Not supposed to be part of the 2% chance of recurrence

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angielee
angielee Member Posts: 24
edited February 2015 in Not Diagnosed With a Recurrence or Metastases but Concerned

I haven't been on here in a while, but I know I can come here when I need comfort and empathy.

I have been having pain in my left armpit. It isn't constant, it comes and goes. I went to my primary two weeks ago and was told it was a pectoral muscle strain and to take anti-inflammatory medications for 10 days. I did as I was told and the pain never changed.

In addition to the pain I have very swollen "vessels" in the area on the inside edge of that armpit. You can feel multiple thick soft ropes of vessels, whether it be lymph or circulatory I wasn't sure. Those are tender to the touch. Within that tangled mess of "vessels" is a tiny hard spot, the size of a grain of rice.

I saw my BS yesterday. At first she was confident and saying something is probably just irritating my lymph system in that area, maybe my implant is leaking. Then she felt that little hard spot and her face changed, you know what I mean. Her words weren't matching her face. I could see her expression change to concern but she looked me in the eye and said she wasn't concerned.

She ordered MRI and ultrasound. It says on the script r/o recurrence, even though we never talked about it possibly being a recurrence.

I have no breast tissue left for there to be a recurrence. I had a mammogram post mastectomy at my BS insistence when I had a lump appear on my foob. Believe me the mammogram folks were not pleased with needing to do the test. That mammogram was clean and showed I had 0 remaining breast tissue.

I called to schedule the tests and of course the soonest I can be seen is 2/11/14, two weeks away. All I can say to that is ugh.

I had DCIS. This isn't supposed to be happening again. The DCIS was from skin to chest wall. The DCIS wasn't detected on previous MRI, only pathology could see it. That is why I opted to a mastectomy, the scans weren't reliable in my case. Now here I am waiting for a scan that may not "see" what's going on.

They tell you there is a 2% chance of recurrence s/p mastectomy for DCIS but if you come to these discussion boards you realize it is more common than they let on. Am I about to be part of that 2%?

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Oh, we are sending you hugs, hugs, and more hugs to deal with the next weeks. Did you get yourself on a list in case of cancellations? They may have that. In the mean time, try hard not to go to that scary place. We'll all be here to guide you through the anxiety and testing. Big hugs!

    The Mods

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2015

    Angielee - Sorry for the angst. It sucks. Worry about this stuff is the gift that keep on giving, huh? Honestly, in reading your stats, I think you have every reason to be positive that is it something other than BC. Take it a step at a time and don't go there yet. 98% is a pretty big number and 2% is pretty small. We're hanging with you. Let us know how everything goes. Gentle hug.

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  • angielee
    angielee Member Posts: 24
    edited January 2015

    Thank you kindly! My amazing breast cancer navigator was able to have my appointments moved up to next Wednesday And Thursday. So progress alone is making me feel better!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2015

    Keep in mind that the gals who post tend to be the ones with problems! The vast majority who are fine we never hear from. Two weeks sure seems like a long time to wait for a follow-up appointment.

    That being said, it is not really possible to remove every single trace of breast tissue. Also. imaging studies cannot detect microscopic tumors: they have to be big enough. MRI is sensitive but not specific, meaning it sees things however, if biopsy is not possible, it can be hard to know what they are. I get scans in order to demonstrate stability in an area of fat necrosis as well as for lung nodules.

    Your lymph system might be acting up - perhaps a physical therapist or LE specialist could evaluate the armpit? Our lymphedema forum here describes a "cording" phenomenon which some will experience after surgery. Stagnant fluid does lead to fibrosis (hard lumps) although that usually takes a while. The discomfort/pain of swelling is often intermittent. Hang in there & it will get better.

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  • TB90
    TB90 Member Posts: 992
    edited January 2015

    Angielee:  I was thinking exactly the same thing that vinrph referred to above.  Axillary web syndrome.  The tenderness, web of prominent veins, and often a lump present, describes this condition.  I just had mondor's syndrome and recently read up on all things related.  Seems to be quite common even months post mx.  One site that I found even mentioned that women often worry about a recurrence due to the presence of a lump.  Please try to relax a bit, but it is so difficult.  We are always on the look-out for things more serious, that sometimes we miss the obvious and less serious Smile.  Good luck and please let us know how you make out.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    AngieLee, what a relief to get the appts. moved up. Now, I hope you can breathe again, relax a bit and enjoy the weekend. Let's all hope it's AWS as described above. Take care.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited January 2015

    Angielee. ((Hugs)). I hope it turns out to be nothing. NO one should make up that 2%.

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  • angielee
    angielee Member Posts: 24
    edited January 2015

    I truly have missed the support of this board. I hadn't heard of AWS before now. I just spent time looking it up and although I am nearly two-years out from surgery and most of what I read seemed to be closer to surgery. Everything else sounds just like AWS. You ladies sure do know how to make a girl feel better :) I am so glad I decided to post here today.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2015

    I have a little lump in my pit as well. I am going back in 7 weeks. I have noticed plenty of swollen lymph nodes on the boards. Lymph node reccurence is relatively rare, so I am going to assume a decent number of us are B9.

    That is my story and I am sticking to it.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2015

    cookie - Hanging with you, too. Yep B9, absolutely. Hugs.

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  • angielee
    angielee Member Posts: 24
    edited February 2015

    Symptoms have been getting worse. Pain down my arm, sharp electric nerve type pain. My pinky and ring finger are intermittently numb and it causes my trouble when typing. I was thinking (you know self diagnosing) that if this is axillary web syndrome the swelling is pressing on my ulnar nerve resulting in this armpit pain that goes down my arm to my fingers.

    I had my MRI today. Breast Cancer navigator called to say it was "normal". My BS was looking for a possible implant leak. MRI says no leak. MRIs have been "normal" in my case before and there was cancer present, a large amount. I am at a loss. I suppose I shouldn't be surprised, nothing has been easy during this journey.

    Ultrasound tomorrow. Let's hope for some answers.

    Thanks everyone for listening and as always supporting :)

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited February 2015

    Congratulations on that normal MRI (I think): at least there was a prior study to compare! Ouch for the shooting pain & finger numbness. Sounds like nerve impingement is a possibility...

    Hope the ultrasound shows something that can be fixed easily.

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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited February 2015


    Hello friend.   This is your post and I don't want to steal your thunder but I truly feel your pain. I went to the Radiologist for the 3 month check. He found "something" . He scheduled for the next day a diagnostic mammo, sono if needed and biopsy of needed . Sadly I had to postpone the apppt for a few days because I have an elderly, loving mother-in-law with a heart condition and needed an urgent visit to the cardiologist. I figured I won't die in 4 days but she might. So if the mammo is clear on Tuesday , all is good , if not I will have a week of misery waiting.

     I have had the max radiation allowed so if this is recurrence there is no other choice but mastectomy. I was told that I had a 92% 5 year survival rate. Now I understand, survival is not the same as recurrence. I never asked for the % of recurrence. I have researched and found I have an 11% chance of recurrence the first 5 years. NO ONE told me that.

    So, this "something" will hopefully be nothing but regardless, the beast is always lurking and this sucks.

    BTW: I mentioned the upcoming tests to only one family member, The reply was "Well,I am always nervous when getting a mammo and so is everyone else" . REALLY!? She thinks the fear connected to a routine screening equals the fear of recurrence?

    Angielee, I will be thinking of you and you think of me ok.

    I send you a gentle hug.

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