Thursday, April 29, 2010

Decisions of a "General Contractor" - To Trust or Not to Trust


. . .The question in my mind is: is it necessary to do anything?

While I ponder that unceasing question, I have begun introducing bee pollen into my daily regimen. (As well as reading the "Beatles Anthology" from cover to cover - I'm up to the year 1965!) What the heck. It makes as much, if not more, sense than what I keep running into in the medical arena.
. . .

Well . . .

I have been pondering the question, and I have come to one decision: time to change Dr. GYN. It's sad - as I have been with this same group since 1995, and it may seem a bit reactionary, but I cannot overlook the historical facts.

Fact one: it was this GYN group that had put me on Paxil, and kept me on it during a pregnancy. Paxil is now known to cause birth defects and miscarriages. That pregnancy ended in a long & drawn out miscarriage as we watched the fetus's heart beat slowly slow down over time. At that time, I kept questioning what was causing this miscarriage, and if it could be the Paxil. Dr. GYN was adamant that Paxil had no known side-effects that would cause a miscarriage. In their defense, the public's knowledge of Paxil's side effects is just now becoming more readily accessible. My research at the time (1998) however, did uncover that there was indeed room for concern. I took myself off the Paxil and went on to conceive and give birth to a healthy baby boy three years later.

Fact two: it was this GYN group that gave me injections of progesterone for 6 months to treat my amenorrhea. This was after my mammograms and physical exams identified a palpable mass that was mislabeled as "dense fibrous tissue." The current information on progesterone is:

Scientists at Michigan State University (The team of faculty is part of MSU's Breast Cancer and the Environment Research Center, one of four centers nationwide funded by the National Institute of Environmental Health Sciences and the National Cancer Institute. The center brings together researchers from MSU's colleges of Natural Science and Human Medicine to study the impact of prenatal-to-adult environmental exposures that may predispose a woman to breast cancer.) have found exposure to the hormone progesterone activates genes that trigger inflammation in the mammary gland. This progesterone-induced inflammation may be a key factor in increasing the risk of breast cancer. . . ."Progesterone turns on a wide array of genes involved in several biological processes, including cell adhesion, cell survival and inflammation," said physiology professor Sandra Haslam, co-author of the paper and director of the Breast Cancer and the Environment Research Center at MSU. "All of these processes may be relevant to the development of breast cancer."

Fact three: This GYN group is the same group that did not question the identification of the mass in my breast as "dense fibrous tissue." The mass was initially identified in 1993 (while I was still in law school) and then again in 1995 when I was referred to the current GYN group (after we moved to the Southwest). The mass at the time was negligible in size (as compared to the 6.2 cm malignant tumor that was excavated from my breast in August 2009). Rather, they went with the radiologist's report. I did not know enough at that time to question the veracity of the radiologist's report myself! Hindsight is proven once again to be 20/20!

Inter script - ILC (invasive lobular carcinoma) can really only be conclusively diagnosed through an MRI. No one offered or suggested an MRI beginning in 1993. I did not know to ask. Why would they think to do so? Why would I ask? As far as Dr. GYN and I knew I had no risk-factors to direct us to think in terms of breast cancer. My issue, however, is that when I became acutely symptomatic in early 2009 (and it took me nearly 3 months to get an appointment with Dr. GYN) with minor research I discovered the need for an MRI as a definitive diagnostic tool, as opposed to the conventional diagnostic mammogram. Dr. GYN did not send me for an MRI, he sent me for a diagnostic mammogram.

Fact four: I am now being "diagnosed" with Ovarian Remnant Syndrome (OSR) although, again, my research informs me that this can only be definitively diagnosed by an MRI. Again, Dr. GYN did not suggest doing this. Why is this important? Well, in my own research of how ILC metastasizes, the ovarian area is particular susceptible. The MRI may be the only way for me to put to rest of what this "undefined residual tissue" really is.


(oh...btw...I am now into 1966 in the Beatles Anthology! Fabulous escapism!)

Tuesday, April 27, 2010

Hmmm...Health Care Reform Needed...Ya Think???

...Long story short, I went directly to the radiologist and requested that he re-read the films and do an addendum to his findings. This request was accompanied by a full history of my 1981 oophorectomy. I am pleased to say that the radiologist did so in less than 24 hours -- and directly sent me the addendum to his report. Finding?, it is not an ovary that is present, but rather, "undefined residual tissue." And, yes, this residual tissue does measure larger than the one intact ovary. Now this needs to be explained because back in 1998 I had the residual scar tissue from the 1981 oophorectomy laparoscopically removed.

What now? I dunno? I have faxed this new info to my specialists to wait for their response, if any. ...

(Just as a refresher...I have been experiencing "non-specific" symptoms that no one seems to be able to define.)

So, my health care travails and travels took me to both a GI specialist (gastro-intestinal specialist) and my long-attended GYN's office. And. . ., in the arena of "interesting" neither failed to disappoint.

The GI (a very pleasant 60-ish guy with a wry sense of humour) attributed my "non-specific" symptoms, in part, to a .... displaced rib. What? Really? His learned opinion, after a physical exam, was that my "floating rib" (ya know, the one that belonged to our forefather, Adam) is displaced and is irritating my liver and stomach. Oh, Adam's Rib is the cause of the persistent pain in my side? Figures, doesn't it...pain can usually be traced back to a male ;+P. What about the unexplained weight-gain, chills and fatigue? "No, a displaced rib would not cause those symptoms." So, any thoughts on those? "No, not really." Oh? Well thank you for your time (?) Dr. GI gave me a brown-paper bag of pharmaceutical samples and said that all should resolve itself in 6-8 weeks. The samples were for heartburn. Heartburn is not one of my symptoms! I guess Dr. GI did not want me to leave empty-handed. Thoughtful.

Next stop? The other end of my abdomen...

My current GYN (who absorbed the practice of my first AZ GYN...(ewww, I so did not say absorbed!) and who has seen me through a couple of miscarriages (yet somehow missed the entry in my medical records regarding the oophorectomy. But he did see that his prior partner had done the subsequent laparoscopy for the residual scar tissue) duly considered the ultra-sound and PetScan results. He determined that I was one of those rare women who experience Ovarian Remnant Syndrome! What? Really? (I feel like its deja vu all over again. I just don't know for what!!)

Ovarian Remnant Syndrome (ORS): A rare condition where ovarian tissue is left in the pelvic cavity following the removal of ovaries and fallopian tubes causes pelvic pain. The tissue that is left behind can form cysts which can enlarge and pull on nearby adhesions causing pain. Pain can also occur when remaining ovarian tissue produces hormones that stimulate endometriosis.

My research tells me that the only way to accurately diagnosis OSR is an MRI and/or another laparoscopy. Dr. Onc had offered to do an MRI to explain the "undefined residual tissue." Dr. GYN did not offer the MRI. And, I must keep in mind that Dr. GYN and his partner/predecessor concurred (or rather, did not question) my prior mammograms' characterization of my breast cancer as solely "fibrous tissue."

The question in my mind is: is it necessary to do anything?

While I ponder that unceasing question, I have begun introducing bee pollen into my daily regimen. (As well as reading the "Beatles Anthology" from cover to cover - I'm up to the year 1965!) What the heck. It makes as much, if not more, sense than what I keep running into in the medical arena.

So for now, I will buzz on!