Adrenal Gland Tumor

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Adrenal Gland Tumor
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    Community Voices

    You Are Invited!

    For the first time ever, I am premiering a video. This video is more important than I can put into words! You, my sweet friend are invited to my Pheochromocytoma Attacks and More watch party on YouTube: Monday May 17th at 10 am est. Be sure to bring a friend and share the link!!! Don’t forget your party gear: a drink, fun snack, and cute and comfy outfit.

    An amazing YouTube friend (subscriber), recently asked what happens during a Pheochromocytoma attack? I wanted to sit down to explain a little more, what is a Pheochromocytoma? I also talk a bit about the Adrenal glands and Adrenal Insufficiency. What is an attack? I go into as many symptoms as I can with as much detail as possible (with my foggy brain). There are tons of resources in the description for curious minds, care givers, patients, or anyone with a heartbeat.

    #Awareness #Cancer #RareDisease #adrenalgland #adrenalinsufficency #addisions #ButYouDontLookSick #InvisibleIllness #RareCancer #MedicallyComplex #MentalHealth #MentalIllness #mystory #symptoms #ChronicPain #attacks #Pheochromocytoma #pheo #NETCancer #NeuroendocrineTumor #Tumors #Pain #HighBloodPressure #AdrenalGlandCancer #AdrenalGlandTumor #Caregiver #Education #notalone #Hope #ChronicallyHopeful

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    Community Voices

    Right Adrenal Gland Tumor is 2cc Doc said not to do anything until 5cc. Recent MRI start of tumor on left. I'm Diabetic 1, RA, Pemphegoid,PTSD. Ideas?

    2 people are talking about this
    Community Voices

    My pain is off the charts bad for over three weeks weeks now. No doctors will see me and my meds are not helping what do you do? Drs cx all my appts

    I understand medical staff at hospitals are overrun with covid19 but why can’t anyone else get help too? I had 19 lab orders done back in feb for autonomic disorders doctor and over half came back abnormal(I get lab results through the labs web site too) and doctors office called today to say everything was basically normal and doctor didn’t need to see me..... when I got the lab results myself two weeks ago and researched what they meant all the tests that were abnormal results were either high or low and the doctor was looking for it to be the opposite of what it was. Like one test said normal is 25-30 my results was 14 but he was looking for a result that was above 30 to indicate possible tumor but when result is low everywhere says either the lab performed the test improperly or there is a need for further testing. I told him the lab tech was ill prepared and asking via text to her supervisor how to run all the tests ordered. Why not perform the tests at a different lab or tell me they were inclusive but to say they were “normal” when I know they were not is a lie. I’m
    So tired of doctors not seeming to care.... just keep passing me on to another doctor cause they can’t figure it out and in the mean time I’m laying here unable to walk most days and in so much pain I just want to die. I have my first grandchild being born in July and I’d really like to know him but what kind of grandma can I be lying here in bed and crying in pain all the time? My known diagnosises are
    CRPS, Addison’s disease and Adhesive Arachnoiditis along with hashimotos thyroid and high cholesterol and now I’m obese since starting steroids. I have right sided face pain with stroke like symptoms and excessively high blood pressure(190s/100+) with extreme drops to 70/40 in the same day and then back up again. They say it’s unrelated to crow but no clue what it could be. This doctor thought adrenal tumor but all lab work came back as opposites for tumor so what can that mean? According to this doctor that means I’m normal? Lol I’ve never been called normal.... #CRPS #autonomicdisorders #AdhesiveArachnoiditis #AddisonsDisease #HighBloodPressure #Lowbloodpressure #needanawers #whenwilldoctorscareagain

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    Community Voices

    Recovery from Cushing's syndrome

    I had Cushing's syndrome and had my R adrenal gland removed about 5 years ago. I was told by my doctor that I no longer had the disease.  It was hell to go through. I was so heavy I didn't recognize myself in a mirror.  Im still 30 lbs overweight but have started exercising and eating right.  

         It does get better after surgery. I was lucky that I live close to Johns Hopkins and they took me right away after I figured out that I had Cushing's. My doctor once told me that I had an adrenal gland tumor and not to worry about it. I was told I was making up symptoms.

         One doctor believed I was self harming because all of the bruises and rash. Especially my forearms. I called him after I got the diagnosis and he got really nervous. At this point I was fuming that no one believed my symptoms. I pushed to get the right treatment. I called Johns Hopkins after I remembered the doc telling me not to worry about the adrenal gland tumor. I went on line under adrenal gland tumor and found Cushing's syndrome. I had all the symptoms.

    Needless to say I was in terrible pain and couldn't sit or walk very far. I was using a walker to get around. I had difficulty driving, broke a few bones including a vertebra. I had to have back surgery because of this. I never lost hope. I don't know how I got through. But I did

    There is life after Cushing's syndrome

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    Community Voices

    [Revised Version] Two Years Undiagnosed (3/3)

    #Undiagnosed #ChronicIllness
    Here are some things suggested I test for/rule out, either by my own logic, or a person from an online forum or community. I take it with a grain of salt but it’s good to make a list
    - Endocrinologist: Diabetes Insipidus, pheochromocytoma, adrenal tumor (adenoma), hyperaldosteronism, Pituitary Gland tumor/dysfunction
    - Genetic: Amyloidosis, Sarcoidosis, Scolederma (G-GMA sister had it), genetic disease sweeping
    - Dystautonomia
    - hEds, etc
    - retesting Lyme, even though I’m adamant it’s not that and I don’t trust third party testers or the CDC, soooo.
    - retesting inflammation markers, although they were normal last time

    Let me know what you think! Again, please read all of this to get the full story.

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    Community Voices
    Community Voices


    Community Voices
    Erin Huizen

    Things Not to Say to Someone With Terminal Cancer

    ​I am a 32-year-old wife and mother who was diagnosed with stage 4 adrenal cancer in 2015. This means I am terminal, and that likely every time I see someone I haven’t seen for a week or more, I look worse to them. As in skinnier, weaker, more tired, etc. This list is meant as a peek into my perspective to help make the remaining time my loved ones and I have together as meaningful as possible. The list is also meant to be my opinion only. I don’t claim to know how others with disease feel about the things people say to them, but if others in my similar situation read this article and find they relate, I ask they leave comments below to let me and others know this is more than just an individual experience. 1. “How are you doing?/How’s your health?” This a question I get across the board, from nearly everyone I see. It definitely has its place as a question from my caregivers who need to know how I’m doing day-to-day, and from close friends and family who are deeply concerned with my health and well-being. The other group of people who ask me questions regarding my health are the doctors and nurses I see on a weekly basis, sometimes more, that I have to describe my every bowel movement to. To state the obvious, I find no enjoyment in these visits. That means questions like these, about my health, aren’t something I like talking about and it takes a lot of time and effort for me to explain. It also means when visitors come and ask, “How’s your health?” I know it’s because they care, but I also feel at a loss of how to answer. I’m usually unsure about how much they know about stage 4 adrenal cancer (which for 99.99 percent of the general population is about the same as they know about the eating habits of Australian stick bugs), and how much the question is asked out of really wanting to know or of wanting to be polite. Either way, I don’t want to be dismissive of questions, but there are some days my only reply has been, “Fine,” or “I’ve been better,” and I feel guilty for not expounding more. Instead of asking for a health update from me, try asking one of my caregivers. Or if the question about my health is to show me concern, then it might be best to steal clear of this question because I really, really, really, really hate talking about my bowels unless I have to. 2. “So… what do you think about Trump?” I love to sit and talk, but have found it increasingly tiring to do so when conversations turn to politics, personal drama (my own and yours), or arguing. I find these types of conversations tiring as it is, so when I am 5 percent of my normal self and exhausted, I definitely don’t have energy to talk about charged subjects. It’s nice and actually gives me energy when people come over when I’m home bound and keep conversation low-key. Such as sharing memories we had together, interesting new things going on in their life, etc. And to any questions along the lines of, “So…what do you think about Trump?” all I have to say is, “No comment.” 3. “Give me a hug!” As I said before, I am at about 5 percent of my normal self, and usually I would go right for the hug and squeeze until my face turned blue. Now, however, any hug or attempt to touch me in anyway sends my body into a quiet panic. If I reject someone, it’s never personal or because I don’t want to touch them, it’s because my whole body hurts and I can’t risk someone hugging me too hard or too awkwardly and causing me unnecessary pain. Also, if I have to reject someone, it’s nice if they respect my situation and stop making comments about it. I realize it stinks to be rejected for a hug, but it’s not personal, really. Instead of going in for a hug, let me feel safe and in control by waiting for me to initiate physical contact. Additionally, soft and gentle touches to my hand and shoulder are a safe and welcome way to show affection. 4. “I hate seeing you like this/I’m so sorry.” I appreciate being able to cry about my situation to loved ones and counsellors in order to vent my anger and process what I’m going through. I also want to be a shoulder for my loved ones to cry on and to share their grief about anything in the world, as long as it’s not about me. I am here for my loved ones, but I ask that no one grieve about me to me. There is something called the “Ring Theory” of kvetching that ever since hearing about it has changed my life by helping me to set healthier boundaries. The basic premise of the Ring Theory is to put the aggrieved or afflicted in the situation, in this case, me, at the center of the circle, then closest to suffer, my husband, mother and father, are the first ring outside the center and so on all the way to the lookie-loos (people who don’t know or care about me, but are interested in my disease and/or dramatic life situation). The rule is that all dumping and complaining moves only from the center of the circle outward, and all comfort moves from the outside in. Any complaining, grieving, crying, etc. that moves into the center is against the rule because it damages those relationships and puts unnecessary stress on the afflicted. This rule also helps ensure that I’m not the one comforting people, but that I and my close caregivers are on the receiving end of comfort and care. 5. “Let me know if you ever need anything.” Similar to how the Ring Theory works, I don’t think the afflicted person should ever be asked directly what they need, as they should be focused on resting and getting better, not on reaching out for help. Ninety-nine percent of my friends and family end their phone calls, texts and emails with the request that I let them know if I need any thing. This statement is well-meaning enough, but after hearing it the hundredth time over, it has started to frustrate me. I’ve tried imagining what it would look like for me to actually take someone up on this offer. For example, calling Jenny, a friend from college that lives in Oregon, out of the blue one day and saying, “Hi, remember when you said to let you know if I need anything? Well, I am too tired to make dinner tonight so could you help take care of that?” I would never do that. It’s simply unrealistic and would probably be more trouble than just making spaghetti myself. Therefore, if you think about it, telling someone in my position to let them know if I need anything takes the responsibility off of them to reach out to me anymore, and in a way relieves them from the burden of having to actually do anything for me. It also puts the responsibility on me then to reach out for help, even though I don’t have the strength nor energy to do so. There have been month or more long stretches where I have been completely isolated and alone, but too exhausted to try to initiate a phone call or text. It’s during these times I wished my friends and family would reach out to me. Instead of saying this well-meaning but unrealistic statement to a loved one in need, call their caregivers to see what ways you can be of help. The caregivers will have no problem finding something for you to actually do such as sending a care package, calling me to say “hi,” bringing over a family meal, etc. Or if calling a caregiver seems like too much, a simple card in the mail telling me you’re thinking about me can be very powerful and give encouragement and light where there is only darkness. 6. “My coworker’s cousin has non-Hodgkin’s lymphoma…” Receiving a cancer diagnosis (along with an estimated one out of every two male and one of every three female Americans), I did not suddenly become interested in cancer nor a cancer expert. In other words, I’m neither interested in your second cousin’s pancreatic cancer, nor do I know anything about pancreatic cancer. Personally, as a cancer patient, the last thing I want to talk about is cancer. Similar to how I don’t wish to discuss specifics of my health unless I have to, I also don’t want to talk about cancer and disease unless absolutely necessary. There are are thousands of types of cancers out there, each one affecting each person uniquely, so it is also unrealistic to think I would have knowledge of anything outside my own rare disease. It’s like expecting someone who just got a their first golden retriever puppy to be able to discuss the controversial breeding practices of the American bulldog. 7. “You’re so brave and strong.” As I said, one out of every two to three Americans will get cancer at some point in their life, and each one of these millions of people will battle (or not battle) cancer in their own way. And whatever path they choose is the right one. Not because they are strong or brave, but because they have no choice. Since cancer is not a choice, it seems unnecessary to me to praise a cancer patient’s reaction to their disease. Often their reaction arises from their circumstances. For example, I may appear strong and brave to others because I underwent chemo, radiation, etc. But others in my similar situation might have chosen alternative treatments or no treatment at all. Does that make them weak? As I said before, there is no right or wrong, brave or timid, strong or weak choice when it comes to cancer and disease. Instead of praising someone for how they chose to approach their disease, praise them for things relevant to them such as a new haircut or a pretty sweater they knitted. These sorts of compliments make the receiver feel seen and loved, while complimenting someone’s strength may make them feel like they can’t show weakness or like their disease is what defines them now. In the end, us cancer patients and our loved ones are all trying our best to understand and support one another. My hope is that by reading this, we all might gain a deeper understanding of one another and how best to cope with this wretched disease.