Getting Started

A few months ago I found out that I had 2 CT scans 9 years apart that indicated that I have a nodule on my left adrenal gland. The doctor who told me that didn't want to do anything with that bit of information. The nodule hadn't changed in 9 years and she felt it was unimportant. I wasn't so sure.
I decided that it would be wise to visit an endocrinologist to get a second opinion. The endocrinologist had seen the scans and immediately on entering the room starting talking about Cushing's Syndrome. So I have begun testing to see if I do have the condition. 
Like a fool everyone else on the internet I couldn't let this one go. I found a National Institute of Health article about lingering problems after chemotherapy and radiation treatment for cancer. This is what I wrote about it on my blog http://thepinkteeshirt.blogspot.com.
"Hematogenous metastasis to the adrenal glands is common, exceeded in frequency only by hematogenous metastasis to the lung, liver, and bone.69 Autopsies have documented that 9% to 27% of patients who died from malignant illness had adrenal metastasis, with bilateral involvement in one-half to two-thirds of patients with adrenal metastasis."

The presence of adrenal metastasis may have important implications for diagnostic and therapeutic planning. When patients with cancer have an adrenal mass but no evidence of metastasis elsewhere, it is vital to determine whether this mass represents a metastatic deposit or a separate, unrelated adrenal lesion."


"Radiation-induced thyroid nodules are common sequelae of head and neck cancer treatments and are also found in breast cancer patients whose radiation field included the lower neck. The frequency of palpable abnormalities increases with time after radiation, but it is not related to radiation dose, serum TSH levels, or prior lymphangiography. The presence of multiple small follicular adenomas and marked interstitial fibrosis in these patients was believed to be the result of prior radiation exposure."


"Cyclophosphamide therapy has been associated with hyponatremia and SIADH. Autopsy findings in a case of fatal hyponatremia induced by cyclophosphamide (1,800 mg/m2) suggest that cyclophosphamide directly affects the hypothalamus.90 Those findings included infundibular necrosis, decreased intraaxonal secretory granules, and depletion of posterior pituitary vasopressin. Patients treated with lower doses of cyclophosphamide also develop hyponatremia, hypotonicity, urinary hypertonicity, and increased plasma vasopressin levels. Damage to the renal tubules and resulting defects in salt and water transport may be the major cause of hyponatremia associated with low-dose cyclophosphamide therapy"


"Drug-induced renal salt wasting or tumor-induced salt wasting (mediated by atrial natriuretic peptide)86 can also cause hyponatremia, hypoosmolality, elevated urinary sodium, and urinary osmolality. These SIADH-like syndromes are difficult to distinguish from SIADH when signs and symptoms of fluid volume depletion are subtle or absent. Nonetheless, there are convincing reports that provide evidence of chemotherapy-induced hypothalamic or pituitary damage in the context of SIADH."


                                     From: http://www.ncbi.nlm.nih.gov/books/NBK13775/


If you have read this far, I appreciate your patience. All of these discuss problems that I have discussed here over many years. Problems with electrolyte regulation. Problems with hypothyroidism, problems with continuity of care. The continuity of care for cancer patients is a huge concern. I had an adrenal mass that showed up shortly after the cessation of my active cancer care. No one investigated it's relevance to cancer. The doctor who found it told me the CT scan was negative and showed nothing unusual. He was an emergency care doctor. 


The internists who have treated my thyroid condition have not checked for possible nodules. Just treat with medications. They deny that radiation may be the cause.


I have had clinical hyperaldosteronism with signs of hypercorticolism and hyponatremia, hypoosmolarity and hypomagnesemia for all the years since chemo. Nobody has ever considered the chemo. They ask me how much I drink.   


These are just a few of the changes that chemo and radiation cause to the body. Even with clinical evidence and accepted evidenced based communications oncologists are concerned mostly with treating the cancer. Other specialist are unaware of the changes that the cancer treatments have ravaged on our bodies. It is so frustrating to know these things from reliable sources and be totally ignored and dismissed by the people who treat us.


At the end of the day, if we don't advocate for treatment, we don't get it. And if we do advocate for care we are difficult patients and hypochondriacs. Can someone please point out a balance here?
I probably should have waited for a confirmation of the diagnosis before I started searching for information about it. From what I've read Cushing's may be as dreadful as cancer. I just don't know if I'm up for another long fight. The article referenced above indicates that the problems I have been having may be late complications of the cancer treatment that I had 10 years ago. If it is complications, is it remediable? If I had waited I wouldn't be worrying about something that may not happen. But then I wouldn't have found the article either and I wouldn't know to try to bring up a conversation about it to my doctors. So I might have Cushing's and I might just be screwed once again by breast cancer. Either way I am between a rock and a hard place.