Adrenal carcinoma cancer
Just wondering if anyone out here knows much about this cancer. I have been diagnosed, but I think I still have a chance at a good outcome.
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I have adrenal cortical carcinoma stage 3. Very rare cancer. I had an adrenalectomy on left side. They removed the gland. I have another tumor on the right gland that they say is a benign adenoma, but I'm not so sure. I'm a 54 year old male. No previous cancer history.
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I was originally diagnosed on October of 2021 while being 5months pregnant. I had emergency surgery to remove the tumor as well as my right adrenal gland. I did 25 pounds of radiation treatment after giving birth in January of 2022. I'm currently taking mitotane (chemo pills) since there have been spots of the cancer in my lungs. I have a 2yr old son & will be 32 in October. The best advice I can give you is just be as positive as possible. Unfortunately our cancer isn't popular & it seems like it's a "learn on the go" process for everyone involved. Sending you positive vibes & healing thoughts!
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I was doing scans every 4months & the spots weren't big enough to biopsy but we had an idea that they were cancer. Luckily there pretty small with the biggest being the size of a quarter. I'm super hopeful this will all get cleared up & I can go on about my life lol I have a toddler that isn't gonna slow down anytime soon so momma has to be good :) I'll definitely keep you guys posted!
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Hello Cassandra,
My name is Kim I was recently diagnosed with the same cancer but they was able to catch in time to remove it. I'm getting prepared to started the mitotane. I have a question about the medication. I'm getting ready to go back to work I'm nervous about the side effects of the medication.What type of side effects do you experience? An how long will you have to take the medication.
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Hi Kim,
Depending on the doseage you could have mild symptoms or notice a drastic change. I was originally on 2000mg/day & my body couldn't handle it, I had all the side effects & it was almost like my body went into shock because it was a big change. I had mood swings, tiredness, drowsy, major brain fog & weakness just by gping up & down stairs, having a 2yr old doesn't help but my mom job never ends lol I was lowered to 1000mg/day & it's way more tolerable. I'm going to start 1500mg/day starting the first so hopefully my body will be okay with that doseage. I'm not 100% sure how long I'll be on the meds but I'm hoping not forever. Do you know what your doseage will be? I'm also taking hydrocortisone as well not sure if your doctor will have you on that too.
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Oh wow!!! Yes they going to start me out with a small dosage 1000mg/day. Then each week they will slowly increase my dosage depending on my body. I will be taking the hydrocortisone as well.
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I think with the small doseage you might see a small change mostly in mood swings but I think that's probably a normal doseage. My doctor got a little to happy & went w/ the go big or go home mentality. Luckily I've switched doctors & now have someone whose treated someone w/ this type of cancer. I hope you adjust fine & don't feel too much of a difference w/ the medication. Keep me posted, I'd definitely be interested to see how it works for someone else. Sending you positive thoughts & well wishes :)
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I'm glad you have a different doctor that's more familiar with the cancer. I had a few appointments today I had to see a radiologist today. So I will be doing some radiation treatment as well. I do have a great team of doctors that been carefully making sure they're taking the right direction of treating me. I will definitely keep you posted. An thank you for sharing your story. I send positive thoughts to you as well and wish you well on your treatment journey.
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I had stage 2
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I had a 4 cm tumor removed off The right adrenal gland. But after they removed it, they did not put me on any medication and I feel like my whole world has been turned upside down. they never gave me a stage I guess because they caught it in time before it spread to other organs. my daughter has not been very good at explaining this cancer to me.
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4cm is bigger than what mine was on the left. I have a small nodule on the right also that hasn't changed in a year. They say its benign, but even benign nodules on the glands are kind of rare, so im skeptical about that one. Yes, it does turn your world upside down. It's all you think about.
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I will out find in a couple days how the medication will have me feeling. I know it's crazy. Did you have any symptoms before finding out?
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No. None. It was just found while scanning for something else. Only thing I really had done was had the left gland removed and 25 rounds of radiation to the tumor bed. My surgeon was so sure that it was benign even after being told that it looked suspicious for cancer. She told me we can just watch it for growth, or remove it. I chose to remove it. She said oh we see these all the time and done it laproscopic. In reality it should have been an open surgery, but they said she was the best. It's a good thing I didn't say let's just watch it because it came back as ACC stage 3. Lol. Hmm. It wouldn't have been long and it would have been stage 4. And I let them know about it also. Lol. They still said she's the best.
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I'm considered stage 4 since it left my adrenal gland & is now in my lungs. I have 6 nodules total w/ the biggest being the size of a quarter.
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I also didn't have any symptoms. I was actually pregnant & trying to find out the gender & that's how I found out I had ACC. When doing the biipsy they said it was the size of a grapefruit but after doing surgery once confirmed it was cancer it turned out that half the tumor had died off & the other half was still producing blood so it was actually half the size of a football. Luckily they were able to remove it along w/ my right adrenal gland & there was no spillage but the spots on my lungs were there just not big enough to biopsy to see if they were cancerous. I know being stage 4 isn't the greatest but I'm hopeful because we've caught them small & started treatment they'll clear up & I can go on w/ my life lol
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Oh wow. It must have been there for a while. I too am always hopeful, but I know the statistics of this cancer is not good. My wife always says I have to be positive. Yes, but I also have to be honest and face known facts . I told the doctors that I should have played the lottery. The odds of winning are better than a 1 in a million cancer. Lol.
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Oh wow!!! I know my doctor told me they still studying this cancer and they really can't say what causes it. We really have to stay positive about it.
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