has helped to relax him a bit, and we haven't noticed any side effects. His doctor has left it all up to him whether to contininue for the rest of the year or not. He kind of goes back and forth. He really hates having the shots, but at this point he is going to continue with it. Maybe that will change in a month or two, I don't know, but I don't think it will hurt either way. Good luck with whatever you decide. the good thing with interferon is that you can stop at any time, you aren't locked in.
Akilyn
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- May 10, 2011 at 5:31 pm
Interferon can be a difficult treatment, a lot of people don't make it through the 12 month treatment. The one month high dose seems like a very reasonable alternative. When I was given my choice I only had the 1 year of "wait and watch", I chose wait and watch. Just didn't seem to me that interferon was that effective to give up one year of my life. What swayed me was that stats that showed patients that took it did not live any longer than tose that didn't, dispite tha fact that it works in 5 -10% of the case ????
Anyway, good luck it's a very tough decision. Once you make that decision don't ever look back!
Mary
Stage 3
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- May 10, 2011 at 5:31 pm
Interferon can be a difficult treatment, a lot of people don't make it through the 12 month treatment. The one month high dose seems like a very reasonable alternative. When I was given my choice I only had the 1 year of "wait and watch", I chose wait and watch. Just didn't seem to me that interferon was that effective to give up one year of my life. What swayed me was that stats that showed patients that took it did not live any longer than tose that didn't, dispite tha fact that it works in 5 -10% of the case ????
Anyway, good luck it's a very tough decision. Once you make that decision don't ever look back!
Mary
Stage 3
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- May 10, 2011 at 6:23 pm
Hi Becca,
I just wanted to chime in as well:) My twin sister was diagnosed with stage 3b melanoma while 5 months pregnant. She had all the necessary surgeries during her pregnancy WLE and SNB and did the interferon after she had the baby. I did so much research on interferon on and read people's stories and asked for advice. I started to get concerned after hearing people describe it as your dr did and plenty of people who had to quit. But after my sister thought it over and we talked to her oncologist she decided to at least try the 1 month high dose and go from there. If she made it a year good if not at least she tried. We were so prepared on that first day of high dose with everything that we had read that would help. She came home from the hospital and she felt like she was hit by a truck. She had the rigors( shaking really bad) a headache and body aches. We thought for sure she had made the wrong decision but still she decided to go ahead and we were plesantly surprised that the next day was better, and the one after that even better, and by the end of the week we were scratching our heads.
She continued the whole year and finished treament this past FEB. She played volleyball 3 times a week, woke up with her newborn baby, cooked, cleaned, went on vacations ect while on treatment. Her side effects were pretty much like you have read in the previous posts, being a little more tired than usual, and she had body aches right after her low dose shot. But she learned the routine and how to manage the side effects and to drink LOTS of water and listen to your body. She knows the statistics about interferon, but was willing to try anyway. She said she is so proud of herself for making it the whole year!!
So with that being said… maybe consider going into the 1 month like she did. She how your body reacts and go from there. And remember even when you have a bad day on interferon a good streak may be just around the corner. Then at least you can say you gave it a try, who knows maybe you will surprise yourself and make it the whole year.
If you do decided to do it let us know, we had the benefit of having some survivors give us good tips on managing symptoms that really worked. And I know that there are a lot of people on here that would be willing to tell you what worked for them!
Good luck with your decision!
Jessica
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- May 10, 2011 at 6:23 pm
Hi Becca,
I just wanted to chime in as well:) My twin sister was diagnosed with stage 3b melanoma while 5 months pregnant. She had all the necessary surgeries during her pregnancy WLE and SNB and did the interferon after she had the baby. I did so much research on interferon on and read people's stories and asked for advice. I started to get concerned after hearing people describe it as your dr did and plenty of people who had to quit. But after my sister thought it over and we talked to her oncologist she decided to at least try the 1 month high dose and go from there. If she made it a year good if not at least she tried. We were so prepared on that first day of high dose with everything that we had read that would help. She came home from the hospital and she felt like she was hit by a truck. She had the rigors( shaking really bad) a headache and body aches. We thought for sure she had made the wrong decision but still she decided to go ahead and we were plesantly surprised that the next day was better, and the one after that even better, and by the end of the week we were scratching our heads.
She continued the whole year and finished treament this past FEB. She played volleyball 3 times a week, woke up with her newborn baby, cooked, cleaned, went on vacations ect while on treatment. Her side effects were pretty much like you have read in the previous posts, being a little more tired than usual, and she had body aches right after her low dose shot. But she learned the routine and how to manage the side effects and to drink LOTS of water and listen to your body. She knows the statistics about interferon, but was willing to try anyway. She said she is so proud of herself for making it the whole year!!
So with that being said… maybe consider going into the 1 month like she did. She how your body reacts and go from there. And remember even when you have a bad day on interferon a good streak may be just around the corner. Then at least you can say you gave it a try, who knows maybe you will surprise yourself and make it the whole year.
If you do decided to do it let us know, we had the benefit of having some survivors give us good tips on managing symptoms that really worked. And I know that there are a lot of people on here that would be willing to tell you what worked for them!
Good luck with your decision!
Jessica
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- May 10, 2011 at 6:30 pm
My husband chose to watch and wait when he was diagnosed stage iiia in Jan 2002. He got a PET scan every 3 months for 1 year, every 6 months for 4 more years, and annual since then (CT rather than PET for the past 2 years). He gets bloodwork and visits the oncologist twice a year. He visits the dermatologist twice a year (today, in fact). This August will be his last CT scan according to his oncologist – it will be 9.5 years from his original diagnosis. I suppose at this point, they assume the risks from scanning outweigh the chance of recurrance. (frankly, it scares me that he won't be scanned anymore!).
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- May 10, 2011 at 6:30 pm
My husband chose to watch and wait when he was diagnosed stage iiia in Jan 2002. He got a PET scan every 3 months for 1 year, every 6 months for 4 more years, and annual since then (CT rather than PET for the past 2 years). He gets bloodwork and visits the oncologist twice a year. He visits the dermatologist twice a year (today, in fact). This August will be his last CT scan according to his oncologist – it will be 9.5 years from his original diagnosis. I suppose at this point, they assume the risks from scanning outweigh the chance of recurrance. (frankly, it scares me that he won't be scanned anymore!).
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- May 10, 2011 at 9:02 pm
We all want to make sure melanoma doesn’t come back. Unfortunately that is not possible (YET) and you are faced with a difficult decision at Stage 3 NED…to do interferon or not.
Almost 2 years ago, our first medical oncologist wanted my husband (stage 3a) to do interferon (he was not a melanoma specialist). But our surgical onc said he wouldn’t do it..then a second opinion (melanoma specialist) said they were on the fence and that it was up to us. So we researched it ourselves and read the studies. We saw that there was only a small benefit in recurrent free survival and there no difference in overall survival. My husband (41 at the time) was just fine with doing observation…so that is what he did. BUT some people have pointed out that the small difference of time in RFS could end up giving you just enough time until the next new drug is available.
You say you cant wait and see….so your only option would be to do interferon or as others have said maybe the high dose month would be better? Or the recently approved Pegylated interferon (taken for 5 years) that supposedly has less side effects. Or you could try and get into the Ipilumamab/Yervoy adjuvant clinical trial (but you must start within 8 weeks of surgery and there is a placebo arm). Or GMCSF – but our oncs said they didnt think our insurance would cover it.
It is a tough decision and I send you my best!
Emily
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- May 10, 2011 at 9:02 pm
We all want to make sure melanoma doesn’t come back. Unfortunately that is not possible (YET) and you are faced with a difficult decision at Stage 3 NED…to do interferon or not.
Almost 2 years ago, our first medical oncologist wanted my husband (stage 3a) to do interferon (he was not a melanoma specialist). But our surgical onc said he wouldn’t do it..then a second opinion (melanoma specialist) said they were on the fence and that it was up to us. So we researched it ourselves and read the studies. We saw that there was only a small benefit in recurrent free survival and there no difference in overall survival. My husband (41 at the time) was just fine with doing observation…so that is what he did. BUT some people have pointed out that the small difference of time in RFS could end up giving you just enough time until the next new drug is available.
You say you cant wait and see….so your only option would be to do interferon or as others have said maybe the high dose month would be better? Or the recently approved Pegylated interferon (taken for 5 years) that supposedly has less side effects. Or you could try and get into the Ipilumamab/Yervoy adjuvant clinical trial (but you must start within 8 weeks of surgery and there is a placebo arm). Or GMCSF – but our oncs said they didnt think our insurance would cover it.
It is a tough decision and I send you my best!
Emily
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- May 11, 2011 at 1:45 am
Hi Becca,
I also had one positive node, so I'm also 3A. I was diagnosed in the summer of 2007. My Oncological Surgeon did not offer Interferon. He did not believe it made a statically significant difference. I started with monthly exams, and over time have gradually increased time between checkups to 6 months. Once a year I also get chest X-rays (to see if spreading to lungs) and blood work. My four year anniversary is coming up this summer.
I know that a lot of folks want to cover all bases and would have found another doctor that would prescribed Interferon or some other therapy. And If my Onc had recommended Interferon or other treatment, I probably would have followed his advice. I did my own reserch, and there was no hard and fast recomended treatment for 3A. Good luck!
Mike
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- May 11, 2011 at 1:45 am
Hi Becca,
I also had one positive node, so I'm also 3A. I was diagnosed in the summer of 2007. My Oncological Surgeon did not offer Interferon. He did not believe it made a statically significant difference. I started with monthly exams, and over time have gradually increased time between checkups to 6 months. Once a year I also get chest X-rays (to see if spreading to lungs) and blood work. My four year anniversary is coming up this summer.
I know that a lot of folks want to cover all bases and would have found another doctor that would prescribed Interferon or some other therapy. And If my Onc had recommended Interferon or other treatment, I probably would have followed his advice. I did my own reserch, and there was no hard and fast recomended treatment for 3A. Good luck!
Mike
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- May 11, 2011 at 2:40 am
Hi Becca.
I have read all the other responses and have not seen anyone mention clinical trials. First, I'd say that I know and understand your aversion to following the 'observation only' route. Back in 2003, I did interferon, mainly because it was the only thing available for me. I looked at a couple of clinical trials at that time that compared interferon (the standard treatment) to other treatments, but I did not qualify for them.
I am not sure what trials you might qualify for, but it might be worth looking into. First, you need to look at what you will accept, like, many trials would offer one placebo arm, which I was never ready to do. But there are a lot of them. There are a couple of clinical trial search engines, one is clinicaltrials.gov where you can plug in your own details about what you are looking for. But the first thing you should consider is asking your own oncologist if he would suggest a clinical trial in your case, or if any are being done at his clinic.
Also, you don't mention where you are, or if you are seeing an oncologist with a strong background in melanoma. A lot depends on your situation, but it's always a good idea to have a second opinion (at least) with a melanoma specialist. This is much easier if you live someplace close to a melanoma center, like MDA or Dana Farber or Moffitt… it's a lot more complicated if you live in someplace like North Dakota and live from paycheck to paycheck.
So, ask your doctor about clinical trials that might focus on improving your immune system. Ask about a second opinion with a melanoma specialist. And do some research of your own about what kind of trial might interest you.
Some clinical trials pay for all expenses, others do not, so it's good to research thoroughly. Some cancer clinics have people on staff who will help you with such research. If yours does not, you can call the American Cancer Society and they will do an interview with you regarding your particulars, and email you a list of trials that you might qualify for.
Clinical trials might not even be the way to go for you, but it's an option I've not seen anyone else bring up, and many of the most cutting edge things going on in the melanoma world right now aren't available via traditional treatment plans, they are only available via trial.
Dian in Spokane
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- May 11, 2011 at 2:40 am
Hi Becca.
I have read all the other responses and have not seen anyone mention clinical trials. First, I'd say that I know and understand your aversion to following the 'observation only' route. Back in 2003, I did interferon, mainly because it was the only thing available for me. I looked at a couple of clinical trials at that time that compared interferon (the standard treatment) to other treatments, but I did not qualify for them.
I am not sure what trials you might qualify for, but it might be worth looking into. First, you need to look at what you will accept, like, many trials would offer one placebo arm, which I was never ready to do. But there are a lot of them. There are a couple of clinical trial search engines, one is clinicaltrials.gov where you can plug in your own details about what you are looking for. But the first thing you should consider is asking your own oncologist if he would suggest a clinical trial in your case, or if any are being done at his clinic.
Also, you don't mention where you are, or if you are seeing an oncologist with a strong background in melanoma. A lot depends on your situation, but it's always a good idea to have a second opinion (at least) with a melanoma specialist. This is much easier if you live someplace close to a melanoma center, like MDA or Dana Farber or Moffitt… it's a lot more complicated if you live in someplace like North Dakota and live from paycheck to paycheck.
So, ask your doctor about clinical trials that might focus on improving your immune system. Ask about a second opinion with a melanoma specialist. And do some research of your own about what kind of trial might interest you.
Some clinical trials pay for all expenses, others do not, so it's good to research thoroughly. Some cancer clinics have people on staff who will help you with such research. If yours does not, you can call the American Cancer Society and they will do an interview with you regarding your particulars, and email you a list of trials that you might qualify for.
Clinical trials might not even be the way to go for you, but it's an option I've not seen anyone else bring up, and many of the most cutting edge things going on in the melanoma world right now aren't available via traditional treatment plans, they are only available via trial.
Dian in Spokane
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- May 11, 2011 at 11:24 am
Hi Becca
I feel for you in your situation – I have been there. I wish I had found this board earlier because I think I would have made different decisions. I was told all of the same things you have been about interferon. I chose not to do it. Everyone on this board will tell you not to look back once you make your decision, but I do, because I really don't feel like I was informed enough. Maybe the outcome of my situation would have been the same maybe it wouldn't, but what I do know is that I eliminated it as a option.
I went on to do a clinical trial of ipi – because as many have said when you are stage III your options are limited. Ipi didn't work for me – and I am now stage IV. What I do know, personally, is that I would never have done watch and wait. Here's why – I was monitored heavily so as soon as the Mel advanced they knew it immediately – a fact that I hope gives me some sort of advantage – maybe it will, maybe it won't – this crap is so unpredictable. However if I had done watch and wait it would have been everywhere before they found it instead of one small spot.
It is all very much a personal decision and one only you can make – take all the advice and experiences you have learned here and do what is right for Becca. Best of luck you today, I know it is stressful, try not to let it get the best of you.
Hugs and Smiles
Dawn
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- May 11, 2011 at 11:24 am
Hi Becca
I feel for you in your situation – I have been there. I wish I had found this board earlier because I think I would have made different decisions. I was told all of the same things you have been about interferon. I chose not to do it. Everyone on this board will tell you not to look back once you make your decision, but I do, because I really don't feel like I was informed enough. Maybe the outcome of my situation would have been the same maybe it wouldn't, but what I do know is that I eliminated it as a option.
I went on to do a clinical trial of ipi – because as many have said when you are stage III your options are limited. Ipi didn't work for me – and I am now stage IV. What I do know, personally, is that I would never have done watch and wait. Here's why – I was monitored heavily so as soon as the Mel advanced they knew it immediately – a fact that I hope gives me some sort of advantage – maybe it will, maybe it won't – this crap is so unpredictable. However if I had done watch and wait it would have been everywhere before they found it instead of one small spot.
It is all very much a personal decision and one only you can make – take all the advice and experiences you have learned here and do what is right for Becca. Best of luck you today, I know it is stressful, try not to let it get the best of you.
Hugs and Smiles
Dawn
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- May 11, 2011 at 12:28 pm
Dawn,
I'm sorry you have progressed but as said, you can't look backwards. Watch and wait means that you are monitered very carefully. I actually find that I have more scans now and my concerns are listened to more carefully then when I was on a trial what followed a strict schedule! My Dr calls it "thoughtful watch and waiting".
I have PET/CT scans every 3 months and have been having diagnostic CT's also since my nodules showed up in my lungs. I just have to mention a pain and my onc gets me in to a specialist that can deal with it. Because I travel for my mel specialist I also have a local onc and dermatologist. I schedule my appointments so I actually see them on a rotating basis – one each month. Any concerns are quickly brought up. I also have a urology oncologist (mel to the bladder) and have a cystoscopy every 6 months (was 3 months but have now graduated!!). Due to pains they actually did the diagnostic CT in the middle of my PET schedule this time.
Like I said, you can't look back but watch and wait can be a good option for many. At this point I am considered to be treatment naive (did do gmcsf in trial for a year but that is not being counted) and with some of the new trials they only allow 2 previous treatments so if needed I have those options.
Linda
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- May 11, 2011 at 1:08 pm
Linda
I am glad to know that I am wrong in my thinking – I was not lead to believe that when I was at that point in my situation. In fact I was really lead to believe that the only way I would be closely monitored was to do the ipi trial. Which is why I went that way. I find I am not always happy with my Dr. and don't feel like I am listened to when I have concerns, but I really don't know what to do about that at this point, so I am very glad that your situation is one that you are happy with.
Hugs and Smiles
Dawn
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- May 11, 2011 at 1:08 pm
Linda
I am glad to know that I am wrong in my thinking – I was not lead to believe that when I was at that point in my situation. In fact I was really lead to believe that the only way I would be closely monitored was to do the ipi trial. Which is why I went that way. I find I am not always happy with my Dr. and don't feel like I am listened to when I have concerns, but I really don't know what to do about that at this point, so I am very glad that your situation is one that you are happy with.
Hugs and Smiles
Dawn
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- May 11, 2011 at 4:27 pm
Dawn,
It's time to change Doctors. We don't have a lot of control with this disease but we do have control of who our Doctor is. My trial experience was horrendous. I could get out of the trial at the time but then no one (because of ethical reasons) would prescribe for me the GMCSF. That's when I started to go to a local oncologist along with the trial Dr and got a different perspective. While she wasn't a mel specialist she did so much research for me! When I had my next recurrance she was ready with referrals to Charlotte where I've been going ever since. We've moved since then and the mel specialist is now 2 hours instead of 4 hours. I do miss the local oncologist! Charlie S had recommended her to me and she was a real sweetie!
You need a Dr. that is supportive and listens,
Linda
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- May 11, 2011 at 4:27 pm
Dawn,
It's time to change Doctors. We don't have a lot of control with this disease but we do have control of who our Doctor is. My trial experience was horrendous. I could get out of the trial at the time but then no one (because of ethical reasons) would prescribe for me the GMCSF. That's when I started to go to a local oncologist along with the trial Dr and got a different perspective. While she wasn't a mel specialist she did so much research for me! When I had my next recurrance she was ready with referrals to Charlotte where I've been going ever since. We've moved since then and the mel specialist is now 2 hours instead of 4 hours. I do miss the local oncologist! Charlie S had recommended her to me and she was a real sweetie!
You need a Dr. that is supportive and listens,
Linda
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- May 11, 2011 at 12:28 pm
Dawn,
I'm sorry you have progressed but as said, you can't look backwards. Watch and wait means that you are monitered very carefully. I actually find that I have more scans now and my concerns are listened to more carefully then when I was on a trial what followed a strict schedule! My Dr calls it "thoughtful watch and waiting".
I have PET/CT scans every 3 months and have been having diagnostic CT's also since my nodules showed up in my lungs. I just have to mention a pain and my onc gets me in to a specialist that can deal with it. Because I travel for my mel specialist I also have a local onc and dermatologist. I schedule my appointments so I actually see them on a rotating basis – one each month. Any concerns are quickly brought up. I also have a urology oncologist (mel to the bladder) and have a cystoscopy every 6 months (was 3 months but have now graduated!!). Due to pains they actually did the diagnostic CT in the middle of my PET schedule this time.
Like I said, you can't look back but watch and wait can be a good option for many. At this point I am considered to be treatment naive (did do gmcsf in trial for a year but that is not being counted) and with some of the new trials they only allow 2 previous treatments so if needed I have those options.
Linda
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- May 11, 2011 at 8:05 pm
Just got home from the oncologist. He advises observation. He kept waffling between saying I was a 3A or a 3B and I think he settled on A, but I'm not convinced. He said I fall into that grey area where there's not much they can do at this point but wait and make sure it doesn't come back. I asked him if that meant scans every 3 months and he said no, that would be too much radiation. Now I've heard lots of people here have scans every 3 months so I'm feeling very vulnerable right now. The doc says he goes by the national guidelines for Melanoma treatment. So I'm to just walk away and come back and see him in 3 months.
Meanwhile the PET scan found what they think is a cyst behind my knee, so they are going to do an MRI to make sure that's all it is.
I could have gone ahead with Interferon but said no due to the statistics of it not being very successful. But I do qualify for a Clinical trial of Yervoy. But there would be a 50-50 chance I would get the placebo and not the drug. Also, it's at the Moffitt cancer center in Tampa and that's 3 hours from me. My mom is not happy at the prospect of having to drive me there and back several times in the next few months.
I am on the edge of saying no, nevermind. Everyone in my family is telling me to do observation, just wait and watch.
I'm scared to do nothing, but I may not have much choice. Also people are asking me why am I so concerned it will pop up somewhere else in my body when they got it all in the surgery? I just point to this website and say so many people thought their's was gone too, and it does have a tendency to pop up again later. My mom doesn't understand it. She thinks "Surgery done, no more cancer, you're cured!".
Reading all the stuff here, I know it's not that simple.
I'm starting to feel a little alone in my fears.
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- May 11, 2011 at 8:33 pm
Hi Render,
Really, in a way, 3a or 3b, doesn't make but so much difference. Either way melanoma has hit your lymphatic system. Because of that there's going to be that possibility of a renegade cell that's loose and can cause trouble down the road. You're not cured. Mom's wrong and needs to get educated.
I'm 3b, the cancer was "gotten." The way my dr put it to me in late 2008 was, "You have a 30-35% chance of it coming back within the next 10 years. If it does it WILL come back in either your lungs or your brain." Mine was removed from upper left arm and all lymph nodes under left arm were removed. I've seen my statistic played out in a colleague so I know it can happen. The stat was if it recurs from this primary…I can always develop more primaries.
But I've been NED ever since my surgeries in 2008 and didn't do Interferon. I never have considered I was waiting it out. I didn't like what I read about Intereferon and figured I'd need a good working liver and everything else to fight a recurrence if it happens. I've never regretted my decision. But it was MY decision, with my husband's support.
It's your body, your future, your fight, and it has to be your call. Be as well informed as you can, Research from GOOD sources, not just any ol' where. And don't let Mom's unhappiness at a drive deter you from going after what you feel you need to do. It's not her call. If she balks too much, ask around and you'll be able to find someone else to pitch in and help with the driving. Just don't let that be what makes your mind up!
All the best to you Friend!
Grace and peace,
Carol
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- May 11, 2011 at 8:33 pm
Hi Render,
Really, in a way, 3a or 3b, doesn't make but so much difference. Either way melanoma has hit your lymphatic system. Because of that there's going to be that possibility of a renegade cell that's loose and can cause trouble down the road. You're not cured. Mom's wrong and needs to get educated.
I'm 3b, the cancer was "gotten." The way my dr put it to me in late 2008 was, "You have a 30-35% chance of it coming back within the next 10 years. If it does it WILL come back in either your lungs or your brain." Mine was removed from upper left arm and all lymph nodes under left arm were removed. I've seen my statistic played out in a colleague so I know it can happen. The stat was if it recurs from this primary…I can always develop more primaries.
But I've been NED ever since my surgeries in 2008 and didn't do Interferon. I never have considered I was waiting it out. I didn't like what I read about Intereferon and figured I'd need a good working liver and everything else to fight a recurrence if it happens. I've never regretted my decision. But it was MY decision, with my husband's support.
It's your body, your future, your fight, and it has to be your call. Be as well informed as you can, Research from GOOD sources, not just any ol' where. And don't let Mom's unhappiness at a drive deter you from going after what you feel you need to do. It's not her call. If she balks too much, ask around and you'll be able to find someone else to pitch in and help with the driving. Just don't let that be what makes your mind up!
All the best to you Friend!
Grace and peace,
Carol
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- May 11, 2011 at 10:07 pm
I don't want to scare you here but I go to Moffitt also and heard that exact same advice – I was told there was a 20-30% chance that it would ever come back – chose Yervoy – 3 months later is was back at stage IV. Now just because Yervoy didn't work for me doesn't mean the same for you but as I said that was the line I was fed and basically I did yervoy so I would be watched. If you feel that uncomfortable not doing nothing DON"T do it. your mom will live with it – I live two hours from there myself.
Take care
Hugs and Smiles
Dawn
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- May 12, 2011 at 2:13 am
Becca,
my intent is not to frighten you but to inform you…if you are not comfortable with watch, wait and see, please go get another opinion by a mel specialist…you are in control, not your onc, your mother or your surgeon, but you…and if YOU want to watch and wait, that is GOOD…if you don't, start asking, and reading and get referrals, line up your ducks
boots
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- May 12, 2011 at 2:13 am
Becca,
my intent is not to frighten you but to inform you…if you are not comfortable with watch, wait and see, please go get another opinion by a mel specialist…you are in control, not your onc, your mother or your surgeon, but you…and if YOU want to watch and wait, that is GOOD…if you don't, start asking, and reading and get referrals, line up your ducks
boots
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- May 16, 2011 at 7:41 am
Nicki,
I've never heard those stats before from anyone. From everything I've researched, they say the odds of recurrence at 3b is anywhere from 25-60%. I've never heard anyone say their doctor told them they probably wouldn't be alive in 5 years. I hope he has the info to back that up because that's horrible. Talk about not giving your patient any hope.
Does anyone else believe this stat??
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- May 16, 2011 at 11:26 am
I've been 3b since 2008. My dr has never, ever mentioned "years to live." He did tell me that I have a 30-35% chance that it will return, from that primary, within 10 years and that if it does, it will come back in my lungs or brain. My primary was upper left arm.
Honestly, if after researching what it means to be 3b, and I have like we all have, if my dr told me I'd be dead in 5 years, I'd be getting a new dr and pronto. No matter how world renowned, that's a horrible thing to tell a new patient, particularly one that 3b.
I remember that Cancer Treatment Center of America commercial (which I don't go to) where they tell Peggy she doesn't have an expiration date stamped on her foot. ALL cancer drs should know that by now.
Grace and peace,
Carol
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- May 16, 2011 at 11:26 am
I've been 3b since 2008. My dr has never, ever mentioned "years to live." He did tell me that I have a 30-35% chance that it will return, from that primary, within 10 years and that if it does, it will come back in my lungs or brain. My primary was upper left arm.
Honestly, if after researching what it means to be 3b, and I have like we all have, if my dr told me I'd be dead in 5 years, I'd be getting a new dr and pronto. No matter how world renowned, that's a horrible thing to tell a new patient, particularly one that 3b.
I remember that Cancer Treatment Center of America commercial (which I don't go to) where they tell Peggy she doesn't have an expiration date stamped on her foot. ALL cancer drs should know that by now.
Grace and peace,
Carol
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- May 16, 2011 at 11:37 am
Here is some info about statistics and one's prognosis:
http://www.cancerhelp.org.uk/type/melanoma/treatment/melanoma-statistics-and-outlookThe article says: "No statistics can tell you what will happen to you. Your cancer is unique. The
same type of cancer can grow at different rates in different people. The statistics cannot tell
you about the different treatments people may have had, or how that treatment may have affected
their prognosis. There are many individual factors that will affect your treatment and your
outlook."There are many people here who continue to defy the statistics, so please don't take the stats
too seriously.Hope this helps.
Frank from Australia
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- May 16, 2011 at 11:48 am
Amen, Frank! And when a dr goes that extra giant step, and doesn't just give stats, but tells a 3b they'll be dead in 5 years, and robs them of hope, to me that's inexcusable and grounds for getting a new dr. It goes beyond taking hope, it says "Why bother?" 3bs! This board is quite a melting pot of drs and experiences!
Grace and peace, Frank,
Carol
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- May 16, 2011 at 11:48 am
Amen, Frank! And when a dr goes that extra giant step, and doesn't just give stats, but tells a 3b they'll be dead in 5 years, and robs them of hope, to me that's inexcusable and grounds for getting a new dr. It goes beyond taking hope, it says "Why bother?" 3bs! This board is quite a melting pot of drs and experiences!
Grace and peace, Frank,
Carol
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- May 16, 2011 at 11:37 am
Here is some info about statistics and one's prognosis:
http://www.cancerhelp.org.uk/type/melanoma/treatment/melanoma-statistics-and-outlookThe article says: "No statistics can tell you what will happen to you. Your cancer is unique. The
same type of cancer can grow at different rates in different people. The statistics cannot tell
you about the different treatments people may have had, or how that treatment may have affected
their prognosis. There are many individual factors that will affect your treatment and your
outlook."There are many people here who continue to defy the statistics, so please don't take the stats
too seriously.Hope this helps.
Frank from Australia
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- May 16, 2011 at 6:26 pm
Well, all cancers have a 5 year survival rate. Based on those who have been diagnosed and treated with each individual cancer, for every hundred patients a certain percentage have lived for 5 years and a certain percentage have died before 5 years. This is basic cancer stuff.
Of course, nobody ever died from stage 1, 2 or 3 so this means that a certain percentage of those 100 patients will progress to stage 4 and eventually not respond to treatments and die.
From various reputable websites, I have found that the survival rates for stage 3 melanoma is about 30/70, give or take.
If this is the case ( that I have a 70% chance of not being alive in 5 years) it means that in the next 5 years I have a 70% of progressing to stage 4 and not responding to treatment. Hence, I have a 70% chance of the cancer returning cuz it has to return if I am going to progress from stage 3 to stage 4.
I surely didn't mean to scare anyone. I thought this was basic stuff.
My doctor did not say I would die before 5 years. She said I have to fight and keep the faith. But it is what it is.
Bottom line, I have a 30% chance of being alive 5 years after diagnosis. I personally don't think this is so bad. Someone has to be in that 30%, may as well be ME!
Nicki, Stage 3b, scalp
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- May 16, 2011 at 6:26 pm
Well, all cancers have a 5 year survival rate. Based on those who have been diagnosed and treated with each individual cancer, for every hundred patients a certain percentage have lived for 5 years and a certain percentage have died before 5 years. This is basic cancer stuff.
Of course, nobody ever died from stage 1, 2 or 3 so this means that a certain percentage of those 100 patients will progress to stage 4 and eventually not respond to treatments and die.
From various reputable websites, I have found that the survival rates for stage 3 melanoma is about 30/70, give or take.
If this is the case ( that I have a 70% chance of not being alive in 5 years) it means that in the next 5 years I have a 70% of progressing to stage 4 and not responding to treatment. Hence, I have a 70% chance of the cancer returning cuz it has to return if I am going to progress from stage 3 to stage 4.
I surely didn't mean to scare anyone. I thought this was basic stuff.
My doctor did not say I would die before 5 years. She said I have to fight and keep the faith. But it is what it is.
Bottom line, I have a 30% chance of being alive 5 years after diagnosis. I personally don't think this is so bad. Someone has to be in that 30%, may as well be ME!
Nicki, Stage 3b, scalp
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- May 16, 2011 at 7:41 am
Nicki,
I've never heard those stats before from anyone. From everything I've researched, they say the odds of recurrence at 3b is anywhere from 25-60%. I've never heard anyone say their doctor told them they probably wouldn't be alive in 5 years. I hope he has the info to back that up because that's horrible. Talk about not giving your patient any hope.
Does anyone else believe this stat??
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- May 11, 2011 at 10:07 pm
I don't want to scare you here but I go to Moffitt also and heard that exact same advice – I was told there was a 20-30% chance that it would ever come back – chose Yervoy – 3 months later is was back at stage IV. Now just because Yervoy didn't work for me doesn't mean the same for you but as I said that was the line I was fed and basically I did yervoy so I would be watched. If you feel that uncomfortable not doing nothing DON"T do it. your mom will live with it – I live two hours from there myself.
Take care
Hugs and Smiles
Dawn
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- May 12, 2011 at 12:02 pm
For what it's worth, I'm Stage III with an unknown primary; one lymph node was positive for melanoma. I was given 3 options: observation only, interferon, clinical trial. One oncologist I saw told me she'd consider radiation if they found extracapsular extensions where they found the melanoma cells.
I found that I qualified for a clinical trial for the MAGE A3 vaccine, which is the option I chose. I wasn't 100% comfortable with observation only and was not comfortable with all the side effects of the interferon, as well as self-administering the injections. This particular trial offered a 2 out of 3 chance ot getting the vaccine along with close observation, so for me this was win-win.
It probably won't hurt to get a second opinion, especially since you may be IIIB, which would qualify you for the vaccine trial. But time is of the essence because you have 8 (?) weeks or so after your last melanoma surgery to get in.
Here's more information on that trial: http://clinicaltrials.gov/ct2/show/NCT00796445?term=resected+stage+III+melanoma+MAGE&rank=1
That page has information on locations where the trial is being held. There appear to be several in Florida.
Hang in there!
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- May 12, 2011 at 12:02 pm
For what it's worth, I'm Stage III with an unknown primary; one lymph node was positive for melanoma. I was given 3 options: observation only, interferon, clinical trial. One oncologist I saw told me she'd consider radiation if they found extracapsular extensions where they found the melanoma cells.
I found that I qualified for a clinical trial for the MAGE A3 vaccine, which is the option I chose. I wasn't 100% comfortable with observation only and was not comfortable with all the side effects of the interferon, as well as self-administering the injections. This particular trial offered a 2 out of 3 chance ot getting the vaccine along with close observation, so for me this was win-win.
It probably won't hurt to get a second opinion, especially since you may be IIIB, which would qualify you for the vaccine trial. But time is of the essence because you have 8 (?) weeks or so after your last melanoma surgery to get in.
Here's more information on that trial: http://clinicaltrials.gov/ct2/show/NCT00796445?term=resected+stage+III+melanoma+MAGE&rank=1
That page has information on locations where the trial is being held. There appear to be several in Florida.
Hang in there!
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- May 12, 2011 at 2:53 pm
Hey Becca,
I would say if you are having any doubts about your dr than get a second opinion. We need to be our own advocates when it comes to health care and if something isn't sitting right with what he is telling you than seek out a different dr. We had to hire and fire a few oncologists:)
My sister had scans every 3 months for the fist 1 1/2 and now is going on a 6 month scan routine. Which involves CT/ MRI's and no PET scans.
I know it's a hard decision especially when not much is offered for this stage. But just keep your head up and talk to some more dr.s see what they say but do it soon because of the time from your surgery you may be limited for trials.
Wishing luck and sending prayers!
Jessica
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- May 12, 2011 at 2:53 pm
Hey Becca,
I would say if you are having any doubts about your dr than get a second opinion. We need to be our own advocates when it comes to health care and if something isn't sitting right with what he is telling you than seek out a different dr. We had to hire and fire a few oncologists:)
My sister had scans every 3 months for the fist 1 1/2 and now is going on a 6 month scan routine. Which involves CT/ MRI's and no PET scans.
I know it's a hard decision especially when not much is offered for this stage. But just keep your head up and talk to some more dr.s see what they say but do it soon because of the time from your surgery you may be limited for trials.
Wishing luck and sending prayers!
Jessica
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- May 16, 2011 at 12:15 pm
Hi Becca,
I was diagnosed this year with Stage 3c – deep, 1 macro node and ulcerated. My oncologist suggested that Interferon didn't have a very successful progression free survival rate – 12% and no change in overall survival. That being said, Interferon has helped many people stay NED for much longer. I chose the ipi/placebo trial in Montreal because I knew being in a trial, I'd be watched and examined constantly. Thank God for that trial because 2 months before my scheduled 3 month scan, they found suspicious nodules in my lungs which took me off the trial. I had my melanoma and lymph nodes removed on February 25th, so this is scary to me.
My melanoma was very deep (nodular) and I have all the makings for a bad prognosis. Clinical trials have the latest and greatest drugs that seem to be working much better than the older ones. My surgical oncologist said, Interferon is still being used, but because of the advancement in medicine, people are opting for trials.
I made myself sick trying to think of what treatment to go with. Even after picking the ipi/placebo trial, I still went back and forth on the Interferon option. Once I met with the clinical trial Dr's, I felt much more at ease with my decision.
Best of luck to you. I wish you NED for many years.
Lisa
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- May 16, 2011 at 12:15 pm
Hi Becca,
I was diagnosed this year with Stage 3c – deep, 1 macro node and ulcerated. My oncologist suggested that Interferon didn't have a very successful progression free survival rate – 12% and no change in overall survival. That being said, Interferon has helped many people stay NED for much longer. I chose the ipi/placebo trial in Montreal because I knew being in a trial, I'd be watched and examined constantly. Thank God for that trial because 2 months before my scheduled 3 month scan, they found suspicious nodules in my lungs which took me off the trial. I had my melanoma and lymph nodes removed on February 25th, so this is scary to me.
My melanoma was very deep (nodular) and I have all the makings for a bad prognosis. Clinical trials have the latest and greatest drugs that seem to be working much better than the older ones. My surgical oncologist said, Interferon is still being used, but because of the advancement in medicine, people are opting for trials.
I made myself sick trying to think of what treatment to go with. Even after picking the ipi/placebo trial, I still went back and forth on the Interferon option. Once I met with the clinical trial Dr's, I felt much more at ease with my decision.
Best of luck to you. I wish you NED for many years.
Lisa
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- May 11, 2011 at 8:05 pm
Just got home from the oncologist. He advises observation. He kept waffling between saying I was a 3A or a 3B and I think he settled on A, but I'm not convinced. He said I fall into that grey area where there's not much they can do at this point but wait and make sure it doesn't come back. I asked him if that meant scans every 3 months and he said no, that would be too much radiation. Now I've heard lots of people here have scans every 3 months so I'm feeling very vulnerable right now. The doc says he goes by the national guidelines for Melanoma treatment. So I'm to just walk away and come back and see him in 3 months.
Meanwhile the PET scan found what they think is a cyst behind my knee, so they are going to do an MRI to make sure that's all it is.
I could have gone ahead with Interferon but said no due to the statistics of it not being very successful. But I do qualify for a Clinical trial of Yervoy. But there would be a 50-50 chance I would get the placebo and not the drug. Also, it's at the Moffitt cancer center in Tampa and that's 3 hours from me. My mom is not happy at the prospect of having to drive me there and back several times in the next few months.
I am on the edge of saying no, nevermind. Everyone in my family is telling me to do observation, just wait and watch.
I'm scared to do nothing, but I may not have much choice. Also people are asking me why am I so concerned it will pop up somewhere else in my body when they got it all in the surgery? I just point to this website and say so many people thought their's was gone too, and it does have a tendency to pop up again later. My mom doesn't understand it. She thinks "Surgery done, no more cancer, you're cured!".
Reading all the stuff here, I know it's not that simple.
I'm starting to feel a little alone in my fears.
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