Did anyone have LE before Dx?

Ok... So... Big updates time.

Last Thursday I booked an appointment for a Plastic Surgeon. For tomorrow. Score! No charge for the consult.

Last Thursday I got a call from the "breast Dr's" receptionist. Vascular Surgeon Consult Aug. 8th. Ok... 8 weeks in Ontario time is not bad...

Went to acupuncture last week and did the arm. It got fluid moving into the arm but not out really. That darn swollen node on the inner arm stopped things and the lower arm swelled. So hubby and I had a discussion and decided that he'd pay for todays to give it one more try. So I went. I showed the Dr where it stopped as far as flow and he targeting that node, and that area. I am really to the... Can't hurt to try stage. It softened the node... Not a lot... It is still firm. It just softened enough that flow was established for a short while and that meant the firmer areas of swelling had enough flow through to soften up a bit. Kind of wild to see, and feel. The swelling went down for a bit, and my hand felt more like MY hand for a bit. It lasted a couple hours and then things started to swell a bit more again. It is 3/4 of what it should be on a heat advisory day and it is softer to the touch in the swollen areas. I count this as a good thing. Minor downside... I look like I had bloodwork done as I think he came close or hit a tiny little vein. A bit of purple bruising at the one spot.

Please know... I am NOT advocating others try this. I am not even sure if it is for ME. I am simply saying what I am doing because compression is a no-no until they figure out the nerve thing and I need some relief. If I don't document... It is just an after the fact accounting. Right? I am willing to take the risk because I am without options. It is a big risk to take.

Now... As for the rest of my interesting day. I'd won a breast cancer themed afghan at a fundraiser on the 8th. It is beautiful and all of the squares were afixed with yarn but the outer edge with detailing was afixed to the blanket with thread. The thread broke in the one spot I guess and I took it right to the knitting shop near me today and they are going to re-do the seam with yarn instead of thread to make it stronger and last longer. It is worth it to me to have it done...

That said... It was a BC themed blanket so it got the attention of one of the women. Turns out her sister JUST got a Dx of IBC. It took her sister a YEAR. It was not until the Peau D'Orange came up that things moved and they moved fast. Wowsa. So... That brought a discussion that lead to size increase, timeline, me pulling out my phone and saying... Did your sisters breast look like THIS during the course of the year. Answer - YES! Exchanged names of her Dr's, etc. Discussed the pending dermatologist referral, and plastic surgeon consult with her expressing her frustration with the battle to get answers for her sister and now me... And her wanting me to follow up. Awesome woman. I directed them to the site.

So........... BIG day. HUGE week.

That's my news. I am going to cross post to my MRI thread.

Shell

Binney... No surprise at all. Though it just confirms my need to push them.

And yes... The risks you listed are huge, with a 3rd coming in right behind...

1. Cellulitis. We all know the risk there.

2. Having my arm worsen. We all know the risks there...

I weigh both of those as a 50/50 risk. That is my risk every time I do it. I do it under the care and control of a very qualified practitioner. He is a C.M.D, Dr.AC, & has a Ph.D in Physiology.

I am also very familiar with infection and my body. I keep an incredibly close eye on things.

The 3rd and very real risk is... We are moving the fluid to try to get the lymphatic system to kick back in... But at the same time you are not typically suppose to move it if you don't know what is in it. We are taking a calculated risk right now. Perfect example... MLD is ok if you are under treatment, but not directly over a tumour, etc. 

I just want those who might contemplate following in my footsteps to understand very clearly why I am not advocating this for someone else.

It was a decision my husband and I made together, and one I gave a lot of thought, consideration and research to.

Big hugs and love,

Shell

Well... it wasn't the acupuncture that kicked my arse. It was... Swimming... Getting a bug bite... Scratching it. EFFITY EFFITY EFFING HECK!

Acupuncture is officially cancelled tomorrow. *sigh*

So... I was very, very tired yesterday. My arm was very, very sore... And I watched it get a bit more pink as the evening hit. Considering I had stayed in the house the entire day due to rain and it being overcast. Not a sunburn. *sigh*

So when I woke this morning and my temperature was higher then mine typically is... not much. Just enough. My arm was very warm... my upper arm was soooo swollen I actually had a very uniquely located roll of tissue on the inside of my upper arm. I was having NO part of it.

So... I called the GP. It was not till late afternoon I could be seen so I intially passed. I had it in my head that I would go to a walk in clinic.

So... I made it a productive day. Here's how:

Last week I'd gotten the names of 2 general surgeons who "do boobies" in the area and I went to get their cards (as neither have a fax listed on a site) and had a quizical look from the first receptionist... And at the second place I think she may have been a nurse/receptionist based on how things went. THAT is the place I felt "right" in. 

I walked in and asked for a card... She made sure I knew it was a General Surgeon's office.

I said... Of course! After nearly 6 months going to "the best" (insert hospital 1's name) and trying for a second opinion at "the second best" (insert hospital 2's name) my GP is advocating for a Mx. I was told to come here by *insert a nurse and former paitient of his's name* who works at... blah blah.

So she said... What's going on? 

So... I told her. I told her about the increase in size. I told her about the "just lymphedema" comment. I told her the Dr i'd been seeing would rub her head and say things like... I don't know what that is... I've never felt anything like it before. I know it doesn't feel like any cancer I have ever felt before. (About the thickened area) 

And then came the book... She asked questions about the pink areas, she pointed out the odd contour on the very first pic of the pics of the thickened area and actually looked at the progression as the pages were flipped. 

She commended me for having my reports... And my disks. Told me it was "perfect". 

Oh and edited to add this: I said "I even had a MRI done"... She said "Let me guess... They were too dense to see into..." Loved how she saw that coming!

Asked me who my GP was... Said if I got the referral in today. She would put me in... Wednesday.

I then went to my GP's and asked to have a referral faxed... Was told she would want to see me and got offered an eariler time then I had been that morning. So I took it, and then said I guess the arm can wait 2 hours too. 

My GP put the referral into the system... Was worried I wouldn't get in for a while but assured her if she put it in that day I could get in Wednesday.

GP checked my arm, took my temp which was slightly high for me (I typically run cooler then most so slightly elevated is pretty high for me), and wrote me a script. Asked if Penicilln based was ok and I said yes. (It is my least used family of Abx so I am always willing to try them now.) Cloxacillin 500mg 4x/day 7 days. 

Left... Called the Surgeon's office, and she put my appointment on the books and said I hope the referral comes through by then. I said it should go out today...

Left... Got the script. Took one... and within 3 hours the pink on my arm was 90% gone. 1 hr post pill 2 and the funky roll effect from the swelling on the one area is 50% reduced. 

So... A good day overall. It could have gone so differently.

Am I happy my arm is buggered from so little? No. Am I happy it is resolving quickly? YES! Am I glad I held out for my GP? Yes I really am.

Shell

LOL Binney... I couldn't leave everyone on their own! I am such a joiner!

Actually it was kinda strange. I was reading Kira's post the other day.

OK! It's been a good day.

Let's start from the top...

The pink areas on lefty, and purple areas on right... Very likely caused by smoking.
- Guess it is time to stop...

The indentations... No. Not "caused by fat" as the Dr at hospital 2 said it "probably" was if there wasn't anything underneath it. NOPE. A simple explaination... It is the ligaments in my skin pulling on the skin when the skin moves. It is causing the indentations because of the increase in size.
- I can live with this... It makes sense.

The thickened area... Is more obvious and has caused the area to stick out of the side because the tissue above it, and the breast have both been built up more. Especially the breast because it has grown in size.
- Ok... I can understand this. It makes sense in the way he described it.

The increase in size... He believes I may be one of the "lucky" ones who's breasts continue to grow... Through their whole life. In conjunction with... *drum roll please* Macromastia. Which is one of the 2 benign things I had found that could possibly sort of fit as long as something else could explain the rest.
Basically he said that my breasts will continue to grow like I was going through puberty and while it was only 1 side... It is the most likely cause. Treatement for it can be a breast reduction but he cautioned that the scars can be awful (tee hee I got a boob guy for a Dr I think), and with it... He's seen it re-grow around the scar tissue on more than one occasion. He said he would certainly do a PS referral if I wish but he would never push me to go for it because he said "everyone has different opinions on what is a good with them and I don't see large being a bad thing". *chuckle* I said it didn't hurt to have a consultation and discuss it... So he is making a referral to his PS of choice.

The arm... It is most likely caused by something pulling down and putting pressure on the veins and lymphatic system and if I choose to live with the increase in size... It is something that may be there permenantly.

We then got into a discussion about how I've always bought my bras from the UK to save costs, etc. and the drastic difference in price between here and the UK. I think there were notes jotted about that. *grin*

He eas sweet, charming, and had answers. They make sense... They have made my stress level go down drastically.

He said "cancer doesn't usually move as fast as it increased in size"... And I said... Excecpt for 1. So he then said Inflammatory Breast Cancer. He said to not stress at night over that as he's confident it is the combination of the other things.

He explained everything so clearly, and so well I am genuinely relaxed for the first time in months so I am going to take it as this... At this point... I will sit back and chill a bit till the derm consult I am waiting on, the lung tests at the end of July, etc.

So more happy dances this week.

Shell

P.S. Yes I know the only way to be sure about the rash re:IBC is a biopsy. I am just wanting to enjoy our holiday weekend that is coming, and wanting to enjoy a bit of my summer. For the first time in all of this someone actually had REASONS and EXPLAINATIONS for symptoms so I am going to hold onto those.

Thanks Binney... I am going to say I doubt my time in these parts is at an end... It is just a break from me asking... WHAT IS THIS for a bit.

Besides.. Without the LE section of this board I am without resources... So... not going far. Just taking a break from hunting down Dr's.

Big hugs,

Shell

So I got the Pulmonary Function Test results and the Chest CT results today.

Long story short...Chest CT deemed better results verbally. I got a copy of the report to read tonight.

New Radiologist doing the reading. Comparing to previous Chest CT.

This Radiologist seems more on top of some things, and less specific on others (no measurements for anything under 0.3cm). Some prior nodules didn't show on this CT (slicing distance could mean they were between two but that means they are small enough to be missed right), some are defined as stable, and the big one is not 2.3 cm this time around. In fact... Nothing listed over 0.4cm with regards to nodules. Linear opacities were actually identified this time as to what and where in a more specific manner. Discriptive words like hazy, solid, and fissural were used this time. It really gives me a better idea of what is going on.

Based on the decrease and stability seen I was given a choice. Take a look in a year, or push it up to 6 months. I chose... The 1 year. It was essentially my choice with the direction from the head of the Thoracic Department telling me she feels that 6 months isn't required. I chose to take her advice and take a year off.

Now on to the Pulmonary Function Test... It was deemed OK verbally.

I will agree with that to a point. I have a couple values that are out of whack. 1 is the lowest you can be in the normal range (need to be 70-130% and I am at 70%), and 1 is to be between 2.3-3.9 and I came in at 2.2. Basically the two things of note are my MVV is at the lower limit of normal, and though I have a normal TLC I have a reduced FRC.

This of course had me going... What is FRC?

What I found out is:
The Functional Residual Capacity (FRC) is the lung's physiologic reserve, it is a reservoir.
Loss of chest wall or lung compliance causes reduced FRC.

Um... K... What is that? So I found an example that makes sense to me.

For example, imagine that you are lying in bed - it's a Sunday morning and a member of your family comes in and sits on your chest. Most people will respond to this provocative assault with a comment such as: "get off my chest I cannot breathe".
The extra weight of someone sitting on your chest is, indeed, hard work. Consider a slightly different situation: the person announces that they are going to sit on your chest; you have time to prepare. What do you do? Do you 1. Blow all of the air out of your lungs, or 2. Take a deep breath in and hold it? You do the latter. This is because - with the extra weight on your chest wall - it is easier to breath when lung volumes are high than when they are low.

It took me back to when I told the breast Dr that my increase in breast size had resulted in breathing difficulties. If I am leaning forward I am fine but the sheer weight of my chest is now such that it means I can't breath if I am reclined or laying on my back. Even sitting up it is affected.

I guess at this point I am down to figuring out the lymphatic system issue in the arm, watching what is going on in the breast (with no actual defined answer as to what caused/is causing the things going on), and to actively persue surgical reduction (which depending on when that happens may mean more imaging).

I will have to check that thread out.

As for the scars... I scar well. I've seen best case and worst case for the scars. I am willing to live with it for the simple sake of breathing with ease. *big hugs*