Day Twelve, Cushing’s Awareness Challenge

Posted on April 12, 2012 by MaryO

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 in Day Nine when I said:

I finally started the Growth Hormone December 7, 2004.
Was the hassle and 3 year wait worth it?
Stay tuned for Day 12, April 12, 2012 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 argenine 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 argenine test is only 90 minutes now instead of 3 hours.

Wow, what a nightmare my argenine 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 home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy 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. I left messages for several of my doctors on what I should do. 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 became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. 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 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 believes 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 argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine 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.  My kidney surgeon *thinks* it would be ok to try the growth hormone again.  I’m still a little leery about this, especially where I didn’t notice that much improvement.

What to do?

 

Filed under: adrenal, Cushing's, growth hormone | Tagged: , , , , , , | 2 Comments »

Stand Up and Be Counted!

Posted on April 10, 2012 by MaryO

For all Cushies, diagnosed or not, friends and family – add your name  and whatever info you want to share to this map.  The directions are similar to those for AI, below.

Cushing’s MemberMap

If you have Adrenal Insufficiency, a friend of mine from Adrenal Insufficiency United has a similar map.  Please add your info to her map, as well.

Adrenal Insufficiency Map

Directions for the AI map:

LET’S FIND EACH OTHER! (please read the instructions)

Use ONE MARKER PER PERSON WITH AI (to ensure an accurate representation do not add yourself as a parent or family member) However, If you have lost a loved one to AI, feel free to add them just indicate it in the description box.

After navigating to the map

CLICK “ADD” on top right of map

ENTRY NAME: Initials, first name, City…any of these are fine..or just leave it blank and it will say anonymous

LOCATION: if you don’t want your address known just “click on a map location”

I put my daughter in a park near our home :o) zoom in or out to find your location.

DESCRIPTION: Age of affected, or any other description you’d like

PHOTO: not required

MARKER Addison’s is the default so make sure you look at the whole list. If you have more than one condition which causes your or your childs’ AI, just pick the one you feel is the most relevant and then feel free to add the others in the Description box.

Please do not use ADRENAL INSUFFICIENCY UNITED’S marker. Right now it’s for our main office, but we’ll add more locations/contacts in the future.

CLICK SUBMIT

After you submit, write down the url link for future edits. Then click your marker, and then again click the BLUE initials, city, or anonymous…this will open up a more detailed window to add DOB and Diagnosis info plus anything else you like. Just remember if you put any personal email it will be able to be viewed by anyone.

If you mess up don’t fret, just contact me, as the admin of the map I can fix your entry.

 

Filed under: adrenal, adrenal crisis, Cushing's, pituitary | Tagged: , , , , | Leave a comment »

Single-Incision Transperitoneal Laparoscopic Left Adrenalectomy

Posted on March 24, 2012 by MaryO

Óscar Vidal, Emiliano Astudillo, Mauro Valentini, Cesar Ginestà, Juan C. García-Valdecasas and Laureano Fernandez-Cruz

 

 

Abstract

Background  

Laparoscopic adrenalectomy via three or four trocars is a well-established procedure. This report describes the initial experience with single-incision laparoscopic surgery (SILS) using the transperitoneal approach for left adrenalectomy.

Methods

Between April 2010 and August 2011, all consecutive patients with adrenal masses, including Conn’s syndrome, Cushing’s adenoma, and nonfunctional adrenal tumors, who agreed to undergo SILS adrenalectomy were included in a prospective study. The left 2.5-cm subcostal incision was the sole point of entry. Data of patients who underwent SILS adrenalectomy were compared with those from an uncontrolled group of patients who underwent conventional laparoscopic adrenalectomy during the same study period.

Results

There were 20 patients in each study group (20 men, 20 women; mean age [SD] = 50 [6.5] years). SILS was successfully performed and none of the patients required conversion to an open procedure. In one case of SILS procedure, an additional lateral 5-mm port was needed for retraction of the kidney. The mean (SD) duration of the operation was 95 (20) min in the SILS group and 80 (8) min in the conventional laparoscopic adrenalectomy group (p = 0.052). There were no intraoperative or postoperative complications. There were no differences between the two study groups with respect to postoperative pain, number of patients who resumed oral intake within the first 24 h, final pathologic diagnosis, and length of hospital stay.

Conclusion  

SILS left adrenalectomy is a technically feasible and safe procedure in carefully selected patients. The definitive clinical, aesthetic and functional advantages of this technique require further analysis.

 

 

 

Fulltext Preview

Image of the first page of the fulltext document

 

 

From http://www.springerlink.com/content/h60075322750m0x0/

 

Filed under: adrenal, Cushing's | Tagged: , , , , , , , | Leave a comment »

Retroperitoneal Adrenal-Sparing Surgery for the Treatment of Cushing’s Syndrome Caused by Adrenocortical Adenoma: 8-Year Experience With 87 Patients

Posted on March 14, 2012 by MaryO

Hong-chao He, Jun Dai, Zhou-jun Shen, Yu Zhu, Fu-kang Sun, Yuan Shao, Rong-ming Zhang, Hao-fei Wang, Wen-bin Rui and Shan Zhong

 

Abstract

Background  

The objective of this study was to present our 8-year experience with partial adrenalectomy via the retroperitoneal approach for the treatment of Cushing’s adenoma.

Methods  

A total of 93 patients who underwent adrenal surgery for Cushing’s adenoma from March 2003 to December 2010 were enrolled in this study. Preoperative, intraoperative, and postoperative variables were reviewed from the database. Student’s t test was used to analyze the continuous data, and the χ2 test was used to analyze the categoric data. A value of p < 0.05 was considered statistically significant.

Results  

Adrenal-sparing surgery was performed in 87 cases (31 by open surgery, 56 by retroperitoneal laparoscopy). Six patients underwent open/laparoscopic total adrenalectomy because of recurrent disease or a large size. The cure rate in our series was 97.8%. Hypertension resolved in 34 of 64 patients (53.1%), diabetes in 7 of 27 patients (25.9%) and obesity in 28 of 48 patients (58.3%). One patient died during the postoperative period. The intraoperative complication rate for the open surgery group was significantly higher than that for the retroperitoneal laparoscopy group (9.1 vs. 1.7%).

Conclusions  

The retroperitoneal approach is reliable and safe for treating Cushing’s syndrome. The laparoscopic technique can decrease the prevalence of intraoperative complications. Retroperitoneal laparoscopic partial adrenalectomy can be performed with extremely low morbidity and achieves an excellent outcome, although death may occur during the postoperative period in high-risk patients. Postoperative management plays an important role in the surgical treatment of Cushing’s syndrome.

 

Jun Dai is listed as co-first author.

Fulltext Preview

Image of the first page of the fulltext document

From http://www.springerlink.com/content/034754537j7586k2/

 

Filed under: adrenal | Leave a comment »

The Adrenal Vein Sampling International Study (AVIS) for Identifying the Major Subtypes of Primary Aldosteronism

Posted on March 13, 2012 by MaryO
  1. Gian Paolo Rossi, 
  2. Marlena Barisa, 
  3. Bruno Allolio, 
  4. Richard J. Auchus, 
  5. Laurence Amar,
  6. Debbie Cohen, 
  7. Christoph Degenhart, 
  8. Jaap Deinum, 
  9. Evelyn Fischer, 
  10. Richard Gordon,
  11. Ralph Kickuth, 
  12. Gregory Kline, 
  13. Andre Lacroix, 
  14. Steven Magill, 
  15. Diego Miotto,
  16. Mitsuhide Naruse, 
  17. Tetsuo Nishikawa, 
  18. Masao Omura, 
  19. Eduardo Pimenta,
  20. Pierre-François Plouin, 
  21. Marcus Quinkler, 
  22. Martin Reincke, 
  23. Ermanno Rossi,
  24. Lars Christian Rump, 
  25. Fumitoshi Satoh, 
  26. Leo Schultze Kool, 
  27. Teresa Maria Seccia,
  28. Michael Stowasser, 
  29. Akiyo Tanabe, 
  30. Scott Trerotola, 
  31. Oliver Vonend, 
  32. Jiri Widimsky Jr.,
  33. Kwan-Dun Wu, 
  34. Vin-Cent Wu and 
  35. Achille Cesare Pessina

–Author Affiliations


  1. University of Padova (G.P.R., M.B., T.M.S., A.C.P.), Department of Medicine (DIMED) Internal Medicine 4, Padova, 35128 Italy; University Hospital Würzburg (B.A.), Department of Internal Medicine I, Endocrine and Diabetes Unit, Würzburg, 97080 Germany; University of Texas (R.J.A.), Southwestern Medical Center at Dallas, Dallas, Texas 75390; Hôpital Européen Georges Pompidou (L.A., P.-F.P.), Hypertension Unit, Paris, 75908 France; Hospital of The University of Pennsylvania (D.C.), Department of Internal Medicine, Philadelphia, Pennsylvania 19104; University Hospital Innenstadt (C.D.), Department of Clinical Radiology, Munich, 80336 Germany; Radboud University Nijmegen (J.D.), Department of Internal Medicine, Nijmegen, 6225GA Netherlands; University Hospital Innenstadt (E.F., M.R.), Department of Endocrinology, Munich, Germany; University of Queensland School of Medicine (R.G., E.P., M.S.), Greenslopes Hospital, Endocrine Hypertension Research Centre, Brisbane, 4120 Australia; University Hospital Würzburg (R.K.), Institute of Radiology, Würzburg, Germany; University of Calgary (G.K.), Foothills Medical Centre, Calgary, T2N4J8 Canada; Centre hospitalier de l’Université de Montréal (A.L.), Department of Medicine, Montreal, H2W 1T8 Canada; Medical College of Wisconsin (S.M.), Endocrinology Clinic Community Memorial Medical Commons, Menomonee Falls, Wisconsin 53051; University of Padova (D.M.), Department of Medicine (DIMED) Radiology, Padova, Italy; National Hospital Organization Kyoto Medical Center (M.N.), Department of Endocrinology Clinical Research Institute, Kyoto, 612-8555 Japan; Yokohama Rosai Hospital (T.N., M.O.), Department of Endocrinology and Metabolism, Yokohama City, 222-0036 Japan; Clinical Endocrinology (M.Q.), Charité Campus Mitte, Charité University Medicine Berlin, Berlin, 10117 Germany; Azienda Ospedaliera Santa Maria Nuova (E.R.), Department of Internal Medicine, Reggio Emilia, 42123 Italy; Department of Nephrology (L.C.R., O.V.), Heinrich-Heine-University Düsseldorf, Düsseldorf, 40225 Germany; Tohoku University Hospital (F.S.), Department of Nephrology, Endocrinology and Vascular Medicine, Sendai, 980-8574 Japan; Department of Radiology (L.S.K.), Radboud University Nijmegen Medical Center, Nijmegen, Netherlands; Institute of Clinical Endocrinology (A.T.), Tokyo Women’s Medical University, Tokyo, 162-8666 Japan; Hospital of The University of Pennsylvania (S.T.), Department of Radiology, Philadelphia, Pennsylvania; Charles University in Prague (J.W.), General Faculty Hospital, Third Department of Medicine, Prague, 12808 Czech Republic; and National Taiwan University Hospital (K.-D.W., V.-C.W.), Department of Internal Medicine, Taipei, 10048 Taiwan
  1. Address all correspondence and requests for reprints to: Prof. Gian Paolo Rossi, M.D., FACC, FAHA, Department of Medicine, Internal Medicine 4, University Hospital via Giustiniani, 2, 35126 Padova, Italy. E-mail: gianpaolo.rossi@unipd.it.

 

Abstract

Context: In patients who seek surgical cure of primary aldosteronism (PA), The Endocrine Society Guidelines recommend the use of adrenal vein sampling (AVS), which is invasive, technically challenging, difficult to interpret, and commonly held to be risky.

Objective: The aim of this study was to determine the complication rate of AVS and the ways in which it is performed and interpreted at major referral centers.

Design and Settings: The Adrenal Vein Sampling International Study is an observational, retrospective, multicenter study conducted at major referral centers for endocrine hypertension worldwide.

Participants: Eligible centers were identified from those that had published on PA and/or AVS in the last decade.

Main Outcome Measure: The protocols, interpretation, and costs of AVS were measured, as well as the rate of adrenal vein rupture and the rate of use of AVS.

Results: Twenty of 24 eligible centers from Asia, Australia, North America, and Europe participated and provided information on 2604 AVS studies over a 6-yr period. The percentage of PA patients systematically submitted to AVS was 77% (median; 19–100%, range). Thirteen of the 20 centers used sequential catheterization, and seven used bilaterally simultaneous catheterization; cosyntropin stimulation was used in 11 centers. The overall rate of adrenal vein rupture was 0.61%. It correlated directly with the number of AVS performed at a particular center (P = 0.002) and inversely with the number of AVS performed by each radiologist (P = 0.007).

Conclusions: Despite carrying a minimal risk of adrenal vein rupture and at variance with the guidelines, AVS is not used systematically at major referral centers worldwide. These findings represent an argument for defining guidelines for this clinically important but technically demanding procedure.

  • Received October 14, 2011.
  • Accepted January 31, 2012.
  • Copyright © 2012 by The Endocrine Society

From http://jcem.endojournals.org/content/early/2012/03/01/jc.2011-2830.abstract?rss=1

 

 

Filed under: adrenal | Leave a comment »

« Previous Page — Next Page »