› Forums › General Melanoma Community › Worried; am I not being proactive enough/too proactive?
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CHD.
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- February 7, 2016 at 6:52 am
Hello to all! Well, this month marks my 2 year anniversary of being diagnosed with stage 2A melanoma at age 24 (I'm 26 now) — 1.2 mm, mitotic rate of 2, and ulcerated.
Lately I've been having a whole lot of anxiety over the whole "ulcerated" thing, now that I'm approaching two years on. I don't know a whole lot about prognostic factors, but what I do know of ulceration haunts me.
In the past month, I've floated the idea of getting a CT scan just to check up on the state of my health by the melanoma specialist and the oncological surgeon (I'm with Dr Pavlick at NYU Langone). However, despite my having been stage 2A, they're both incredibly confident about NOT putting me through any unnecessary scans and have told me as such. I've asked them both twice, and they've told me this twice. They both want me to continue seeing them, but all they do is palpate my lymph nodes and do blood tests every six months.
I love their assuredness, but is this lax approach the general protocol for my stage? I keep feeling like I ought to be proactive and be sure I'm doing everything I can to "catch" anything early, but maybe I'm misguided in thinking of scans as the way to go. I have no idea! My prognosis just seems so dire to me lately that I feel like I should be doing… something.
Thanks for letting me blow off some steam, and if anyone has any insight into any of this… I am all ears. Thank you to all in this community for being a wealth of knowledge and compassion to each other; it's very heartening to read.
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- February 7, 2016 at 2:51 pm
I could not really find out what the whole ulcerated tumor means. I’m 3b and I search but I really don’t understand it either. Be glad it’s not in your lymph nodes. Greg -
- February 7, 2016 at 5:26 pm
Some major institutions don't scan stage 3 and stage 4 warriors unless they have symptoms. Scans haven't been shown to increase survival. Also, you are young and getting scans is a lot of radiation. I'm sure that is a factor for you. I suppose you could badger them for a chest X-ray regularly which would at least show you the lungs and has much lower radiation. You have passed the first milestone, two years NED. There is always a chance for recurrence but going without for the first two years is extremely positive!
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- February 7, 2016 at 5:26 pm
Some major institutions don't scan stage 3 and stage 4 warriors unless they have symptoms. Scans haven't been shown to increase survival. Also, you are young and getting scans is a lot of radiation. I'm sure that is a factor for you. I suppose you could badger them for a chest X-ray regularly which would at least show you the lungs and has much lower radiation. You have passed the first milestone, two years NED. There is always a chance for recurrence but going without for the first two years is extremely positive!
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- February 7, 2016 at 5:26 pm
Some major institutions don't scan stage 3 and stage 4 warriors unless they have symptoms. Scans haven't been shown to increase survival. Also, you are young and getting scans is a lot of radiation. I'm sure that is a factor for you. I suppose you could badger them for a chest X-ray regularly which would at least show you the lungs and has much lower radiation. You have passed the first milestone, two years NED. There is always a chance for recurrence but going without for the first two years is extremely positive!
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- February 7, 2016 at 6:56 pm
I was pretty confused about ulceration myself when I originally saw that word on my pathology report. From what I understand it means that the epidermis (outer most layer of skin) was broken over the Melanoma causing it to be able to spread to surrounding tissue.
When my surgeon asked me "did they get all of the Melanoma?" referring to the initial biopsy of my mole, I said I don't know. He looked at the pathology and said, "oh, no they didn't". My guess is he determined that by seeing ulceration on my path report. Obviously, I had a wide local excision done to get all of the tissue around the primary to make sure all surrounding tissue was clean.
So, I am assuming since you are still at stage 2, they did not find anything in your lymph nodes?
I can understand feeling as though the doctors are being very lax about everything. You shouldn't be getting a lot of scans just because of unncessesary exposure to radiation. That being said, if you've never had a scan, maybe getting one will ease your mind a little? One scan won't hurt… but they can be very expensive depending on your insurance.
All the best,
Jenn
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- February 7, 2016 at 6:56 pm
I was pretty confused about ulceration myself when I originally saw that word on my pathology report. From what I understand it means that the epidermis (outer most layer of skin) was broken over the Melanoma causing it to be able to spread to surrounding tissue.
When my surgeon asked me "did they get all of the Melanoma?" referring to the initial biopsy of my mole, I said I don't know. He looked at the pathology and said, "oh, no they didn't". My guess is he determined that by seeing ulceration on my path report. Obviously, I had a wide local excision done to get all of the tissue around the primary to make sure all surrounding tissue was clean.
So, I am assuming since you are still at stage 2, they did not find anything in your lymph nodes?
I can understand feeling as though the doctors are being very lax about everything. You shouldn't be getting a lot of scans just because of unncessesary exposure to radiation. That being said, if you've never had a scan, maybe getting one will ease your mind a little? One scan won't hurt… but they can be very expensive depending on your insurance.
All the best,
Jenn
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- February 7, 2016 at 8:41 pm
He said it before the surgery. He may or may not have said that due to ulceration. Margins definitely needed to get taken, as they do in all cases. That was just my initial interpretation of why he asked I guess. My scar is very long too… the small margins they mention doesn't seem like it would leave such a large scar, but due to the shape of it I guess it creates a pretty long scar.
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- February 7, 2016 at 8:41 pm
He said it before the surgery. He may or may not have said that due to ulceration. Margins definitely needed to get taken, as they do in all cases. That was just my initial interpretation of why he asked I guess. My scar is very long too… the small margins they mention doesn't seem like it would leave such a large scar, but due to the shape of it I guess it creates a pretty long scar.
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- February 7, 2016 at 8:41 pm
He said it before the surgery. He may or may not have said that due to ulceration. Margins definitely needed to get taken, as they do in all cases. That was just my initial interpretation of why he asked I guess. My scar is very long too… the small margins they mention doesn't seem like it would leave such a large scar, but due to the shape of it I guess it creates a pretty long scar.
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- February 7, 2016 at 6:56 pm
I was pretty confused about ulceration myself when I originally saw that word on my pathology report. From what I understand it means that the epidermis (outer most layer of skin) was broken over the Melanoma causing it to be able to spread to surrounding tissue.
When my surgeon asked me "did they get all of the Melanoma?" referring to the initial biopsy of my mole, I said I don't know. He looked at the pathology and said, "oh, no they didn't". My guess is he determined that by seeing ulceration on my path report. Obviously, I had a wide local excision done to get all of the tissue around the primary to make sure all surrounding tissue was clean.
So, I am assuming since you are still at stage 2, they did not find anything in your lymph nodes?
I can understand feeling as though the doctors are being very lax about everything. You shouldn't be getting a lot of scans just because of unncessesary exposure to radiation. That being said, if you've never had a scan, maybe getting one will ease your mind a little? One scan won't hurt… but they can be very expensive depending on your insurance.
All the best,
Jenn
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- February 7, 2016 at 7:48 pm
Hi Jae P. First, congrats on being 2 years NED! I'm stage 3C, BRAF+, with ulceration. Ulceration is already incorporated in your staging. To define ulceration, it is a more aggressive form of cancer cell growth, and not necessarily just the outter cells. According to oncolink.org, ulceration can sometimes happen in the center of the melanoma lesion, leading to cell death in the center of the lesion. As cells in the center die, the cancer doesn't have to feed them anymore, and can grow faster.
Now, please don't let this scare you. Ulceration, in some ways, has become a target for therapy (similar to BRAF+). I know that Interferon is a very touchy topic on this board, but if you do progress to stage 3, Interferon works almost exclusively on patients with ulcerated primaries.
I'm not sure what the protocol is for stage 2A. CT scans aren't great at seeing microscopic growth, so these scans would be a lot of radiation for very little help. The more radiation you receive, the more you're overwhelming your healthy immune system, ultimately feeding any cancer cells you may have.
It's a balance, though – if you're seriously stressing about having a CT scan, then I'd say have a CT scan. But only if it will truly set your mind at ease. I would focus more on why now, all of a sudden, are you so concerned? Is there perhaps something else that's going on to cause you concern? Maybe another family member is ill, or something else in your life? Two years is a great milestone, and cause for celebration rather than worry.
All the best,
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- February 7, 2016 at 7:48 pm
Hi Jae P. First, congrats on being 2 years NED! I'm stage 3C, BRAF+, with ulceration. Ulceration is already incorporated in your staging. To define ulceration, it is a more aggressive form of cancer cell growth, and not necessarily just the outter cells. According to oncolink.org, ulceration can sometimes happen in the center of the melanoma lesion, leading to cell death in the center of the lesion. As cells in the center die, the cancer doesn't have to feed them anymore, and can grow faster.
Now, please don't let this scare you. Ulceration, in some ways, has become a target for therapy (similar to BRAF+). I know that Interferon is a very touchy topic on this board, but if you do progress to stage 3, Interferon works almost exclusively on patients with ulcerated primaries.
I'm not sure what the protocol is for stage 2A. CT scans aren't great at seeing microscopic growth, so these scans would be a lot of radiation for very little help. The more radiation you receive, the more you're overwhelming your healthy immune system, ultimately feeding any cancer cells you may have.
It's a balance, though – if you're seriously stressing about having a CT scan, then I'd say have a CT scan. But only if it will truly set your mind at ease. I would focus more on why now, all of a sudden, are you so concerned? Is there perhaps something else that's going on to cause you concern? Maybe another family member is ill, or something else in your life? Two years is a great milestone, and cause for celebration rather than worry.
All the best,
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- February 7, 2016 at 7:48 pm
Hi Jae P. First, congrats on being 2 years NED! I'm stage 3C, BRAF+, with ulceration. Ulceration is already incorporated in your staging. To define ulceration, it is a more aggressive form of cancer cell growth, and not necessarily just the outter cells. According to oncolink.org, ulceration can sometimes happen in the center of the melanoma lesion, leading to cell death in the center of the lesion. As cells in the center die, the cancer doesn't have to feed them anymore, and can grow faster.
Now, please don't let this scare you. Ulceration, in some ways, has become a target for therapy (similar to BRAF+). I know that Interferon is a very touchy topic on this board, but if you do progress to stage 3, Interferon works almost exclusively on patients with ulcerated primaries.
I'm not sure what the protocol is for stage 2A. CT scans aren't great at seeing microscopic growth, so these scans would be a lot of radiation for very little help. The more radiation you receive, the more you're overwhelming your healthy immune system, ultimately feeding any cancer cells you may have.
It's a balance, though – if you're seriously stressing about having a CT scan, then I'd say have a CT scan. But only if it will truly set your mind at ease. I would focus more on why now, all of a sudden, are you so concerned? Is there perhaps something else that's going on to cause you concern? Maybe another family member is ill, or something else in your life? Two years is a great milestone, and cause for celebration rather than worry.
All the best,
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- February 7, 2016 at 8:29 pm
From what I understand, ulceration is similar to having a mutation. Any spread of the cancer is just like the primary lesion. So, for example, if you're BRAF+, then any spread would also be BRAF+. Same with ulceration. It's a blueprint of how your specific melanoma grows. And again, this may be helpful in targeting therapy for later stages.
My primary was 2.1mm thick. So they don't have to be super thick to be ulcerated.
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- February 7, 2016 at 8:29 pm
From what I understand, ulceration is similar to having a mutation. Any spread of the cancer is just like the primary lesion. So, for example, if you're BRAF+, then any spread would also be BRAF+. Same with ulceration. It's a blueprint of how your specific melanoma grows. And again, this may be helpful in targeting therapy for later stages.
My primary was 2.1mm thick. So they don't have to be super thick to be ulcerated.
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- February 7, 2016 at 8:29 pm
From what I understand, ulceration is similar to having a mutation. Any spread of the cancer is just like the primary lesion. So, for example, if you're BRAF+, then any spread would also be BRAF+. Same with ulceration. It's a blueprint of how your specific melanoma grows. And again, this may be helpful in targeting therapy for later stages.
My primary was 2.1mm thick. So they don't have to be super thick to be ulcerated.
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- February 8, 2016 at 2:16 am
I second the idea of periodic x-rays. My understanding is that melanoma tends to metastasize to certain locations depending on where the primary is. For example, I have had vulvar melanoma and was told melanoma in the vulvar region tends to spread to the lungs first, so my onc orders lung xrays every 6 months or so. Oddly, of the 2 out of 3 other women I know with the same type of cancer (vulvar), 2 of them first spread to the hip bone/femur. The third is stage 3 and after several years has not spread at all (hooray, Mary!). With my other 2 friends, only later did it reach the lungs and pancreas. Not a lot is known about mucosal melanoma so where it spreads first may be harder to predict, but depending on where your melanoma is most likely to spread, you might request xrays at regular intervals. As stated above, the radiation is minimal compared to some of the major scans, and it might be reassuring to have them done.
Congratulations on reaching the 2-year milestone! Wishing you all the best
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- February 8, 2016 at 2:16 am
I second the idea of periodic x-rays. My understanding is that melanoma tends to metastasize to certain locations depending on where the primary is. For example, I have had vulvar melanoma and was told melanoma in the vulvar region tends to spread to the lungs first, so my onc orders lung xrays every 6 months or so. Oddly, of the 2 out of 3 other women I know with the same type of cancer (vulvar), 2 of them first spread to the hip bone/femur. The third is stage 3 and after several years has not spread at all (hooray, Mary!). With my other 2 friends, only later did it reach the lungs and pancreas. Not a lot is known about mucosal melanoma so where it spreads first may be harder to predict, but depending on where your melanoma is most likely to spread, you might request xrays at regular intervals. As stated above, the radiation is minimal compared to some of the major scans, and it might be reassuring to have them done.
Congratulations on reaching the 2-year milestone! Wishing you all the best
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- February 8, 2016 at 2:16 am
I second the idea of periodic x-rays. My understanding is that melanoma tends to metastasize to certain locations depending on where the primary is. For example, I have had vulvar melanoma and was told melanoma in the vulvar region tends to spread to the lungs first, so my onc orders lung xrays every 6 months or so. Oddly, of the 2 out of 3 other women I know with the same type of cancer (vulvar), 2 of them first spread to the hip bone/femur. The third is stage 3 and after several years has not spread at all (hooray, Mary!). With my other 2 friends, only later did it reach the lungs and pancreas. Not a lot is known about mucosal melanoma so where it spreads first may be harder to predict, but depending on where your melanoma is most likely to spread, you might request xrays at regular intervals. As stated above, the radiation is minimal compared to some of the major scans, and it might be reassuring to have them done.
Congratulations on reaching the 2-year milestone! Wishing you all the best
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