Recurrence sites ?

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Squeaker
Squeaker Member Posts: 87
edited June 2014 in IBC (Inflammatory Breast Cancer)

This is mainly to my IBC vet sisters ... Anyone had a recurrence in their

supraclavicular nodes??  Waiting for results from Tu biopsies, but It's not easy!!

Came home from vacation last Fri to hear I'd flunked my annual PT scan I took

before I left. Still, I'll deal with what I need to deal with ... just like we all do, right?

Just curious if someone else has had this experience.   ~Squeaker

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  • lexi4
    lexi4 Member Posts: 1,074
    edited August 2008

    Hey Squeaker,

    I am sorry that you are having to deal with this. I am hopeful that this is a false positive and that there is NO cancer in your nodes. I hope you hear from the docs soon. The waiting is excruciating.

    Hugs and Prayers,

    Lexi

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2008
    I had cancer that lit up in scans on my supaclav nodes when I was first diagnose.  I did chemo, then mast, then rads.  When they did rads they did a really large field so they could zap all of the nodes along my sternum and collarbone.  When I went to the dr. last week, he could feel swollen nodes in this area again, but I just started IV chemo Taxol with herceptin and zometa last week.  He says that should take care of them.  Hope you can find peace while you wait for your test results!
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  • Squeaker
    Squeaker Member Posts: 87
    edited August 2008

    Well, it's offcial as of late Fri ... it's a recurrence. ##@!***##!!!!!

    The 3 nodes at base of neck on my left side are all positive. Nothing else, anywhere else for now. This comes 3 yrs 1 mo after I finished my initial trifecta of tx. I feel sucker-punched ... so focused on skin, scars and axillary areas, I never saw this coming. No symptoms and up until now it's been a busy & active summer. It's back to chemo & rads for me. Hopefully there's a trial I can get onto says the onc. I may even throw in a visit to the clinic in Houston. Everything is on the table as far as I feel for now. They're re-testing my ER/PR/HER to make sure there are no X's there. Onc says not to hold my breath, not often that a trip neg morphs to a pos - more likely to be the other way around. In the meantime, Mrs XS - get busy on your nodes and don't lose track of them! We must educate all IBCers on recurrences. I'm still sticking around, so see you all in the forums!   ~Squeaker

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  • lexi4
    lexi4 Member Posts: 1,074
    edited August 2008

    Squeaker,

    Nooooo!!! Doggone it!!! I am angry and sad that you are dealing with a recurrence. I am happy that it isn't anywhere else. That's a positive.

    I hope that the chemo and rads knock the nodes outta there. I hate you have to do this again, but I know that you are going to beat this back.

     Big Hugs to You,

    Lexi

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2008

    Squeaker- DARN IT!!!!  I am so sorry that you got that crappy news.  Fry those little buggers!  I hope that treatment works quickly and effectively and you can get back to NED real soon.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited September 2008

    Squeaker:

    I'm so sorry that you have to go through this again.  This disease really sucks!!!!

    Keeping you in my prays.

    Sunneedazee:

    Keeping you also in my prays! Hows treatment going?

    Hugs

    Laura

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  • DianeE
    DianeE Member Posts: 176
    edited September 2008

    Squeaker and Sunnee

    I have been reading a lot of late, but not posting.  I want you to know I am thinking of you and keeping you in my prayers.  I am at 14 months from diagnosis and have a PET scan in my near future and am starting to have high anxiety from it.  It just never goes away does it?!  You are strong women and we do what we have to do to stay here so keep doing!!

    Bless  you all,

    Diane

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  • Squeaker
    Squeaker Member Posts: 87
    edited September 2008

    Diane - If it helps to know or lessens the anxiety, that feeling never quite goes away and for good cause. If I hadn't have had that 'nagging sense' something wasn't right at my 3 mo check in July and even though it turned out to be somewhere else than where I thought a problem might be brewing, I most likely would not have agreed to the PET (not quite time for it) and we never would have found the recurrence until it showed up as brain mets ... or so my surgeon said when she she saw the test results from the oncs office and called!  (Hope you're not an English teacher ... major run-on there!) Embarassed

    Anyway, I had my first round of the new chemo regimen yesterday and so far ... just a headache that comes and goes. Still, grateful to be working at home today. Shopping for the new wig tomorrow and life goes on ... We all take from one another and offer where we can, so just know that scan will be happily behind you before you know it. Even if it's not so happy a result, we're still here!  Your good thoughts are much appreciated and do have a good weekend .. I plan to!

    Squeaker

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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2008

    Squeaker,

    I am happy to see your post. I am really hopeful that your new tx will eliminate all the cancerous cells. Did your pathology change? What tx are you taking?

    Lexi

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  • Squeaker
    Squeaker Member Posts: 87
    edited September 2008

    Hey Ladies - Happy Fall out there. Foggy here in the mountains this AM. It's so calming, I love it!

    I was dx 11/04 w/IBC on my RT side. Did 8 rnds of AC/T, dbl mast and rads. Only 1 node was taken from my L side in surgery. That was clean, yet here we are several yrs later w/ it now spread on my left. 4/13 nodes were pos after surgery.I am trip neg, although path on new tissue suggests it may now be ER+. Go figure. They are retesting, since it's not often it morphs that way ... or so I was told.  Time between then and now has been uneventful. 3 mo checks, TMs and a pat on the fanny as I waltzed out the door. My TMs did not spike w/this recurrence. They remain high normal - 35-37 on CEAs. Onc says he'll continue to do TMs since I'm obviously in a lower range??!! 

    I started the new drugs this past week. Carbo-taxotere-zometa. Not bad, just slight headaches and flu-like feeling in the AM. Claritin is the new wonder drug for muscle/bone aches. 1 @ day and so far, no problem. I used Glutamine before and that was just OK. I hope this will carry on as long as possible. 1 down 17 more to go!

    I think it's crucial for us all to check our scar lines and skin on a regular basis, but don't forget your neck, underarms, et all as well.. We need to know what our own bodies tell & show us. If something doesn't feel right - ask when you see your doc next.   

    So much for my Sun AM thoughts. Enjoy your day.

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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2008

    Hey Squeaker,

    Good to see your post. I hate that you are having to battle the beast again.That would be something if the new ca is er+. Maybe a new primary? Well, it would be one more weapon to fight with.

    I will pay close attention to my other nodes. I have had discomfort off and on the opposite side of my bc. Will let my onc know this next month.

    One down, 17 more to go. That's great that the claritin is helping with bone pain. I hope that it works for you through the rest of your tx. 

    Hugs and Prayers,

    Lexi 

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