Day 2, Cushing’s Awareness Challenge

The Seven Dwarves of Cushing's

So, these are only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.

Here are some of the many areas affected.

  • Progressive obesity and skin changes
  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
  • Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

Women with Cushing’s syndrome may experience:

  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

  • Decreased libido
  • Decreased fertility
  • Erectile dysfunction

Other signs and symptoms include:

  • Fatigue
  • Muscle weakness
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Cognitive difficulties
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!

MaryO
         MaryO

Cushing’s, Cancer and Other Serious Diseases

I was drawn to this blog post because the author mentioned that she had both Cushing’s and cancer, a kind of unusual combination.

1974 to Today: Seal it up
By Experience
I still haven’t heard what the consensus is on my aftercare: Cushing’s and Cancer. I don’t know what I will be expecting to feel like after surgery. My endocrinologist said that I should get sick after the surgery and need some kind of
1974 to Today – http://1974totoday.blogspot.com/

I don’t usually comment on blog posts but I did on this one because we seem to share so much, disease-wise.

I said

Hi, I was drawn to your blog post because I have a blog with the same name, Cushings & Cancer.

I had my Cushing’s long ago and my cancer (kidney aka renal cell carcinoma) was 3 years ago but I sure know where you’re coming for.

My surgeon contacted my endo for the amounts of steroids during surgery (they came through the IV) then post-op, they kept cutting my dose in half until I was back down to normal.
Generally, you stress-dose after surgery if you feel like you have a flu coming on. Has your endo given you Cortef or another steroid to take for emergencies like this? Sometimes, they will give you an injectible to be faster acting.

Best of luck with the cancer surgery AND your Cushing’s.
MaryO

I sure hope that this isn’t a trend, Cushies getting cancer although I know of a couple others on the boards getting cancer.

I suppose Cushing’s doesn’t make us any more immune to other diseases but it seems like it should.

Haven’t we already “done our time”?

OTOH, I have a friend with a serious cancer (aren’t they all?)  who recently learned that she has a second, unrelated, cancer.  Makes you wonder sometimes.

What other diseases have you had in addition to your Cushing’s?

Münchausen By Media

The Internet makes it so easy to develop weird and unusual diseases.  Just plop a symptom into Google and suddenly you find yourself with stomach cancer, Cushing’s or other dread diseases.

Even on TV, the ads for lawyers almost convince people they might have mesothelioma and other rare illnesses that might bring you – and them! – bundles of money if you just sue someone.

Magazine ads implore you to “ask your doctor about…” this drug or that you might or might not need.  Your doctor might just give it to you to keep you from asking.  And there’s a needless medication that brings profit to the drug company and side effects to you.

TV shows like House and Mystery Diagnosis will show you diseases you never dreamed about.

There’s a great topic on the Power Surge message boards, What’s the worst “disease or ailment” you’ve had, where the women discuss the diseases they thought that they had, based on symptoms, what they’ve seen online, in the news but not based on reality.

I’ve done it myself.  About the only time I was right was with my Cushing’s diagnosis. That one was a good call. But my thoughts of kidney cancer metastasis haven’t come true (yet, anyway!).

There’s been information online lately about Münchausen Syndrome.  Wikipedia says:

“…the affected person exaggerates or creates symptoms of illnesses in themselves or their child/children in order to gain investigation, treatment, attention, sympathy, and comfort from medical personnel. In some extremes, people suffering from Münchausen’s Syndrome are highly knowledgeable about the practice of medicine, and are able to produce symptoms that result in multiple unnecessary operations. For example, they may inject a vein with infected material, causing widespread infection of unknown origin, and as a result cause lengthy and costly medical analysis and prolonged hospital stay. The role of “patient” is a familiar and comforting one, and it fills a psychological need in people with Münchausen’s. It is distinct from hypochondriasis in that patients with Münchausen syndrome are aware that they are exaggerating, whereas sufferers of hypochondriasis believe they actually have a disease.”

I think we’ve all see this, especially online.  It’s so easy to sit in the comfort of ones home and add “just a little” to the symptoms, making it more impressive for the readers.

From A Strange Case of Münchausen By Internet:

“…When I first got online, I “met” a young woman who claimed to be a vet, and offered me all kinds of advice about my cat and my tropical fish. She got cancer, slowly declined, then died. We wanted to send flowers, and maybe attend the funeral, and got her ISP to contact her family for us. To our shock, her parents said there was no funeral. She wasn’t dead, she wasn’t even sick. At least not physically. She’d pulled this kind of “pretend death” several times before, and was in therapy, but every time life got stressful, she’d do it again.

And the Internet is the ideal place for a Munchausen sufferer. With the click of a button, you can find out all kinds of information, to help you pose as anyone you want. People don’t expect to see you in person or even talk to you except by e-mail, making deception easier. And often, mailing lists, message boards, etc., will give unqualified support to their members…”

And Media Makes Me Sick:

“…The Internet is hands-down the worst thing to ever happen to the medical world. With Web sites like WebMD, any paranoid hypochondriac like me can jump online, look for symptoms and immediately convince himself he has cancer or Cushing’s disease or non-Hodgkin’s lymphoma or any other of a million things.

WebMD allows you to find one symptom and then “helps” you by listing 15,000 things it could mean.

Oh my God. I do have a slight ache! That’s it. I must have a brain tumor. I’m not kidding, I recently scared myself into thinking I had cancer. It took a specialist, a CT scan and an ultra-sound to convince me otherwise…”

Karen found this older article at http://www.villagevoice.com/2001-06-26/news/cybersickness/1

“…Over nearly three years, from 1998 to 2000, a woman—let’s call her Anna—posted to an online support group for people with mental illness. To the larger circle of readers, she acted mostly as friendly counselor. But to a select few, she e-mailed stories of escalating catastrophes. Her husband and two children had perished in a plane crash, she wrote. As a kid, her father had molested her, and she had suffered multiple personality disorder. Finally, she told her trusted—and trusting—confidants that she had just been diagnosed with leukemia.

Gwen Grabb, a psychotherapy intern and mother of three in Los Angeles, says the group believed Anna because she took on the role of helping others, revealing her own difficulties much later, and to an intimate audience. “She was very bright,” recalls Grabb. “She was very supportive and kind. One day, she started telling me about `the crash,’ what they found in the black box, how you could hear her daughter screaming. I had known her a year. I believed her.”

But as the tales became more elaborate and grotesque, Grabb grew suspicious. Along with another group member—Pam Cohen, a bereavement counselor in the Mid-Atlantic region—she did some research and discovered Anna was making it up. It was a shock to all, but worse than that to Cohen. “It is like an emotional rape,” she says. People may have been upset over the online life and fatal cancer of the fictional Kaycee, whose creator admitted last month she’d invented the high school character for expressive purposes. But that was geared to a general audience, however easily suckered. Pretenders like Anna hurt a much more vulnerable group—folks who may be seriously ill and are seeking help…”

So – use caution and remember that not everything you read will happen to you!

Cancer risk elevated for adults after Cushing’s syndrome diagnosis

I certainly know this to be true :(  I’m an 18 year survivor of yet another disease that I shouldn’t have gotten:  kidney cancer.

 

Key takeaways:

  • Adults with Cushing’s syndrome have a 78% higher risk for any cancer compared with controls.
  • Cushing’s syndrome is tied to a higher risk for genitourinary cancers, thyroid cancer and adrenocortical carcinoma.

Adults diagnosed with endogenous Cushing’s syndrome have a higher risk for developing cancer compared with controls without the condition, according to data published in the European Journal of Endocrinology.

In a retrospective analysis of data from the Clalit Health Services’ electronic health record database in Israel, 19% of adults with endogenous Cushing’s syndrome were diagnosed with cancer during a median follow-up of 14.7 years compared with 11.1% of adults without Cushing’s syndrome (HR = 1.78; 95% CI, 1.44-2.2).

Adults with Cushing's syndrome have an increased risk for any type of cancer vs. controls. Data were derived from Rudman Y, et al. Eur J Endocrinol. 2024;doi:10.1093/ejendo/lvae098.

Adults diagnosed with Cushing’s syndrome also had a greater risk for genitourinary cancers (HR = 1.63; 95% CI, 1.02-2.61), thyroid cancer (HR = 3.68; 95% CI, 1.68-8.01) and adrenocortical carcinoma (HR = 24.72; 95% CI, 2.89-211.56) than controls.

Amit Akirov

“Our study is the first to demonstrate an elevated cancer risk in patients with Cushing’s syndrome, highlighting the importance of raising awareness and the need to establish guideline recommendations for cancer screening in this population, especially for genitourinary, thyroid and gynecological cancers,” Amit Akirov, MD, associate professor in the faculty of medicine at Tel Aviv University and in the Endocrine Institute at Rabin Medical Center in Petach-Tikva, Israel, told Healio.

Akirov and colleagues obtained health record data for 609 adults diagnosed with Cushing’s syndrome from 2000 to June 2023 (mean age at diagnosis, 48.1 years; 65% women; 41.2% with Cushing’s disease, 32.8% with adrenal Cushing’s syndrome; 25.9% with undetermined etiology). Those with Cushing’s syndrome were matched, 1:5, by age, sex, socioeconomic status and BMI with a control group of 3,018 adults who were never tested for hypercortisolism. The outcome of interest was the first diagnosis of any malignant cancer after Cushing’s syndrome diagnosis with the except of nonmelanoma skin cancer.

The increased risk for cancer among those with Cushing’s syndrome was observed both among adults younger than 60 years (HR = 2.15; 95% CI, 1.63-2.84) and those aged 60 years and older (HR = 1.42; 95% CI, 1.02-1.98). Adults with obesity and Cushing’s syndrome had a higher risk for cancer than those with obesity and no hypercortisolism (HR = 2.21; 95% CI, 1.44-3.4). No difference in cancer risk was seen among adults without obesity.

Akirov told Healio that the researchers suspected the presence of Cushing’s syndrome could increase cancer risk prior to conducting the study.

“While some studies suggest that excess growth hormone or prolactin may be linked to an increased cancer risk, this association had not been previously examined in patients with Cushing’s syndrome,” Akirov said in an interview. “However, we hypothesized that elevated cortisol levels could provide a foundation for tumor development.”

Adults with Cushing’s disease had a higher risk for any cancer (HR = 1.65; 95% CI, 1.15-2.36) and gynecological cancers (HR = 3.65; 95% CI, 1.16-11.52) than matched controls. Those with adrenal Cushing’s syndrome had an increased risk for any malignancy (HR = 2.36; 95% CI, 1.7-3.29), lung cancer (HR = 3.06; 95% CI, 1.11-8.42), genitourinary cancers (HR = 2.42; 95% CI, 1.22-4.82), thyroid cancer (HR = 4.97; 95% CI, 1.24-19.87) and adrenocortical carcinoma diagnosed more than 5 years after Cushing’s syndrome diagnosis (HR = 19.73; 95% CI, 2.21-176.5) than controls.

More research is needed to confirm the findings, further assess which cancers adults with Cushing’s syndrome are at the greatest risk for being diagnosed with and whether there are any predictors for cancer in Cushing’s syndrome, according to Akirov.

For more information:

Amit Akirov, MD, can be reached at amit.akirov@gmail.com.

Published by:endocrine today logo
Sources/Disclosures

Disclosures: Akirov reports receiving occasional scientific fees for consulting and serving on advisory board for CTS Pharma, Medison and Neopharm. Please see the study for all other authors’ relevant financial disclosures.

 

Day 15, Cushing’s Awareness Challenge

Today’s Cushing’s Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing’s. I think it is, either directly or indirectly.

I alluded to this a couple days ago when I said:

I finally started the Growth Hormone December 7, 2004.
Was the hassle and 3 year wait worth it?
Stay tuned for tomorrow, April 15, 2016 when all will be revealed.

So, as I said, I started Growth Hormone for my panhypopituitarism on December 7, 2004.  I took it for a while but never really felt any better, no more energy, no weight loss.  Sigh.

April 14 2006 I went back to the endo and found out that the arginine test that was done in 2004 was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I went off GH again for 2 weeks, then was retested. The “good news” was that the arginine test is only 90 minutes now instead of 3 hours.

Wow, what a nightmare my arginine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go right home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy he was having and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps.

There were signs all over that no cellphones were allowed so I sat in the restroom (I had to be in there a lot, anyway!) and I left messages for several of my doctors on what I should do. It was Friday afternoon and most of them were gone 😦  I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and instantly became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. At first, they thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My new “instant doctor” felt that he wasn’t up to the challenge of my surgery, so he called in someone else.  My next new “instant doctor” came to see me in the ER in the middle of the night.  He patted my hand, like a loving grandfather might and said “At least you won’t have to do chemotherapy”.  And I felt so reassured.

It wasn’t until later, much after my surgery, that I found out that there was no chemo yet that worked for my cancer.  I was so thankful for the way he told me.  I would have really freaked out if he’d said that nothing they had was strong enough!

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believed he got it all.

He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the arginine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The arginine test showed that my IGF is still low but due to the kidney cancer I couldn’t take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

So… either Growth Hormone helped my cancer grow or testing for it revealed a cancer I might not have learned about until later.

My five years are up now.  When I was 10 years free of this cancer my kidney surgeon *thought* it would be ok to try the growth hormone again.  I was a little leery about this, especially where I didn’t notice that much improvement.

What to do?

BTW, I decided to…