Really scared carcinoid syndrome

[longnovember]

I haven’t posted in awhile, been a rough 6 months, lots of stress due to family health scares, work pressure and the passing of my cat and dog a few months apart. I am so scared that I have a carcinoid tumor. Since I was in my twenties I have raynauds syndrome and my fingers would go white when cold, even in the summer. Occasionally my hands (especially fingers) get bright red and hot without turning white first. This only happened once in awhile and I chalked it up to raynauds. Then in April 2021 I had a ct scan and was told I had a fatty enlarged liver with a cyst. I was so scared I had cirrhosis caused by years of taking acetaminophen for my migraines. Doctor said I’m fine, lose weight. Since then my occasional red hands/fingers triggered fear of liver disease (palmar something). So I got stressed when it happened. About a year ago I noticed it happening more often, especially when I get warm (walking, cleaning, cooking). I started googling and came across carcinoid syndrome, which seems to be mainly face flushing, where mine was my hands. I didn’t notice anything in my face or neck. I pushed it off and avoided going for my annual check up for fear of finding out my liver is getting worse. Then started my 6 months of super stress. I went to the doctor in November, had bloodwork and all my liver levels and counts were normal. Relief, but I started having pressure in my lower right side, mainly to the right of my belly button. It’s not painful, just pressure, sometimes moves to my side and back, but there daily. Had a routine colonoscopy in March which was normal (I’m 47 btw). Started googling and am scared the pressure is coming from a tumor on my appendix or small intestine. What if the liver cyst is actually a tumor. The red hands happen everyday now. I do get some white fingers too from the raynauds. I went to doctor last week and he thinks it may be related to the raynauds but tested me for autoimmune diseases too. I mentioned carcinoid fear and he said he would test for it. But he only ordered bloodwork for sed rate and autoimmune antibodies, and a basic urinalysis. Everything came back normal, so now I’m still scared because of my right side pressure and red hands. I started taking pictures of my hands in different lighting when red as they look better in some lighting, and have become obsessed with checking my face and neck for flushing. My nose was red tonight and my cheeks seem red too, not like my hands but still pinker than my face. Neck is normal. Plus I get red hands when eating dinner every night, what the heck! Used to happen once in awhile when eating salty buttery food, but now every night. I am so scared and depressed. Doctor started me on Celexa last week because I was so stressed. Not sure if that is making things worse since carcinoid tumors release serotonin already which causes the flushing. I did make an appointment with a CBT therapist but can’t be seen until late June. I’m going back to doctor for follow up on Celexa next week and will ask for CT scan for abdominal pressure. He didn’t feel any lumps last week and said it could be gallbladder but I don’t think it is. I’m just so scared and alone. It’s just me and my 15 year old daughter and I don’t want to upset her. I talked with my mom, and she gets stressed because I’m stressed, so I don’t want to keep calling her. Plus I am always jumping to the worse case scenario, thought I had brain cancer in January due to one blurry eye, when it was detached gel/ aka super large floater. But these symptoms have me do scared and falling into deeper panic. Just needed to write it out, thanks to anyone who took time to read.

[peg54321]

I just read through the carinoid tumor information online, and suddenly I thought I too have a tumor!!! These lists of symptoms can fit alot of people and I can see how you'd be worried. My best guess is that perimenopause or menopause (you are just at the right age for symptoms) could be causing alot of your issues right now including the high anxiety and worries.

[longnovember]

Thanks so much for reading and replying Peg. I’m just so sad. I thought it might be perimenopause related too, but can’t shake this fear and doctor doesn’t seem to care. He wants me to see a rheumatologist but that’s not until August.

[peg54321]

When I went through the peri and menopause stages - all up from about 46 years to 52 approx I had so many problems.. almost every single physical system was affected, vascular (constant flushing), urinary (constant urge), skeletral weakening, insomnia, reflux, fears and worries, and appearance of new allergies.... it was like the body went into shock and started showing up all these symptoms and then some years later - it all settled down once again. In the early phases of the meno - I was constantly running to the doctor as so many things were going wrong with me - and it was about 2 years into the meno that I realised it was all pretty much all meno related. Fear, worry, feeling of doom, are all part of it as well. I can't remember where I got my information from - but alot of it was from menopause groups on Facebook and i found other women were also going through hightened health crises of many types as they went through the meno. Its worth getting the reassurance from the doctor and getting the tests coming back as normal. Perhaps you should start looking into supporting your body as it starts going through menopause - things that will help with stress, herbs and vitamins etc.

[longnovember]

That’s a good idea, will look into a menopause group. Hopefully that is all this is. Thanks again

[ErinKC]

It is so bizarre that this post is here! I, too, think I must be hitting perimenopause and in my searching for all the wacky symptoms I've had came across carcinoid syndrome! My face has constantly been flushing and feeling hot, my anxiety is through the roof, I've had weird tingles in my face and hands and legs, etc... etc... I'm only 40, but I had a hysterectomy 2.5 years ago and I've been told it can start early once your ovaries have been shocked like that.

[tn13]

I've had this fear before. I didn't have hot flashes but I was scared I had cushing's syndrome from a carcinoid tumour (do not look it up). Notice a lot of these really scary things that we worry about are things with incredibly vague symptoms that are usually something not sinister at all (like in my case it really was that I had just gained weight and had anxiety, and in your case others are probably right about menopause).

As for the liver cyst, this is incredibly common. Something like 20% of the population has them (probably more, it's just they're only found when people have a scan for a different reason). They can tell the difference easily between a cyst and a solid tumour.

[longnovember]

Thanks everyone for the replies. I just came back from my doctor appointment. I mentioned again my fear of carcinoid tumor causing my symptoms and he said “you’ve been googling haven’t you”. Long story short, he ordered a 24 urine test to detect carcinoid tumors. Now I’m really scared it will be positive. Plus, in the last 2 weeks I started taking Celexa, which increases serotonin. I asked if that will affect the test and he didn’t think so. I’m so scared now. Why did I ever google. What are the odds I have a rare cancer that he wouldn’t have thought of, but I brought up after googling. I hate this.

[longnovember]

Dropped my urine specimen off at lab this morning. At work now, I’m so scared for the results. Can’t focus on my job. So scared. I’ve been in a battle with my mind for weeks now, trying to be logical and shut out the fear, but it’s hard when you have physical symptoms. My darn right side hurts today, my hands will likely be red at some point. The doctors office called this morning to tell me my other labs were normal, just this urine test which is the scariest one of all for me now. I’m half numb, have in tears, acting like an emotional fool. Not sure how to get through this.

[longnovember]

I’m not sure if anyone is reading this, but wanted to follow up for those with a similar fear down the road, I finally got my 5-HIAA urine results and my levels were low, so not indicative of the carcinoid tumor I spent the last year worrying about. Of course my relief is mixed as the lab technician gave me one container for the 24 hours and said I don’t need to collect everything (his words were if you go out for dinner you don’t need to take the container with you) and he said once the container is full you are done, so my 24 hour test was only 11-12 hours which makes me worry the results aren’t accurate. I did have to report my begin and end times and one of the numbers was adjusted based on my times. But they were still quite low at 3 when the normal range is 0-15 so I am trying to accept everything as okay and maybe I can get some happiness back. Thanks for reading, having this outlet is so greatly appreciated.

[Blessed080424]

Hello. Did you ever get definitive answers regarding this. I'm convinced that I have this and have been spiraling all day with fear.