Did anyone have LE before Dx?
Ok... I am reluctant to post what is going on fully until I know more about what this is but I need to ask a couple questions.
1. Did ANY of you have LE before a BC Dx?
2. If you had to choose between moving whatever is causing LE through your body knowing the odds are not in your favour that whatever it is wouldn't cause potential damage, or allowing your arm (upper and lower), and hand to swell a little more each day and feel the tissue firming up a bit... Would you risk the arm tssue or risk spreading what is already causing your lymphatic system to struggle?
I will say a few things so where I sit is clear...
a. Keflex failed to change what is going on in my body and it was a solid dose - 500mg 4 x /day for 7 days so not likely an infection that is the route cause of my issues.
b. Swelling in my arm was first noted and documented 5 weeks ago. It progressed through the arm from upper arm, to lower arm, to involve my hand. My ring finger on my hand was a 6.5 ring size and is solidly a 7.5 when notexcessively swollen. For clarification... No I have not gained weight over this time nor is it water weight. In spite of my breast increasing in size, my arm increasing in size, my hand increasing in size... I have lost 10 lbs+ during all of this.
c. There was no known trauma which could have caused this so I keep circling back to pathological issues being the potential cause for this. Especially with swollen lymph nodes along the same line.
Shell
Comments
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Shell, just want to get this straight, you have not had any breast surgery or surgery anywhere else on your body?
There is primary LE, and you could have that. I am not an expert on it, but it is possible. Someone with more expertise will chime in in the AM.
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I highly doubt the Supracervical Hysterectomy in 2010 caused my left breast arm, and hand to go haywire. ;-) That was my last one.
I did have a picc line years ago but it NEVER gave me issues.
From what I know about primary it would have shown by the time I hit puberty... It would have to be a problem with development... This is developing in arm and hand after lymph nodes and breast went haywire. So stands to reason it's either the nodes, the breast or both. I can see and feel a node just above my elbow in my inner arm, and my axilla is a loaded mine field.
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Shell, it's difficult to understand your posts, but I can at least address some of the things you've noted.
First of all, primary lymphedema can appear at birth (when it's generally diagnosed by the title Milroy's Disease), it can show up during puberty (which is called Lymphedema Praecox), or it can show up in middle age or beyond (age 35+, when it is called Lymphedema Tarda). All of those generally show up first in legs, but arms are not unheard of, especially if any trauma has ever happened in the area (hitting the steering wheel in an auto accident, breast augmentation or reduction, a hard smack in the chest, arm injury).
With any new swelling (especially without the obvious cause of bc treatment) testing should be done to rule out blood clots, which are a significant concern and need to be dealt with promptly. Tumors can also block lymphatics and cause new, unexplained swelling, so imaging and/or biopsy should be done to test for that as well.
If there is continuing redness in your breast (which you didn't say, but half-way implied), it can be tested for the presence of eosinophils, as you need to consider the possibility of inflammation, which could indeed be caused by lymphedema and would be treated with Manual Lymph Drainage massage to remove stagnant lymph fluid, which is the cause of the inflammation.
So, while I have no idea what you're referring to in your original post, there are two possibilities that are direct contraindications to any kind of compression or lymph massage. Those are congestive heart failure and active infection. It's generally agreed that manual lymph drainage massage can be safely done in the presence of a malignant tumor as long as the cancer is being treated and the massage is not done directly over the tumor. Other than those instances, I don't know what you're referring to.
Lymphedema itself can cause localized lumpy fibrosis in the tissues, but it does not generally cause enlargement of lymph nodes (unless there is also infection involved). However there are many things that do, some of them quite simple and harmless, others not so much.
Shooting in the dark here, but I hope some of it is helpful. You need to get straight answers, and since some of the possibilities are in the nature of an emergency, it needs to be soon. If your current doctors are not addressing the need to determine what's going on, get a second opinion right away.
Be well!
Binney -
Hi Binney,
Thank you for that info. I hadn't found Lymphedema Tarda so that was an interesting one to read up on this morning.
Since half of it is out there anyway... I may as well detail issues to date and clarify.
I'll break it down by side so it is easier...Right:
Approximately 17 months ago I got an occasional rash near the nipple on my right breast. 13 months ago I started getting sporadic inversion of the nipple. November 19th i noticed discharge from the nipple. Because it was multi-ductal and green though completely translucent it was deemed "fine". Sunday the 4th there was a change in shape and increase in size of my breast. Yesterday it was noticed there is an area which almost has a gentle depression between 12 o'clock and 1:30 location-ally. *edit to add* The skin on this one has taken on a similar look including bruising and pink mottled look as of the increase in swelling.Left:
Between January 10th - 23rd my left breast went from an H to a HH to a J to a JJ to a K cup. Now the good news is it is general and overall increase in size and not that noticeable because I am already sporting rather large ones but that also makes it hard. It is like going from a B to a DDD in equivalent increase but dispersed more evenly. *sigh* At the time of this the swelling included the axilla to the armpit crease. It also included rounded nodules which have been confirmed to be swollen lymph nodes. One was biopsied and found to be B9 by a FNA on February 16th.To the best of my knowledge there is no additional increase in size in the breast. I check it by running a tape measure along a certain line and it is holding.There was 2 pink spots that started on my breast when it swelled. Between 3 and 5 o'clock, and between 7 and 8 o'clock. The pink area has continued to increase over time and encompasses 2 - 8 o'clock now but is pink and mottled/marbled. There is an area that looks like a mostly faded bruise on the top of my beast between 11 and 1 o'clock.
I noticed an area on this breast that started to feel firmer between 12 and 2 o'clock... But no one else noticed it. Not my husband not any Doctor who did a clinical exam (though my last one was the 15th of February), and whatever this was didn't show on my mammogram on the 16th. I did try to get them to swing the ultrasound wand by on the 16th but they had other areas of focus. A fibroadenoma in another area of my breast and the lymph node. As of the 7th of March my husband now feels it, and I have been photo documenting so at the end of the day I can say... Here... Take the pictures of my tatas and figure this out.*edit to add* the skin above where this is depresses in if I lift my arm above my head as of the 7th, and the horizontal area this covers is over 5 cm wide.
February 6th brought a slight swelling of my upper arm, with tingling, and numbness occurring sporadically in my left hand. February 8th had me end up in the ER to make sure I was ok as it had not gone down, and the numbness and tingling was still occurring. My friend I took with noticed my lower arm was looking puffy as well. An arterial ultrasound was done and thrombosis (clot) was ruled out. They did note a rather large lymph node, were aware I was being seen in the breast clinic and turned me back to investigating there. The swelling in my arm has progressed little by little... My ring finger on my left had was a 6.5 before this all started and now sits at 7.5 in the morning and could be larger during the day or by end of day. I play the OJ Simpson joke with my friends using my leather gloves... Some are entertained, and some are screaming pissed off because something is clearly going on. It was "squishy" to the touch along my arm until the last day or so where it now is firming up.
As of the 28th of February it was noticed that there is a swollen lymph node just above my elbow on the inside of my arm... It is at least 1 - 1.5 cm to the touch. It was soft and squishy at first to the touch and now is much firmer but not what I would say is hard and solid. Nodes in armpit have not decreased and I am unsure if they have increased in number or size as I stopped checking them a while ago. They have as far as I am aware been holding in the enlarged state since the 6th of February.
I ran a course of antibiotics from the 29th of Feb. - 7th of Mar. which made no difference to the size of breast, pink tones, swelling in the arm, or nodes. Though it did result in an interesting change to the overall appearance of little veins which I was told are "telangiectasia". The appearance of those netted me an echo cardiogram which as far as I am aware came back fine. That was run on the 8th.
Whatever this is... They are not sure. Whatever this is didn't show on a mammogram. I am 31 years old... It was suggested that maybe the swelling in my arm and hand is "just lymphedema" on the 29th of February. I have had 3 mammograms on the left, and one on the right. Initial was a bilateral Nov. 22nd, followed by a compression on the left Dec. 7th and then on Feb 16th a regular one on the left. I have had 2 ultrasounds on the left. One after compression mammogram, and one on the 16th.
So... now that I have been as clear as I can with time lines and progression of issues. I have been holding on the... Don't move something through my body till I know what it is but am now waffling because I am afraid of the firmness that is occurring and worry I might be risking permanent damage.
Shell
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Shell, you mention only a fine-needle biopsy of a single node. Have you had other biopsies (skin, perhaps?) MRI? PET scan? You need answers, and "just lymphedema" does not explain it. Any lymphedema therapist worth her/his salt would not treat you until the cause of all these changes has been determined. Since your current doctors seem to have dropped the ball, how about a second opinion?
So you're right, to the extent that lymphedema is involved you may be risking permanent damage, but you can't treat it until you determine wha else is going on. There are other more pressing questions to be solved first.
Get answers. Don't let anybody put you off any longer.
And do keep us posted -- we've got your back,
Binney -
Binney... Your first couple lines sit right in my own mind set.
Planned tests:
CT - I pushed and it will happen Monday. It is pelvic, abdominal and thorax.
MRI - Welcome to the Canadian Wait times - Bi-Lateral Breast MRI between days 7 and 13 - May 17th.
Interestingly enough my push to move my CT sooner set it firmly into the day 7-13 range. ;-)
The second opinion is an option and potentially in the works. I am gathering all imaging, and whatever reports they will hand over to make a file, and from there may jump ship. I am not a priority and that is very upsetting to me (as I am sure it would be to anyone) with rapidly developing issues. There is a program specifically for women my age near me. I found out after I had asked for a referral to where I am at now. I just keep telling myself that 7 days won't kill me at this point, and 7 day intervals I am putting in place are better than the 2 week ones they put in place for me.
I had the same opinion that no one worth their salt would touch me, but that I was potentially starting to risk permanent damage... But I needed to read it from someone else so thank you.
I will admit that knowing in my heart and mind... and having someone else removed from my immediate circle of friends and family confirm what I already knowin my heart does make it all a little more real. Considering I have been living with a heavy dose of reality for 2 months now... It is a weight off my shoulders, and a slight stinging on my soul all at once. Hope that makes sense.
Binney... I will get answers. One way or another.I am way too fiesty to let this continue much longer. I am tired of playing by the rules.
For the sake of a bit of humour... I already had a rather wild, hairbrained scheme to make people pay attention if they do not start to do so. It involves an envelope, a 2-5 page typewritten accounting of my current situation and how things have happened with an explianation of why I got to that point (signed and dated by myself and others who are living this mess with me), all filmwork on disks, a write on name tag sticker that says something to the effect of "My Tits Come With Instructions" and perfecting my scream ala Drew Berrymore from when she was in ET inside a medical establishment. Is it a nice idea? No... But really what is the worst they can do... Lock me in a Psych Ward (and have to run tests anyway)? Ban me from a singular hospital?
I can't be the only woman to ever invision doing something that off the wall to get answers.
Silliness aside... I will feel free to walk into the ER of the other hospital who wants me. Period. Or have any Dr I can find write the referral. Either hospital 1 picks its butt off the floor or I will be in hospital 2 within 14 days. No matter how I have to get there. If that fails I am either going for a 5 hour drive or going state side. I figured either Boston or Houston would be good places to start.
At the end of the day I have an 8 year old daughter who can't afford for me to let this slide. I need to figure this out for no other reason then she needs me here. Not to mention my fabulous hubby who I am not prepared to give up for at least another 30 years. ;-)
Shell
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Shell, I cannot possibly add anything substantive to what Binney has suggested for you, but I can say that it's a crazy world when the imagination has any reason whatsoever to conjure up the 'my tits come with instructions' strategy that you outlined for getting answers. Wow, you have been in the scary dark for way too much time already, and I just hope you find a way to push now, push hard, and insist on getting to the bottom of all this.
Carol
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Carol I am doing my damndest to get to the bottom of things... It has been a very frustrating journey.
I think the strategy started to form when a "Student Doctor" told me to get my anxiety checked when I have visable symptoms, and had been left waiting 2 1/2 hrs after the time of my appointment... Which I had been polite, sat there and said nothing during the wait.
I have found 2 routes to push hard with so one has to work.
Shell
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Shell, in the LE forum we talk about doctors denying our reality all the time. The denial of reality you are experiencing is over the top. Do keep us posted!
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Carol you made me laugh outright when you posted this... I never understood why a Dr would WANT to deny someone when they are dealing with something. I always thought the scientist in them should want to get to the bottom of things.
I should totally be use to the denial of reality from Dr's.I've never been sure if I am just lucky or if it is wide spread through the medical system. For me... It is rarely easy to figure out the cause of something. Even if I present with nearly every symptom for something.
I've had an interesting medical history that actually makes it so I tend to avoid Dr's at all cost. The sad things is NEW Dr's don't realize this about me because they don't know I fear bad news from them (and their darn white coats they all seem to want to wear around me).
If you want a giggle this may give you one or leave you shaking your head... I am use to being the crazy chick with the wierd stuff going on.
Sero-positive for Lyme.Late stage no less and managed to get well and kick it's arse. (It was better to keep fighting to figure it out then listen to them tell me they thought I had atypical MS ALS, CFS, Fibromyalgia, and Parkinson Disease all at once... in my 20's... It took years for my body to stop being able to hold it's own and start to truly fail... And yet I came back from it.).
Ultrasounds missed an appendix that was 2.5cm x 7cm. Thankfully they did laproscopic surgery and checked inside. Age 15. Turns out there was a microperforation they estimated had been there for 5-8 months. The entire time I had been arguing something was very wrong with me.
Broke the growth plate in my ankle. Must be female between 12-13 to do it. I was 12.
Shingles at age 6. Out of the blue. With 3 strains.
Osteomyelitis less then 2 years old. No known trauma to precipitate it.
I've never done a darn thing the easy way. Why start now right?
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Mini-update. First set of disks aquired.
More to come but it is a start.
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Wowsa... today brings something ever more interesting so the right one gets an update.
If I lift my arm over my head there is a vein that pops out of the skin, and it looks like someone has been having entirely too much fun with it... It is purple and mottled with areas of pink and even the yellowy green of a fading bruise which runs along the vein.
So seriously... Spider veins that are red and called telangiectasia on the left and a varicose vein with no twisty factor that pops out on the right one? Wow...
Not to mention the ever frustrating swelling in my arm, and hand... Actually I shouldn't complain. Last night I crashed at a friends place so I didn't have my typical set up for elevation only and alternated between elevating it and turning so it ended up getting a bit of compression from how I was laying. This morning I woke with my arm happier then it has been. Go figure. It was a pleasant surprise considering I had pushed past a 7.5 ring size on the ring finger yesterday... It wouldn't go past the knuckle by 5 let alone later.
*attempting to be zen and wait for Monday's CT*
Should be interesting. I find myself wondering if I should mention it to the tech or let them figure it out.
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Shell, I think you have to kick up a real stink about the care you are not receiving. I sure hope the CT scan will provide some answers and will wake up these doctors to your symptoms. Be zen today, but please be firm with them Monday. Something is most definitely wrong, and you need medical attention, like, yesterday. Good luck Shell!
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Thanks dune... I am going to get the film work on disks... then kick up the stink. ;-) That way I have copies of MY image work... keeps me from starting at point A.
At this point I'd say between that and the photo journal I have kept... Maybe someone will pay attention.
Thank you for the good luck... I will take any I can get.
Shell
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Shell, really looking forward with you to answers and a real "fix." Let us know how it goes.
Hugs,
Binney -
The photos are a great idea....you may even be able to email them to a doctor to get seen. Some of them like "unusual" cases.
Since I have very strange LE, that even a big LE expert was confused by, she said the next step was maybe someone in the vascular/birthmark field. (I have an unusual red blob on my arm nobody has ever seen before.)
This is just a wild guess, but here is the Canada infr for the vasular birthmark field. I realize it's all for kids, but maybe they will have a suggestion.
Again I could be totally off mark/useless/confusing here.
Vascular Anomalies Clinics at Hospital for Sick Children in Toronto, Canada.
http://www.sickkids.ca/PlasticSurgery/What-we-do/Vascular-Anomalies-Clin...
The clinics for children with vascular anomalies at the Hospital for Sick Children in Toronto, Canada are as follows:1. Vascular Anomalies Clinic (VAC).
This is a once-weekly multi-professional clinic and accepts all children with vascular malformations, providing comprehensive care and treatment. Selected patients with vascular tumours, referred from the Dermatology clinic, requiring invasive treatments are also seen.
2. Klippel-Trenaunay Syndrome (KTS) Clinic.
This is a once-monthly multi-professional clinic and accepts all children with Klippel-Trenaunay Syndrome providing comprehensive care and treatment. Selected patients are also seen in the Orthopaedic clinic.
3. Bone Vascular Clinic (BVC).
This is a multi-professional clinic held once every 2 months, dedicated to caring for children with joint disease from their vascular malformations.
All 3 clinics see children up until 18 years of age and, if needed, will arrange transfer of care after 18 years of age to an adult clinic.
The physician directing the above 3 clinics is:
Dr. Philip John
Clinic Director (Interventional Radiologist)
The Hospital for Sick Children
Toronto, Canada
Clinic contact information (for Vascular Anomalies, KTS and Bone Vascular Clinics):
Telephone: 416-813-5273
Fax: 416-813-6147
4. Dermatology Clinic
The Dermatology Clinic sees all children with hemangiomas and other vascular tumours.
The physician for the Dermatology Clinic is:
Dr. Elena Pope
Head, Section of Dermatology
Division of Pediatrics
The Hospital for Sick Children
Toronto, Canada
Dermatology Clinic contact information:
Telephone: 416-813-7384
Fax: 416-813-7055
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Hi Binney,
I absolutely will post updates as this goes along... *hugs*
Cookiegal that is an interesting idea... I had been leaning toward that sort of idea with the photos.
I'd personally not looked at a vascular cause for all of this but I know one of my REAL Dr's considered it which is why an echocardiogram was done. Unless the CT shows something vascular tomorrow with our system I doubt I could get a referral justified.We are all referrals all the time if that makes sense.
To the best of my knowledge my lymphatic system has always functioned as intended until my breasts started having issues. At this point in time I have been concentrating on ruling out anything immediate as far as a vasular issue and then going back to focus on the initial symptoms. The arm swelling was a symptom that came after the breast issues started. I can't help but wonder if they figure out the breast if it will stop the issue that has caused the arm. Then again at the end of the day that may not work either.
I did find a couple adult related resources here in Canada which seem to be interesting places to potentially start:
http://www.mcgill.ca/lymphedema-research/clf/
http://www.lymphovenous-canada.ca/
http://www.lymphedemapeople.com/thesite/lymphedema_treatment_programs_canada.htm
Thank you for the info though! I will keep it handy!
Shell
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Just popping in to say that I'm thinking of you!
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I'm home... CT done. They said the Dr will get the report in 3-5 days.
I got the filmwork on disk... but no go on copies of the reports. *sigh*
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Shell, waiting with you!
Binney -
Thanks Binney!
It should prove to be interesting... I want my hands on that report when it comes out. LOL no surprise there!
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What an interesting conversation I just had. 29 minutes long with the office of one of my REAL Dr's... They had faxed requests for my reports on the 7th. No reply, and no reports yet... So the requests are being re-faxed... And the CT report request will be sent again next week to get a copy of that.
I now had a Dr's office seeing the push back that I have been getting. I am seriously wondering what is in those reports!
*ponders this*
Things that make you go hmmmmm?
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Actually, it's no so much hmmmmm
, as AAAAAAAUUUUGH!
Binney -
LOL! Yes That is likely closer to the noise I made getting off the phone. ;-)
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*bump*
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Well add a new divet in my skin when I lift my arms above my head. Lefty's playing now.
*sigh*
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Shell, what word from assorted offices? You must be climbing the walls.
Could you go camp out at the office of the REAL doc you talked to last week until someone decides to do something about it? Take a picnic lunch and a good book and tell them you can wait as long as you need to, but it'll have to be in their waiting room.<Sigh!>
Binney -
Binney you must be good luck... I was told yesterday that they'd phone me when I could come pick up the reports. You posted, I saw the notification hit my email and then my phone rang.
I've made arrangements to pick the reports up in the morning so I can accomodate my existing schedule today.
Hopefully all 5 things I have asked for are there. I'll be checking that before I leave. From there I will be going right to the ID Dr's office and figuring out the next step.
Binney the picnic lunch idea entertains me. I kind of did an inperson stop off a week ago over the reports and then went for lunch... LOL! Similar.
I'll hit the thread and update when I am done tomorrow.
Shell
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Saying prayers and hoping everything is ok --cuterWCurve.....
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thanks bonseye!
Ok.... It's been a long, long day... so I am going to keep this short and sweet.
1. I was right. They tried to skip out on giving me the mamogram and ultrasound reports. Went back and got copies of it. birads 4a by the way. Glad the "Dr" wasn't concerned over it.
2. Read something interesting on the CT report... Apparently my UTERUS and ovaries are fine. Um? What? I told my one friend, and my mom that line and they had to pick their jaws off the floor. My GYN's office wants a copy for my file, and it was justification to request my scan be re-read elsewhere through another Dr of mine. Supracervical Hysterectomy June 8th, 2010... I bet my uterus is fine!
3. Spent 10 hours going through the system. Have everything sorted to be where I need to be from here on out. No more games... I am being taken seriously. Elsewhere.
4. I have multiple nodules in my lungs suggestive of either inflammation from smoking (don't smoke enough to cause that much damage - one is 2.3 cm and I am a very low volume smoker... 4or 5 a day typically who has had recent chest x-rays and noticed the new one had spots that have NEVER been on one before. Last one was in the past year...), or metastatic disease from an alternate primary location. Needs to be checked again in 6 months and watched.
So... I will be assesed. I will be watched, and I will be run through whatever tests they want to run. ER Doctor said my GYN who said to keep pushing till I had all the answers is a smart man and ER Dr agrees with him.
I'm also gonna be a good girl and pull out my nicorette. Do I know for sure if the nodules are the worst case? No. Should I Eff around with it? NO. So... There we go.
Today was long, & rough in some ways, yet it was validating and justifying in others. It is not the "best" news I could have, but it is the best end result. I was able to get things accomplished and get where I need to be.
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