Day Twenty, Cushing's Awareness Challenge

This is one of the suggestions from the Cushing's Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy.  I've said it a thousand times - you know your own body better than any doctor will.  Most doctors have never seen a Cushing's patient, few ever will in the future.

If you believe you have Cushing's (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.

This is your life, your one and only shot (no pun intended!) at it.  Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online  and found a medical treatment that even his own doctors didn't know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

 

Cushing's and Cancer - the Reality of it all

This post is by Judy, a long-time message board member who is in the middle of Cushing's patients.  Both children and her ex-husband have dealt with Cushing's.  Judy is a Cushie-Blogger.

She posted this on her blog at http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html

Okay, I'm probably ready to get politically incorrect here. Oh well.
It seems that at least once a day, sometimes many times a day,I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live. Repost.......

I have no doubt that is true. I have known several cancer patients & it is a real struggle and sometimes the outcome isn't good (understatement).

Now here is the *but* & my own little personal rant.

A Cushing's patient has many wishes.
1. Finding a doctor that believes they can actually be sick, not just fat & depressed (which happen to be symptoms).
2. Having friends & family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn't accomplish something that day.
4.Being able to find an understanding doctor that isn't halfway across (or clear across) the country. The same can be said of finding surgeons.
5. Wanting their mind to be clear enough that they can keep up with their job & their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn't feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn't have so much muscle & bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.

This list could go on & on. The really sad part is that there were times I wished my family had cancer. Getting a dx would of (usually) been so much easier. Cancer doesn't usually affect every system in the body. If you get a cure from cancer you aren't usually left with permanent damage to random body systems.

Statistics say that Cushing's is rare. I know it's not. As the Cushie community says - it's just rarely diagnosed. Most people think they don't know anyone with Cushing's. Most people would be wrong. They just don't know a diagnosed Cushing's patient.

That overweight woman in front of you in the checkout line? The one that has terrible mood swings? She might have Cushing's. The coworker that suddenly can barely do her job because she is so exhausted and has terrible brain fog? She might also have Cushing's. You know that girl at school that now has arms so hairy it looks like fur? You know, the one that also smells funky sometimes? Yeah, she probably has Cushing's. You laugh at her but you know what? This disease doesn't discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day.
As with the list of *wishes* I could go on & on because Cushing's truly is the disease that keeps on giving & giving & giving. Even after a cure (relative term) it still keeps on giving.

As a wonderful neurosurgeon has said "Cushing's kills." It just does it at a very slow, painful pace.

MaryO'Note:

This is fantastic, Judy. Thanks for saying it!

I've often seen that stupid FB post and haven't reposted it.

I am both a Cushing's and a cancer survivor. For me, the cancer was easier to deal with.

I have been dealing with Cushing's and the after-effects since the early 1980's.

All I'm left with after my cancer is a scar and some bad memories.

I think Sarah's death got lots of us thinking. We've seen so many unnecessary Cushing's deaths and it just breaks my heart.

Judy, may I use this as a guest post on my Cushing's and Cancer blog? It's perfect!

Addison's Disease – Will Your Insurance Cover the Price of Therapy?

Addison's disease was first described by Dr. Thomas Addison, whom the disease is called after, in 1849. Also known as adrenal insufficiency, Addison's is a malfunction of the adrenal glands which causes the glands for fail to supply sufficient of the hormones cortisol, aldosterone, or both. It's an uncommon condition that is typically brought on by harm to the gland by an autoimmune dysfunction or an infection. It is a considerably silent disease in that the signs progress so slowly that the particular person does not realize they've the disease till they expertise a very stressful scenario and the adrenal gland fails to supply sufficient hormones to help the physique deal with it.

 

The primary remedy of Addison's disease is through medication. Patients are prescribed hormone replacements resembling hydrocortisone or prednisone for cortisol insufficiency and a mineralocorticoid for aldosterone insufficiency. Depending on the underlying explanation for the disease, secondary remedy may be necessary. For example, autoimmune issues are the principle explanation for Addison's. Therefore, your doctor could prescribe additional medications and treatments to handle that downside as well. Cancer of the adrenal gland is also a explanation for this disease and you may need surgery and chemotherapy to do away with the cancer.

 

Insurance firms will probably cowl the cost of your medical care since remedy typically entails doctor's visits and medication. You will most likely be scheduling common appointments along with your doctor, so when you find yourself searching for health care insurance coverage be sure to evaluate the cost of copays for office visits. Additionally, you will want to find a plan that may pay some or the entire cost of your prescription drugs since there is no cure for Addison's disease and you will be on treatment for the rest of your life. Having your insurance coverage firm decide up the tab will save you money over the lengthy term.

 

Addison's disease is classed as a preexisting condition. Therefore, if you change insurance policy you may be subject to a ready period or end up paying increased premiums to your plan. To help you discover one of the best deal within the shortest amount of time, use a medical health insurance quote web site to get insurance coverage quotes from a number of providers. You will be able to do a facet by facet comparability of the completely different plans supplied which is able to make it simple to see how a lot you will be paying out of pocket to deal with your illness.

 

Untreated Addison's is potentially fatal but, with the correct medical care, you may reside a protracted and healthy life.

 

From http://www.pillowtalkmedia.com/uncategorized/addisons-disease-will-your-insurance-cover-the-price-of-therapy/

Laparoscopic Resection is Inappropriate in Patients with Known or Suspected Adrenocortical Carcinoma

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Laparoscopic Resection is Inappropriate in Patients with Known or Suspected Adrenocortical Carcinoma

B. S. Miller¹ , J. B. Ammori¹, P. G. Gauger¹, J. T. Broome³, G. D. Hammer² and G. M. Doherty¹

(1)	Division of Endocrine Surgery, University of Michigan, 2920F Taubman Center, 1500 E. Medical Center Drive, Ann Arbor, MI 48109, USA

(2)	Division of Metabolism, Endocrinology, and Diabetes, University of Michigan, Ann Arbor, MI, USA

(3)	Division of Surgical Oncology and Endocrine Surgery, Vanderbilt University, Nashville, TN, USA

Published online: 7 April 2010

Abstract

Background

Complete surgical resection is the mainstay of treatment for patients with adrenocortical cancer (ACC). Use of laparoscopy has been questioned in patients with ACC. This study compares the outcomes of patients undergoing laparoscopic versus open resection (OR) for ACC.

 

Methods

A retrospective review (2003–2008) of patients with ACC was performed. Data were collected for demographics, operative and pathologic data, adjuvant therapy, and outcome. Chi-square analysis was performed.

 

Results

Eighty-eight patients (66% women; median age, 47 (range, 18–81) years) were identified. Seventeen patients underwent laparoscopic adrenalectomy (LA). Median tumor size of those who underwent LA was 7.0 (range, 4–14) cm versus 12.3 (range, 5–27) cm for OR. Recurrent disease in the laparoscopic group occurred in 63% versus 65% in the open group. Mean time to first recurrence for those who underwent LA was 9.6 months (±14) versus 19.2 months (±37.5) in the open group (p < 0.005). Fifty percent of patients who underwent LA had positive margins or notation of intraoperative tumor spill versus 18% of those who underwent OR (p = 0.01). Local recurrence occurred in 25% of the laparoscopic group versus 20% in the open group (p = 0.23). Mean follow-up was 36.5 months (±43.6).

 

Conclusions

ACC continues to be a deadly disease, and little to no progress has been made from a treatment standpoint in the past 20 years. Careful and complete surgical resection is of the utmost importance. Although feasible in many cases and tempting, laparoscopic resection should not be attempted in patients with tumors suspicious for or known to be adrenocortical carcinoma.

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B. S. Miller Email: barbram@umich.edu

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Laparoscopic management of adrenal lesions larger than 5 cm in diameter - Abstract

Monday, 11 January 2010

Muljibhai Patel Urological Hospital, Nadiad, Gujarat, India.

Laparoscopic adrenalectomy remains a controversial procedure for large tumors. The incidence of adrenocortical carcinoma increases and technical difficulty of adrenalectomy increases as the size increases. We examined the outcome and complications of laparoscopic adrenalectomy for such lesions.

 

Twenty-nine patients underwent laparoscopic adrenalectomy, of whom 19 had tumors larger than 5 cm in diameter, having a median tumor size of 7.0 cm. They were compared with patients whose adrenal tumors were smaller than 5 cm.

 

Patients with small tumors (< 5 cm) had a significantly shorter median operative time of 90 minutes as compared to 145 minutes in those with large tumors (> 5 cm). There was no significant difference in the median hemoglobin drop (1.05 g/dL versus 1.30 g/dL), time for starting oral intake (24 hours in both groups) or hospital stay (3.5 days versus 4.0 days) between patients with small and large tumors, respectively. There were no intra-operative complications except for 1 incidence of supraventricular tachycardia in a patient with a large pheochromocytoma. There were no major complications seen in any of the patients and no open conversions. Histopathology of large tumors revealed 16 benign tumors (8 pheochromocytomas, 4 adenomas, 2 ganglioneuromas, 1 pseudocyst, and 1 myelolipoma) and 3 malignancies, of which 1 was primary adrenocortical carcinoma and 2 were metastatic renal cell carcinoma.

 

In experienced hands, laparoscopic adrenalectomy is safe and feasible for large functioning adrenal tumors. Large adrenal tumors suspicious of harboring malignancy with no peri-adrenal involvement can be tackled laparoscopically.

 

Written by:
Sharma R, Ganpule A, Veeramani M, Sabnis RB, Desai M.   Are you the author?

 

Reference:
Urol J. 2009 Fall;6(4):254-9.

PubMed Abstract
PMID:20027553

UroToday.com Adrenal and Retroperitoneum Section

 

From http://www.urotoday.com/57/browse_categories/adrenal_and_retroperitoneum/laparoscopic_management_
of_adrenal_lesions_larger_than_5_cm_in_diameter__abstract01112010.html