› Forums › General Melanoma Community › PET/CT scan false positive question
- This topic has 30 replies, 7 voices, and was last updated 9 years, 8 months ago by
keepthefaith11.
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- May 28, 2016 at 12:13 pm
I had a huge melonoma removed from my back over 10mm(looked like a med size mole for 15 pus years or more, but suddendly flared up in 3 months to a tumor/ nodular cancer)…SURGEON removed it along with doing a sentinal node biopsy, after working over an hour under my left armpit they COULD NOT find the sentinal node….
They noticed on a previous x-ray a med size area on my lung and 3 nodules(which was probably from a cold i was just getting over but had for like 4 weeks or more), so they ordered a PET/CT scan to be done fearing it had spread to other organs…Did the pet scan NOTHING lit up anywhere on my body except a small area under the left armpit where they had just done the sugery to find the sentinal node….They pet scan was done two weeks or less after the surgery to find the sentinal node….Now they want to do a axillary node dissection…After looking on the internet it looks like a false reading can happen in the area surgery was done is this true ? i would hate to have this surgery done only to find out the cancer had not spread there……
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- May 28, 2016 at 1:58 pm
So back in 2013, right after I had my WLE I had a pet to get into my trial. My leg where I had it done lit up but they said it was cellulitis instead of cancer. I am currently dealing with a hot node in my chest which they think could be a granuloma. Pets can sure give false positives but since you had such a large mel I would definitely do the dissection. This is a very unpredictable, crazy disease and I would do everything I could to prevent future spread,imo. I did the clnd of my groin and although it caused lymphadema, I would do it again to save my life. If you had a much smaller one it would be questionable but I would do it. -
- May 28, 2016 at 1:58 pm
So back in 2013, right after I had my WLE I had a pet to get into my trial. My leg where I had it done lit up but they said it was cellulitis instead of cancer. I am currently dealing with a hot node in my chest which they think could be a granuloma. Pets can sure give false positives but since you had such a large mel I would definitely do the dissection. This is a very unpredictable, crazy disease and I would do everything I could to prevent future spread,imo. I did the clnd of my groin and although it caused lymphadema, I would do it again to save my life. If you had a much smaller one it would be questionable but I would do it.-
- May 28, 2016 at 2:01 pm
I also had lung nodules on a ct but they didn’t light up on pet. I live in Midwest and have what I think is histoplasmosis which is common here. I know you feel anxious, I do too! Try not to worry and do what you need to to take care of it. Im going in for my 2nd lung biopsy just to make sure. -
- May 28, 2016 at 2:01 pm
I also had lung nodules on a ct but they didn’t light up on pet. I live in Midwest and have what I think is histoplasmosis which is common here. I know you feel anxious, I do too! Try not to worry and do what you need to to take care of it. Im going in for my 2nd lung biopsy just to make sure. -
- May 28, 2016 at 2:01 pm
I also had lung nodules on a ct but they didn’t light up on pet. I live in Midwest and have what I think is histoplasmosis which is common here. I know you feel anxious, I do too! Try not to worry and do what you need to to take care of it. Im going in for my 2nd lung biopsy just to make sure. -
- May 28, 2016 at 2:38 pm
I am faced with the decision of CLND surgery of my right groin in 3 weeks. I had smaller melanoma on my leg 1.9 mm but in a SLNB a smalll amount of cancer was found in my sentinel node with only with immunohistochemical stains. So I guess my staging is IIIa
How bad is the lymphedema and what was your recovery time of the surgery? Do you still need to wear compression hose all the time? Did you have any infections or other complications with the surgery?
I am reading about the surgery and uncertainty of what effect it has on overall outcomes and I am on the fence. I also want to do everything I can to help future spread. Given your experience would you reccomend that I also have this surgery. I hope your treatments are going well. I'm quickly finding out how emotionally draining the lack of knowledge and predictability of melanoma is. Teri
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- May 28, 2016 at 2:38 pm
I am faced with the decision of CLND surgery of my right groin in 3 weeks. I had smaller melanoma on my leg 1.9 mm but in a SLNB a smalll amount of cancer was found in my sentinel node with only with immunohistochemical stains. So I guess my staging is IIIa
How bad is the lymphedema and what was your recovery time of the surgery? Do you still need to wear compression hose all the time? Did you have any infections or other complications with the surgery?
I am reading about the surgery and uncertainty of what effect it has on overall outcomes and I am on the fence. I also want to do everything I can to help future spread. Given your experience would you reccomend that I also have this surgery. I hope your treatments are going well. I'm quickly finding out how emotionally draining the lack of knowledge and predictability of melanoma is. Teri
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- May 28, 2016 at 6:49 pm
Hi Teri. I had a CLND on my left groin in December. Only on pain killers for a few days, two weeks on the couch, another 2 weeks to walk normally with the swelling and stitches. Some lymphedema, annoying sometimes but overall manageable. I have some very honest pictures of the scar and the compression stocking on my blog if you'd like to check them out. To me, it seems like a groin dissection is harder than one in the armpit…greater risk of infection and gravity is a b!tch. ANY surgery is still surgery, though, so don't take it lightly. But if you feel that you want to be as aggressive as possible, then a CLND may be warranted. There's also the option of ultrasounds to the area to watch, as well as Ipi now approved for stage III. More options than ever before! So do your research, and decide what's best for YOU.
All the best,
Lauren
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- May 28, 2016 at 6:49 pm
Hi Teri. I had a CLND on my left groin in December. Only on pain killers for a few days, two weeks on the couch, another 2 weeks to walk normally with the swelling and stitches. Some lymphedema, annoying sometimes but overall manageable. I have some very honest pictures of the scar and the compression stocking on my blog if you'd like to check them out. To me, it seems like a groin dissection is harder than one in the armpit…greater risk of infection and gravity is a b!tch. ANY surgery is still surgery, though, so don't take it lightly. But if you feel that you want to be as aggressive as possible, then a CLND may be warranted. There's also the option of ultrasounds to the area to watch, as well as Ipi now approved for stage III. More options than ever before! So do your research, and decide what's best for YOU.
All the best,
Lauren
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- May 28, 2016 at 7:40 pm
Hello Lauren. The pictures were helpful and gave me an idea of what I can expect. I also read your post on Fear which expresses so completely all the emotions I'm going through. I hope that I'll be able to reach a point where I can win the mental battle. This is so new to me and it's all I think about. Thanks so much for sharing your blog and good luck with your treatments, Teri
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- May 28, 2016 at 7:40 pm
Hello Lauren. The pictures were helpful and gave me an idea of what I can expect. I also read your post on Fear which expresses so completely all the emotions I'm going through. I hope that I'll be able to reach a point where I can win the mental battle. This is so new to me and it's all I think about. Thanks so much for sharing your blog and good luck with your treatments, Teri
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- May 28, 2016 at 7:40 pm
Hello Lauren. The pictures were helpful and gave me an idea of what I can expect. I also read your post on Fear which expresses so completely all the emotions I'm going through. I hope that I'll be able to reach a point where I can win the mental battle. This is so new to me and it's all I think about. Thanks so much for sharing your blog and good luck with your treatments, Teri
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- May 28, 2016 at 6:49 pm
Hi Teri. I had a CLND on my left groin in December. Only on pain killers for a few days, two weeks on the couch, another 2 weeks to walk normally with the swelling and stitches. Some lymphedema, annoying sometimes but overall manageable. I have some very honest pictures of the scar and the compression stocking on my blog if you'd like to check them out. To me, it seems like a groin dissection is harder than one in the armpit…greater risk of infection and gravity is a b!tch. ANY surgery is still surgery, though, so don't take it lightly. But if you feel that you want to be as aggressive as possible, then a CLND may be warranted. There's also the option of ultrasounds to the area to watch, as well as Ipi now approved for stage III. More options than ever before! So do your research, and decide what's best for YOU.
All the best,
Lauren
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- May 28, 2016 at 2:38 pm
I am faced with the decision of CLND surgery of my right groin in 3 weeks. I had smaller melanoma on my leg 1.9 mm but in a SLNB a smalll amount of cancer was found in my sentinel node with only with immunohistochemical stains. So I guess my staging is IIIa
How bad is the lymphedema and what was your recovery time of the surgery? Do you still need to wear compression hose all the time? Did you have any infections or other complications with the surgery?
I am reading about the surgery and uncertainty of what effect it has on overall outcomes and I am on the fence. I also want to do everything I can to help future spread. Given your experience would you reccomend that I also have this surgery. I hope your treatments are going well. I'm quickly finding out how emotionally draining the lack of knowledge and predictability of melanoma is. Teri
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- May 28, 2016 at 1:58 pm
So back in 2013, right after I had my WLE I had a pet to get into my trial. My leg where I had it done lit up but they said it was cellulitis instead of cancer. I am currently dealing with a hot node in my chest which they think could be a granuloma. Pets can sure give false positives but since you had such a large mel I would definitely do the dissection. This is a very unpredictable, crazy disease and I would do everything I could to prevent future spread,imo. I did the clnd of my groin and although it caused lymphadema, I would do it again to save my life. If you had a much smaller one it would be questionable but I would do it. -
- May 28, 2016 at 3:21 pm
I'm not pro or con regarding the CLND, but just remember that PET scans would not pick up microscopic disease. So if any of the lymph nodes had areas of disease smaller than 5mm, they most likely wouldn't be caught up on a PET scan. The surgery for the SNB could cause the area to light up and no disease, but very small disease wouldn't show up anyway. Just trying to confuse matters more. Sorry!
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- May 28, 2016 at 3:21 pm
I'm not pro or con regarding the CLND, but just remember that PET scans would not pick up microscopic disease. So if any of the lymph nodes had areas of disease smaller than 5mm, they most likely wouldn't be caught up on a PET scan. The surgery for the SNB could cause the area to light up and no disease, but very small disease wouldn't show up anyway. Just trying to confuse matters more. Sorry!
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- May 28, 2016 at 3:21 pm
I'm not pro or con regarding the CLND, but just remember that PET scans would not pick up microscopic disease. So if any of the lymph nodes had areas of disease smaller than 5mm, they most likely wouldn't be caught up on a PET scan. The surgery for the SNB could cause the area to light up and no disease, but very small disease wouldn't show up anyway. Just trying to confuse matters more. Sorry!
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- May 28, 2016 at 6:58 pm
I second Janner, anything microscopic wouldn't be seen in a PET/CT. The area of surgery can easily show activity due to the healing process. So if you had the surgery, it would have to have a CLND instead of a sentinal node biopsy, which is a much bigger procedure. If you aren't sure you want the surgery, there is always the option of using ultrasound to watch the lymph nodes in that area. There's a Germal study out that used ultrasound for monitoring compared to CLND…it is mentioned here in other posts and easy to google.
Keep us updated and wishing you all the best,
Lauren
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- May 28, 2016 at 6:58 pm
I second Janner, anything microscopic wouldn't be seen in a PET/CT. The area of surgery can easily show activity due to the healing process. So if you had the surgery, it would have to have a CLND instead of a sentinal node biopsy, which is a much bigger procedure. If you aren't sure you want the surgery, there is always the option of using ultrasound to watch the lymph nodes in that area. There's a Germal study out that used ultrasound for monitoring compared to CLND…it is mentioned here in other posts and easy to google.
Keep us updated and wishing you all the best,
Lauren
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- May 28, 2016 at 6:58 pm
I second Janner, anything microscopic wouldn't be seen in a PET/CT. The area of surgery can easily show activity due to the healing process. So if you had the surgery, it would have to have a CLND instead of a sentinal node biopsy, which is a much bigger procedure. If you aren't sure you want the surgery, there is always the option of using ultrasound to watch the lymph nodes in that area. There's a Germal study out that used ultrasound for monitoring compared to CLND…it is mentioned here in other posts and easy to google.
Keep us updated and wishing you all the best,
Lauren
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- May 28, 2016 at 7:29 pm
Should you choose not to get surgery (i personally would – your mel was quite large), then i would definitely do ipi and let the medication take care of potential mel in the nodes…
but, since surgery (if possible) has always been the best option for mel, i would do that and be at peace after… My father took out all nodes in his armpit, and the drain was a hassle, other than that no issues with it…
all best to you!
patrisa
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- May 28, 2016 at 7:29 pm
Should you choose not to get surgery (i personally would – your mel was quite large), then i would definitely do ipi and let the medication take care of potential mel in the nodes…
but, since surgery (if possible) has always been the best option for mel, i would do that and be at peace after… My father took out all nodes in his armpit, and the drain was a hassle, other than that no issues with it…
all best to you!
patrisa
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- May 28, 2016 at 7:29 pm
Should you choose not to get surgery (i personally would – your mel was quite large), then i would definitely do ipi and let the medication take care of potential mel in the nodes…
but, since surgery (if possible) has always been the best option for mel, i would do that and be at peace after… My father took out all nodes in his armpit, and the drain was a hassle, other than that no issues with it…
all best to you!
patrisa
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- May 28, 2016 at 8:08 pm
Thanks for all the information….
The size of thet incision to remove the sentinel node was over 3", thats one of the reasons i was concerned about a false PET/CT and the short time between the surgery and the PET/CT SCAN….
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- May 28, 2016 at 8:08 pm
Thanks for all the information….
The size of thet incision to remove the sentinel node was over 3", thats one of the reasons i was concerned about a false PET/CT and the short time between the surgery and the PET/CT SCAN….
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- May 28, 2016 at 8:08 pm
Thanks for all the information….
The size of thet incision to remove the sentinel node was over 3", thats one of the reasons i was concerned about a false PET/CT and the short time between the surgery and the PET/CT SCAN….
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- May 28, 2016 at 10:49 pm
Both my parents had CLND in the armpit. Mom because of breastcancer and dad because of melanoma. Neither were bothered by the drain and had absolutely NO issues with lymphoma or anything else. They were very disciplined about doing their exercises. If I were you I wouldn’t take any chances. -
- May 28, 2016 at 10:49 pm
Both my parents had CLND in the armpit. Mom because of breastcancer and dad because of melanoma. Neither were bothered by the drain and had absolutely NO issues with lymphoma or anything else. They were very disciplined about doing their exercises. If I were you I wouldn’t take any chances. -
- May 28, 2016 at 10:49 pm
Both my parents had CLND in the armpit. Mom because of breastcancer and dad because of melanoma. Neither were bothered by the drain and had absolutely NO issues with lymphoma or anything else. They were very disciplined about doing their exercises. If I were you I wouldn’t take any chances.
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Tagged: cutaneous melanoma
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