Re: My Scan Results for followup of Renal Cell Carcinoma

Posted by azkidney57 @azkidney57, Nov 5, 2019

So I have my scan results, MRI and Chest CT. They found a 2.7 cm lucent lesion in the left lobe of my liver. The report stated it was likely a complex cyst. I don’t know if I should worry about this or not. So I have not Mets from the RCC, but I have a liver lesion. I can’t find anything that makes sense to me regarding a “lucent lesion” in the internet. What is a “lucent liver lesion”?

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@azkidney57

Hi Ginger the voice of reason. I must admit I did freak out when I was told I have a leision. They think it’s a complex cyst. I never spoke to my cancer center. My PCP office called me and a nurse told me I need to have an ultrasound to check out this leision/ mass/ cyst! I am just tired of not being a “healthy” person anymore. It’s like my body has betrayed me. That’s how I feel. My anxiety stems from not speaking to anyone about my concerns. It feels as if no one cares! I feel alone. Today a nurse called me from the cancer center asking me how I was. I told her I was frustrated with the “system” the medical treadmill patients are made to run. She told me I was anxious. Yes I am I replied. I have an appointment to see my oncologist next week. So this is the reality of surveillance. Just a waiting game. I wish I could be “doing” something to help myself! So I have been labeled as more anxious than the average patient. My cancer center wants me to see a social worker. As I see it I will be living my life in 4 month intervals. This “interval” I am cancer free maybe. Unless I have a liver cancer/ tumor. Next interval who knows! The more scans the more “stuff” wrong they find. I didn’t sign up for this! I need to find how to live with my new reality!

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Dear @azkidney57, I just made myself a steaming cup of magnificent herbal tea. It's a lovely mixture of mint and ginger. Can you imagine for a minute that I just set a big mug of it in front of you? Now, as we sit together, let's put the news you've received into manageable boxes and open one at a time.

Being a patient is a big job. It's not one you applied for and certainly not one you wanted. But it is the most important one you have right now. You can do this.

Your body has betrayed you. It's okay to feel that way. But it's your body and you're going to take care of it and love it, even if it betrayed you. Right?

Yes, scans cause anxiety. But they also give you and your team very valuable information to know what actions need to be taken. Lucency is a technical term for an area that lets X-rays through the tissue and as a result appears darker on the picture. On a CT scan, lucent lesion in the kidney indicates an area of a different density from the surrounding tissue. The technician reading your scans suspects that this lesion might be complex cyst, but more testing will be required to confirm the suspicion and to determine whether the lesion is benign or not. Simple and complex cysts are very common. Here's more information:
https://www.radiologyinfo.org/en/info.cfm?pg=renal-cyst
https://www.health.harvard.edu/diseases-and-conditions/by_the_way_doctor_should_i_be_worried_about_a_kidney_cyst

Information may make you worry. But it can also help equip you. With this information, you can ask informed questions of your care team. You know that this needs followup, so you will make sure that happens.

Of course, you are anxious. And that's okay. It's an absolutely normal response to getting scary news and being faced with the unknown. No, you have not been labeled as more anxious than the average patient. Anxiety and cancer are best friends with each other (unfortunately). One rarely goes without the other. It's NORMAL. The good news is that your cancer center can offer you help. They have social workers. I strongly suggest you see a social worker. They are amazing and should be a part of every cancer patient's team.

I hope that talking with members here on Connect can help with the times in between doctor visits. We do care! Let me know when you're ready for another cup of tea. Okay?

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@colleenyoung

Dear @azkidney57, I just made myself a steaming cup of magnificent herbal tea. It's a lovely mixture of mint and ginger. Can you imagine for a minute that I just set a big mug of it in front of you? Now, as we sit together, let's put the news you've received into manageable boxes and open one at a time.

Being a patient is a big job. It's not one you applied for and certainly not one you wanted. But it is the most important one you have right now. You can do this.

Your body has betrayed you. It's okay to feel that way. But it's your body and you're going to take care of it and love it, even if it betrayed you. Right?

Yes, scans cause anxiety. But they also give you and your team very valuable information to know what actions need to be taken. Lucency is a technical term for an area that lets X-rays through the tissue and as a result appears darker on the picture. On a CT scan, lucent lesion in the kidney indicates an area of a different density from the surrounding tissue. The technician reading your scans suspects that this lesion might be complex cyst, but more testing will be required to confirm the suspicion and to determine whether the lesion is benign or not. Simple and complex cysts are very common. Here's more information:
https://www.radiologyinfo.org/en/info.cfm?pg=renal-cyst
https://www.health.harvard.edu/diseases-and-conditions/by_the_way_doctor_should_i_be_worried_about_a_kidney_cyst

Information may make you worry. But it can also help equip you. With this information, you can ask informed questions of your care team. You know that this needs followup, so you will make sure that happens.

Of course, you are anxious. And that's okay. It's an absolutely normal response to getting scary news and being faced with the unknown. No, you have not been labeled as more anxious than the average patient. Anxiety and cancer are best friends with each other (unfortunately). One rarely goes without the other. It's NORMAL. The good news is that your cancer center can offer you help. They have social workers. I strongly suggest you see a social worker. They are amazing and should be a part of every cancer patient's team.

I hope that talking with members here on Connect can help with the times in between doctor visits. We do care! Let me know when you're ready for another cup of tea. Okay?

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Colleen, I was very taken by your words. I have never felt so “comforted”. Validation is huge for me and for any stressed out person. I get so little of it. I often feel like I am “alone”. Partly it is my fault because I tend to be a more reserved person. I have always comforted others. This cancer has and is the biggest challenge I have experiencedin my life. I feel my life was turned upside down. It isn’t like me to become distraught but I have too much on my plate. I need to learn to deal with my new life as a cancer patient. Like it or not that is my new reality. I also have to keep on advocating for myself. Thank you so very much. Your words made me feel better. This site is proving to be like my “retreat”. I can come here and people respond to me and offer references and great support! JK, Ginger, Contentandwell, and others have been there for me! I am so grateful for this site and the wonderful people on it. I enjoyed our “tea”. 😊

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@azkidney57

JK yes being confident our medical team makes a huge difference. You had a liver transplant wow! That’s huge stuff! How the heck did you cope? I often wonder how people make it. I saw two friends struggle with their cancers. I always felt badly for them they had good days and bad. Both of these two wonderful women died June 2019 with 2 weeks of each other. I couldn’t go to their funerals but I was able to see them both before they died. It was so very difficult to see my my friend of many years during her finally days but I am glad I did. Cancer sucks! Thank you JK for your response. I appreciate your sharing your experience.

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@azkidney57 you asked how I coped, I pretty much put statistics out of my mind except occasionally when I was very alone, walking or trying to fall asleep. Staying busy and occupied was essential.
Like you, I’m pretty reserved so few people knew of any concerns I had, and I worked to look good all of the time so no one would feel sorry for me – people were constantly telling me how good I looked! It’s sort of ironic because I put less in my appearance now! Even my PCP commented that if he didn’t know I had a serious condition he would think I was very healthy.
Any serious condition causes a certain amount of anxiety, you are not alone and so many of us here have dealt with this. As @colleenyoung said, we do care, and we can relate.
Hugs, JK

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@azkidney57

Colleen, I was very taken by your words. I have never felt so “comforted”. Validation is huge for me and for any stressed out person. I get so little of it. I often feel like I am “alone”. Partly it is my fault because I tend to be a more reserved person. I have always comforted others. This cancer has and is the biggest challenge I have experiencedin my life. I feel my life was turned upside down. It isn’t like me to become distraught but I have too much on my plate. I need to learn to deal with my new life as a cancer patient. Like it or not that is my new reality. I also have to keep on advocating for myself. Thank you so very much. Your words made me feel better. This site is proving to be like my “retreat”. I can come here and people respond to me and offer references and great support! JK, Ginger, Contentandwell, and others have been there for me! I am so grateful for this site and the wonderful people on it. I enjoyed our “tea”. 😊

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@azkidney57 Stress and anxiety are not our best friends, in fact I hesitate to call them friends at all. "With friends like that, who needs enemies", right? Like you I am pretty reserved, and to be vulnerable as we march through a scary situation, looking to count on/lean on someone, is terrifying. But I have learned that it is okay to be a bit vulnerable. I do not wear my latest cancer on my sleeve, but have let a few people know, and recovering from last week's biopsy [with complications], I found it okay to limit myself and activities. I am me, a person, not this cancer. I won't let it dictate my life, my activities, my dreams. While it may not have a real good outcome, for today I am here and making plans. You have to, to avoid falling further into anxiety or depression. Stick around here at the cyber-table with us! You're worth it. Each day can be a challenge, while being a blessing. Go for it!
Ginger

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@gingerw

@azkidney57 Stress and anxiety are not our best friends, in fact I hesitate to call them friends at all. "With friends like that, who needs enemies", right? Like you I am pretty reserved, and to be vulnerable as we march through a scary situation, looking to count on/lean on someone, is terrifying. But I have learned that it is okay to be a bit vulnerable. I do not wear my latest cancer on my sleeve, but have let a few people know, and recovering from last week's biopsy [with complications], I found it okay to limit myself and activities. I am me, a person, not this cancer. I won't let it dictate my life, my activities, my dreams. While it may not have a real good outcome, for today I am here and making plans. You have to, to avoid falling further into anxiety or depression. Stick around here at the cyber-table with us! You're worth it. Each day can be a challenge, while being a blessing. Go for it!
Ginger

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Ginger, thank you for your reply. I am trying not to let my stress get the best of me. I do become anxious when something new crops up concerning my health. I have never been this way before. Now that I have a “cancer diagnosis” I am stressed out about my health! That is a normal response! My cancer center wants to have me see a psychiatrist for medication to help with my anxiety. Also, they feel I need “coping skills”. I am debating whether to take them up on their offer. I have an appointment with the oncologist this coming week. I will let him know what my expectations are as a patient . I will be reasonable of course. I will have an ultrasound to check out my liver lesion. No one seems to be too impressed with it. My doctors nurse told me I am more “anxious” than the average patient. I am being “labeled”. I realize there are many patients and I am under “surveillance” but they still need to meet my “needs”. I am the “client”. No one really explained the ground rules to me! I don’t intend to sit around and wait for other people to respond! I will aggressively advocate for myself and in so doing I figure it will help other patients. I have “rights” as a patient. I will be writing a carefully worded letter to the cancer centers “administrator”. My care hasn’t been all bad. I will give credit where it is do. I just feel better response time after scans is needed for all Surveillance patients! I will never wait a week for results! I found out my results were available 2 days after they were done. Thanks to Colleen I now know what a “lucent lesion” is. I learn something new all the time! Thanks again Ginger for sharing your thoughts it really helps me put things in perspective! 😊

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@azkidney57

Ginger, thank you for your reply. I am trying not to let my stress get the best of me. I do become anxious when something new crops up concerning my health. I have never been this way before. Now that I have a “cancer diagnosis” I am stressed out about my health! That is a normal response! My cancer center wants to have me see a psychiatrist for medication to help with my anxiety. Also, they feel I need “coping skills”. I am debating whether to take them up on their offer. I have an appointment with the oncologist this coming week. I will let him know what my expectations are as a patient . I will be reasonable of course. I will have an ultrasound to check out my liver lesion. No one seems to be too impressed with it. My doctors nurse told me I am more “anxious” than the average patient. I am being “labeled”. I realize there are many patients and I am under “surveillance” but they still need to meet my “needs”. I am the “client”. No one really explained the ground rules to me! I don’t intend to sit around and wait for other people to respond! I will aggressively advocate for myself and in so doing I figure it will help other patients. I have “rights” as a patient. I will be writing a carefully worded letter to the cancer centers “administrator”. My care hasn’t been all bad. I will give credit where it is do. I just feel better response time after scans is needed for all Surveillance patients! I will never wait a week for results! I found out my results were available 2 days after they were done. Thanks to Colleen I now know what a “lucent lesion” is. I learn something new all the time! Thanks again Ginger for sharing your thoughts it really helps me put things in perspective! 😊

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@azkidney57 I think as you write your letter, you may find your stress level decreasing. I found that to be true for me, anyway. Sometimes patients receive less-than-ideal treatment by medical professionals. I am like you, and will not let it lie. Having dealt with chronic illness since 1988 I know when it's time to make my thoughts known. You're right, it does make a difference not only to me but for others. My scan/biopsy/test results are reviewed by a dr before they are released to me, even on the patient portal, so that may be why you don't get results right away. I recall my oncologist telling me "I don't want you searching the internet for information unless it is about the right diagnosis, so I am not going to say much right now". Which totally made sense to me, to not get too anxious. Does that make sense to you, too? Your nurse is labeling you, not the cancer center or your dr. You have a right to information. They need to realize that patients process information differently, and some want more information that others. Be gentle on yourself, and know we are right here for you!
Ginger

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@azkidney57

Ginger, thank you for your reply. I am trying not to let my stress get the best of me. I do become anxious when something new crops up concerning my health. I have never been this way before. Now that I have a “cancer diagnosis” I am stressed out about my health! That is a normal response! My cancer center wants to have me see a psychiatrist for medication to help with my anxiety. Also, they feel I need “coping skills”. I am debating whether to take them up on their offer. I have an appointment with the oncologist this coming week. I will let him know what my expectations are as a patient . I will be reasonable of course. I will have an ultrasound to check out my liver lesion. No one seems to be too impressed with it. My doctors nurse told me I am more “anxious” than the average patient. I am being “labeled”. I realize there are many patients and I am under “surveillance” but they still need to meet my “needs”. I am the “client”. No one really explained the ground rules to me! I don’t intend to sit around and wait for other people to respond! I will aggressively advocate for myself and in so doing I figure it will help other patients. I have “rights” as a patient. I will be writing a carefully worded letter to the cancer centers “administrator”. My care hasn’t been all bad. I will give credit where it is do. I just feel better response time after scans is needed for all Surveillance patients! I will never wait a week for results! I found out my results were available 2 days after they were done. Thanks to Colleen I now know what a “lucent lesion” is. I learn something new all the time! Thanks again Ginger for sharing your thoughts it really helps me put things in perspective! 😊

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@azkidney57 I have learned more and more that we do need to advocate for ourselves.
When I first was diagnosed with cirrhosis it was suggested that I see a therapist. After two or three sessions we both agreed that I didn’t need that.
Oddly I rarely stress about medical issues! I am stressed about having osteoporosis since I know what great risk I am at, particularly in winter with icy sidewalks and parking lots. The fracture I had in July really made me cautious.
Good luck with your letter, I think that is something more of us should do when dissatisfied. I hope it will get their attention and lead to better future communications.
JK

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@azkidney57

Ginger, thank you for your reply. I am trying not to let my stress get the best of me. I do become anxious when something new crops up concerning my health. I have never been this way before. Now that I have a “cancer diagnosis” I am stressed out about my health! That is a normal response! My cancer center wants to have me see a psychiatrist for medication to help with my anxiety. Also, they feel I need “coping skills”. I am debating whether to take them up on their offer. I have an appointment with the oncologist this coming week. I will let him know what my expectations are as a patient . I will be reasonable of course. I will have an ultrasound to check out my liver lesion. No one seems to be too impressed with it. My doctors nurse told me I am more “anxious” than the average patient. I am being “labeled”. I realize there are many patients and I am under “surveillance” but they still need to meet my “needs”. I am the “client”. No one really explained the ground rules to me! I don’t intend to sit around and wait for other people to respond! I will aggressively advocate for myself and in so doing I figure it will help other patients. I have “rights” as a patient. I will be writing a carefully worded letter to the cancer centers “administrator”. My care hasn’t been all bad. I will give credit where it is do. I just feel better response time after scans is needed for all Surveillance patients! I will never wait a week for results! I found out my results were available 2 days after they were done. Thanks to Colleen I now know what a “lucent lesion” is. I learn something new all the time! Thanks again Ginger for sharing your thoughts it really helps me put things in perspective! 😊

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@azkidney57 I just read your message again and the part about possibly going to a psychiatrist struck me more this time. I have a niece who had triple-negative breast cancer, two years ago when she was 40. She did see a therapist as did my sister, my sister of course was very distraught about it. They both found it very helpful. My niece has been declared cancer-free but of course she will always worry. When it gets her very down she has that relationship with her therapist in place and she can see her for an appointment to help alleviate her stress.
It's certainly worth a try, and if like me you find it is not helping you can stop, or like my niece and many others you might find it very helpful.
JK

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@contentandwell

@azkidney57 I just read your message again and the part about possibly going to a psychiatrist struck me more this time. I have a niece who had triple-negative breast cancer, two years ago when she was 40. She did see a therapist as did my sister, my sister of course was very distraught about it. They both found it very helpful. My niece has been declared cancer-free but of course she will always worry. When it gets her very down she has that relationship with her therapist in place and she can see her for an appointment to help alleviate her stress.
It's certainly worth a try, and if like me you find it is not helping you can stop, or like my niece and many others you might find it very helpful.
JK

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JK, at first I found the idea of going to a psychiatrist a bit insulting. But I have gone through a traumatic event. I think I have some PTSD from this entire ordeal. I lost a kidney! It seems to be bothering me more lately. My oncologist’s nurse told me I was more “anxious”than the average patient that bothered me. I felt she was being very judge mental. I find I tend to be more irritable and annoyed with people and situations. I am impatient and I really dislike being in large crowds of people! Like at a mall or large store. Not phobia just all those people I see then as obstacles. This is not my “normal” me. I have to watch what I say also. I told a woman to get out of the way at a grocery store. She was blocking the aisle with her shopping cart. Normally I would be more polite and move around. But I felt myself become aggressive towards her. This is Not like me at all. So something is or has happened to me psychologically. I think I will see the psychiatrist just to see how it goes. I do need to calm down in general! Having a cancer diagnosis disagreed with me! I don’t like the idea of “interval” living. That’s what I call Surveillance. Every 4 months I will be scannned for a year. So the cycle, the scanxiety, the waiting for results, this will repeat! How do people deal with this? I hope it doesn’t drive me crazy! This coming week I have to see 2 specialists. I don’t want to go! If I develop Mets I really don’t know how I would take that. I am trying to be positive because at present I am cancer free. It is very difficult for me right now. I think is best to see a psychiatrist then reach for a gin and tonic. Thank you checking on me. I appreciate it!

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@azkidney57

JK, at first I found the idea of going to a psychiatrist a bit insulting. But I have gone through a traumatic event. I think I have some PTSD from this entire ordeal. I lost a kidney! It seems to be bothering me more lately. My oncologist’s nurse told me I was more “anxious”than the average patient that bothered me. I felt she was being very judge mental. I find I tend to be more irritable and annoyed with people and situations. I am impatient and I really dislike being in large crowds of people! Like at a mall or large store. Not phobia just all those people I see then as obstacles. This is not my “normal” me. I have to watch what I say also. I told a woman to get out of the way at a grocery store. She was blocking the aisle with her shopping cart. Normally I would be more polite and move around. But I felt myself become aggressive towards her. This is Not like me at all. So something is or has happened to me psychologically. I think I will see the psychiatrist just to see how it goes. I do need to calm down in general! Having a cancer diagnosis disagreed with me! I don’t like the idea of “interval” living. That’s what I call Surveillance. Every 4 months I will be scannned for a year. So the cycle, the scanxiety, the waiting for results, this will repeat! How do people deal with this? I hope it doesn’t drive me crazy! This coming week I have to see 2 specialists. I don’t want to go! If I develop Mets I really don’t know how I would take that. I am trying to be positive because at present I am cancer free. It is very difficult for me right now. I think is best to see a psychiatrist then reach for a gin and tonic. Thank you checking on me. I appreciate it!

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@azkidney57 I think the nurse who told you that you are more anxious than the average patient was totally out of line. Not only was she being judgemental, but that was simply tactless. Nurses should be trying to make you feel better, not worse.
I can understand your impatience in the grocery store. I find myself having less patience with people too at times. I just attribute it to be older. So far I have generally been able to resist saying anything. I just see a little cartoon type of bubble above my head with what I would like to say! It works for me. Consider yourself lucky that you can have that gin and tonic — being post-transplant I cannot have any alcohol. There are days when I would love to have a glass of wine to help me unwind.
As we get older we have more and more health problems of course and I don't think that sets well with anyone but we have to accept it and do the best we can. I am under surveillance for cancer and have yearly MRIs. I am able to put it out of mind generally but do worry prior to it. I think that's just natural.
I hope you get back to us on how the doctor appointments go this week, I will be hoping for the best for you.
JK

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