Did anyone have LE before Dx?

Ok so quick summary. Very nice Doctor. Very nice staff. Yet nothing they can do. Pushing hard to geet the disk was a waste of time.

They will wait on the MRI report to see what shows up. The disk is apparently not compatible with their system... blah blah. *shrug*

Was told Dr I have been seeing is one of Toronto's finest... blah blah... Which sucks because we don't get along apparently. *shrug*

So now in limbo waiting on MRI results. Welcome to Canada. Have a seat and we'll dust you off when we are ready!

Please keep in mind while reading the following that I am scanning the disk and then typing, and then scanning and typing again.

I think I will start by saying I have a lot of reading, and comparing of various images from the textbooks, and published papers I have links to. Yes... I can honestly say. Certain areas lit up like Christmas trees.

The first thing I want to note is that I am comparing befor and after contast for the same series. Before contrast I can see areas lit up in grey. After has very specific areas much brighter.

It is pretty easy to play spot the lymph node. There are a couple that stand out a bit more. I am not sure what that means but I am sure I will eventually find out.

Areas that pre-contrast have uniform grey are not the same post contrast. There are areas which are much brighter throughout those uniform grey.

Right now I am viewing the 1 min/2 min... First I looked at the pre and 1 min. Basically looking at the Kinetics of the enhancement I guess. 2 min is higher brightness then 1 min was. On to the next ones to check the "curvature"... If increasing it typically indicates fibroglandular, if plateauing, or the rate of washout. *No one can ever say I am not an A student!!!*

2 min/6 min. We have some fibroglandular tissue it looks like. Continued uptake. *grin* And we have washout in the nodes a bit further along. More uptake, more washout and some plateauing.

6 min/7 min. Safe to say more of the same as the 2/6.

The Sag Recon views were probably the most facinating ones. They come from the outside edge... inward. Side view. I got to really see the thickened area as it passed through it. No idea what it is but it is there in the tissue.

No. 10 weeks is about normal for a low priority one such as me.

2 FNA's (fine needle aspirations). 1 on a "suggestive for but not deffinative of a fibroadenoma" and I can accept that as it LOOKS like a fibroadenoma (1cm at largest dimension so not something to account for swelling). 1 on a lymph node in the left axilla. Both ordered by the radiologist.

Never has a biopsy been done on the palpable thickening that has created a mass in my breast. It has no defined edges on ultrasound, but can be seen through the skin and touched. A bit of a conundrum.

If I pull up the CT scan on disk... The only imaging I had in March. I can see a grey area with jagged edges which shows in the breasts at that time but at no time were my breasts reported on in the CT scan report. There is also a lot of activity in 1 other area in the left, and 1 in the right. Interestingly those were the areas that took up contrast in the MRI. As the MRI was breast specific... I am interested in seeing what it says.

The only reason the CT and the MRI were ordered is because when I asked what came next... And asked if she would send me somewhere else to figure things out... And she replied "I wouldn't know where to send you"... Along with her asking "What do you intend to do next" and I replied with "Find a surgeon and pay them to reduce my breasts"... So the Dr relented and said she was sure they was no problem in my breasts and would not order a breast MRI... But she would order one of my left shoulder. I was willing to accept that. She left and then popped her head in to say her student recommended a CT as the MRI would take a while. She sent her student Doctor back in to fill in the MRI form, and then the whole question of her addressing orignal reason for referral and her "I don't care" thing came out. Followed by the student Doctor telling me to "get your anxiety checked"... They faxed the MRI requisition and I never saw it but apparently it was breasts not the shoulder. Not sure how, or why but maybe me saying "the only time I have anxiety is when i don't think I am being taken seriously" was what prompted the breast MRI.

At this point I am glad to have had it done. I just need answers. Solid answers. The more tests they run... The better the chance I have of getting them. 

If someone can't figure out WHAT the "What" is soon I will litterally go stateside. There is clearly a cause as there are clearly symptoms. I just want to know what that cause is because I can't go any further without knowing something.

The MRI report will tell me if I have hit the wall, if it could just be b9 and possibly what kind of b9, or if it could be malignant. Let's be blunt and lay out possibilities. Benign include (but maybe not limited to if someone comes up with something else) Unilateral Macromastia, or fibroglandular changed with cyst free fibrocystic disease. Malignant means the odds lay with ILC and IBC.

Hypertrophy of the breast (macromastia and gigantomastia) is a rare disease of the breast connective tissues; the indication is a breast weight increase that exceeds 600 grams (21 oz), which enlargement causes muscular discomfort and over-stretching of the skin envelope, leading to ulceration. Hypertrophy of the breast tissues might be caused by increased histologic sensitivity to the female hormones prolactin, estrogen, and progesterone; or an abnormally elevated hormone(s) level in the blood, or both.

I lack the hormone levels in my blood. I lack skin ulcerations. My breast skin has not stretched thin through this. If it is macromastia then I run the risk of the tissue growing post breast reduction. This would lead to tissue swelling around the scar tissue, and causing my breasts to be misshapen in the future. Some Doctors feel mastectomy is the only solution surgically.

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Fibrocystic breast disease is a commonly used phrase to describe painful, lumpy breasts.

Hormones made in the ovaries can make a woman's breasts feel swollen, lumpy, or painful before or during menstruation each month.

Fibrocystic changes in the breast with the menstrual cycle affect over half of women. It most commonly starts during the 30s. Women who take birth control pills have fewer symptoms. Women who take hormone replacement therapy may have more symptoms. Symptoms usually get better after menopause.

Symptoms are usually worse right before the menstrual period, and then improve after the period starts.

Symptoms can include:

Pain or discomfort in both breasts
The pain commonly comes and goes with the period, but can last through the whole month
Breasts that feel full, swollen, and heavy
Pain or discomfort under the arms
Thick or lumpy breasts

You may notice a lump in the same area that becomes larger before your menstrual cycle, and then shrinks afterward. These type of lumps will move if you push on them. They do not not feel stuck or fixed to anything.

Some women will have discharge from the nipple.

I don't have lumpy breasts unless you count the thickened area. There is no downward flux in the symptoms. There is a progression that has occured over the course of months with no sign of halting or regression. These would not cause the indentations that show if I lift my arm (teathering).

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In other cases, the first sign of ILC is a thickening or hardening in the breast that can be felt, rather than a distinct lump. Other possible symptoms include an area of fullness or swelling, a change in the texture of the skin, or the nipple turning inward.

According to the American Cancer Society, any of the following unusual changes in the breast can be a first sign of breast cancer, including invasive lobular carcinoma:

swelling of all or part of the breast
skin irritation or dimpling
breast pain
nipple pain
redness, scaliness, or thickening of the nipple or breast skin
a nipple discharge other than breast milk
a lump in the underarm area

Copied from this site... I have a thickening, swelling, skin irritation and dimpling, breast pain, nipple pain, redness and a thickened area of my skin, uniductal nipple discharge, and slightly enlarged lymph nodes in axilla.
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Although most breast cancers begin as lumps or tumors, inflammatory breast cancer usually starts with a feeling of thickness or heaviness in the breast. You also may develop red, inflamed skin on the breast. IBC tends to grow in the form of layers or "sheets" of tissue, which doctors sometimes call "nests."

The breasts swell and become inflamed because the cancer cells clog the vessels that carry lymph. Lymph is a clear, watery fluid that transports white blood cells and removes bacteria and proteins from the tissues.

Common symptoms of IBC include:

Redness of the breast: Redness involving part or all of the breast is a hallmark of inflammatory breast cancer. Sometimes the redness comes and goes.
Swelling of the breast: Part of or all of the breast may be swollen, enlarged, and hard.
Warmth: The breast may feel warm.
Orange-peel appearance: Your breast may swell and start to look like the peel of a navel orange (this is called "peau d'orange").
Other skin changes: The skin of the breast might look pink or bruised, or you may have what looks like ridges, welts, or hives on your breast.
Swelling of lymph nodes: The lymph nodes under your arm or above the collarbone may be swollen.
Flattening or inversion of the nipple: The nipple may go flat or turn inward.
Aching or burning: Your breast may ache or feel tender

Copied from this site... I have a thickened area, skin changes, pink and purple not red (mayo clinic says this is possible), swelling of the breast, warm to the touch, a bruised look in certain areas, swelling of the nodes, nipple is much flatter then it was even a month ago, and the aching and burning.

I'm unfortunately simply in a position where I am NOT a priority. I can honestly say that what I have going on lacks the one thing that would tip the scales one way or another. Unless that happens I am stuck.

Now... Strange side note. The morning of the 20th brought 2 similarly placed yellowed brised areas. One on the left and one on the right. Not identical in shape. I had no chest trauma yesterday. But I toopics, and will admit they are shocking. I'll be tracking this to see if and when they go away.

Shell

Oh Bonseye! Big hugs because you've been through quite a bit! Hope the lung is feeling a bit better now.

Unfortunately though everyone is entitled to the same health care here in Canada. There is a priority system. Those who get flagged as "Urgent" which are either people with enough pull(this is technically forbidden but happens all the time), or people who have known stage 3+, or who have a 97% chance of stage 3+ along with emergency trauma paitients with specific injury types will take priority. 

Here in Ontario... We have such a flux in wait times that some will drive great distance to get in somewhere which can accomodate sooner. We also have a tracking site. http://www.health.gov.on.ca/en/public/programs/waittimes/surgery/default.aspx

From what I understand there is the same day, 2-7 days, 2 weeks, or standard priority of 2-4 months give or take based on location. So... I am not a priority based on how the Doctor I had been seeing feels. Afterage read and report turn around is 8-10 days or so for MRI's.

Thanks Binney. I appreciate it. To be honest... We are at stalemate. It is the best way to put it.

*sigh* Isn't it strange how we can go through total ups and downs emotionally. Even over a few hours.

Earlier I was laughing and enjoying life in general and then my mind was brought back to this. I've been stewing for hours.

I've come to believe resistance is futile. To date I have resisted a diagnosis of.... "I don't know. Probably just something benign." OR "I've never felt anything like it before... But it's not cancer." OR "Well I can feel it but it doesn't show up on imaging so it must be normal breast tissue."

At what point do I stop pushing for answers? I'm tired.I am tired of finding new things. I am tired of fighting to be heard, and seen, and to not treated like an idiot or a hypochondriac. I really am at the point where I don't care what this is... Just give me a deffinitive answer with evidence based reasoning. I'll accept it, and allow them to cut into me to remove enough of my breasts to be able to function. I promise...

I've finally got some relief from the feeling of having been kicked in my spine and the right side of my sacrum which I had been living with for 3 1/2 weeks but at the same time... From Acupuncture no less. How long can it possibly last if what threw it out in the first place is still messed up. I know my body coped before but on the increase in size it pushed things out. On this last run of just thicker and more dense but no size increase. My body seems to be failing me. Yet I can honestly say I am terrified to tell a Dr involved with this all because then I am once again going to be dismissed.

I guess I feel like I should have answers 12 days after my MRI... yet I know even if something is in the report... It won't even be read until June 6th unless someone else flags it. *sigh*

Tomorrow will be a better day. I am sure of it.

FYI the pulmonary function tests is booked. For the end of July. 

Shell

I went for lunch with a friend. I am ok... Still not anywhere near the point of not being frustrated by it all but I am ok...

One of my friends tried to reassure me saying I would hear something about the test if they found something. I said it wasn't likely because my reports might not even be read prior to getting to my appointment and the next one is on the 6th.

I tried to go elsewhere and I still feel like I hit road blocks. I am just at the point where I want answers. It is so frustrating.

Hugs back,
Shell

Before I forget... As of right now... (when I noticed) no need to lift right arm over head for vein to pop out... now it is all down the length of the breast. WTF! *facepalm*

Nope not mondors. Not a cord. A very vibrantly coloured vein. The pics I have seen of mondors have never had a colour to the cord other then appropriate to skin tone. This is that blue/green of a vein. Not straight either. it runs from near the top of my breast just under the skin... Down beside where my nipple is on the side with the inner quadrants. As it gets half way down it litterally starts to protrude from the skin, and then you can see it start to curve when it hits the lower inner quadrant, and eventually levels out heading toward the lower outer quaadrant but angling into the breast about 1/3rd of the way into it and vanishing.

LOL Road mapping my bewbies. A new game!

Thankfully with this... No pain. Just pissed it came today and not yesterday.

I would call them if I officailly had the number. ;-) I know they did get a call and called the clinic back yesterday while I was there and the clinic was told to tell me they would call me directly. So we wait...

Shell

Binny I already did. *soft smile*

Sometimes I am tempted to post pics and say... ANYONE SEEN THIS CRAP? But if I do that I need to do it in a seperate thread and include that there is a photo thing going on in the thread. I've held off because I worry someone else might see them before I have answers and stop looking because I am getting no where. Hope that makes sense.

GP is getting where I am coming from... And though I said Plastic Surgeon for reduction? She said... Reduction won't address your areas of concern at all. Let's re-visit this after the dermatologist looks at things, and maybe a mastectomy is a better option. It is the only way to stop the symptoms and progression you have and remove all of the areas you are concerned about.

She said it might be hard to find a willing general surgeon but it can be done, and would be covered under the provincial plan.

No problem here. I've had quite enough of the drama that is my breasts. A few years back I might have had pause for thought, but after wrapping my head around a hysterectomy this seems to fall into the same zone for me. I know many women have a hard time with losing their breasts... I loved my own until they started to malfunction. At this point I simply spend too much time worrying about them, and dealing with the problems they are causing in my lower back, etc. to not be willing to make that move.

As for a Dr who specializes in the lymphatic system. Apparently there really isn't. I was told unless the pressure is removed from the breast tissue in the axilla, and the increased breast size... It will be an issue. Yes a mastectomy runs a risk as well but since I am already dealing with it... I don't face the risk of developing it, but may be able to lessen the pressure causing it.

Interesting appointment overall I would say.

Shell

No idea when the appointment is at this point. I find it can take 1-14 days to hear back about when an appointment is.

It's the gamble that I may be needing to take at the end. I have to be ok with the gamble.

FYI... Acupuncture... Arm... Today... He got the lymphatic fluid moving but maybe not in the direction he wanted. It simply looks like it does after I have over done it for a day. I am keeping a close eye on everywhere he put a needle. Again for me it is a... Gamble is ok because I am stuck otherwise.

I'll keep you updated on what happens with the arm.

Shell