› Forums › General Melanoma Community › Still More Waiting
- This topic has 21 replies, 4 voices, and was last updated 12 years, 3 months ago by
Lilylove414.
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- January 10, 2012 at 4:13 pm
So UVA was alright, if the actual talk with the doctor wasn’t so disappointing. Of course he started me off with news I already know, my tumor is too small for a trial, and my scan showed a small lymph node under my right arm. Even though he thinks it’s nothing, he wants to be positive and have me in again for a CT scan later this month. Then, he wants to take the rest of my lymph nodes out under my left arm, which I was suspecting. Still don’t want any more surgery! After that we can start treatment.So UVA was alright, if the actual talk with the doctor wasn’t so disappointing. Of course he started me off with news I already know, my tumor is too small for a trial, and my scan showed a small lymph node under my right arm. Even though he thinks it’s nothing, he wants to be positive and have me in again for a CT scan later this month. Then, he wants to take the rest of my lymph nodes out under my left arm, which I was suspecting. Still don’t want any more surgery! After that we can start treatment. Considering I’ve been getting the every 3 week visit, it’ll probably take til spring to get me started on interferon. At first I was so frustrated, but now I’m just so tired of waiting. And apparently he had an emergency or something because after he told me to get dressed from the physical glance over, he never came back! He had some nurse come in and tell us that we should come back in 3 weeks for the scan. That’s what made me so mad. Anyway, right now I get to wait. I am not a patient lady.
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- January 10, 2012 at 4:32 pm
Have they done an FNA? (fine needle aspiration? – not 100% but better than waiting).
I know surgeries aren't good but with low tumor burden it can work! It has taken me 5 years of stage IV that way. If you do have a tumor interfuron isn't a choice!
Sounds like you need another opinion or to let them know your not happy.
Linda
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- January 10, 2012 at 4:32 pm
Have they done an FNA? (fine needle aspiration? – not 100% but better than waiting).
I know surgeries aren't good but with low tumor burden it can work! It has taken me 5 years of stage IV that way. If you do have a tumor interfuron isn't a choice!
Sounds like you need another opinion or to let them know your not happy.
Linda
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- January 10, 2012 at 4:32 pm
Have they done an FNA? (fine needle aspiration? – not 100% but better than waiting).
I know surgeries aren't good but with low tumor burden it can work! It has taken me 5 years of stage IV that way. If you do have a tumor interfuron isn't a choice!
Sounds like you need another opinion or to let them know your not happy.
Linda
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- January 10, 2012 at 4:46 pm
Waiting under the circumstances you are describing would be unacceptable to me. If you have a tumor or lymph node they are seeing on a cat scan, demand a biopsy! I wouldn’t just hang out another 3 weeks! Interferon is suppose to be started as close to initial diagnosis of stage 3 as possible, I believe within the first 8 weeks. Sometimes, testing does delay that start, but you shouldn’t be okay with pace of you doctor’s office. Unfortunately, you will quickly learn that on top of being a cancer patient you have to be your own medical advocate. So get the facts and make a plan! That doctor works for you! Good luck, Valerie (Phil’s wife)-
- January 11, 2012 at 2:44 pm
Thank you ladies for being so encouraging! I believe God will bring me through this, but it’s so draining! I’m not sure what a fine needle aspiration does exactly. Is it just like draining some lymph nodes? I am definitely seeing why I need to be my own advocate now! It’s so easy to assume the doctors are always on top of things.Um, maybe he feels it can wait because the “tumor” is so small. I just want this to move along! How long did y’all have to wait to start treatment? Even my friend Matt (who might as well be my boyfriend) is getting mad about it. He’s been awesome through all of this.
I’m so blessed to have people like y’all who know what to do in these situations. Always feel free to tell me more about your fights, too!
God bless,
Jaimy -
- January 11, 2012 at 2:44 pm
Thank you ladies for being so encouraging! I believe God will bring me through this, but it’s so draining! I’m not sure what a fine needle aspiration does exactly. Is it just like draining some lymph nodes? I am definitely seeing why I need to be my own advocate now! It’s so easy to assume the doctors are always on top of things.Um, maybe he feels it can wait because the “tumor” is so small. I just want this to move along! How long did y’all have to wait to start treatment? Even my friend Matt (who might as well be my boyfriend) is getting mad about it. He’s been awesome through all of this.
I’m so blessed to have people like y’all who know what to do in these situations. Always feel free to tell me more about your fights, too!
God bless,
Jaimy -
- January 11, 2012 at 4:41 pm
Jaimy,
If there is a tumor it will most likely be removed, there might then just be watch and wait afterwards. No sense to go into other options if you don't really know at this point.
Depending on the placement and deepness to do a fna is the following. The first try is with an ultrasound and either the surgeon (you are awake) they insert a fine needle and aspire some of the cells. They will take several attempts to get different areas of even though small tumor. I've had ones that could not be seen with an ultrasound and they did it while I was in a ct scan while they did it (behind the clavicle). One time the surgeon could see the lump and he did it without any machinary as guiding. That particular time was fatty tissue, the onc still did not trust it and had it removed anyway, ended up really being just fatty tissue.
I know that you believe that God will bring you through but medical science is also needed. If you have an oncologist that just seems to put you off and if there is a problem then you have less chance to make important decisions. It's time to deal with this when it's small.
Linda
dealing with mel since 79 (primary), 06 became stage IV, Oct 11 – brain met and dealing with edema
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- January 12, 2012 at 2:44 am
My faith in God has in no way discouraged me from pursuing the right medicine. I called my local oncologist and she referred me to a different cancer center to see if I can start treatment sooner. My appointment is Friday.As for the tumor, we’ll just have to see what they say.
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- January 14, 2012 at 1:39 am
I am glad you went back to Lewis Gale. I did not like the options that UVA had either. Just wasn't the place I felt like I needed to be. Let me know if I can help at all. If he thinks there is even a chance of there being a tumor, you need to find out. Why can't you have your scans at LG and have the results faxed to UVA?
Don't let a careless doctor stop you from getting the best possible care.
Thinking of you!
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- January 14, 2012 at 1:56 am
Actually that’s what I did originally. But now I’m with Dr. Awesome. 🙂 -
- January 14, 2012 at 1:56 am
Actually that’s what I did originally. But now I’m with Dr. Awesome. 🙂 -
- January 14, 2012 at 1:56 am
Actually that’s what I did originally. But now I’m with Dr. Awesome. 🙂 -
- January 14, 2012 at 1:39 am
I am glad you went back to Lewis Gale. I did not like the options that UVA had either. Just wasn't the place I felt like I needed to be. Let me know if I can help at all. If he thinks there is even a chance of there being a tumor, you need to find out. Why can't you have your scans at LG and have the results faxed to UVA?
Don't let a careless doctor stop you from getting the best possible care.
Thinking of you!
-
- January 14, 2012 at 1:39 am
I am glad you went back to Lewis Gale. I did not like the options that UVA had either. Just wasn't the place I felt like I needed to be. Let me know if I can help at all. If he thinks there is even a chance of there being a tumor, you need to find out. Why can't you have your scans at LG and have the results faxed to UVA?
Don't let a careless doctor stop you from getting the best possible care.
Thinking of you!
-
- January 12, 2012 at 2:44 am
My faith in God has in no way discouraged me from pursuing the right medicine. I called my local oncologist and she referred me to a different cancer center to see if I can start treatment sooner. My appointment is Friday.As for the tumor, we’ll just have to see what they say.
-
- January 12, 2012 at 2:44 am
My faith in God has in no way discouraged me from pursuing the right medicine. I called my local oncologist and she referred me to a different cancer center to see if I can start treatment sooner. My appointment is Friday.As for the tumor, we’ll just have to see what they say.
-
- January 11, 2012 at 4:41 pm
Jaimy,
If there is a tumor it will most likely be removed, there might then just be watch and wait afterwards. No sense to go into other options if you don't really know at this point.
Depending on the placement and deepness to do a fna is the following. The first try is with an ultrasound and either the surgeon (you are awake) they insert a fine needle and aspire some of the cells. They will take several attempts to get different areas of even though small tumor. I've had ones that could not be seen with an ultrasound and they did it while I was in a ct scan while they did it (behind the clavicle). One time the surgeon could see the lump and he did it without any machinary as guiding. That particular time was fatty tissue, the onc still did not trust it and had it removed anyway, ended up really being just fatty tissue.
I know that you believe that God will bring you through but medical science is also needed. If you have an oncologist that just seems to put you off and if there is a problem then you have less chance to make important decisions. It's time to deal with this when it's small.
Linda
dealing with mel since 79 (primary), 06 became stage IV, Oct 11 – brain met and dealing with edema
-
- January 11, 2012 at 4:41 pm
Jaimy,
If there is a tumor it will most likely be removed, there might then just be watch and wait afterwards. No sense to go into other options if you don't really know at this point.
Depending on the placement and deepness to do a fna is the following. The first try is with an ultrasound and either the surgeon (you are awake) they insert a fine needle and aspire some of the cells. They will take several attempts to get different areas of even though small tumor. I've had ones that could not be seen with an ultrasound and they did it while I was in a ct scan while they did it (behind the clavicle). One time the surgeon could see the lump and he did it without any machinary as guiding. That particular time was fatty tissue, the onc still did not trust it and had it removed anyway, ended up really being just fatty tissue.
I know that you believe that God will bring you through but medical science is also needed. If you have an oncologist that just seems to put you off and if there is a problem then you have less chance to make important decisions. It's time to deal with this when it's small.
Linda
dealing with mel since 79 (primary), 06 became stage IV, Oct 11 – brain met and dealing with edema
-
- January 11, 2012 at 2:44 pm
Thank you ladies for being so encouraging! I believe God will bring me through this, but it’s so draining! I’m not sure what a fine needle aspiration does exactly. Is it just like draining some lymph nodes? I am definitely seeing why I need to be my own advocate now! It’s so easy to assume the doctors are always on top of things.Um, maybe he feels it can wait because the “tumor” is so small. I just want this to move along! How long did y’all have to wait to start treatment? Even my friend Matt (who might as well be my boyfriend) is getting mad about it. He’s been awesome through all of this.
I’m so blessed to have people like y’all who know what to do in these situations. Always feel free to tell me more about your fights, too!
God bless,
Jaimy
-
- January 10, 2012 at 4:46 pm
Waiting under the circumstances you are describing would be unacceptable to me. If you have a tumor or lymph node they are seeing on a cat scan, demand a biopsy! I wouldn’t just hang out another 3 weeks! Interferon is suppose to be started as close to initial diagnosis of stage 3 as possible, I believe within the first 8 weeks. Sometimes, testing does delay that start, but you shouldn’t be okay with pace of you doctor’s office. Unfortunately, you will quickly learn that on top of being a cancer patient you have to be your own medical advocate. So get the facts and make a plan! That doctor works for you! Good luck, Valerie (Phil’s wife) -
- January 10, 2012 at 4:46 pm
Waiting under the circumstances you are describing would be unacceptable to me. If you have a tumor or lymph node they are seeing on a cat scan, demand a biopsy! I wouldn’t just hang out another 3 weeks! Interferon is suppose to be started as close to initial diagnosis of stage 3 as possible, I believe within the first 8 weeks. Sometimes, testing does delay that start, but you shouldn’t be okay with pace of you doctor’s office. Unfortunately, you will quickly learn that on top of being a cancer patient you have to be your own medical advocate. So get the facts and make a plan! That doctor works for you! Good luck, Valerie (Phil’s wife)
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