Did anyone have LE before Dx?

Well I have my appointment for the new place. It's a fair ways off but that was something I kind of expected. It's a Canadian thing I think. It's all good.

The good news is I will be able to take a copy of my MRI with me. As I won't leave without that on disk either... *chuckle*

I'm actually pretty laid back about it all considering...

LOL Binney... The day after the MRI. Kind of works out like a charm right?

*happy dancing through my living room!*

Just noticed a voicemail on house phone (we're going to ignore the fact that they called the wrong number)... Found out they left a message this morning for an appointment tomorrow morning for a LE Dr!

*happy dance*

I go at 11:30.

This was a wicked productive day! Earlier... Saw my GP!

Not sure if I am going to end up with a pulmonologist or a thorasic surgeon as gp is thinking a brochoscopy may be better to take a look. She was really cool today. Told me it may be nothing (to reassure me), but it is something to be watched with the lungs and only time will really tell but if it was her lungs she'd be worried too. AWESOMENESS! It was awesome to have someone not blow me off!

And she said it can't hurt to do an ultrasound of the mass... But tried to reassure me that it is very rare for one to be growing as fast as mine is so that might be a good thing re-cancer. I said it would be great if it isn't.

Basically where she and I are at is that she and I agree that no matter if it's something major, something minor to deal with or something i have to live with. We both agree I need to know what the something is...

She told me I need to go back to vegas. LOL! I said I did too... But on the note of Vegas... (Apparently I was wicked happy after my vacation)

So... lots of follow up... and she wanted copies of the reports I got. I think she would have written the requisition for the new hospital if it wasn't in place but told her I already have that in place and she didn't blame me for jumping ship. Kind of encouraged it actually.

OMG what a big day for me!

I will pop on tomorow night and fill you in on how it goes.

I'll admit. It is a tough call as to which will be more facinating. Ultrasound or LE Dr consultation.

Big hugs back!

Shell

A very slow process yes but I do have a couple pieces of the puzzle I didn't have before.

I am going to put in some of what happened.

Ultrasound this morning. Mass/change to contour of my breast/thicker area... Whatever we wish to refer to it as... Is a thickening. A radiologist came in and actually walked me through it. They were phenominal there. Hands down best ultrasound experience I have had, and it was very interesting. What they did was they did everything, then came in and walked me through what they saw and didn't see.

There is no solid area to that section. When you look at an image of that area compared to the identical location on the other breast the tissue looks very close. I'd say 95% similar... They are not sure why it is thickening, and more dense but the tissue appears like normal breast tissue. Something I am sure I will ponder for a bit. Any insight is welcome.

The left breast is larger (which we know already) but the radiologist did a two handed comparison so to speak. Checking matched points on both. Left is more dense... Though there was nothing that immediately said move fast for him. He's glad I have a pending MRI and feels that outside of that I am right to consder persuing a reduction if it comes up clear. Really nice man, and the technician was a sweetie too.

Then... Off to Dr who deals with LE.

Older gentleman... Absolutely awesome man. We discussed symptoms, and went through things. He asked questions, then asked me to perform a couple things that should have been simple tasks. Apparently they were not. 

There is nerve issues to put it bluntly. He is directing back in his report to send me to someone who deals with thoracic nerves because he established significant weakness and lack of response in a number of places. The median nerve (thumb and index specifically) and ulnar nerve (pinky), as well as found out I have an area on my forearm which is not registering sensation properly. Adding in weakness in resistance tests of my actual arm, and pain reflexes if certain standard motions were attempted. He's concerned that the nerve is not getting enough blood flow to function properly and that something is blocking the main nerve high up above the collar bone.

We also discussed the swelling... And I said I'd been told there was none, or barely any. He said no... There is swelling, and and it is not nothing...

There is a lot of swelling. He doesn't do what he feels should be checked which is fine with me, but I will be curious to see where I am headed next. 

Admittedly I wish this had been started a month ago.

A fun side note... When he was doing his tests on the nerves he held something against my arm. My arm which hasn't pitted for nearly around a month. Looks like I babied it, and took good enough care with it that I am back to pitting. *super happy dance*

Not sure if being back to pitting will make sense to some but for me it is certainly an upswing.

Oh and he had a sense of humour. When talking about the swelling I commented I could no longer wear my wedding ring... So he asked if it had my neighbours talking. *giggle*

Very, very sweet man. 

Guess the nerve damage comes before the swelling... apparently compression might not be a good idea until we figure out the where, and why for the nerve. It was just really nice to be able to find something out if that makes any sense. It might have left me with a new question but it gave me a place to go from.

Shell

P.S. Yes Becky... VERY VERY SLOW!

Well today was disk pickup day...

Ultrasound picked up.

And this past weekend I had a charming ER trip re-lung issues so that picked up too. Was upfront about what I needed and why and have a chest xray from 2009, 2010, 2011, and 2012 on it... ALL on 1 machine... I figure this will be the chest x-ray disk that will mean something.

And I called yesterday to follow up on GP's office re-lung issues. Had called Monday to give them update on weekend and on Monday morning (let's say I have a pick of mucus with a TINY streak of blood in it *shudder*). They've not heard but will call me when they do.

Called the BS I've been seeing and she read the report from last weeks appointment... And is figuring out what to do, and where to send me apparently. Maybe she needs to ask someone for some guidence? Just a thought.

Saw this on FB today and have to put it here. It fits!

I have! I swear it!

Shell

Binney,

I'm not sure how or why but on this one... I think I'm at the right Dr. I've done some research... Looks like this one is going to be a good fit. I found an article that quoted her. It was on paitients wanting a second opinion. Here's the quote:

"Sometimes a patient wants to explore other options that weren't discussed the first time, or there is a personality conflict with the first surgeon, or the patient may feel their questions were not answered fully enough..."

Sounds like a Dr who's got her head and heart in the right place. I am looking forward to it.

Thanks olearca he was so nice... And I have high hopes for next week's Dr too. It's hard at times but maybe this is the turn for the better.

Hugs,
Shell

P.S. Finally got a bran-spankin-new tape measure... For accuracy of course. I meant to post this on the weekend... I measured upper arm vs. upper arm. I'm right hand dominant so the right arm is usually larger. Left has right beat by 1 1/2 inches. Um... I'm a former gym junkie and know right has ALWAYS been 1/2 inch larger. So that's more like 2 inches larger then I am use to... Wrist is 1/2 inch larger left to right... ring finger on left hand is up from a 6.5 to a 7.5. Those are the minimum during the course of the day.

I don't begin to know how to type what I was just told on the phone... I am for lack of a better word... FLABERGASTED!

Last Thursday morning I phoned the breast Doctors office at 8:56 a.m. EST. I left a voicemail requesting a copy of the report from the Doctor I saw on the 11th who figured out there was nerve damage in my arm and hand, and a copy of the pathology from the lymph node in my axilla that was from the FNA on the 16th of February.

At first the receptionist was very defensive but I used my skills as a sweetie to reassure her and get her in a positive mind set. *looks all innocent* I am rather good at this when I choose to make use of it.

I was told to contact the other Doctors office for a copy of the report... Because it has been sent to central scanning and they are not sure when it will be back.

Then... She pulled up the system. I gave her what it was, and the date. She started to become aggitated and mystified. She could not find it in the system. No record. No report. Nothing. She moved the system back to before I started seeing them there to see if it was in there under a wrong date. Nothing. Not one sign of it. 

Now I had managed to procure copies of the ultrasound and mammogram report and I have informaation saying this and the other FNA were done. So I have verifiable proof that it existed. At this time it is no longer in the system in the hospital network and records.

She was commenting over and over how strange this was... I said I was getting use to strange. I had a whole ball of strange going on around me. I even made light and chuckled how the CT report defined that my uterus appeared normal when I had a hysterectomy 2 years ago.

I think the receptionist just opened her eyes and saw why I am asking for copies of reports. When it comes to me this is not the first specimen to go into never never land and not the first report. Heck I have even had images on an image series be questionably absent.

I sit here and have to wonder WTF don't they want me getting my hands on?

-------------------------

I failed to update after last Thursday's lung appointment. The good news is they feel it might just be something non-cancerous causing things (though we all know if they finally figure out the breasts and it is cancer that tune will change and be wiped from the record). They want a repeat CT Scan in June... They talked to the radiologist supposedly and the 2.3cm is supposedly a typo and it was supposedly dictated as a 2-3mm nodule. 

Now I know most people would have been happy hearing this but to me it smacked of bullshit baffles brains. If all other nodules were reported (11 others at that) in a fashion that went like this:

Small right upper lobe nodule image 31 measuring 0.4cm. 0.2 cm nodule image 37. Linear opactity in the right lower lobe image 61. Another linear opactiy image 64. Nodular structure measuring 0.3cm image 68 tiny subpleural nodule image 74.

Would someone tell me how they could possibly believe that this one was dictated as 2-3mm?

Small nodule in the right middle lobe measuring 2.3 cm image 53.

Why would a radiologist change format so drastically? They wouldn't. They round them off to the neared mm from everything I have read and learned about them and goodness knows I have spent hours learning about lung nodules.

It would have been more believeable if they had tried to tell me that there were 2 0.3cm nodules. Their mistake was assuming that "I can't brain because I have the dumb".

I let it slide though. I really did. I accepted their pulmonary function test that they will be scheduling (no date as of yet) and that they will move the repeat CT scan to 3 months instead of the recommended 6 months. 

The joke was they repeated a couple lines I had heard said by the breast Doctor, and then heard from the arm Doctor (before he realized there was nerve damage). I had told them about the report (which is now mysteriously unavailable and in for scanning...) stating I have nerve damage and they did question how I would know that and so I provided the name of the Doctor, and the date on which it was determined and how it was determined. It was then accepted as fact.

I should say the staff was wonderful and nice... It was just absolutely entertaining to be fobbed off. Why do they try to do that with me? What benefit is it to them to do so? 

Why does the breast doctor insist on pushing the crazy lable on my file? Do I need to walk around the hospital with my breast uncovered so others will see the various things you can see from a distance? The interesting thing is I have had people who I know and trust take a look and they tell me it looks painful. The beauty is that now that the weather is warmer I am no longer in pain... Unless I lean into a freezer and then the front inch and a half of my left breast feels like it will explode from the pain.

I just don't get it. What is so hard for them to figure out? Why do they insist on treating me like a nut bar? How dare they? HOW DARE THEY TREAT ME LIKE I AM A FREAKING NUT CASE WHEN YOU CAN SEE HOW SWOLLEN MY BREAST AND ARM ARE THROGH MY CLOTHING! How dare they dismiss me when you can see the thickened area through a t-shirt if I am not wearing a bra.

I guess my attempt at cooling down before I wrote about last Thursday is a failure. I am still on my soap box. I have tried to be positive about it all. I really have but wow... What a disasterous mess. The straw that broke the camels back really is that missing pathology though. How dare they!

Shell

At this point... I am just left sitting here vibrating with frustration.

The general consensus of those in my close knit friends and family group is the following:

We feel that the report was not available on the day it was "told" to me. We feel she got tired of waiting for it to come up and the paper I saw was not the report. The reason for this is that it didn't look like any other report I have seen since and used terminology that would not be used without other information.

We feel that the report eventually came through and might have had more defined information then what I was told or even contrary information (based upon the progression of symptomology and issues). 

We feel that the reason so much hinges upon the MRI... Is because the bets are being hedged upon the MRI showing something which will be biopsied and "found" at that date and time. Which would then negate me having asked for the previous report once again, and have allowed treatment to be put in place then and there.

It would allow the "See! I was correct in ordering this MRI and thankfully we caught it!" factor to come into play.

It is a sick, twisted and beyond reason thought that went through my mind when I found out about the missing report but to have heard it stated over and over today makes me think I am not at all the nutty one in this equation. It's a very scary thing to live in my reality. I learned many years ago that truth is stranger than fiction...

It will stop. The buck stops at either the hospital I am switching to or come mid-June I will be starting a funding drive to go stateside to one of the reputable hospitals. I was going to do it but then started the motions to jump ship. Now it is going to be on the counter waiting to be put on the burner so to speak. I know enough people out there in the world that by my calculations if every person I know over the age of 18 threw in 10$ I would be near or past 40K. ALL I need is a Dx. I don't need treatment in the US. Not to mention the pure publicity it would bring... Maybe there would be a Doctor willing to step up and say "I can figure this out"somewhere across Canada.

What a pure, unadultrated cluster f^(@!

Shell

P.S. yes we have that type of regulation as well and it will come into play but not before there is a civil suit filed. My wishes.