Miss Diagnosis: What's In A Name?

Sunday, May 3, 2009

What's In A Name?

Cancer.I've thought about this a lot lately. Our last two visits to doctors were both to see surgeons who primarily treat cancer patients. Their offices were filled with a collection of bald-headed chemo patients and those wearing masks to prevent infection. It is truly heartbreaking. While Alex and I were saddened to see this it also opened her eyes. "I'm really sick, aren't I?" It's funny; you tell someone Cushing's Disease, and you might as well have said you have a headache. You tell them cancer and the world changes. I'm not diminishing cancer by any means, but it would be nice to have a "label" that would help people understand the seriousness of this disease. My mom had cancer, my dad had cancer, even Brian had skin cancer, but they got a diagnosis, got treatment and were able to go on with life.

I don't think it's completely accurate but some text books state that the survival rate for Cushing's is 50% at 5 years if untreated. Add to that that the typical patient doesn't get properly diagnosed for 7 years. Nice discrepancy, huh? I'm sure it sounds dramatic but some days I'm really scared we won't make it to the finish line. Surgery doesn't scare me, the disease does.

2 comments:

UnknownMay 5, 2009 at 7:04 AM
Hi Rene, found your blog after a morning on cushings-help.com I had to post a comment on this latest entry... I have often felt the same about the Cushings diagnosis and cancer and I too have had two close family members diagnosed with cancer one is at 5 yrs post and my fa.passed from it 15 years ago so I know what you mean. Why are we poked prodded scanned and misdiagnosed so frequently (it can be just as deadly! it takes away quality of life! Causes enormous loss of $$$.
Why do we have to PROVE our illness. A tumor is found get it out it is obviously causing issues ya know what I mean. Anyways I could get on a major soap box but I will spare you just wanted to let you know Im right there with you! I wish you and Alex all the best I have a 14 yr old DD and can only imagine your struggles You will be in my prayers and thoughts all the best! lisa (monalisa1966)
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Hi, I'm ReneMay 5, 2009 at 8:06 AM
Lisa,
Thank you for stopping by and commenting.We aren't the only ones who feel this way!
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Transphenoidal Pituitary Surgery- From the UCSF web site

What happens during surgery?
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', meaning 'to cross or pass through', and 'sphenoid', the name of the cavity (the sphenoid sinus) that is passed through to reach the pituitary gland. Newer techniques and improvements in technology now allow removal of these tumors without the need for an incision under the lip or within the nostril. The surgeon begins the approach by entering through the nostril on one side. The surgeon uses a brilliant fiber optic light to illuminate the internal anatomy, a microscope to magnify the area of surgery to 12 times the actual size, and very tiny microsurgical instruments especially designed for this particular operation. The surgeon guides the surgical instrument into the nasal cavity and an opening is made in the sphenoid bone. The sphenoid sinus is entered, and then an opening is made in the wall of the sella turcica to expose the pituitary gland. The adenoma can be readily distinguished from the normal pituitary gland tissue and is removed without removing the normal gland. After the surgeon removes all the tumor tissue, the small cavity that is left is treated with alcohol to destroy any tumor cells that may remain. This cavity is then sealed, sometimes with a piece of fat that the surgeon removes from the patient's abdomen. The surgeon then applies a biological 'glue' that helps seal the pituitary area from the nose and promotes natural healing. No nasal packs are used with this approach.