› Forums › General Melanoma Community › SNB for thin melanomas
- This topic has 27 replies, 6 voices, and was last updated 8 years, 6 months ago by
cancersnewnormal.
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- November 19, 2016 at 12:32 am
I know my prognosis as a recently dx PT1A, .48mm, Clarks level III, no ulceration, no regression is favorable relative to many on here, so thank you in advance for entertaining my questions. I lost a step-father to a quick stage 4 10 years ago and have a keen understanding of how dreadful this disease can be for some.
I had my WLE a couple days ago but was not able to get a SNB due to my specific staging. The math indicates that my case has about a 3% chance of spreading to regional lymph nodes, and those odds apparently don't justify the expense of the SNB. However, I'm sure the unlucky 3% out there wish they had pushed harder and perhaps removed lymph nodes in an effort to stop the spread. I understand the concept of diminishing return…I.e., the SNB is likely a waste of time and money for the vast majority of thin melanomas. However, due to the deadly nature of this cancer, why should i accept anything less than 100% effort? I fail to see how getting the SNB could be a bad thing in my case.
My plan is to push for the SNB after our Thanksgiving holiday, with perhaps some blood work or other testing.
Cheers, and best wishes to all on here.
Jay
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- November 19, 2016 at 1:07 am
We always want to do everything we feel neccessary to make sure we are thorough with our diagnosis. Unfortunately, it is unlikely your insurance will approve a SLNB, so that could be the roadblock you run into, even if you do find a surgeon wiling to perform the surgery.
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- November 19, 2016 at 1:07 am
We always want to do everything we feel neccessary to make sure we are thorough with our diagnosis. Unfortunately, it is unlikely your insurance will approve a SLNB, so that could be the roadblock you run into, even if you do find a surgeon wiling to perform the surgery.
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- November 19, 2016 at 1:07 am
We always want to do everything we feel neccessary to make sure we are thorough with our diagnosis. Unfortunately, it is unlikely your insurance will approve a SLNB, so that could be the roadblock you run into, even if you do find a surgeon wiling to perform the surgery.
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- November 19, 2016 at 1:39 am
The SNB has even less benefit after the WLE. It has to be done PRIOR to the WLE to have any real value – especially in a case like yours. The WLE removes lots of tissue. It can change the drainage paths to the lymph nodes. Therefore, the sentinel node before the WLE may be different than the one after the WLE. The protocol is that it must be done prior to the WLE and that is how it is done in almost every case. Doing it afterwards leaves questions in the results. If you have a positive result, that's a no brainer. But if you have a negative results, you don't know if it is negative because there is no spread or because they sampled the wrong node. Some docs will say "we can get the right node" but I'm not sure how they can guarantee that when the standard of care states otherwise.
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- November 19, 2016 at 1:39 am
The SNB has even less benefit after the WLE. It has to be done PRIOR to the WLE to have any real value – especially in a case like yours. The WLE removes lots of tissue. It can change the drainage paths to the lymph nodes. Therefore, the sentinel node before the WLE may be different than the one after the WLE. The protocol is that it must be done prior to the WLE and that is how it is done in almost every case. Doing it afterwards leaves questions in the results. If you have a positive result, that's a no brainer. But if you have a negative results, you don't know if it is negative because there is no spread or because they sampled the wrong node. Some docs will say "we can get the right node" but I'm not sure how they can guarantee that when the standard of care states otherwise.
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- November 19, 2016 at 2:26 am
Thanks Janner. However, the studies I've read don't indicate much of a problem doing the SNB post WLE.
Sentinel lymph-node biopsy after previous wide local excision for melanoma.
Abstract
OBJECTIVE:
To document experience with sentinel lymph-node biopsy in patients who have already undergone a wide local excision for melanoma because in many centres previous wide excision has been a contraindication for sentinel lymph-node biopsy. DESIGN:
A prospective cohort study. SETTING:
A tertiary care academic cancer centre. PATIENTS:
One hundred patients who presented with cutaneous melanoma (depth >1 mm or Clark level IV) after having undergone wide local excision of the primary lesion that was not situated in the head or neck. The follow-up was 3 years. INTERVENTIONS:
Sentinel lymph-node biopsy. Patients with truncal melanoma had preoperative lymphoscintigraphy to document the nodal basins at risk. Technetium-99m sulfur colloid (0.5-1 mCi in 0.5 mL) was injected intradermally around the scar, and the sentinel lymph node was excised with the aid of a hand-held gamma detector. OUTCOME MEASURES:
Accuracy of the biopsy and false-negative rates in this setting. RESULTS:
Of the 100 patients, 44 had truncal and 56 had extremity lesions. The average tumour depth was 3.47 mm and 3.07 mm respectively. Thirty-one patients had a sentinel lymph node positive for melanoma metastasis. Biopsies were positive for melanoma in 18 (41%) truncal lesions and 13 (23%) extremity lesions. There were 3 (9%) false-negative sentinel lymph-node biopsies as diagnosed by clinically evident nodal disease subsequently appearing in the nodal basin subjected to biopsy. Two occurred in patients after large rotation flap closures of truncal lesions. The third patient had a subungual melanoma of the great toe. No disease was found in the 2 nodes dissected. Two of the 3 false-negative biopsy results were obtained before serial sections and immunohistochemical staining were used to examine the sentinel lymph nodes. CONCLUSIONS:
Sentinel lymph-node biopsies can successfully identify clinically occult nodal metastases in patients who have had previous wide local excision of a melanoma, but the false-negative rate in patients with rotation flap closures should be taken into consideration. -
- November 19, 2016 at 2:26 am
Thanks Janner. However, the studies I've read don't indicate much of a problem doing the SNB post WLE.
Sentinel lymph-node biopsy after previous wide local excision for melanoma.
Abstract
OBJECTIVE:
To document experience with sentinel lymph-node biopsy in patients who have already undergone a wide local excision for melanoma because in many centres previous wide excision has been a contraindication for sentinel lymph-node biopsy. DESIGN:
A prospective cohort study. SETTING:
A tertiary care academic cancer centre. PATIENTS:
One hundred patients who presented with cutaneous melanoma (depth >1 mm or Clark level IV) after having undergone wide local excision of the primary lesion that was not situated in the head or neck. The follow-up was 3 years. INTERVENTIONS:
Sentinel lymph-node biopsy. Patients with truncal melanoma had preoperative lymphoscintigraphy to document the nodal basins at risk. Technetium-99m sulfur colloid (0.5-1 mCi in 0.5 mL) was injected intradermally around the scar, and the sentinel lymph node was excised with the aid of a hand-held gamma detector. OUTCOME MEASURES:
Accuracy of the biopsy and false-negative rates in this setting. RESULTS:
Of the 100 patients, 44 had truncal and 56 had extremity lesions. The average tumour depth was 3.47 mm and 3.07 mm respectively. Thirty-one patients had a sentinel lymph node positive for melanoma metastasis. Biopsies were positive for melanoma in 18 (41%) truncal lesions and 13 (23%) extremity lesions. There were 3 (9%) false-negative sentinel lymph-node biopsies as diagnosed by clinically evident nodal disease subsequently appearing in the nodal basin subjected to biopsy. Two occurred in patients after large rotation flap closures of truncal lesions. The third patient had a subungual melanoma of the great toe. No disease was found in the 2 nodes dissected. Two of the 3 false-negative biopsy results were obtained before serial sections and immunohistochemical staining were used to examine the sentinel lymph nodes. CONCLUSIONS:
Sentinel lymph-node biopsies can successfully identify clinically occult nodal metastases in patients who have had previous wide local excision of a melanoma, but the false-negative rate in patients with rotation flap closures should be taken into consideration. -
- November 19, 2016 at 2:26 am
Thanks Janner. However, the studies I've read don't indicate much of a problem doing the SNB post WLE.
Sentinel lymph-node biopsy after previous wide local excision for melanoma.
Abstract
OBJECTIVE:
To document experience with sentinel lymph-node biopsy in patients who have already undergone a wide local excision for melanoma because in many centres previous wide excision has been a contraindication for sentinel lymph-node biopsy. DESIGN:
A prospective cohort study. SETTING:
A tertiary care academic cancer centre. PATIENTS:
One hundred patients who presented with cutaneous melanoma (depth >1 mm or Clark level IV) after having undergone wide local excision of the primary lesion that was not situated in the head or neck. The follow-up was 3 years. INTERVENTIONS:
Sentinel lymph-node biopsy. Patients with truncal melanoma had preoperative lymphoscintigraphy to document the nodal basins at risk. Technetium-99m sulfur colloid (0.5-1 mCi in 0.5 mL) was injected intradermally around the scar, and the sentinel lymph node was excised with the aid of a hand-held gamma detector. OUTCOME MEASURES:
Accuracy of the biopsy and false-negative rates in this setting. RESULTS:
Of the 100 patients, 44 had truncal and 56 had extremity lesions. The average tumour depth was 3.47 mm and 3.07 mm respectively. Thirty-one patients had a sentinel lymph node positive for melanoma metastasis. Biopsies were positive for melanoma in 18 (41%) truncal lesions and 13 (23%) extremity lesions. There were 3 (9%) false-negative sentinel lymph-node biopsies as diagnosed by clinically evident nodal disease subsequently appearing in the nodal basin subjected to biopsy. Two occurred in patients after large rotation flap closures of truncal lesions. The third patient had a subungual melanoma of the great toe. No disease was found in the 2 nodes dissected. Two of the 3 false-negative biopsy results were obtained before serial sections and immunohistochemical staining were used to examine the sentinel lymph nodes. CONCLUSIONS:
Sentinel lymph-node biopsies can successfully identify clinically occult nodal metastases in patients who have had previous wide local excision of a melanoma, but the false-negative rate in patients with rotation flap closures should be taken into consideration. -
- November 19, 2016 at 2:32 am
Do you have a link to the actual study? It would be nice to read full article! Thanks Ed
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- November 19, 2016 at 2:32 am
Do you have a link to the actual study? It would be nice to read full article! Thanks Ed
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- November 19, 2016 at 2:32 am
Do you have a link to the actual study? It would be nice to read full article! Thanks Ed
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- November 19, 2016 at 2:34 am
That study doesn't apply to you, you understand. With an average depth of 3- 3.5mm and yours is < 0.5, they are two different beasts. That's why I said "in your case" it doesn't make much sense. WIth lesions that deep, it is also more likely to have multiple nodes affected. And 100 people is a small study. Obviously, you can fight for it with your insurance company and with your doctor and with yourself. This one small study has not changed the standard of care for lesions like yours. You ought to pose a question here asking how many people had a negative SNB only to have it recur later in the lymph nodes.
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- November 19, 2016 at 2:34 am
That study doesn't apply to you, you understand. With an average depth of 3- 3.5mm and yours is < 0.5, they are two different beasts. That's why I said "in your case" it doesn't make much sense. WIth lesions that deep, it is also more likely to have multiple nodes affected. And 100 people is a small study. Obviously, you can fight for it with your insurance company and with your doctor and with yourself. This one small study has not changed the standard of care for lesions like yours. You ought to pose a question here asking how many people had a negative SNB only to have it recur later in the lymph nodes.
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- November 19, 2016 at 2:34 am
That study doesn't apply to you, you understand. With an average depth of 3- 3.5mm and yours is < 0.5, they are two different beasts. That's why I said "in your case" it doesn't make much sense. WIth lesions that deep, it is also more likely to have multiple nodes affected. And 100 people is a small study. Obviously, you can fight for it with your insurance company and with your doctor and with yourself. This one small study has not changed the standard of care for lesions like yours. You ought to pose a question here asking how many people had a negative SNB only to have it recur later in the lymph nodes.
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- November 19, 2016 at 4:27 am
Janner has given you excellent information and advice regarding having a Sentinel Node Biopsy after a wide excision, it would be in your best interest to take her advice.
In my case, after the dermatologist made a wide excison before referring me to the surgeon for the WLE & SNB, I am left wondering and worrying for seven years now if they sampled the right node. Will it come back? Has it been growing inside me for these seven years?
It's very oppressive to live with the doubt. If I had the chance I wouldn't subject myself to the uncertainty.
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- November 19, 2016 at 4:27 am
Janner has given you excellent information and advice regarding having a Sentinel Node Biopsy after a wide excision, it would be in your best interest to take her advice.
In my case, after the dermatologist made a wide excison before referring me to the surgeon for the WLE & SNB, I am left wondering and worrying for seven years now if they sampled the right node. Will it come back? Has it been growing inside me for these seven years?
It's very oppressive to live with the doubt. If I had the chance I wouldn't subject myself to the uncertainty.
-
- November 19, 2016 at 4:27 am
Janner has given you excellent information and advice regarding having a Sentinel Node Biopsy after a wide excision, it would be in your best interest to take her advice.
In my case, after the dermatologist made a wide excison before referring me to the surgeon for the WLE & SNB, I am left wondering and worrying for seven years now if they sampled the right node. Will it come back? Has it been growing inside me for these seven years?
It's very oppressive to live with the doubt. If I had the chance I wouldn't subject myself to the uncertainty.
-
- November 19, 2016 at 1:39 am
The SNB has even less benefit after the WLE. It has to be done PRIOR to the WLE to have any real value – especially in a case like yours. The WLE removes lots of tissue. It can change the drainage paths to the lymph nodes. Therefore, the sentinel node before the WLE may be different than the one after the WLE. The protocol is that it must be done prior to the WLE and that is how it is done in almost every case. Doing it afterwards leaves questions in the results. If you have a positive result, that's a no brainer. But if you have a negative results, you don't know if it is negative because there is no spread or because they sampled the wrong node. Some docs will say "we can get the right node" but I'm not sure how they can guarantee that when the standard of care states otherwise.
-
- November 19, 2016 at 4:57 pm
This is a tough call for me, but I'm going to chime in for what little it might be worth. I did not have a SNB either. My surgeon first removed what he was informed (via punch biopsy pathology report) was an odd mole, maybe a possible "pre-melanoma". Two weeks after his removal of the thin spot, the path came back positive for melanoma. Sooooo… once again, I went back in for surgery. This time, for a much larger and deeper incision, to be sure he had proper margins. At that point, I did ask if we would be doing the sentinal node as well. I was told that this was "nothing to worry about" and that with the depth shown on the report, a node biopsy was not needed. Six years later, I was in that unfortunate 3%. The melanoma had gone to my lungs and brain…… however… NOT via the lymph system. I don't say this to frighten anyone, but to use as more of an informative prevention tool. After my initial diagnosis (stage 1a), I had skin checks and physicals every 6 months with my primary care doc. He removed a few suspicious spots in his office, but nothing ever came back as melanoma. I was in the best shape of my life when I had a seizure and lesions were found in my lungs and brain. By that point, the largest tumor in my lungs was already the size of a golf ball. With hindsight being 20/20, I can recall a few times that I felt as though I was having allergy issues. It was getting more difficult to breath when riding my bike on hills. What I should have had was a chest x-ray. I've read other posts from people who this seems to have been "regular" preventative practice after a melanom positive skin lesion was removed. By the time my thoracic surgeon removed the lower right lobe of my lungs (16 months after stage IV diagnosis) , he also pulled 13 lymph nodes. NONE of them had any melanotic cells. This beast had traveled via my blood.
With the diagnosis so fresh in your mind, you are in a very scary place right now. You could battle your insurance company for that node biopsy, but as mentioned… you still may not get an accurate answer. The best advice I have is to see a DERMATOLOGIST… not a general family practitioner for skin checks 2-3 times per year. Any change in moles or new spots need to be brought to docs attention. Any lingering "allergies", or "odd pains" in your body need to be brought to the docs attention.Your odds of advancing to further stages are very very low. You've done a good job catching this one early, and are clearly very good at gathering info and advocating for yourself. That puts you ahead of the game for preventative measures. : ) I hope that you never have to see a more advanced stage… but… even if your worst nightmare were to happen, and you find yourself hit with stage IV… Please know, that it is not the rapid "death sentence" that people were often faced with 10 years ago. The advances in melanoma treatment just over the last 2 years has been incredible, and there are even more options on the near horizon. Best wishes to you! Stay strong.
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- November 19, 2016 at 4:57 pm
This is a tough call for me, but I'm going to chime in for what little it might be worth. I did not have a SNB either. My surgeon first removed what he was informed (via punch biopsy pathology report) was an odd mole, maybe a possible "pre-melanoma". Two weeks after his removal of the thin spot, the path came back positive for melanoma. Sooooo… once again, I went back in for surgery. This time, for a much larger and deeper incision, to be sure he had proper margins. At that point, I did ask if we would be doing the sentinal node as well. I was told that this was "nothing to worry about" and that with the depth shown on the report, a node biopsy was not needed. Six years later, I was in that unfortunate 3%. The melanoma had gone to my lungs and brain…… however… NOT via the lymph system. I don't say this to frighten anyone, but to use as more of an informative prevention tool. After my initial diagnosis (stage 1a), I had skin checks and physicals every 6 months with my primary care doc. He removed a few suspicious spots in his office, but nothing ever came back as melanoma. I was in the best shape of my life when I had a seizure and lesions were found in my lungs and brain. By that point, the largest tumor in my lungs was already the size of a golf ball. With hindsight being 20/20, I can recall a few times that I felt as though I was having allergy issues. It was getting more difficult to breath when riding my bike on hills. What I should have had was a chest x-ray. I've read other posts from people who this seems to have been "regular" preventative practice after a melanom positive skin lesion was removed. By the time my thoracic surgeon removed the lower right lobe of my lungs (16 months after stage IV diagnosis) , he also pulled 13 lymph nodes. NONE of them had any melanotic cells. This beast had traveled via my blood.
With the diagnosis so fresh in your mind, you are in a very scary place right now. You could battle your insurance company for that node biopsy, but as mentioned… you still may not get an accurate answer. The best advice I have is to see a DERMATOLOGIST… not a general family practitioner for skin checks 2-3 times per year. Any change in moles or new spots need to be brought to docs attention. Any lingering "allergies", or "odd pains" in your body need to be brought to the docs attention.Your odds of advancing to further stages are very very low. You've done a good job catching this one early, and are clearly very good at gathering info and advocating for yourself. That puts you ahead of the game for preventative measures. : ) I hope that you never have to see a more advanced stage… but… even if your worst nightmare were to happen, and you find yourself hit with stage IV… Please know, that it is not the rapid "death sentence" that people were often faced with 10 years ago. The advances in melanoma treatment just over the last 2 years has been incredible, and there are even more options on the near horizon. Best wishes to you! Stay strong.
-
- November 19, 2016 at 4:57 pm
This is a tough call for me, but I'm going to chime in for what little it might be worth. I did not have a SNB either. My surgeon first removed what he was informed (via punch biopsy pathology report) was an odd mole, maybe a possible "pre-melanoma". Two weeks after his removal of the thin spot, the path came back positive for melanoma. Sooooo… once again, I went back in for surgery. This time, for a much larger and deeper incision, to be sure he had proper margins. At that point, I did ask if we would be doing the sentinal node as well. I was told that this was "nothing to worry about" and that with the depth shown on the report, a node biopsy was not needed. Six years later, I was in that unfortunate 3%. The melanoma had gone to my lungs and brain…… however… NOT via the lymph system. I don't say this to frighten anyone, but to use as more of an informative prevention tool. After my initial diagnosis (stage 1a), I had skin checks and physicals every 6 months with my primary care doc. He removed a few suspicious spots in his office, but nothing ever came back as melanoma. I was in the best shape of my life when I had a seizure and lesions were found in my lungs and brain. By that point, the largest tumor in my lungs was already the size of a golf ball. With hindsight being 20/20, I can recall a few times that I felt as though I was having allergy issues. It was getting more difficult to breath when riding my bike on hills. What I should have had was a chest x-ray. I've read other posts from people who this seems to have been "regular" preventative practice after a melanom positive skin lesion was removed. By the time my thoracic surgeon removed the lower right lobe of my lungs (16 months after stage IV diagnosis) , he also pulled 13 lymph nodes. NONE of them had any melanotic cells. This beast had traveled via my blood.
With the diagnosis so fresh in your mind, you are in a very scary place right now. You could battle your insurance company for that node biopsy, but as mentioned… you still may not get an accurate answer. The best advice I have is to see a DERMATOLOGIST… not a general family practitioner for skin checks 2-3 times per year. Any change in moles or new spots need to be brought to docs attention. Any lingering "allergies", or "odd pains" in your body need to be brought to the docs attention.Your odds of advancing to further stages are very very low. You've done a good job catching this one early, and are clearly very good at gathering info and advocating for yourself. That puts you ahead of the game for preventative measures. : ) I hope that you never have to see a more advanced stage… but… even if your worst nightmare were to happen, and you find yourself hit with stage IV… Please know, that it is not the rapid "death sentence" that people were often faced with 10 years ago. The advances in melanoma treatment just over the last 2 years has been incredible, and there are even more options on the near horizon. Best wishes to you! Stay strong.
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- November 20, 2016 at 2:44 pm
Niki, thanks for your reply. I enjoyed reading your blog and am inspired by your fight. How have your recent scans been? You've hit on the issue I'm having trouble accepting…what can I do to stop future spread (if anything at all?). SNB doesn't sound useful in thin melanomas especially considering your case. Appears like you did nearly everything right yet still ended up with metastasis.
Jay
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- November 20, 2016 at 2:44 pm
Niki, thanks for your reply. I enjoyed reading your blog and am inspired by your fight. How have your recent scans been? You've hit on the issue I'm having trouble accepting…what can I do to stop future spread (if anything at all?). SNB doesn't sound useful in thin melanomas especially considering your case. Appears like you did nearly everything right yet still ended up with metastasis.
Jay
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- November 20, 2016 at 2:44 pm
Niki, thanks for your reply. I enjoyed reading your blog and am inspired by your fight. How have your recent scans been? You've hit on the issue I'm having trouble accepting…what can I do to stop future spread (if anything at all?). SNB doesn't sound useful in thin melanomas especially considering your case. Appears like you did nearly everything right yet still ended up with metastasis.
Jay
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- November 21, 2016 at 5:26 pm
Jay,
My recent scans are fantastic! I need to update my latest blog post. Just over a week ago, I had both brain MRI and CT of chest/ab/pelvis and although not exactly "No evidence of disease", I haven't had any new brain lesions for over a year now. The body has been clear for 2. We're still awaiting the already gamma radiated "dead critter" (my radiation oncologist's words… ha!) to disappear from the brain scans, so I suppose that I am technically "no evidence of new disease"… "in remission"… whatever the term, I'm in a really good place. : )
I'm not sure about having been able to stop the spread. If I could change anything about how things were handled by/for me, I would have demanded to see a dermatologist, rather than allow my family doctor to do the 6 month skin checks, once it was confirmed that I did indeed have melanoma. Unfortunately, I think many docs within the HMO insurance system would prefer to save money than to send folks out for specialist care. I also should have insisted on a chest x-ray when I was suspicious of having allergies or exercise induced asthma. I knew something wasn't right. I can't say for certain that any of those things would have helped, but it is all I can fall back on when pondering how I could have caught this earlier… before brain metastsis. I'm the kind of person who tends to go from "it's no big deal" to "call an ambulance" in under 10 seconds…. or my husband has to be the one to insist that we are going to the ER. I was dealt a good hand from the gene pool in that I have a high tolerance for pain. This is wonderful when fighting cancer and playing sports, but not so great when it makes one more accustomed to ignoring pain signals and changes in the body. I've had to learn that "Chin up, hang tough, and don't let them see you cry" is not always the best practice in medical scenarios.
YOU know YOU better than any doctor ever will. You have to let them know what doesn't seem right … and no matter how many times they may want to default to "That's not typically the case"…. be pushy when you get that hinky feeling that something else should be checked into. You can only do the best that you can do, and enjoy the life in between. Whether it's dealing with a stage 1 that may never come back to haunt you again, or it's stage IV and you're going step by step. I had 6 "worry free" years between stages 1 and 4. Since there is no guarantee that living more cautiously would have prevented the spread, I can't honestly say that I'd change much…. other than the derm vs family doc for skin checks. That's an easy swap of faces for twice annual appointments. The fear/concern that you're feeling now, will make you stronger as you learn to live with it over time. Hopefully you will never have to worry beyond what you're already working with. A cancer diagnosis will change a person, sometimes in a positive direction. Would I prefer to have never faced it? Sure. I'd be the same old me that I was before. I was happy with who I was. Would I go back in time and undo this "life glitch" if I had a magic wand? I don't think so. I'm stronger, more caring, more appreciative, more open minded, more motivated, more self aware, more self advocating… the list goes on and on. Yes, cancer sucks, but it can bring some good into your life as well. I know, that sounds warped… but it's totally true… or I've just had too much brain radiation to think clearly anymore. HA HA HA HA HA! ; )
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- November 21, 2016 at 5:26 pm
Jay,
My recent scans are fantastic! I need to update my latest blog post. Just over a week ago, I had both brain MRI and CT of chest/ab/pelvis and although not exactly "No evidence of disease", I haven't had any new brain lesions for over a year now. The body has been clear for 2. We're still awaiting the already gamma radiated "dead critter" (my radiation oncologist's words… ha!) to disappear from the brain scans, so I suppose that I am technically "no evidence of new disease"… "in remission"… whatever the term, I'm in a really good place. : )
I'm not sure about having been able to stop the spread. If I could change anything about how things were handled by/for me, I would have demanded to see a dermatologist, rather than allow my family doctor to do the 6 month skin checks, once it was confirmed that I did indeed have melanoma. Unfortunately, I think many docs within the HMO insurance system would prefer to save money than to send folks out for specialist care. I also should have insisted on a chest x-ray when I was suspicious of having allergies or exercise induced asthma. I knew something wasn't right. I can't say for certain that any of those things would have helped, but it is all I can fall back on when pondering how I could have caught this earlier… before brain metastsis. I'm the kind of person who tends to go from "it's no big deal" to "call an ambulance" in under 10 seconds…. or my husband has to be the one to insist that we are going to the ER. I was dealt a good hand from the gene pool in that I have a high tolerance for pain. This is wonderful when fighting cancer and playing sports, but not so great when it makes one more accustomed to ignoring pain signals and changes in the body. I've had to learn that "Chin up, hang tough, and don't let them see you cry" is not always the best practice in medical scenarios.
YOU know YOU better than any doctor ever will. You have to let them know what doesn't seem right … and no matter how many times they may want to default to "That's not typically the case"…. be pushy when you get that hinky feeling that something else should be checked into. You can only do the best that you can do, and enjoy the life in between. Whether it's dealing with a stage 1 that may never come back to haunt you again, or it's stage IV and you're going step by step. I had 6 "worry free" years between stages 1 and 4. Since there is no guarantee that living more cautiously would have prevented the spread, I can't honestly say that I'd change much…. other than the derm vs family doc for skin checks. That's an easy swap of faces for twice annual appointments. The fear/concern that you're feeling now, will make you stronger as you learn to live with it over time. Hopefully you will never have to worry beyond what you're already working with. A cancer diagnosis will change a person, sometimes in a positive direction. Would I prefer to have never faced it? Sure. I'd be the same old me that I was before. I was happy with who I was. Would I go back in time and undo this "life glitch" if I had a magic wand? I don't think so. I'm stronger, more caring, more appreciative, more open minded, more motivated, more self aware, more self advocating… the list goes on and on. Yes, cancer sucks, but it can bring some good into your life as well. I know, that sounds warped… but it's totally true… or I've just had too much brain radiation to think clearly anymore. HA HA HA HA HA! ; )
-
- November 21, 2016 at 5:26 pm
Jay,
My recent scans are fantastic! I need to update my latest blog post. Just over a week ago, I had both brain MRI and CT of chest/ab/pelvis and although not exactly "No evidence of disease", I haven't had any new brain lesions for over a year now. The body has been clear for 2. We're still awaiting the already gamma radiated "dead critter" (my radiation oncologist's words… ha!) to disappear from the brain scans, so I suppose that I am technically "no evidence of new disease"… "in remission"… whatever the term, I'm in a really good place. : )
I'm not sure about having been able to stop the spread. If I could change anything about how things were handled by/for me, I would have demanded to see a dermatologist, rather than allow my family doctor to do the 6 month skin checks, once it was confirmed that I did indeed have melanoma. Unfortunately, I think many docs within the HMO insurance system would prefer to save money than to send folks out for specialist care. I also should have insisted on a chest x-ray when I was suspicious of having allergies or exercise induced asthma. I knew something wasn't right. I can't say for certain that any of those things would have helped, but it is all I can fall back on when pondering how I could have caught this earlier… before brain metastsis. I'm the kind of person who tends to go from "it's no big deal" to "call an ambulance" in under 10 seconds…. or my husband has to be the one to insist that we are going to the ER. I was dealt a good hand from the gene pool in that I have a high tolerance for pain. This is wonderful when fighting cancer and playing sports, but not so great when it makes one more accustomed to ignoring pain signals and changes in the body. I've had to learn that "Chin up, hang tough, and don't let them see you cry" is not always the best practice in medical scenarios.
YOU know YOU better than any doctor ever will. You have to let them know what doesn't seem right … and no matter how many times they may want to default to "That's not typically the case"…. be pushy when you get that hinky feeling that something else should be checked into. You can only do the best that you can do, and enjoy the life in between. Whether it's dealing with a stage 1 that may never come back to haunt you again, or it's stage IV and you're going step by step. I had 6 "worry free" years between stages 1 and 4. Since there is no guarantee that living more cautiously would have prevented the spread, I can't honestly say that I'd change much…. other than the derm vs family doc for skin checks. That's an easy swap of faces for twice annual appointments. The fear/concern that you're feeling now, will make you stronger as you learn to live with it over time. Hopefully you will never have to worry beyond what you're already working with. A cancer diagnosis will change a person, sometimes in a positive direction. Would I prefer to have never faced it? Sure. I'd be the same old me that I was before. I was happy with who I was. Would I go back in time and undo this "life glitch" if I had a magic wand? I don't think so. I'm stronger, more caring, more appreciative, more open minded, more motivated, more self aware, more self advocating… the list goes on and on. Yes, cancer sucks, but it can bring some good into your life as well. I know, that sounds warped… but it's totally true… or I've just had too much brain radiation to think clearly anymore. HA HA HA HA HA! ; )
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