New cancer? Recurrence? Scared crazy!

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Bexter3
Bexter3 Member Posts: 61
edited July 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Completely freaking out! I've had 4 years of complications from IDC Regionally Advanced, triple positive, all lymph nodes on right side. Had 6 TCH, then BMX 6/7/2010, no reconstruction, then 30 rads, continued Herceptin for year, on Arimidex now (switched from tamoxifen, suspicion of uterine cancer so had radical hysterectomy). Been NED since 9/1/2010. Now have significant swollen enlarged lymph nodes in left clavicle and arm pit. They are getting worse every day. They are also very painful, which wasn't the case with the right side. I usually never worry, even when my doctors do... This time I'm super scared. I cannot put my family through this, again. I didn't even tell my husband that I've had docs checking it out (2 weeks), but yesterday I almost started crying and did tell him. Neither one of us said anything, just sat there a few seconds and then I changed the subject. Anyone had this kind of swelling, pain in non cancerous side after BMX? Arg!

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  • Bexter3
    Bexter3 Member Posts: 61
    edited April 2014

    all lesions B9! Don't know what or why, but no cancer, praise The Lord!!

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited April 2014

    That's awesome. 

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2014

    Great news, Gettinpastthis! We couldn't be happier for you.  image

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  • Stenokim
    Stenokim Member Posts: 172
    edited April 2014

    awesome!!!

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2014

    Gettin WOOOHOOOOO!!!!  Glad that you got some answers :)

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  • juneping
    juneping Member Posts: 1,594
    edited April 2014

    yay....

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  • Bexter3
    Bexter3 Member Posts: 61
    edited April 2014

    well it's been a while since the ultra sound doc said no malignancies in left lymph nodes, and things are getting worse. The masses (4) have nearly doubled in size. I have lymphedema on the right side where cancer was, so you can imagine my surprise when I woke up last Saturday with a breast on the left side.! Seriously. I called the on call do and this is how it went: me - hi, I'm going to tell you something, and then pause so you can laugh before we go further. I wok up this morning with a c-d cup sized breast, when there wasn't one yesterday. Her- pause... Anyway she said she had no idea why I would develop edema, but if other doctor didn't suspect malignancy I could wait until Monday to see doc. By Monday it was gone, has anyone ever ever heard of something like this? If I'm going to grow a breast overnight, at least it could be perky and not saggy! LOL! 

    I'm sleeping most of the time, have muscle fatigue, headaches, a mass on my left clavicle, pain shooting up to my ear, blurry vision, tinnitus, and a few more odd things. Got blood work done yesterday - tumor markers and thyroid tests. Arrrggghhh. Going crazy, praying for the best, planning for the worst.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2014

    Wow, gettingpt, that is something else! when you did the ultrasound on nodes, did they also doa biopsy? if so, i was thinking that may have caused a buildup of fluid, or a seroma, or worsening hopefully temporary of lymphedema. did they say anyting at all to you about maybe why all off a sudden so far out from treatment that your nodes would go wacko? mine did too, just a couple months ago, but on my cancer side. my docs said it was because nodes were having to work xtra hard. but really, a year and a half after treatment? and yes, they ARE painful. and i am so tired of biopsies, and how come they cant tell with ultrasound whether they are just inflamed nodes? have you seen an le therapist, or do you know how to do MLD? i will put this in my favorites, so i can see when you respond. arimidex was not kind to me, but then neither was tamoxifen, and now i have been on femara for almost two months, and am just starting with wierdnesses and xtra pains... i hope you see this post, cause i would like to know more, and sorry i missed your initial post. kathe

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2014

    when they became worried about two lumps a couple months ago, right on edge of breast, actually, rib cage, they did ultrasound biobsy 7 of em, and it came back benign glandular tissue, 3mm apiece, but palpated much bigger. i think it is because the tissue around them also gets inflamed, thus causing nerves to be bumped and stretched-then causing fresh pain! and i know the biopsies made my cancer boob swell quite a bit, and i cant do anything to resolve it, altho compression does help. any way i wish you the very best, and honest answers.

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  • Bexter3
    Bexter3 Member Posts: 61
    edited April 2014

    no Kathec, they didn't do biopsies. They just said they seemed normal. I'd do have lymphedema the right (cancer) side and trunk, now it's severe on the left. The mass on my clavicle is larger and I really am not well. Could sleep all day, ringing in my ears, headaches, painful mass below sternum, etc., etc. My gut says something is wrong... I'll kick it's butt, just don't want to put my little boy through anything else... )-:

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  • juneping
    juneping Member Posts: 1,594
    edited April 2014

    gettin - can you get a biopsy? it seems like some kind of inflammatory or infection....

    i understand about the family....i just told my mom about a month ago. and she's very sad and cried. i don't want to put her thru this again....

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2014

    gettin, i just dont understand how they can rule out malignancy without a biopsy. at least at my treatment center, they biopsy everything that seems to be behaving oddly, even when ultrasound checks out. only two of my nodes lit up, and you can see how many! i am so sorry that you are having to worry, and that you don't feel well.

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  • Bexter3
    Bexter3 Member Posts: 61
    edited April 2014

    thanks Kathec. I'm sure something serious has to happen soon. This week all the nodes in right jaw and neck huge and painful. Lumps (nodes I'm sure) around my sternum large. I don't even want to thing about it, but every node, sternum up is now crazy. Calling onc tomorrow and going to see doc tomorrow. I have no known infections... Now I'm really scared... I live in rural Colorado and we have limited resources. Steamboat Springs is now in partnership with the Mayo hospital and their ultrasound tech examined me the last time (1-2 weeks ago). Tumor markers back no later than Wed. 

    When you first learned cancer invaded your body, did you "just know?" I did. And I'm 90% sure! this is a second cancer. Ugh. I hate limbo land. Waiting... I am the most impatient person I know, LOL. But I know I'll win. My son was 6 when I was first diagnosed and since then has been hell. I was just getting my life together, and now this... Well just another test from God.

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  • Bexter3
    Bexter3 Member Posts: 61
    edited April 2014

    Gettinpasthis was too darn long! I used to only lurk or encourage, now that I'm freaking out I decided my login was too long (-;

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited April 2014

    Bexter, I read all of the post here earlier in the day. Then it took me a minute to figure out its you... Yes, my chemo brain slows me down...lol

    Sorry you are dealing with this chit again. Waiting is the worst...I become so anxious, I am much better at dealing with treatment. Keep posting, lots of love & support on these boards. 

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  • Bexter3
    Bexter3 Member Posts: 61
    edited April 2014

    Holeinone, thanks. What scares me is how fast things are changing. In 6 weeks I've gone from, " hmmm a clavicle node, never felt that before" to "oh my hell, every remaining lymph node sternum up is so swollen my neck and face seem mis-shapen."  They told me the cancer that invaded my body (I never own it by saying my cancer" was so aggressive, it appeared to go up a stage every 4-6 weeks. How do I get the doc to say, hmmm this is a potential problem? What can I do to let my new primary care physician realize this is disturbing? 

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  • Bexter3
    Bexter3 Member Posts: 61
    edited April 2014

    Kathec, I know, I've always been told no one can tell something is malignant or b9, without looking at it under microscope... But, like I said we have this new expert and her word is golden to the docs out here.... I love you ladies!!

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited April 2014

    Bexter, I would be freaking out also. Do you still have the oncologist that you did when first dx? I do not know how long we stay with them. 

    I have read here about ladies having similar swelling and pain, and turns out to be a weird infection/inflammatory thing. 

    Keep calling whomever you think will get to the bottom of this the fastest. My surgeon was wonderful. I would call him before my oncologist. Do you have a Dr. that you have a connection with? 

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2014

    bex! holeinone has some very good things to say! maybe your body is fighting something off, but i would go plant myself right in front of them, and make them look! cause it would scare me, personally! we are not born lumpy! hope it is just an inflammatory condition of some type, easily resolved. Everything that you have done to fight this is powerful medicine, are you still taking arimidex?

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  • Bexter3
    Bexter3 Member Posts: 61
    edited May 2014

    thanks everyone! Unfortunately, the entire area, all lymph nodes cheek to clavicle, on right side (previous cancer side) are so swollen, it looks like deformed. Some so the nodes(?) are over and inch. My docs say it's nothing, although they haven't seen me in the past 3 weeks. My sister is nagging me to keep bugging them because that's what happened to her "it's just a cold" "it's probably mono" etc. When it was really lymphoma. So, am following her advice and I'm sure my onc nurse is pissed off. My PCP has been short fused and telling me it's nothing. Nothing? My face and neck look deformed, I sleep for days at a time, I've dropped almost 9 lbs. I talked with a different onc nurse today and she said I should be seen immediately. So, I'm going to see if I can see my onc in Denver. I fricken' hate cancer. 

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  • Bexter3
    Bexter3 Member Posts: 61
    edited May 2014

    yes I am still on Arimidex. The cancer that invaded my body was so far along AND aggressive that I will be on it until 2021, yay... (Dripping sarcasm) 

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  • Bexter3
    Bexter3 Member Posts: 61
    edited May 2014

    after every test in the book... I have mono and severe NECK & FACE LYMPHEDEMA!!!!!! What? I've had arm & truncal lymphedema, no neck? Crazy.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    please if anyone has this in your faves, Bex could use some encouragement. Hug for you, bex, that is awful, and a hard row to hoe.

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  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited June 2014

    Bex- Hope you are doing better!!  I too have arm/truncal lymphodema but neck and face ! Wow... That is the pits. What are they suggesting to control that?

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  • Bexter3
    Bexter3 Member Posts: 61
    edited June 2014

    thanks Kathec. Trying to keep my head... I've always been so strong willed, I never imagined that cancer would take everything in my life and leave me a cracked shell of what used to be. Cancer sucks.

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  • Bexter3
    Bexter3 Member Posts: 61
    edited June 2014

    nobody knows anything. My lymph nodes are gigantic and my neck and right cheek looks deformed... Honestly, I just don't even care anymore. Really.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2014

    Bexter, I sure do hear you. Head and neck LE is really a blow. But if that's the diagnosis, there really is help available. Here's a start, a simple but effective self-massage routine for head/neck LE:

    http://www.aurorahealthcare.org/fywb_pdfs/x23169.p...

    http://www.aurorahealthcare.org/fywb_pdfs/x23169.pdf

    When you try it, sit down and take several deep, slow belly breaths first (helps stimulate the largest lymph vessel in our bodies so the whole lymph system can move better). If you have music you like to relax to, put that on. Take it slow and VERY gentle. Lymph fluid is a slug, and we have to respect its pace in order to move it on out.

    Give the self-massage a try before bed for a few days, then plan to elevate your head and shoulders slightly at night (you can raise the head of the bed four inches or so on bricks or a couple of books), get some sleep, and see how it goes. Throughout the day, do the first step of the self-massage (clearing the nodes, a through d) whenever you think of it. And be sure to stay REALLY well hydrated (helps to dilute the lymph fluid and keep it moving).

    Please know you're not alone! Gentle hugs,
    Binney

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    binney, i clicked onto that link, and it takes ya to aurora health, but it says page not found, and the cursor wouldn't let me click or write in the search bubble. But the rest is very good info in general that you gave bex, and i am going to go try it myself too. Bex for sure you are not alone, and i wish they could figure out what to do to help you. but we are here to listen and encourage you...im so sorry.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2014

    Hmm, weird. It's a PDF file. Let's see if I can get it to work.

    http://www.aurorahealthcare.org/fywb_pdfs/x23169.p...

    http://www.aurorahealthcare.org/fywb_pdfs/x23169.p...

    If that doesn't work I could try sending it as an email if you want to PM me your email address, Bexter.
    Binney

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  • Bexter3
    Bexter3 Member Posts: 61
    edited June 2014

    you ladies are the best. I'll let you know what my doc says tomorrow. I have a feeling it's going to be... Primary doc: well Arimidex is your oncology docs drug, so call him. (Which I did and he told me to see my primary). Then since I tapered a pain drug that brought about severe problems, I'll be told to talk to my pain doc, who's gone for 2 weeks. About not being able to walk from poorly healed broken ankle (4 places) last August, I'll be told to see that doc, who's on vacation for 2 weeks. Frickin merry go round where no one wants to make any decisions that might step on toes, meanwhile, I sit hear contemplating ways to take my life... Which I won't don't worry. Would hate my son to think his mom would do such a thing. Even though he told me in all his pre-puberty jerky-ness that our family would be better if I had died... He has since apologized, but I know there is truth to the statement. Again, just a funk, I'll get out of it...

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