› Forums › General Melanoma Community › Stage 1B – Curious about what follow up tests others at same stage have had?
- This topic has 23 replies, 6 voices, and was last updated 8 years, 7 months ago by cece.
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- July 26, 2011 at 8:25 pm
Hi All…I was diagnosed with stage 1B melanoma in January of 2009. Small mole on my left should that I had my entire life that one day went from brown to black. Had local wide excision with sentinel node biopsy done on two sentinel nodes. Everthing was clear and I was staged at 1B based on depth. All tests and surgery were done at CINJ (New Brunswick, Dr Lee). My follow up treatment is very simple (which has me concerned). I now get blood work and a chest xray twice a year at 2 years out. For the first two years it was done at every 3 months.&
Hi All…I was diagnosed with stage 1B melanoma in January of 2009. Small mole on my left should that I had my entire life that one day went from brown to black. Had local wide excision with sentinel node biopsy done on two sentinel nodes. Everthing was clear and I was staged at 1B based on depth. All tests and surgery were done at CINJ (New Brunswick, Dr Lee). My follow up treatment is very simple (which has me concerned). I now get blood work and a chest xray twice a year at 2 years out. For the first two years it was done at every 3 months. Here is where my concern comes in…my father had a mole in almost the exact same place 8 years prior. Cancer free until October 2010 when it returned to his left lung. Once again cleared through his PET scan on Jan 29 2011. April 28, 2011…melanoma returned with a vengeance going to remaining lung, liver, brain and bones. In light of the family history I am concerned that the cancer will come back. My father's oncologists have all said "it is the silent cancer"…hiding until one day it just comes back and there really is no detecting it before it comes back. I currently go to Fox Chase in Philadelphia for my follow up care because CINJ wasn't the best experience for me. My doctor's nurse was very laid back and would barely palpate my lymph nodes during my exam. I didn't see my surgical oncologist once after the day he performed the surgery. All follow care was with his RN. Fox Chase dermatology department is beyond thorough…love Dr. Zook! I tried to get into the Genetic Risk Assessment Program at Fox Chase BUT was told I do not qualify because there ins't enough family history (guess me and my father having melanoma isn't enough?) So…my question is, what follow testing do you receive? After I want to be as proactive as possible and just feel that a simple chest xray and bloodwork really isn't enough. Any advice would be appreciated…thanks much!
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- July 26, 2011 at 9:51 pm
I do not know what your father went through specifically, and what stage and age he was when diagnosed, but in light of what your father has gone through since, I do understand your concerns. But, that does not mean you will ever have the same result and progress to stage four. At stage one and 2.5 years out from diagnosis, you should be happy you are this far out from diagnosis, and that you are doing all you can. At stage one, there really is not much more you can do other than watching yourself for "change" and keeping up on derm visits and node checks. Even palpating your nodes too often is not a good idea as they will become sore and you may think the melanoma has returned. Blood work and chest x-ray will not show anything at your early stage. Actually, blood work is notorious for false positives and negatives, and x-rays have “thingy’s” that show quite often such as scarring or damage from a recent illness.
Again, you should congratulate yourself for catching this so early. Perhaps seeing a counselor may be to your benefit as well to ease your mind.
Also, has your father been tested for the BRAF mutation? It may buy him some time.
Good luck to both you and your father.
Michael 1b as well- three years out with no x-rays or blood work.
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- July 27, 2011 at 4:45 pm
Thank you Michael! I appreciate your response. I just felt that it may be worth it to "pick someone else's brain" to see if my care is consistent with others. I do have a great dermatologist and I visit every three months. That coupled with my surgical oncologists appointments every six months seems in line with everyone else. I absolutely keep on top of my follow up care and I don't let the thought of recurrence stop me from enjoying my life. I live every day to the fullest…I am beyond blessed!
Mr father's oncologist did contact the thoracic surgeon who removed my fathers lung to see if they tested him for the BRAF mutation but unfortunately they did not. So far his oncologist has not recommended it but I believe that is because he is so ill. Most days getting out of bed is a struggle. He is 69 years old and has deteriorated extremely fast over the past three months.
Tthanks again for your response…be happy and healthy!
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- July 27, 2011 at 4:45 pm
Thank you Michael! I appreciate your response. I just felt that it may be worth it to "pick someone else's brain" to see if my care is consistent with others. I do have a great dermatologist and I visit every three months. That coupled with my surgical oncologists appointments every six months seems in line with everyone else. I absolutely keep on top of my follow up care and I don't let the thought of recurrence stop me from enjoying my life. I live every day to the fullest…I am beyond blessed!
Mr father's oncologist did contact the thoracic surgeon who removed my fathers lung to see if they tested him for the BRAF mutation but unfortunately they did not. So far his oncologist has not recommended it but I believe that is because he is so ill. Most days getting out of bed is a struggle. He is 69 years old and has deteriorated extremely fast over the past three months.
Tthanks again for your response…be happy and healthy!
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- July 26, 2011 at 9:51 pm
I do not know what your father went through specifically, and what stage and age he was when diagnosed, but in light of what your father has gone through since, I do understand your concerns. But, that does not mean you will ever have the same result and progress to stage four. At stage one and 2.5 years out from diagnosis, you should be happy you are this far out from diagnosis, and that you are doing all you can. At stage one, there really is not much more you can do other than watching yourself for "change" and keeping up on derm visits and node checks. Even palpating your nodes too often is not a good idea as they will become sore and you may think the melanoma has returned. Blood work and chest x-ray will not show anything at your early stage. Actually, blood work is notorious for false positives and negatives, and x-rays have “thingy’s” that show quite often such as scarring or damage from a recent illness.
Again, you should congratulate yourself for catching this so early. Perhaps seeing a counselor may be to your benefit as well to ease your mind.
Also, has your father been tested for the BRAF mutation? It may buy him some time.
Good luck to both you and your father.
Michael 1b as well- three years out with no x-rays or blood work.
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- July 26, 2011 at 11:40 pm
It sounds like you are getting above average followup for stage IB. I've had a baseline chest X-Ray (many years ago) and bloodwork done once. Since bloodwork really is limited in looking for recurrent melanoma, I don't see the point. In general, melanoma typically travels to the nearest lymph node basin so chest x-rays are of limited value to most because it usually shows up elsewhere first. (I know this isn't how it presented in your father, but statistically, this is the case).
It's true you don't have enough family members to participate in genetic testing. They don't consider 2 enough to be a trend especially when you likely shared the same sun habits, etc., and environment. I was told AT LEAST 3 family members in multiple generations and they prefer 4 to even start looking. I have been tested and am positive. I am adopted so have no known family history, but I've had 3 primary melanoma which can also be an indication of a genetic defect. I was told > 2 melanomas indicates higher risk.
You are really having followup care above and beyond most stage IB. Scans aren't done at this stage because they have lots of radiation, lots of false positives (you see something, you have to check it out – but it is rarely any type of malignancy) and scans are expensive. Statistically (again, I know), scans haven't been shown to improve survival rates either. I have been stage IB for 19 years and am currently seen every 6 months for a body check. The 6 month frequency is based on my multiple primaries, otherwise I'd be seen yearly at this point.
While it is easy to compare yourself to your father, it's best not to go there. Each person is unique and even people with very similar melanomas may fair differently. You didn't indicate the depth of your lesions (or your father's depth either) which is the most important factor for your prognosis. Melanoma can come back at any time, but the first two years are when you are at highest risk – and you've passed that milestone. As each year passes, your odds improve.
Best wishes,
Janner
Stage IB since 1992, 3 MM primaries
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- July 27, 2011 at 4:51 pm
Ok so with each reply I feel better! Thank you Janner. My depth was 1.1 and my fathers was 2.0 at initial diagnosis. I really do live life to the fullest but I always have a slight concern when it comes to my health. I feel that you can never be too careful. Especially when you see someone you love so dearly suffer so much!
I appreciate your response…be healthy!
Karin
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- July 27, 2011 at 4:51 pm
Ok so with each reply I feel better! Thank you Janner. My depth was 1.1 and my fathers was 2.0 at initial diagnosis. I really do live life to the fullest but I always have a slight concern when it comes to my health. I feel that you can never be too careful. Especially when you see someone you love so dearly suffer so much!
I appreciate your response…be healthy!
Karin
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- July 28, 2011 at 2:14 am
I do get where you are coming from. I am adopted, but my adopted father has 4 cancers – including stage III melanoma, stage IV prostate cancer, stage I lung cancer and thyroid cancer. My adopted mother just had a melanoma in situ removed (stage 0). I find it much easier to deal with myself than deal with my parents' illnesses!
Best wishes,
Janner.
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- July 28, 2011 at 2:14 am
I do get where you are coming from. I am adopted, but my adopted father has 4 cancers – including stage III melanoma, stage IV prostate cancer, stage I lung cancer and thyroid cancer. My adopted mother just had a melanoma in situ removed (stage 0). I find it much easier to deal with myself than deal with my parents' illnesses!
Best wishes,
Janner.
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- July 26, 2011 at 11:40 pm
It sounds like you are getting above average followup for stage IB. I've had a baseline chest X-Ray (many years ago) and bloodwork done once. Since bloodwork really is limited in looking for recurrent melanoma, I don't see the point. In general, melanoma typically travels to the nearest lymph node basin so chest x-rays are of limited value to most because it usually shows up elsewhere first. (I know this isn't how it presented in your father, but statistically, this is the case).
It's true you don't have enough family members to participate in genetic testing. They don't consider 2 enough to be a trend especially when you likely shared the same sun habits, etc., and environment. I was told AT LEAST 3 family members in multiple generations and they prefer 4 to even start looking. I have been tested and am positive. I am adopted so have no known family history, but I've had 3 primary melanoma which can also be an indication of a genetic defect. I was told > 2 melanomas indicates higher risk.
You are really having followup care above and beyond most stage IB. Scans aren't done at this stage because they have lots of radiation, lots of false positives (you see something, you have to check it out – but it is rarely any type of malignancy) and scans are expensive. Statistically (again, I know), scans haven't been shown to improve survival rates either. I have been stage IB for 19 years and am currently seen every 6 months for a body check. The 6 month frequency is based on my multiple primaries, otherwise I'd be seen yearly at this point.
While it is easy to compare yourself to your father, it's best not to go there. Each person is unique and even people with very similar melanomas may fair differently. You didn't indicate the depth of your lesions (or your father's depth either) which is the most important factor for your prognosis. Melanoma can come back at any time, but the first two years are when you are at highest risk – and you've passed that milestone. As each year passes, your odds improve.
Best wishes,
Janner
Stage IB since 1992, 3 MM primaries
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- July 26, 2011 at 11:47 pm
First of all, I am very sorry about your father. I hope he finds a treatment that beats the cancer back.
I can certainly relate to the desire to be proactive. I am also Stage 1B. As other people have recently told me, though, there is only so much you can do to take control of your fate with melanoma. Regular, very thorough skin exams by a good doctor and self-exams are the most important things. I don't know how helpful the x-rays and the bloodwork is for melanoma, but at a minimum they probably give you some peace of mind. Beyond that, excercise, healthy diet, vitamins and supplements… There are some good books out there that provide a health regimen that people swear by. You might find that following one of them gives you the proactive activity that you need.
I think the evidence that melanoma runs in families is inconclusive. What does Dr. Zook say about it? Anyway, I don't think you should feel locked in to your father's fate. For one thing, how deep was your father's lesion? Deeper than yours? That's far more determative than family relation. Also, your father is dealing with melanoma at a later age than you are. In every study I've read, age is a big factor in outcome. Of course, some day you'll be your father's age, but by then treatments will likely be far more advanced in case you do get a recurance. I think you should get into the exercise and health food thing, if you haven't already. That's the extent of what you can do.
It feels strange giving out advise that I badly need myself. Kind of therapeutic, too. Best of luck to you and your father!
Steve
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- July 27, 2011 at 4:59 pm
Thank you for the kind words! My Dad is an amazing man…the world will surely be less one great man when he passes. He isn't fairing very well with treatments and the side effects from the brain tumor have debilitated him. His tumor is in the pons area of his brain and it is inoperable. It is amazing how quickly the disease can ravage a persons body. He, like me, kept on top of his follow up care. Never missed an appointment in the 10 years he was cancer free (PET scans,MRI's, bloodwork, xrays). My fathers depth at diagnosis was deeper than mine. He was 58 when initially diagnosed…I was 43.
I just thought I would see if my treatment was in line with others. Knowing that it is definitely gives me the peace of mind knowing that I am doing all I can do. I enjoy each day, live life to the fullest and love my life!
Certainly don't feel strange about giving advice. I find that we all become fast friends when you have such a nasty disease in common.
Be healthy!
Karin
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- May 22, 2015 at 1:54 pm
Hi Karin,
It's been a few years but I came across your post and wanted to reach out. How are you? I was diagnosed in January with stage1B (0.8mm, no ulceration, negative SLNB). There's not too many people posting on these boards who are also stage 1B. I'm dealing with the same feelings you had in your post- is my follow up care enough? Shouldn't they be doing a ct scan on me every so often? etc, etc. My tumor was submitted for the DecisionDX gene test but they weren't able to run the test because my sample wasn't dense enough. Other than than I'm taking my supplements (multi vitamin, CoQ10, and curcumin), eating health, and exercising as I always have. I just wish I could be doing something more. And, I'm realizing that this first summer after diagnosis is going to rough. I have two young children who love to play outside and as careful as we are, I still dread going outdoors lately, for fear of some UVA rays getting to me and somehow making any lingering melanoma cells grow. Crazy, I know, but these are the worries we probably all have… Well, I hope you're doing well. If you have any advice I'd love to hear it!
Cecelia
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- June 24, 2015 at 8:09 pm
Cecilia, I am also stage 1b and I have noticed that not to many people post here. I also had the genetic test but I have not received the results. I was .63 depth and 2 mitosis. Get back to me I would like to compare pathologies- mark- [email protected]
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- March 1, 2016 at 5:51 pm
Hi Mark,
I am so sorry I'm just now seeing your message from last June! I hate that we don't get emailed when someone replies to us on these boards; it's hard to keep track of where we've posted. Anyway, I hope you're doing well. Did you get your DecisionDx test results back? I hope the news was good. I was so disappointed when I learned they couldn't run the test on my tumor. I was hoping it would give me that extra bit of reassurance I need! As for my path report, I was 0.80 mm, no ulceration, and a mitotic index of "greater than 1 per mm squared." They didn't give me an exact number for it. My peripheral margins were "close but free" and deep margin was free. Tumor infiltrating lymphocytes was "brisk." And as I mentioned, my slnb was negative. My surigical oncologist (who specializes in melanoma) removed 2 sentinel nodes and they were negative.
I will continue to see my dermatologist every 3 months and my surgical oncologist yearly. I started having headaches last fall and mentioned this to him and he said we could do an MRI to rule anything out. I did, and everything was normal, so that's a relief. I think the way to live with this is just to be aware of your body and mention any changes you notice to your doctor (and make sure your doctors all know of your melanoma history). I've learned how important it is to be your own advocate. Doctors don't know everything and they certainly don't know your body better than you. Whenever I think something is wrong, I speak up (hence the MRI). I know I'm more paranoid than most, but better safe than sorry in my opinion.
Cecelia
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- March 1, 2016 at 5:51 pm
Hi Mark,
I am so sorry I'm just now seeing your message from last June! I hate that we don't get emailed when someone replies to us on these boards; it's hard to keep track of where we've posted. Anyway, I hope you're doing well. Did you get your DecisionDx test results back? I hope the news was good. I was so disappointed when I learned they couldn't run the test on my tumor. I was hoping it would give me that extra bit of reassurance I need! As for my path report, I was 0.80 mm, no ulceration, and a mitotic index of "greater than 1 per mm squared." They didn't give me an exact number for it. My peripheral margins were "close but free" and deep margin was free. Tumor infiltrating lymphocytes was "brisk." And as I mentioned, my slnb was negative. My surigical oncologist (who specializes in melanoma) removed 2 sentinel nodes and they were negative.
I will continue to see my dermatologist every 3 months and my surgical oncologist yearly. I started having headaches last fall and mentioned this to him and he said we could do an MRI to rule anything out. I did, and everything was normal, so that's a relief. I think the way to live with this is just to be aware of your body and mention any changes you notice to your doctor (and make sure your doctors all know of your melanoma history). I've learned how important it is to be your own advocate. Doctors don't know everything and they certainly don't know your body better than you. Whenever I think something is wrong, I speak up (hence the MRI). I know I'm more paranoid than most, but better safe than sorry in my opinion.
Cecelia
-
- March 1, 2016 at 5:51 pm
Hi Mark,
I am so sorry I'm just now seeing your message from last June! I hate that we don't get emailed when someone replies to us on these boards; it's hard to keep track of where we've posted. Anyway, I hope you're doing well. Did you get your DecisionDx test results back? I hope the news was good. I was so disappointed when I learned they couldn't run the test on my tumor. I was hoping it would give me that extra bit of reassurance I need! As for my path report, I was 0.80 mm, no ulceration, and a mitotic index of "greater than 1 per mm squared." They didn't give me an exact number for it. My peripheral margins were "close but free" and deep margin was free. Tumor infiltrating lymphocytes was "brisk." And as I mentioned, my slnb was negative. My surigical oncologist (who specializes in melanoma) removed 2 sentinel nodes and they were negative.
I will continue to see my dermatologist every 3 months and my surgical oncologist yearly. I started having headaches last fall and mentioned this to him and he said we could do an MRI to rule anything out. I did, and everything was normal, so that's a relief. I think the way to live with this is just to be aware of your body and mention any changes you notice to your doctor (and make sure your doctors all know of your melanoma history). I've learned how important it is to be your own advocate. Doctors don't know everything and they certainly don't know your body better than you. Whenever I think something is wrong, I speak up (hence the MRI). I know I'm more paranoid than most, but better safe than sorry in my opinion.
Cecelia
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- June 24, 2015 at 8:09 pm
Cecilia, I am also stage 1b and I have noticed that not to many people post here. I also had the genetic test but I have not received the results. I was .63 depth and 2 mitosis. Get back to me I would like to compare pathologies- mark- [email protected]
-
- June 24, 2015 at 8:09 pm
Cecilia, I am also stage 1b and I have noticed that not to many people post here. I also had the genetic test but I have not received the results. I was .63 depth and 2 mitosis. Get back to me I would like to compare pathologies- mark- [email protected]
-
- May 22, 2015 at 1:54 pm
Hi Karin,
It's been a few years but I came across your post and wanted to reach out. How are you? I was diagnosed in January with stage1B (0.8mm, no ulceration, negative SLNB). There's not too many people posting on these boards who are also stage 1B. I'm dealing with the same feelings you had in your post- is my follow up care enough? Shouldn't they be doing a ct scan on me every so often? etc, etc. My tumor was submitted for the DecisionDX gene test but they weren't able to run the test because my sample wasn't dense enough. Other than than I'm taking my supplements (multi vitamin, CoQ10, and curcumin), eating health, and exercising as I always have. I just wish I could be doing something more. And, I'm realizing that this first summer after diagnosis is going to rough. I have two young children who love to play outside and as careful as we are, I still dread going outdoors lately, for fear of some UVA rays getting to me and somehow making any lingering melanoma cells grow. Crazy, I know, but these are the worries we probably all have… Well, I hope you're doing well. If you have any advice I'd love to hear it!
Cecelia
-
- May 22, 2015 at 1:54 pm
Hi Karin,
It's been a few years but I came across your post and wanted to reach out. How are you? I was diagnosed in January with stage1B (0.8mm, no ulceration, negative SLNB). There's not too many people posting on these boards who are also stage 1B. I'm dealing with the same feelings you had in your post- is my follow up care enough? Shouldn't they be doing a ct scan on me every so often? etc, etc. My tumor was submitted for the DecisionDX gene test but they weren't able to run the test because my sample wasn't dense enough. Other than than I'm taking my supplements (multi vitamin, CoQ10, and curcumin), eating health, and exercising as I always have. I just wish I could be doing something more. And, I'm realizing that this first summer after diagnosis is going to rough. I have two young children who love to play outside and as careful as we are, I still dread going outdoors lately, for fear of some UVA rays getting to me and somehow making any lingering melanoma cells grow. Crazy, I know, but these are the worries we probably all have… Well, I hope you're doing well. If you have any advice I'd love to hear it!
Cecelia
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- July 27, 2011 at 4:59 pm
Thank you for the kind words! My Dad is an amazing man…the world will surely be less one great man when he passes. He isn't fairing very well with treatments and the side effects from the brain tumor have debilitated him. His tumor is in the pons area of his brain and it is inoperable. It is amazing how quickly the disease can ravage a persons body. He, like me, kept on top of his follow up care. Never missed an appointment in the 10 years he was cancer free (PET scans,MRI's, bloodwork, xrays). My fathers depth at diagnosis was deeper than mine. He was 58 when initially diagnosed…I was 43.
I just thought I would see if my treatment was in line with others. Knowing that it is definitely gives me the peace of mind knowing that I am doing all I can do. I enjoy each day, live life to the fullest and love my life!
Certainly don't feel strange about giving advice. I find that we all become fast friends when you have such a nasty disease in common.
Be healthy!
Karin
-
- July 26, 2011 at 11:47 pm
First of all, I am very sorry about your father. I hope he finds a treatment that beats the cancer back.
I can certainly relate to the desire to be proactive. I am also Stage 1B. As other people have recently told me, though, there is only so much you can do to take control of your fate with melanoma. Regular, very thorough skin exams by a good doctor and self-exams are the most important things. I don't know how helpful the x-rays and the bloodwork is for melanoma, but at a minimum they probably give you some peace of mind. Beyond that, excercise, healthy diet, vitamins and supplements… There are some good books out there that provide a health regimen that people swear by. You might find that following one of them gives you the proactive activity that you need.
I think the evidence that melanoma runs in families is inconclusive. What does Dr. Zook say about it? Anyway, I don't think you should feel locked in to your father's fate. For one thing, how deep was your father's lesion? Deeper than yours? That's far more determative than family relation. Also, your father is dealing with melanoma at a later age than you are. In every study I've read, age is a big factor in outcome. Of course, some day you'll be your father's age, but by then treatments will likely be far more advanced in case you do get a recurance. I think you should get into the exercise and health food thing, if you haven't already. That's the extent of what you can do.
It feels strange giving out advise that I badly need myself. Kind of therapeutic, too. Best of luck to you and your father!
Steve
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Tagged: cutaneous melanoma
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