Things Doctors Say . . .

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. . . I will preface, I am skeptically enthusiastic about my new GYN. I had to find her because my other new GYN, whom I was skeptically enthusiastic about last year, has ditched conventional GYN care.  My newest newbie, who is no-nonsense and a look-you-in-the-eye kinda gal, won brownie points with me today when she performed my ultrasound in-office, had read my med hx, and essentially confirmed that the radiologist who reads my PetScans is a moron: (1) contrary to his findings (which he confirmed after a second look) I do NOT have a prominent uterus displaying heterogeneous metabolic activity; and (2) contrary to his findings (which he confirmed after two second looks) I have NOT spontaneously re-grown my right ovary - a little item that was surgically removed in 1981 during a right-salpingo ooverectomy. She did, however, find dime-sized cysts...but that is another appointment and not of any remarkable concern.

Then, my newbie said the darnedest thing.

I was thinking about you yesterday.

Really, because it was birthday?

Chuckle...no, but Happy Birthday!  A patient who came in yesterday was visibly upset. I asked her what was wrong. She told me that her BFF had just died. Apparently her friend had been diagnosed with breast cancer three years prior. A few weeks ago this friend started having shortness of breath. She was diagnosed with Valley Fever and her PCP started treating her as such. Then she started having headaches. When she collapsed and taken to hospital, they found she had masses in both her lungs and brain. She died 5 days later.

I immediately thought of you.

Oh.

What is your doctor doing about your breathing issues?

The antibiotics didn't work. The breathing treatment worked only for a day. The steroid shot too only gave relief for a day. They want to now assess me for Valley Fever.

Get a second opinion if that is the conclusion.

Yup.

 

Expanding my vocabulary

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I learned a new word today: METS and it does not pertain to the team in NY.

A little whining.

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I have not whined in awhile. Ranted, yes. Personally played my own pity violin - not in awhile. I am due.

I find that I am tired. Almost all of the time.

I have noticed that the dark blue circles under my eyes are becoming fixtures, and creeping slowly toward where the "apples" of my cheeks used to be. I am going through the concealer like its lip balm.

At times I sleep, literally, like the dead. Other times, the slightest sound, rustle, movement startles me awake.

The dreams are curiouser and curiouser.

The pains are curiouser and curiouser; and more persistent.

My body feels like its on full-tilt. I am so keenly aware of every breath, every rumble, every stab, stress, pull, pop. Yet, at the same time I am disassociated from it all.

Something new will manifest, and take hold. My husband asks: "are you concerned?"

Sometimes.

The little voice buried in my semi-conscious wonders "is this symptomatic of ...?..." "should I pull out the latest written orders for tests and just allow the poking and prodding to go on?" "Do you really want to do a fourth vaginal ultrasound and pelvic MRI, just because no one can definitively determine what that pesky little pain & mass are?"

I do pull out the orders that are in my vanity drawer (how's that for irony) look them over, and stuff them back inside. They have been in the drawer since January now.

My other little voice then loudly pronounces, "what would you do if they can figure it all out?" And the resounding response is, "probably nothing that they would find acceptable."

So, unless they can make a vaginal ultrasound fun -- and I am talking fun like they are able to get Johnny Depp to hold the wand, then NO, I don't want to go through it again for a fourth time in 10 months.

...
And, at the same time I am doing all this wild body-morphing activities (hot yoga, reiki-ish realignments, colonic therapy, infra-red saunas...elixirs and tonics). Still, I feel drained, spent and unmotivated. Interestingly, not when I am in the middle of an experience. Before, after.

It's life after cancer? It's life with cancer? It's life pushing 50?

Nurse Tracy Calling

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Four Winds Oncology, can you hold?

Of course

May I help you?

May I speak with one of Dr. Obenchain’s nurses?

I’m Nurse Tracy, I can help you.

Oh hi Tracy. I don’t believe we have met before. This is “TC” I got a letter from SMIL stating they it was imperative they do additional studies, to supplement my breast MRI last Tuesday. I have called them. They want to do a mammogram on my right breast and an ultrasound on my left. They will need the doctor to fax over orders. But, I have a couple of questions that I need answered before we proceed.

Of course. Tell me what they are and I will talk to doctor and get back with you, and I will talk to her about the orders.

Thank you, my questions…concerns, rather are (1) since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram – even a diagnostic mammo, why do we need to do either? SMIL said that the MRI images were perfect in clarity; and (2) what is SMIL seeing on the MRI that makes them (a) want to do additional exams, and (b) what less comprehensive exams tell us that the MRI can’t?

I can’t answer those questions, I will have to request the report, have doctor review it and call you back.

Yes, I realize that, thank you. I would appreciate you following up with the doctor, thank you.

4 hours later….

Ms. TC, this is Nurse Tracy calling from Dr. Obenchain’s office. I have your answers. SMIL says that they do not have a current mammo on your right breast and want it for their records, so that is the reason for that follow up exam. Regarding the ultrasound, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there. That is the reason for the ultrasound request. The doctor said that's fine, and I am preparing the orders to fax over to the lab now.

Oh. What about my initial question?

What was that?

My question of necessity. Since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo, why do we need to do either?

Oh, as I said, because SMIL says that they do not have a current mammo on your right breast and need it for their records. And, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there.

Right, I understand what you are relaying as SMIL’s reasons, but isn’t it true that the MRI, that was just conducted 6 days ago, is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo. And as such, that it should give both SMIL and Dr. Obenchain the information they need to determine what is going on with the scar tissue as well as the status of the right breast?

Ms. TC, you haven’t had a diagnostic mammogram on the right breast in over a year. With your history, you need to have a diagnostic mammogram at least annually.

Tracy, I don't think I agree. I am not so sure that is necessary, in light of my history. The mammograms are not as effective as detecting ILC as an MRI.  My individual history includes the sequence of diagnostic events, in order of certainty, as: (a) diagnostic mammogram; (b) ultrasound; (c) biopsy; and (d) MRI. Knowing all this, I raise the question - isnt doing a mammogram now going backward, diagnostically speaking? And, therefore unnecessarily exposing me to radiation?

Ms. TC, radiation exposure to mammograms is minimal. You got significantly more radiation exposure with the MRI.

Um…Tracy. I don’t believe that is completely accurate. My understanding is that an MRI does not involve exposure to ionizing radiation. Doesn't an MRI use magnetic fields and radio frequency pulses – not radiation. Mammograms, on the other hand, do indeed use ionizing radiation – I know the radiation levels are not astronomical but it is certainly higher than an MRI. Besides, aren’t there more risks of false positives with mammograms than MRIs?

(Pause...heavy sigh...) Ms. TC, it is your choice as the patient, if you do not want to have the mammogram that is just fine. I will note that you are declining the mammogram here in the file. Is there anything else, otherwise I do need to attend to other patients.

What about the necessity of the ultrasound? My understanding is that the MRI would be more conclusive in determining what is going on with the scar tissue than an ultrasound.

Again, Ms. TC, it is your choice if you do these exams or not. Doctor has signed the orders. Just let our office know what you decide. Have a good day.

I hung up and immediately started writing. Since the beginning of this journey I have always kept a journal when meeting with or talking to any and all medical professionals. There is too much information and bias that is thrown out there, and taking notes is the only way I can properly process and distill everything in my own time and context. With the second conversation, four hours later, I was keeping copious notes. I wanted to confirm for myself whether or not my questions had indeed been answered - or not. It is entirely possible that I am suffering some residual effects from last week’s concussion and was just not "hearing" Nurse Tracy. Though, I am fairly certain - upon review, that the substance of my questions were never addressed.

Thank you, Nurse Tracy, you have a good day too!

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

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...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?...no, 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!