Lily777
17-12-16, 03:24
Hello to all of my fellow health anxiety suffers,
My name is Lily, and I joined this website in March of 2015, due to concern over some lymph nodes. Up until college, I never worried about my health much at all. If I felt something "weird" or "off" about my body, I would just ignore it until it went away. I was never concerned, and I definitely never jumped to the worst possible conclusions, like I do now. I'm not sure when, or how exactly everything changed, but it did. I now constantly worry about my heath, and I always think something is severely wrong with me.
I've been down the "breast cancer" road. I had pain in and around my left breast, and I was certain that I could feel a lump in there. My doctor gave me a breast exam, and she told me that she did not feel anything at all. I did not believe her, so she referred me for an ultrasound, which showed nothing at all. And the pain went away. How much of that pain was psychosomatic? I'll never know.
Next, I went down the "lymphoma" road, a road that I am still currently on. I found four palpable lymph nodes in my lower cervical region and near my collar bone in March of 2015. My doctor felt them, and she said they were small and of no concern. She told me to return in six weeks to see if they change in size or texture. I returned and she once again told me that I was fine. She referred me for an ultrasound for my own reassurance; the ultrasound did indeed show the four lymph nodes, the biggest being a 1.4 cm right supraclavicular node. She was not concerned, and I completely forgot about it, as I moved on to other worries, as many of you fellow health anxiety sufferers are probably very familiar with.
The health worry I moved on to was ovarian cancer. I was having persistent left sided lower abdominal pain and back pain. After many months of testing and many emergency room visits, an ultrasound showed that my ovaries were covered in cysts. I was referred to an endocrinologist to test for PCOS. My hormone and glucose levels were normal, so I did not have PCOS. The endocrinologist referred me for a abdominal and pelvic CT scan, which came back basically normal. It only revealed a small (estimated to be 7 mm) cyst on my spleen. The person who read the CT scan stated that it was so small that they weren't entirely sure what it was. My doctor said that it was of no concern and hesitated even mentioning it to me because she knows how I am. That fear about ovarian cancer passed, and I actually did really well for many months.
Most recently, I have circled back to lymphoma. I started nursing school in August of 2016. Many people may question how a person with health anxiety can do anything in the medical field, but i do believe it is my true calling and I am not going to let my mental illness stop me from doing what I want to do in life. We began talking about lymph nodes in one of my classes, and I immediately thought, "I wonder if my lymph nodes are still there?" I felt my neck, and sure enough they were. It reignited my fear about lymphoma, so I returned to the doctor (by this time I had since switched from my old doctor). My new doctor felt them, and said that he is 99% sure that they are nothing serious being that they have been there for one year and 10 months, and having no other symptoms like night sweats, itching, fever, weight loss, etc. He said that he could see how scared I was and referred me to an ENT specialist. The ENT specialist felt them, and said he is 97% that nothing is going on. He offered for me to have a biopsy just to know once and for all, and even stated "I have never found cancer unless I was specifically looking for it." You would think I would feel some sort of reassurance, but I do not.
This brings me to today, and what prompted me to write this. I saw my doctor today and it kicked me off into a panic attack. For the past three weeks, I have been having back pain when I take a deep breath in (he diagnosed it as costochondritis). In my mind, I was thinking I was having the pain because I had a tumor in my chest pressing on things. Also, I have had what I think is an occipital lymph node. Being that I already have lymph nodes I'm quite worried about, I became quite alarmed. My doctor felt it and actually thinks it's a tight muscle, and he stated that even if it is a lymph node, he is not concerned. Lastly, I asked him about my right supraclavicular lymph node. He said that he has felt lymph nodes of people who had cancer, and that mine does not feel like that. He did not recommend any further testing; however, I am taking the ENT specialist up on his biopsy offer (scheduled for February 1st). He said to just keep an eye on it, which is easy for him to say and hard for someone with health anxiety to do. The lymph node according to my ultrasound in April of 2015 was 1.4 cm. It is kind of firm, and very movable. Being that it is larger than 1 cm, painless, firm, and in a very scary area (supraclavicular region), I still panic about it.
Between each major health anxiety scare, I have had multiple small ones. Every little pain or weird symptom, my mind goes to lymphoma. I constantly check the lymph node, and it is so, so hard to stop myself. Every where I look, I feel as if I see, read, or hear things about lymphoma. And as crazy as it sounds, I feel as if it's a sign from a higher power that I do have lymphoma. I look all over the internet for people who also have supraclavicular lymph nodes and turned out to be okay. Those stories are few and far between, which is very scary and discouraging for me. I have visions of myself having to quite school in the middle of the semester, in order to endure chemotherapy. I have visions of me being bald and constantly ill from the chemo. It's awful, and it makes me sick to my stomach to think this may be my future.
I felt the need to write this in order to get some things off my chest, and more importantly, to let other people on here know that they are not alone. At times on this website, my posts have been ignored. I know that it's because sometimes people don't know what to say, but it does feel bad for me to have my posts ignored when looking for reassurance. At other times, some people have made me feel bad for posting or looking for reassurance. I believe this website should be a safe space to act as "crazy" as we want to. I use the term "crazy" lightly, because I know we've all felt that way at times lol. My family and friends have no idea how to handle me and some of the things I think, so that is why I come on here. I want anyone on here looking for reassurance or simply someone to read their story or talk to, to know that I am here. For anyone that took the time to read this far, thank you from the bottom of my heart. For anyone that got this far, you can ALWAYS private message me if need be. Especially for anyone with lymphoma worries or supraclavicular lymph nodes, please do message me. I know that this a common worry for people on this site, and we are in this together. Please reply with your stories or current worries, I'd love to read them and respond.
Thank you, thank you, thank you for this wonderful forum and for being a great support system for me. :hugs:
UPDATE: My biopsy on my lymph node got moved from February 1st to January 11th, due to a cancellation. I'm extremely nervous about what the results of the biopsy will be, and my mind automatically goes to the worst possible conclusion. I will update again on January 3rd (my pre-op consultation), January 11th, and then whenever I get the results of my biopsy. I'm maintaining these updates for other people that worry about their lymph nodes because I know that threads with no conclusion can make you feel more anxious.
January 3rd 2017 UPDATE: Today I went to my ENT for a pre-op consultation. I signed a bunch of paperwork recognizing the risks of the surgery and anesthesia. I was offered to do local anesthesia, local anesthesia with a sedative, or general anesthesia. I still haven't decided which I want to do. He also sent me for blood work to make sure that I am okay for surgery (this brings new fears that the blood work will reflect my fears of lymphoma or something being wrong to where I can't have the surgery and then I must prolong this suffering of not knowing). When discussing my lymph node, he estimated the size to be between 1.5 cm and 2.0 cm. That really worried me because my ultrasound from a couple years ago stated that it was 1.4 cm. This leads me to believe that it grew, which is obviously not a good sign at all. I had been messing with the lymph node quite a lot today before seeing my ENT, so I'm hoping that is what caused it to be bigger. It is quite odd because sometimes my lymph node feels big and literally 30 minutes later it will feel smaller, some days it feels firm, and other days it feels soft. I have read of people that had lymphoma whose lymph nodes did that which causes me to worry. I told my ENT that I'm very worried about the results of the biopsy and he said, "I would put my money on this being a reactive node. I feel that once I meet with you for the follow-up appointment after the surgery, I will be able to tell you this was a reactive node and you can forget about this whole thing. I have never found cancer unless I was specifically looking for it. This is being done to give you peace of mind, and there is a lot to be said for having peace of mind." My mother was also with me and asked, "Have you ever had a lymph node like this on other patients that turned out to be benign?" and my ENT replied, "Oh, all the time." While that is encouraging, I am obviously still very worried for both the surgery itself and the results. My next update will be after I have the surgery to remove the lymph node.
January 11th 2017 UPDATE: I had the surgery today, under general anethesia. I decided on general so that way I could just fall asleep and wake up with it all being over. That part was not so bad. My throat is extremely sore from the tube they put down my throat, and the spot where they did the biopsy is sore as well, but not excruciating. My surgeon came out and told my mom that he removed two lymph nodes instead of one, the biggest one being 1.5 cm, so very close to the original ultrasound report I had. I had been poking the lymph node literally right up until I went into the operating room, so that may be why it was a bit bigger (at least that's what i'm hoping for). He said he removed the second one just to be thorough. He also saw others, but said they were all normal in size. My mom asked if he's concerned that the biopsy will come back bad, and he said that he's not concerned at all, and says the nodes look reactive in nature. My next appointment with him is on Tuesday, and the results should be in by then. He said if they aren't, then he will call me when they are. The waiting is terrifying, and all I can do is pray my doctor is right.
January 17th 2017 UPDATE: I went for a follow-up appointment today. I got my stitches out. The healing process is not bad at all. There is a little bit of soreness and stiffness, but nothing awful. I only took ibuprofen the night of the surgery for pain, and have not needed anything since. The results of my biopsy are not in yet, but my doctor said to me, "Don't worry, they will be normal." I know doctors do not say those things unless they are nearly 100% sure. I am still however very worried.
January 23rd 2017 UPDATE: After not receiving my biopsy results for nearly two weeks, I called my doctor's office. The receptionist said the results were still not in yet, but that she would contact the place where the lymph nodes were sent, and for me to call back in an hour. I called back an hour later, and she informed me that my results were in, but that the doctor would have to review them first and that they'd call me later. *QUEUE PANIC* I of course started worrying that the results would be bad, but I tried to reassure myself that if they were bad the receptionist wouldn't have to call pathology to the get the results, pathology would have already sent them. About two hours later, I get another call. It was the receptionist informing me that the results are that it's a normal lymph node! I cannot express how happy I am to have this news. Part of me has a hard time believing it because I was so convinced that the result would be lymphoma. But it isn't, it's just a normal lymph node! I hope that this gives someone out there a little bit of hope that not all supraclavicular lymph nodes are a death sentence. If you have one, yes absolutely get it checked out, but trust your doctor when they tell you that you are okay. I know that is WAY easier said than done. For the past two years, my doctors have been right all along. In terms of my actual incision, there is still a fair amount of swelling. The area feels very hard, and almost looks there's another, bigger lymph node in place of the one that was taken out. So if anyone gets this procedure done, don't panic if you see that, my doctor informed me that this is normal. Other than the swelling, the area is still tender, and its hard to turn my head in certain directions. I will come back and update a few more times as the area heals, just so if anyone out there is getting a biopsy done, they have some idea of what to expect. I know its hard to find stories online of biopsies as the person is going through it, and ultimately what their result was. I didn't want to leave you guys hanging, and I really do hope that this makes people feel better about their lymph nodes. I had one in the "worst" area you can have one, and it was okay!
August 20th 2017 UPDATE: I haven't logged on for quite some time because I have been doing fairly well recently. I've had a few minor worries that have popped up here and there over the past few months, but I have worked through them. Just to give an update on the lymph node situation, the scar from my surgery has healed beautifully and you can hardly tell I've had anything done. I try not to worry about my lymph nodes any longer. I do have one in the occipital area on the left side of the back off my head that keeps popping up. I did see the doctor for it, and he said he was not concerned because it gets bigger and smaller, and that because that area is very muscular, sometimes lymph nodes get trapped between muscles thus making them easier to feel. He would only be concerned if it were to keep growing. I have tried to accept that as the truth, and try to remain as rational as possible about the situation. I do hope this thread helps anyone struggling with lymph node anxiety, or just health anxiety in general. As always, message me if you need to talk!
My name is Lily, and I joined this website in March of 2015, due to concern over some lymph nodes. Up until college, I never worried about my health much at all. If I felt something "weird" or "off" about my body, I would just ignore it until it went away. I was never concerned, and I definitely never jumped to the worst possible conclusions, like I do now. I'm not sure when, or how exactly everything changed, but it did. I now constantly worry about my heath, and I always think something is severely wrong with me.
I've been down the "breast cancer" road. I had pain in and around my left breast, and I was certain that I could feel a lump in there. My doctor gave me a breast exam, and she told me that she did not feel anything at all. I did not believe her, so she referred me for an ultrasound, which showed nothing at all. And the pain went away. How much of that pain was psychosomatic? I'll never know.
Next, I went down the "lymphoma" road, a road that I am still currently on. I found four palpable lymph nodes in my lower cervical region and near my collar bone in March of 2015. My doctor felt them, and she said they were small and of no concern. She told me to return in six weeks to see if they change in size or texture. I returned and she once again told me that I was fine. She referred me for an ultrasound for my own reassurance; the ultrasound did indeed show the four lymph nodes, the biggest being a 1.4 cm right supraclavicular node. She was not concerned, and I completely forgot about it, as I moved on to other worries, as many of you fellow health anxiety sufferers are probably very familiar with.
The health worry I moved on to was ovarian cancer. I was having persistent left sided lower abdominal pain and back pain. After many months of testing and many emergency room visits, an ultrasound showed that my ovaries were covered in cysts. I was referred to an endocrinologist to test for PCOS. My hormone and glucose levels were normal, so I did not have PCOS. The endocrinologist referred me for a abdominal and pelvic CT scan, which came back basically normal. It only revealed a small (estimated to be 7 mm) cyst on my spleen. The person who read the CT scan stated that it was so small that they weren't entirely sure what it was. My doctor said that it was of no concern and hesitated even mentioning it to me because she knows how I am. That fear about ovarian cancer passed, and I actually did really well for many months.
Most recently, I have circled back to lymphoma. I started nursing school in August of 2016. Many people may question how a person with health anxiety can do anything in the medical field, but i do believe it is my true calling and I am not going to let my mental illness stop me from doing what I want to do in life. We began talking about lymph nodes in one of my classes, and I immediately thought, "I wonder if my lymph nodes are still there?" I felt my neck, and sure enough they were. It reignited my fear about lymphoma, so I returned to the doctor (by this time I had since switched from my old doctor). My new doctor felt them, and said that he is 99% sure that they are nothing serious being that they have been there for one year and 10 months, and having no other symptoms like night sweats, itching, fever, weight loss, etc. He said that he could see how scared I was and referred me to an ENT specialist. The ENT specialist felt them, and said he is 97% that nothing is going on. He offered for me to have a biopsy just to know once and for all, and even stated "I have never found cancer unless I was specifically looking for it." You would think I would feel some sort of reassurance, but I do not.
This brings me to today, and what prompted me to write this. I saw my doctor today and it kicked me off into a panic attack. For the past three weeks, I have been having back pain when I take a deep breath in (he diagnosed it as costochondritis). In my mind, I was thinking I was having the pain because I had a tumor in my chest pressing on things. Also, I have had what I think is an occipital lymph node. Being that I already have lymph nodes I'm quite worried about, I became quite alarmed. My doctor felt it and actually thinks it's a tight muscle, and he stated that even if it is a lymph node, he is not concerned. Lastly, I asked him about my right supraclavicular lymph node. He said that he has felt lymph nodes of people who had cancer, and that mine does not feel like that. He did not recommend any further testing; however, I am taking the ENT specialist up on his biopsy offer (scheduled for February 1st). He said to just keep an eye on it, which is easy for him to say and hard for someone with health anxiety to do. The lymph node according to my ultrasound in April of 2015 was 1.4 cm. It is kind of firm, and very movable. Being that it is larger than 1 cm, painless, firm, and in a very scary area (supraclavicular region), I still panic about it.
Between each major health anxiety scare, I have had multiple small ones. Every little pain or weird symptom, my mind goes to lymphoma. I constantly check the lymph node, and it is so, so hard to stop myself. Every where I look, I feel as if I see, read, or hear things about lymphoma. And as crazy as it sounds, I feel as if it's a sign from a higher power that I do have lymphoma. I look all over the internet for people who also have supraclavicular lymph nodes and turned out to be okay. Those stories are few and far between, which is very scary and discouraging for me. I have visions of myself having to quite school in the middle of the semester, in order to endure chemotherapy. I have visions of me being bald and constantly ill from the chemo. It's awful, and it makes me sick to my stomach to think this may be my future.
I felt the need to write this in order to get some things off my chest, and more importantly, to let other people on here know that they are not alone. At times on this website, my posts have been ignored. I know that it's because sometimes people don't know what to say, but it does feel bad for me to have my posts ignored when looking for reassurance. At other times, some people have made me feel bad for posting or looking for reassurance. I believe this website should be a safe space to act as "crazy" as we want to. I use the term "crazy" lightly, because I know we've all felt that way at times lol. My family and friends have no idea how to handle me and some of the things I think, so that is why I come on here. I want anyone on here looking for reassurance or simply someone to read their story or talk to, to know that I am here. For anyone that took the time to read this far, thank you from the bottom of my heart. For anyone that got this far, you can ALWAYS private message me if need be. Especially for anyone with lymphoma worries or supraclavicular lymph nodes, please do message me. I know that this a common worry for people on this site, and we are in this together. Please reply with your stories or current worries, I'd love to read them and respond.
Thank you, thank you, thank you for this wonderful forum and for being a great support system for me. :hugs:
UPDATE: My biopsy on my lymph node got moved from February 1st to January 11th, due to a cancellation. I'm extremely nervous about what the results of the biopsy will be, and my mind automatically goes to the worst possible conclusion. I will update again on January 3rd (my pre-op consultation), January 11th, and then whenever I get the results of my biopsy. I'm maintaining these updates for other people that worry about their lymph nodes because I know that threads with no conclusion can make you feel more anxious.
January 3rd 2017 UPDATE: Today I went to my ENT for a pre-op consultation. I signed a bunch of paperwork recognizing the risks of the surgery and anesthesia. I was offered to do local anesthesia, local anesthesia with a sedative, or general anesthesia. I still haven't decided which I want to do. He also sent me for blood work to make sure that I am okay for surgery (this brings new fears that the blood work will reflect my fears of lymphoma or something being wrong to where I can't have the surgery and then I must prolong this suffering of not knowing). When discussing my lymph node, he estimated the size to be between 1.5 cm and 2.0 cm. That really worried me because my ultrasound from a couple years ago stated that it was 1.4 cm. This leads me to believe that it grew, which is obviously not a good sign at all. I had been messing with the lymph node quite a lot today before seeing my ENT, so I'm hoping that is what caused it to be bigger. It is quite odd because sometimes my lymph node feels big and literally 30 minutes later it will feel smaller, some days it feels firm, and other days it feels soft. I have read of people that had lymphoma whose lymph nodes did that which causes me to worry. I told my ENT that I'm very worried about the results of the biopsy and he said, "I would put my money on this being a reactive node. I feel that once I meet with you for the follow-up appointment after the surgery, I will be able to tell you this was a reactive node and you can forget about this whole thing. I have never found cancer unless I was specifically looking for it. This is being done to give you peace of mind, and there is a lot to be said for having peace of mind." My mother was also with me and asked, "Have you ever had a lymph node like this on other patients that turned out to be benign?" and my ENT replied, "Oh, all the time." While that is encouraging, I am obviously still very worried for both the surgery itself and the results. My next update will be after I have the surgery to remove the lymph node.
January 11th 2017 UPDATE: I had the surgery today, under general anethesia. I decided on general so that way I could just fall asleep and wake up with it all being over. That part was not so bad. My throat is extremely sore from the tube they put down my throat, and the spot where they did the biopsy is sore as well, but not excruciating. My surgeon came out and told my mom that he removed two lymph nodes instead of one, the biggest one being 1.5 cm, so very close to the original ultrasound report I had. I had been poking the lymph node literally right up until I went into the operating room, so that may be why it was a bit bigger (at least that's what i'm hoping for). He said he removed the second one just to be thorough. He also saw others, but said they were all normal in size. My mom asked if he's concerned that the biopsy will come back bad, and he said that he's not concerned at all, and says the nodes look reactive in nature. My next appointment with him is on Tuesday, and the results should be in by then. He said if they aren't, then he will call me when they are. The waiting is terrifying, and all I can do is pray my doctor is right.
January 17th 2017 UPDATE: I went for a follow-up appointment today. I got my stitches out. The healing process is not bad at all. There is a little bit of soreness and stiffness, but nothing awful. I only took ibuprofen the night of the surgery for pain, and have not needed anything since. The results of my biopsy are not in yet, but my doctor said to me, "Don't worry, they will be normal." I know doctors do not say those things unless they are nearly 100% sure. I am still however very worried.
January 23rd 2017 UPDATE: After not receiving my biopsy results for nearly two weeks, I called my doctor's office. The receptionist said the results were still not in yet, but that she would contact the place where the lymph nodes were sent, and for me to call back in an hour. I called back an hour later, and she informed me that my results were in, but that the doctor would have to review them first and that they'd call me later. *QUEUE PANIC* I of course started worrying that the results would be bad, but I tried to reassure myself that if they were bad the receptionist wouldn't have to call pathology to the get the results, pathology would have already sent them. About two hours later, I get another call. It was the receptionist informing me that the results are that it's a normal lymph node! I cannot express how happy I am to have this news. Part of me has a hard time believing it because I was so convinced that the result would be lymphoma. But it isn't, it's just a normal lymph node! I hope that this gives someone out there a little bit of hope that not all supraclavicular lymph nodes are a death sentence. If you have one, yes absolutely get it checked out, but trust your doctor when they tell you that you are okay. I know that is WAY easier said than done. For the past two years, my doctors have been right all along. In terms of my actual incision, there is still a fair amount of swelling. The area feels very hard, and almost looks there's another, bigger lymph node in place of the one that was taken out. So if anyone gets this procedure done, don't panic if you see that, my doctor informed me that this is normal. Other than the swelling, the area is still tender, and its hard to turn my head in certain directions. I will come back and update a few more times as the area heals, just so if anyone out there is getting a biopsy done, they have some idea of what to expect. I know its hard to find stories online of biopsies as the person is going through it, and ultimately what their result was. I didn't want to leave you guys hanging, and I really do hope that this makes people feel better about their lymph nodes. I had one in the "worst" area you can have one, and it was okay!
August 20th 2017 UPDATE: I haven't logged on for quite some time because I have been doing fairly well recently. I've had a few minor worries that have popped up here and there over the past few months, but I have worked through them. Just to give an update on the lymph node situation, the scar from my surgery has healed beautifully and you can hardly tell I've had anything done. I try not to worry about my lymph nodes any longer. I do have one in the occipital area on the left side of the back off my head that keeps popping up. I did see the doctor for it, and he said he was not concerned because it gets bigger and smaller, and that because that area is very muscular, sometimes lymph nodes get trapped between muscles thus making them easier to feel. He would only be concerned if it were to keep growing. I have tried to accept that as the truth, and try to remain as rational as possible about the situation. I do hope this thread helps anyone struggling with lymph node anxiety, or just health anxiety in general. As always, message me if you need to talk!