Just need to vent...

MommaG

I really just need a place to vent.....all other venters welcome too!  I recently got my pathology back from my surgery and it's not so good.  The margins from what was taken from my breast are great....4mm clear all around.  The bad part is that 35 of 35 nodes taken tested positive for cancer.  My arm is beginning to swell and is causing me some pain AND everytime I call one of the many dr's involved they toss me to the next one or tell me "you are meeting with radiation on Wednesday.  Get them to check it out then."  I also have nodes above my collar bone that are swollen...they were noticeable before surgery but now are bigger....I'm hoping they are just part of my swelling arm and aren't more cancer...fat chance though since all my nodes removed tested positive.  I effin hate cancer!!!!!!  I have 2 young kids and just want to get better so I can be here for them...I love them more than anything in the world!!!  Thanks for listening...that feels a bit better.

eulabt

Vent away. You have every right. Keep after your DR's. It is their job. Hugs

clariceak

Since you had a large amount of nodes removed, there is a risk of lymphedema which causes the arm to swell.  Is the arm that is swelling on the same side as your surgery?  Cellulitis is a concern as well.  I would suggest heading over to the lyphemedema board (bc.org has a board for everything!) and see what they think.

Sorry you're getting the brush off from your team.  There are too many young mothers with bc on the this board.  It shouldn't be happening!  I see you are TN.  Are you confident in your onc's ability with TN patients?  

Keep coming back to this board.  We're all here for you.

MommaG

clariceak-Thanks for the advice...I will check out the lymphedema board.  As for my onc I was confident with him and heard lots of positive about him but I'm losing my confidence.  According to my pathology the chemo really didn't do anything for me.  My tumour was shrinking but the last couple treatments there wasn't much change...now I'm wondering why he didn't change my chemo.  I'm hoping radiation is going to take care of what's in my nodes and also keeping my fingers crossed for no mets.....I'm not very hopeful though about the mets.  I'm just hoping there is still something that can be done to make up for what feels like lost time.

clariceak

I have a friend who has TN.  She has had numerous unexplained swelling in lymph nodes since dx and treatment, yet none have been mets.  Although we always hope for a complete response to neoadjuvant chemo it's not possible for everyone, so on to rads.  The fact that your tumor did respond to chemo is a positive sign. 

Anonymous

Ok am not on here enough to know what you mean by "TN"?  --thanks

clariceak

Triple Negative

MommaG

Thanks clariceak...I really needed to hear that.  I feel like 10lbs have been lifted from me...it's almost relief to hear that there is a possibility that I could have no mets.  I can't wait for wed. when I go to me radiation appt.  I'm pushing for something to be done asap!  My kids need me....and I need them.

christine47

MommaG, big hugs to you!!  You vent all you want here.  I hope your Rads doctor can answer some of your questions this week.  Try to enjoy the week with your children getting ready for the holiday.  How old are your children??

bedo

I am hoping that the nodes above the collarbone are just reacting to surgery and trying to do their job.  You can page him after the office closes and he will answer you if you are comfortable doing that.

Laurie09

{{{Hugs}}}

FWIW, I had some swelling and a heavy feeling in my surgical arm for the first week or 2 following my mastectomy/axillary dissection.  I was seeing a lymphedema therapist at the time proactively, and she assured me that it was normal immediately post op to have some of that.  It's longer term when you start to get concerned.  

I hope the radiation oncologist can answer some of your questions.  If not, don't hesitate to ask again until your questions are answered.

jennyboog

I'm sorry mommag....it's good to vent so feel free anytime here.  I also have 2 small kids and know how you feel.  Jan. is my BMX anniversary and I'm sorry to tell you but my arm still bothers me at times, it was hurting everyday until recently.  I've had minor swelling in random areas only a few times and they say I don't have LE.  I tell them it aches and hurts all the way up my neck and even though that area not overly swollen it can be a little puffy at times.  This is just my theory but I wonder if the other LN have to take over the job since the others were removed, I don't know.  I hope you get some answers soon or find relief.  I just wanted you to know you're not alone and it's possible it might not be mets.

mrsnjband

MommaG, you've come to the right place to vent. I would definitely check out the lymphedema.  

If you aren't sure about your treament being triple negative you might want to check into MD Anderson  teacher I work with went there. I didn't realize I was triple negative because my doctor never referred to as "TN" just that I was pr-/er- & her2-.  

Hope that your arm gets better. NJ 

BlueCowgirl

(((MommaG)))

I am not TN, but wanted to say that I have experienced swollen, tender superclavicular (above the collarbone) nodes, as well as "suspicious" neck swelling that won me a scan, and NONE turned out to be mets. As I understand, this is not uncommon. Hoping and wishing the best for you. 

MommaG

Thanks to everyone for the words of encouragement.  It really means a lot.  Tomorrow can't come fast enough...I need some answers.

Christine47-my kids are 7yr and 2yr.  They are so much fun and I look forward to seeing them get older.

jennyboog- I'm really hoping that these LN are just working harder to make up for all the nodes I lost...it's just so nerve wracking not knowing.

BlueCowgirl- I'm hoping for a scan but at the same time I don't want it to delay my radiation.  It's almost like winning the lottery when you get to have another scan!

Thanks again everyone for listening to me rant.  Hugs to all!

pupfoster1

((((HUGS)))) Momma,

I'm so sorry you are getting the run around.  Sometimes I think the docs are so busy rushing from one patient to the next that they forget we are mothers, wives, humans for God's sakes and are STRESSED OUT by all of this!   Make your voice heard and definitely get that arm checked out asap.  As many of the others mentioned it could be lymphedema and you don't want to fool around with that.  Also you should at some point soon get fitted for a LE sleeve.  I must admit I don't wear mine much anymore, but if you fly you really should have one.

Let us know how you are doing.

Sharon

MommaG

Went for my mapping today for radiation...they bumped me up so I start Jan. 3rd instead of the 10th.  Surgeon booked me a bone scan for tomorrow to check for mets and waiting to hear about a CAT scan. And the radiation dr. thinks the arm pain is from the swollen nodes in my neck....here's hopin' those nodes are just doing their job and aren't full of cancer....the rads doc says they feel suspicious though.  Might be starting chemo again as well....we'll see what is decided.  I just wanna feel better again.

clariceak

I hope you have good news from the bone scan.  This must be so stressful to be going through additional tests so close to the holidays. Let us know how you are doing.

 P.S. Sorry for not responding earlier. It was one of those crazy days.

pupfoster1

Hi MommaG,

Shoot, the waiting is the hardest part isn't it?  I'll be praying for you that things turn out OK.

(((Hugs)))

Sharon

MommaG

I am hoping my bone scan went well.  Have to wait to hear from the dr. but when I was having my scan done the tech said they might also want to do a CT at the same time if they needed a better look at something.  Well...they ended up not doing a CT so I am hoping that's a good sign.  Just hate waiting.  I do feel a million times better though today.  Some relief I guess that one scan is already done.  Thanks for hangin' in here with me!!  You gals are great!

bak94

MommaG-that sounds like a good sign. Do you find out the results tomorrow? When I had my first diagnoses in 2002 I had a bone scan on Dec. 24th! The people were so nice. They told me to have a seat in the waiting area and had me wait for what seemed like forever. Well, I had no idea then but the doctor was going over the scan so he could give me the news before Christmas! He came out and said all was clear-I was so relieved and was able to enjoy the holiday with some good news. I am hoping you get the all clear and can forget about cancer for a few days, or at least put it in the back of your mind!

jennyboog

Waiting with you and giving you big 'ol hugs!

MommaG

Hello all!  I hope everyone had a fabulous Christmas and enjoyed the time with your families!

Still no results from my bone scan but I should find out tomorrow because I'm meeting with my onc.  I ended up going to ER for the pain in my arm and they found out that I have a blood clot...not sure if this is better than lymphedema but at least I know what's going on now.  The pain is horrible at times though...not even percocet helps that much.  I'm on blood thinners now until I meet with the "clot specialist".  Hoping the thinners will break up the clot and I'll be good to go!

How is everybody else doing?  Holiday hugs to you all!!!

MiniMacsMom

Momma, I hope everything turns out great on you scans. I just wanted to let you know that subclavicular nodal infection is scary but doesnt have to mean mets. I have 4/13 lymphs infected but post surg at my second opinion at MDA they found an infected one under my collarbone. Went though all the scans and no mets! I hope ur lymph isnt infected but if it is... It might not mean mets! Best wishes at you appt today.

pupfoster1

Hi MommaG,

Thanks for the Christmas wishes.  I too am having some issues and having an MRI next week.  Yes that waiting is the hardest part isn't it?  But I do feel, at least, that we are being taken seriously and feel some small bit of control in all this crap.

Waiting for good news from you tomorrow!

Sharon

MommaG

My bone scan is CLEAR!!!!!!!  Best news I've had in a long time.  I'm scheduled for a CAT scan on Jan. 4th and hoping for the same good news.  Hang in there Sharon!!!  Let me know how things go.

Anna

Momine

Momma, Way to go!

jennyboog

YAY Anna!!! Congrats, great news.

Joan1

Hi There

Huge well done!

Fabulous news for us all!

J

CherylinOhio

Good news Anna!!!