The Sword that Dangles Always

brazos58

Hello to Everyone here at BCO

Please know you have been with me thru this whole journey over the past 2 years. I don't know what I would have done without you all, this Haven and Support.

I was Dx 4/29/10 DCIS Grade 3 on Right/ Left Prophy with incidental ALH. Chose BMX w/o Re -Construction after a core biopsy and lumpectomy. I have Truncal Lymphedema and ongoing Axillary Web syndrome. I am living daytime life in 6 pieces of compression gear.

Last Fall of 2011 I had a flare up of Truncal Lymphedema. While learning Manual Lymphatic Drainage I felt a 1cm lymph node above my supraclavicular area/ my good side. This all led to an US, which found a deeper node in my neck... and onto a PET Scan. Negative.

This Feb of 2012 several more nodes were palpable on my right neck and left neck. Opted to watch being that recent PET Scan was Negative in November....and so just had another Cervical Ultrasound May of last week which is showing:

Bilateral mild cervical adenopathy ( both sides of neck have mild enlargement of lymph nodes )

and

1. a 1.6 x 1.1 x .6 lymph node next to my thyroid in infrahyoid neck. This was noted last fall.

2. a 1.4 x 1.0 x .5cm lymph node near my internal carotid artery ? new

3. a 1.3 x 1.0 x .3 cm lymph node  on the right side of my neck behind the large neck muscle/ new

4. a 2.1 x 1.1 x .06 lymph node on the right side of my neck infront of the large neck muscle... near the carotid artery bulb. New.

This is my first post to a forum. I find this more full of terror than the original diagnosis. I am waiting to see what happens next.

I also do not know if lymphedema has any thing to do with any of this.

My worst fear is that I have gone from Stage O to Stage IV

Any insight/ shared experiences needed.

Blessings to all of you.

Brazos

Leah_S

Brazos, I have no insight or experience that will help you, but I want you to know that I'm praying for you and holding your hand as you go through this.

sending love.

Leah

changes

Brazos,

I don't have any input or advice, but wanted to post so this would bump up. I hope someone comes along who can be helpful.

Karen

FireKracker

bump

blainejennifer

Brazos,

I have truncal LE as well. I have one node on the clavicle that is enlarged (on the LE side) and remains so. It has nothing to do with my current diagnosis, and hasn't lit up AT ALL in several CAT scans. My oncologist is completely unconcerned about it.

What has your onc suggested? If it is making you mental, do push for a tissue biopsy.

Best,

Jennifer

She

What happens when you do manual massage drainage?  Do the nodes decrease in size?  For your own peace of mind, why not ask for node aspiration or biopsy?  All the best, She

kira66715

Brazos, I posted in the grrrr thread. Many of those nodes are just on the large but normal size, actually they all are. The fact that they're bilateral and you've had "lymphadenopathy" before makes me think that this is all something else.

Please see a medical doctor who would do a standard evaluation for cervical lymphadenopathy--it's not uncommon--we have a ton of lymph nodes in our neck region and they drain our sinuses and head.

Limbo is the worst possible state. 

Who ever ordered the ultrasound should be interpreting the results for you and doing the appropriate testing so can put this to rest.

Hugs and let me know how you're doing.

Kira

brazos58

Leah_S thank you all the way to Israel, and for your prayers and holding my hand. xo

Changes, thank you for the bump!

Grannydukes, thank you for the bump!

blainejennifer, thank you for your experience. I did find the first node doing MLD...and ended up having a PET scan last Nov. Nothing lit up. I am a tad Mental... thinking another Pet is in store, and I just had an excisional biopsey for a axillary mass last June. Arrrgggaahh. Not looking forward to another so soon.

She, nothing changes when I do MLD. Thank you for you kind wish's.

Kira, thank you for stopping by... and for always putting yourself out there for us. I have had lab work, Shjogren, Lupus testing and all OK. Seen my Primary MD... Am waiting to hear from my Surg Onc as far as which way to proceed. I do not have a MO or RO as I went the BMX route and had DCIS gr 3. I am checked every 3 months by SurgOnc and I have been challenged with nodules/ mass's and lymph nodes since 5 months post op. Not how I thought this road would play out. I will keep you posted.

xo

brazos

madpeacock

I too can't offer any insight but please know that I am offering support and hugs. Good to know the autoimmune stuff is all normal. I have my own autoimmune issues and they can definitely be a pain in the a$$. Like others said, if it is making you mental, by all means push for testing!! You may be known as "that patient", but at least you will have peace of mind!

Karen3

Hi brazos58,

I so sympathise with you. I had a clear PET/CT last October after my second diagnosis of BC in opposite breast. Like yours, it was clean and I am hanging on to that! I am also TN and have odd lumps popping up here and there including my ribs BUT I had a BMX in December 2011 and like you have lymphatic drainage issues. I do suspect it is all connected. I am due to see my surgeon again in Sep so I will monitor until then. Honestly, my body is doing some wierd stuff at the moment and it could all drive me crazy if I let it! Funny, I thought that after treatment for BC that would be it - unfortnately this fear of recurrence is real but we just have to find strategies to deal with it until someone tells us we really do have cause for concern. As your lumps have persisted, I would be tempted to request a biopsy - just for peace of mind. All the best to you! Karen X

brazos58

Thank you All for your input, support and for just being there.

My Surg Onc feels I am ok and no need for any further testing... based on the US results. I am not pushing for a biopsey... will see what sept visit brings and another PET.

It was not written in the handy dandy post op breast cancer booklet I recieved that having a BMX was just opening a door to a whole new unknown.  I was just told you will heal in 6 weeks. Try 2 + years and curve balls every 3 months or sooner.

I should re write that booklet.

Blessings and peace to all of you.

xo