› Forums › General Melanoma Community › Some General Things for Newbies To Know
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Lunawest.
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- May 23, 2011 at 11:45 am
Sonce we've had so many newly diagnosed melanoma warriors join our ranks lately, all needing the same general info, I thought it might be helpful to corrale general stuff. Please add to the list.
Sonce we've had so many newly diagnosed melanoma warriors join our ranks lately, all needing the same general info, I thought it might be helpful to corrale general stuff. Please add to the list.
1. Remember we're all different. Get advice and opinions from good, reliable sources, like here, but then, know yourself. Know your body, your medical history, what you can tolerate and what you can't. Make informed decisions, as best as you can realizing nothing is guaranteed, then proceed and don't look back. Don't second guess yourself. It won't help. The clock can't be turned back, so do what YOU think is best for YOU.
2, Do that under the care of melanoma specialists! I don't care if your general oncologist is your dear favorite uncle, get a referral and be treated by a melanoma specialist. That is vital! Your dermatologist, oncologist should you eed one, and surgical oncologist should ALL be melanoma specialists.
3. Don't let fear, panic, or anger rule the day. They are all normal reactions to a new diagnosis and all can be great motivators, BUT, they can work against you and paralyze instead of spur on. Attitude is key and a positive attitude is actually scientifically proven to be beneficial in a multitide of ways and an attitude of gratefulness. You can't control melanoma BUT you CAN control how you respond to this. It may take you a lot of selk-discipline to be positive but you can learn, It may come easily. It will be to your benefit to keep a good attitude.
4.Remember, your pharmacist is also a valuable resource! I'm married to one, mother to another, and sister-in-law to one. There's a mutant gene in my husband's family…they aren't the only ones, so I've seen these folks up close and personal in a way many of you haven't. They KNOW their drug interactions! Our doctors DON'T. Shocking, but true. They know what side-effects you might experiience and can counsel you about them and when you need to call your doctor.
5. Because of number 4, please make sure you have ONE pharmacy you deal with. You have many doctors and maybe many meds. You want the best prices on all of them and that may mean you take different prescriptions to different pharmacies, or even order online. One, online, you don't get the professional counsel and you're short-changing yourself. Multiple pharmacies and online shopping both will present another problem…all your meds aren't listed together so know one is able to spot possible drug interractions that can cause real problems. It may cost you more in dollars to have all your scrips filled at one place, but you'll save in other ways that you can't put a price tag on…unless you experience a costly drug interaction problem that could have been caught and prevented had one pharmacy known ALL your meds.
Group, please add.
Grace and peace,
Carol
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- May 23, 2011 at 1:19 pm
Carol,
#5 is so true!!! I have to have maintenance drugs filled by mail if I want any coverage from my insurance company. Got an antibiotic and the Dr didn't warn me. Actually had it filled at the hospital pharmacy that has a list of all of my maintenance drugs. Sure enough had an interaction and liver levels when 9 times normal!! Now when I get a 1 time drug I hand the pharmacist the list and ask questions.
Another add on to your list. For those reading their original pathology for the first time. There is a difference between a Clark level 4 (for example) and stage 4! That has freaked so many out in the past.
Also, let your specialist explain your scan reports to you, if you can get ahold of them ahead of time it's not a wise issue to read them. Radiologists point out everything they see. Some of these things are not necessarily a problem but to our untrained mind we automatically think of problems!!
Off to my surgeons appointment now to find out my next step,
Linda
Stage IV since 06
I want Ned to be my companion again!!
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- May 23, 2011 at 1:19 pm
Carol,
#5 is so true!!! I have to have maintenance drugs filled by mail if I want any coverage from my insurance company. Got an antibiotic and the Dr didn't warn me. Actually had it filled at the hospital pharmacy that has a list of all of my maintenance drugs. Sure enough had an interaction and liver levels when 9 times normal!! Now when I get a 1 time drug I hand the pharmacist the list and ask questions.
Another add on to your list. For those reading their original pathology for the first time. There is a difference between a Clark level 4 (for example) and stage 4! That has freaked so many out in the past.
Also, let your specialist explain your scan reports to you, if you can get ahold of them ahead of time it's not a wise issue to read them. Radiologists point out everything they see. Some of these things are not necessarily a problem but to our untrained mind we automatically think of problems!!
Off to my surgeons appointment now to find out my next step,
Linda
Stage IV since 06
I want Ned to be my companion again!!
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- May 23, 2011 at 5:46 pm
Carol. I like your list, and I appreciate all the time you spend offerening comfort and advice to new patients.
I have some disagreements with number 2. It's something I hear here, shouted from the rooftops, and not just by you. I've even shouted it to people myself; Get Thee to a Melanoma Specialist!
But there are some individual things that need to be taken into account.
I see people on here almost every day who are stage one, with shallow melanomas, awaiting a WLE with a surgeon, and I'll see two or three people tell her to go to a melanoma specialist.
My first three wide excisions were done by a general surgeon whose specialty was surgery of the hand (no mels on my hand) he did a great job. bacl then, no one would have sent a stage 1 patient to an oncologist at all! there are STILL plenty of early stage 1 patients who are never referred to an oncologist, and might not ever be.
My oncological surgeon does quite a bit of melanoma surgery, but there is NO melanoma center in spokane wa. NONE of the many oncologists I've seen in Spokane are melanoma specialists. They all give me great care.
I have seen specialists. I flew over to SCCA when I advanced to stage 3 back in 2003, spent many many hours on the Melanoma FLoor speaking to Dr. Thompson and his associates. They all agreed with the course of action my medical oncologist in spokane had suggested. So that's what I did, and was treated during that year here at my local onc's office.
When I advanced to stage IV in 08, I once again traveled over to Seattle to the MEL center. Unable to see Dr. T, I saw a newer doc there (still a melanoma specialist) who I was quite disappointed with and headed back home.
Then I went to California to a melanoma specialist who I was required to see in order to start my clinical trial there. I went down there 5 times in 5 weeks and then once a month for 5 months and never saw that doc again..just the amazing nurses and NPs there. I was, once again, followed by my local medical oncologist (who is not a melanoma specialist)
While it may be IDEAL for every melanoma patient to see a melanoma specialist, it's not always feasible, practical or even possible.
It's easy enough if one lives in a big city, near a major melanoma center, to follow this advice. For instance, at SCCA, the Melanoma Center has a dermatologist as well as medical, surgical and radiation oncologists who all specilize in melanoma. So early stage patients can go to the derm, and then, blessed be, already have an ~IN~ to the center's great docs should they progress to a higher stage.
But if one lives in Gardner North Dakota and already has to drive 90 minutes just to find a cancer center, and the nearest melanoma center is1500 miles away and the patient has a .38 lesion with clear margins..well.. pretty pricy to be doing all that.
The other day I spoke to a fellow in the chat room who had paid for his own PET because insurance wouldn't pay for it and someone (not his doctor) suggested he needed it! He was stage II so I'm not sure how he even got one ordered
Certainly, there are certain people we want to go pick up and Drive them to the nearest melanoma center even if it's a thousand miles away; Those are the more advanced patients, who are obviously advancing quickly.
Sometimes we see people come to this board to tell us things like, "my husband had a scan and they say it's nothing to worry about, but I can feel a lump under his skin and it's growing and they saw some nodules in his liver and now they want to try radiation on his arm, but wait anohter 6 weeks for more scans' .. If this kind of vergiage is coming to us from a patient who is still sitting in some farm town in nebraska…THOSE we wanna RUN to the mel specialist!
It takes a team really, when one is geographically challenged. Unless one is prepared to quit jobs, uproot family and MOVE to Houston or someplace else with a major melanoma center. Or they are independently wealthy.
Getting an oncologist who will work with you, listen to you, treat you with respect, and consult with the melanoma specialists is important…sometimes more important than having the biggest name in melanoma .
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- May 23, 2011 at 8:04 pm
Dian,
You make great, valid points. I have to drive over two hours each way to see all my specialists and it's worth every mile. So, I know not everyone lives close to a major medical center. What I didn't realize is that some can live over 1000 miles from one!
So, I hope newbies pay close attention to your last sentence! And, in that case, it would be good to ask your onc about their experience with melanoma. I wouldn't want to be their first case!
Thanks.
Grace and peace,
Carol
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- May 23, 2011 at 11:36 pm
I also agree with Dian when it comes to early stage individuals. In most cases, for stage 0 or 1, what is an oncologist going to do for them? They have a WLE and then need skin checks. An oncologist treats active disease and most stage 0/1 individuals will never have active disease once their primary tumor is removed. In many cases, a melanoma oncologist won't see patients who aren't stage III+. My first two primaries were removed (via excisional biopsy) by a normal dermatologist. I found my way to a cancer center after the second. My current doctor is a cutaneous oncologist. He would not treat me if I advanced to stage III/IV as he treats early disease. He biopsied my 3rd primary with a shave biopsy because he thought it was nothing. It was my deepest. We've since developed a great relationship. But in truth, my normal dermatologist actually gave me better care and listened to my concerns better than my first experience with the specialist.
For me, I have a melanoma center here in Salt Lake City. They have clinical trials, etc. If I wanted a second opinion or a trial not at that center, I'd be traveling to Denver (500 miles), California (800+ miles depending on location), Seattle (900 miles), or MD Anderson (1400 miles). People who live in the east with large population centers and many medical centers often don't realize how large the west is, and how sparsely populated it can be when it comes to medical treatment.
I think that the MOST important thing is to find someone you can work with and feel comfortable with. If they aren't a specialist, they may be willing to work with a specialist. It's all about getting great care from someone – specialist or not – who treats you and makes you feel comfortable. A specialist who treats you as a number isn't nearly as satisfying as a generalist who works hard to find the best treatment for you they can.
Best wishes,
Jan
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- May 23, 2011 at 11:36 pm
I also agree with Dian when it comes to early stage individuals. In most cases, for stage 0 or 1, what is an oncologist going to do for them? They have a WLE and then need skin checks. An oncologist treats active disease and most stage 0/1 individuals will never have active disease once their primary tumor is removed. In many cases, a melanoma oncologist won't see patients who aren't stage III+. My first two primaries were removed (via excisional biopsy) by a normal dermatologist. I found my way to a cancer center after the second. My current doctor is a cutaneous oncologist. He would not treat me if I advanced to stage III/IV as he treats early disease. He biopsied my 3rd primary with a shave biopsy because he thought it was nothing. It was my deepest. We've since developed a great relationship. But in truth, my normal dermatologist actually gave me better care and listened to my concerns better than my first experience with the specialist.
For me, I have a melanoma center here in Salt Lake City. They have clinical trials, etc. If I wanted a second opinion or a trial not at that center, I'd be traveling to Denver (500 miles), California (800+ miles depending on location), Seattle (900 miles), or MD Anderson (1400 miles). People who live in the east with large population centers and many medical centers often don't realize how large the west is, and how sparsely populated it can be when it comes to medical treatment.
I think that the MOST important thing is to find someone you can work with and feel comfortable with. If they aren't a specialist, they may be willing to work with a specialist. It's all about getting great care from someone – specialist or not – who treats you and makes you feel comfortable. A specialist who treats you as a number isn't nearly as satisfying as a generalist who works hard to find the best treatment for you they can.
Best wishes,
Jan
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- May 23, 2011 at 8:04 pm
Dian,
You make great, valid points. I have to drive over two hours each way to see all my specialists and it's worth every mile. So, I know not everyone lives close to a major medical center. What I didn't realize is that some can live over 1000 miles from one!
So, I hope newbies pay close attention to your last sentence! And, in that case, it would be good to ask your onc about their experience with melanoma. I wouldn't want to be their first case!
Thanks.
Grace and peace,
Carol
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- May 23, 2011 at 5:46 pm
Carol. I like your list, and I appreciate all the time you spend offerening comfort and advice to new patients.
I have some disagreements with number 2. It's something I hear here, shouted from the rooftops, and not just by you. I've even shouted it to people myself; Get Thee to a Melanoma Specialist!
But there are some individual things that need to be taken into account.
I see people on here almost every day who are stage one, with shallow melanomas, awaiting a WLE with a surgeon, and I'll see two or three people tell her to go to a melanoma specialist.
My first three wide excisions were done by a general surgeon whose specialty was surgery of the hand (no mels on my hand) he did a great job. bacl then, no one would have sent a stage 1 patient to an oncologist at all! there are STILL plenty of early stage 1 patients who are never referred to an oncologist, and might not ever be.
My oncological surgeon does quite a bit of melanoma surgery, but there is NO melanoma center in spokane wa. NONE of the many oncologists I've seen in Spokane are melanoma specialists. They all give me great care.
I have seen specialists. I flew over to SCCA when I advanced to stage 3 back in 2003, spent many many hours on the Melanoma FLoor speaking to Dr. Thompson and his associates. They all agreed with the course of action my medical oncologist in spokane had suggested. So that's what I did, and was treated during that year here at my local onc's office.
When I advanced to stage IV in 08, I once again traveled over to Seattle to the MEL center. Unable to see Dr. T, I saw a newer doc there (still a melanoma specialist) who I was quite disappointed with and headed back home.
Then I went to California to a melanoma specialist who I was required to see in order to start my clinical trial there. I went down there 5 times in 5 weeks and then once a month for 5 months and never saw that doc again..just the amazing nurses and NPs there. I was, once again, followed by my local medical oncologist (who is not a melanoma specialist)
While it may be IDEAL for every melanoma patient to see a melanoma specialist, it's not always feasible, practical or even possible.
It's easy enough if one lives in a big city, near a major melanoma center, to follow this advice. For instance, at SCCA, the Melanoma Center has a dermatologist as well as medical, surgical and radiation oncologists who all specilize in melanoma. So early stage patients can go to the derm, and then, blessed be, already have an ~IN~ to the center's great docs should they progress to a higher stage.
But if one lives in Gardner North Dakota and already has to drive 90 minutes just to find a cancer center, and the nearest melanoma center is1500 miles away and the patient has a .38 lesion with clear margins..well.. pretty pricy to be doing all that.
The other day I spoke to a fellow in the chat room who had paid for his own PET because insurance wouldn't pay for it and someone (not his doctor) suggested he needed it! He was stage II so I'm not sure how he even got one ordered
Certainly, there are certain people we want to go pick up and Drive them to the nearest melanoma center even if it's a thousand miles away; Those are the more advanced patients, who are obviously advancing quickly.
Sometimes we see people come to this board to tell us things like, "my husband had a scan and they say it's nothing to worry about, but I can feel a lump under his skin and it's growing and they saw some nodules in his liver and now they want to try radiation on his arm, but wait anohter 6 weeks for more scans' .. If this kind of vergiage is coming to us from a patient who is still sitting in some farm town in nebraska…THOSE we wanna RUN to the mel specialist!
It takes a team really, when one is geographically challenged. Unless one is prepared to quit jobs, uproot family and MOVE to Houston or someplace else with a major melanoma center. Or they are independently wealthy.
Getting an oncologist who will work with you, listen to you, treat you with respect, and consult with the melanoma specialists is important…sometimes more important than having the biggest name in melanoma .
-
- May 23, 2011 at 7:13 pm
When I was first diagnosed December, 2009. I just assumed that with something as serious as cancer I would go to a doctor and they would give me a clear, concise plan of action.
That is not what happened. My regular doctor gave me the name of a surgeon who didn't know what to do with me and referred me to another surgeon. He gave me the name of a dermatologist who was too modest to do a body mole check on me ( to look for more primaries), this derm said that was my JOB to check my moles. Weeks later I was given the name of a local oncologist. I had to fire the first onc and am now happy with my new onc who keeps in touch with and gets advice from a tumor board and a specialist at University of Colorado Cancer Clinic.
Anyway, almost 18 months later, I have learned to SLOW DOWN and do some research online, make phone calls and talk to other cancer survivors about treatment.
I guess my advice to newly diagnosed cancer patients is: Do not expect the doctors to give you the guidance you wish they would. YOU have to research this disease and treatments and be informed when you meet with your doctors. ADVOCATE for your care, YOU are the one with the most to lose. Some doctors are better than others, trust your gut. You are the boss, really. If they don't act as quickly or professionally as you think they should, fire their butts.
Nicki, Stage 3b, scalp
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- May 23, 2011 at 7:13 pm
When I was first diagnosed December, 2009. I just assumed that with something as serious as cancer I would go to a doctor and they would give me a clear, concise plan of action.
That is not what happened. My regular doctor gave me the name of a surgeon who didn't know what to do with me and referred me to another surgeon. He gave me the name of a dermatologist who was too modest to do a body mole check on me ( to look for more primaries), this derm said that was my JOB to check my moles. Weeks later I was given the name of a local oncologist. I had to fire the first onc and am now happy with my new onc who keeps in touch with and gets advice from a tumor board and a specialist at University of Colorado Cancer Clinic.
Anyway, almost 18 months later, I have learned to SLOW DOWN and do some research online, make phone calls and talk to other cancer survivors about treatment.
I guess my advice to newly diagnosed cancer patients is: Do not expect the doctors to give you the guidance you wish they would. YOU have to research this disease and treatments and be informed when you meet with your doctors. ADVOCATE for your care, YOU are the one with the most to lose. Some doctors are better than others, trust your gut. You are the boss, really. If they don't act as quickly or professionally as you think they should, fire their butts.
Nicki, Stage 3b, scalp
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- May 23, 2011 at 11:42 pm
This is a great post with lots of excellent advice. I am relatively new to this forum as well, but cannot stress enough the mportance of seeing a melanoma specialist. When my derm first diagnosed me in March of this year, she referred me to a surgeon @ Yale New Haven, nearly an hour from my home. At first I found myself wondering why I had to travel so far to get treated. After two surgeries in a month (tumor excision, followed by surgical treatment of an infected seroma), I feel fortunate to have been treated at one of the most established melanoma programs in the country, by one of it’s founding surgeons. He informed me every step of the way with all the “If … then” scenarios, and I never felt like I didn’t know what was coming next. A melanoma diagnosis is stressful, you need a health care team you have confidence in! -
- May 23, 2011 at 11:42 pm
This is a great post with lots of excellent advice. I am relatively new to this forum as well, but cannot stress enough the mportance of seeing a melanoma specialist. When my derm first diagnosed me in March of this year, she referred me to a surgeon @ Yale New Haven, nearly an hour from my home. At first I found myself wondering why I had to travel so far to get treated. After two surgeries in a month (tumor excision, followed by surgical treatment of an infected seroma), I feel fortunate to have been treated at one of the most established melanoma programs in the country, by one of it’s founding surgeons. He informed me every step of the way with all the “If … then” scenarios, and I never felt like I didn’t know what was coming next. A melanoma diagnosis is stressful, you need a health care team you have confidence in!
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