HELP - STRANGE SWELLING

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bethen
bethen Member Posts: 82
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

HI EVERYONE

I need your opinions desperately.  Here is my story.

 Diagnosed Sept 05 with IDC stage 3, Estrogen and Progesterone Positive, HER2 positive, and 3 positive lymph nodes.  Underwent six months of chemo, followed by right side mastectomy and node dis.  Then it was off to radiation for 25 rounds, and then one year of Hercepton.  Now, I am on the five year Arimidex plan and have just completed my first four years.

 Here is the problem, I have noticed a swelling in my right side arm, so I went to the Cancer Centre and they have recommended Manual Lymphatic Massage which I will be starting at the end of the week.  However,  I have noticed a swelling BELOW my collar bone on the right side and told my Dr. and am now having a ultrasound tomorrow.  This swelling does not hurt, I can not move it and it is approximately the size of a silver dollar.  I am nervous about what this could be, maybe a reccurance or is it possible that it could be lymphatic fluid up there, the swelling is located approximately half way between my neck and armpit and is only below the collar bone. 

Sorry to ramble but I need some input,, can anyone help.

I thank you

Betsy

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  • blondiex46
    blondiex46 Member Posts: 5,712
    edited April 2010

    not me sorry and don't worry about the ramble, I do it all the time!!

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  • kjbell
    kjbell Member Posts: 974
    edited April 2010

    I am very interested to know the outcome of your ultrasound as I have the same thing! About 2 weeks after taking out the expander and putting in the silicone, I noticed a swollen area at the end of my collarbone. The onco. didn't think it was anything to worry about, so I try not to, but I still have it. It has been 4 1/2 months! It hasn't shrunk or grown. I do have some lymphedema in the same side arm. Good luck to you!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2010

    Betsy, I'm sorry about this new worry.Frown Glad you'll be able to get an ultrasound so promptly, and I'm hoping it will put your mind at ease.

    Lymphedema does sometimes present as a single swollen area, and truncal lymphedema (with or without arm lymphedema) is certainly a possibility. Hardness (fibrosis) from lymphedema can happen fairly quickly if it isn't being treated (and at this stage can be reversed fairly easily when it is treatedSmile).

    In your other post you mentioned concern about the effect of a possible biopsy when you have lymphedema. The major danger there is infection, so you could talk to your doctor about a prophylactic antibiotic for that.

    Lymphedema is usually the pits, but it's for sure preferable to the fear of recurrence, so hopefully that's "all" that's going on here. Please let us know what you discover.

    Hugs, prayers,
    Binney 

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  • bethen
    bethen Member Posts: 82
    edited April 2010

    I just got back from the Cancer Center and am now pretty upset.  They found what they called two masses in the area of concern right below my collar bone.  They ultra sounded right across the collar bone below and above as well as up my neck.  The radiologist said that all the other areas looked good, but are concerned about the two masses that are in the area below the collar bone.  Now I am being booked for a punch biopsy.  Oh, I hope it will be soon because I am just wanting the answer and am really freaked out over this. I thought that with the amount of treatment and my Arimidex that this probably would not happen again.  I hope I am wrong, but I don't think so.

    BetsyCry 

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited April 2010

    Betsy,

    I am sorry you are having to go through this.  It's all of our nightmare.  I am relatively new to all this but have been questioning every lump and bump I find, especially in that area.  I sure hope they can give you appt so you can find out what you are dealing with---hopefully nothing.

    Let us know how you are doing.

    Sharon

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  • kjbell
    kjbell Member Posts: 974
    edited April 2010

    Betsy-I am so sorry to hear that they found something. I will say a prayer that all works out well for you. Best of luck-Karen

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2010

    Betsy -- hugs and prayers, and bushels of B9 wishes!
    Binney

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  • bethen
    bethen Member Posts: 82
    edited April 2010

    Thanks very much for everyone's good wishes.  I am very worried, you all know how the waiting game plays out in your head.  I will keep you informed when I find out how long until the biopsy. I could actually see these two black shaped circles on the ultra sound monitor, one bigger than the other, but I have not got a clue as to how big they are.  The nerves have kicked in now.

    Thanks again

    Betsy

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  • bethen
    bethen Member Posts: 82
    edited April 2010

    The nerves are really kicking in even more now.  Hospital called today and told me they are also having me booked for a breast MRI.  Does anyone know how long you are in that machine, never had the breast MRI before.

    Betsy

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  • bethen
    bethen Member Posts: 82
    edited April 2010

    Well I had my breast MRI it went pretty good with the sedative they gave me.  But, today I had my biopsy, they took four samples.  I was also told that the lymph nodes that are involved are under my pectoral muscle, so they had to go in a long way to get the tissue.  The first three punches were not too bad, but then I started my stupid nervous shaking.  I noticed on the biopsy order that they said in big huge letters "Receptor Path".  Is it possible that your receptor status could change?  Next thing is the oncologist on Tuesday morning at 8:30, I believe that they give you those early appointments when they have something bad to tell you.  Is there anyone else that has anything like this.

    Thanks everyone

    Betsy

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  • SusieMTN
    SusieMTN Member Posts: 795
    edited April 2010

    Betsy - So sorry you are going thru this.  But word to the wise, try not to place too much significance on why you think they are booking you early.  I did the same thing and nearly drove myself crazy, just my experience really.   I just think sometimes because of what we go thru we read far too much into things sometimes erroneously sometimes. 

    Wishing you benign results on Tuesday and if you can try and keep yourself busy this weekend, I would say try not to worry but I know that can be an impossible task at times.  Know that there are many women here to support and listen to you.  You will be in our hearts and on our minds.  Good luck, we are here!  Feel free to PM me.

    ((((((((BIG Hugs))))))))))))

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  • kjbell
    kjbell Member Posts: 974
    edited April 2010

    Betsy-I am so sorry you are going thru so much. I too would be nervous, but it is nice to come here and vent and share and receive support. We are all on your side and praying for the best!

    Karen

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  • bethen
    bethen Member Posts: 82
    edited April 2010

    I just got the call from my Rad. Oncologist, and she did confirm that it is Breast Cancer in the lymph nodes.  She is now sending all the paper work to my primary Oncologist and she will be getting in touch with me very soon, more re-testing i am sure will be coming my way.  Does anyone know how they might treat this recurrence, do people sometimes have to do chemo again?  I am very scared right now and find myself just crying all the time. We are never ready to hear this again.  Cancer is such an ugly word.

    Betsy

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2010

    Betsy, how distressing!Frown I'm so sorry you've had to hear this rotten diagnosis again. You're so right -- very ugly word!

    My friend who had a similar recurrence did some radiation for it, but of course that could be different for you. It was very successful, by the way. Hope you have answers and a plan very soon, because the waiting is beyond ugly!

    Hugs, prayers,
    Binney

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  • Lhall
    Lhall Member Posts: 51
    edited April 2010

    Hi Betsy,

                     So sorry to hear about the recurrence trust me. Have a question I'm being tested for recurrence right now. I all so have the arm swelling. I'm wondering if you had shoulder and arm pain cause right now my systems are swollen arm, pain in shoulder and the pain goes down my arm to my hand, chest pain and have a hard time breathing when trying to do anything around the house. My lymph node are swollen a little bit under my arm. I am freaking out as well.  I'm going for the pet scan Monday morning. Everything I'm reading on it has all the systems I am having and my onc. seems to be a little worried so that doesn't help. You are in my prayers

    Lynn 

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  • konakat
    konakat Member Posts: 6,085
    edited April 2010

    Hi Betsy -- I just found your post and want to say sorry about the mets.  Although my mets isn't the same as yours I have read other women's posts that have the same thing.  They get a combo of chemo and/or rads.  Once you know what's going on please come to the Stage IV board and post -- you will get lots of information and lots of encouragement and caring. 

    Elizabeth

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  • bethen
    bethen Member Posts: 82
    edited May 2010

    So after waiting five weeks for my answer from the cancer center, and then being told last Thursday that they were sending all my paper work back to my chemo oncologist for her to decide what to do for me, I got a phone call this morning from my oncologist at 9:30 am and they asked me if I could be at the hospital by 10:20 for a CT scan.  Of course I said yes, and rushed up there.  I cannot hardly believe that a cancer center took so long to give me an answer, and then push me back to my regular oncologist.  At least with her I know she is like a pit bull and never takes a no answer when booking appts. for her patients, I think that everyone in the booking depts are afraid of her because she is able to get these appts right away.  My bone scan is scheduled for Friday at 11 am, and then I see her at the hospital  on Monday afternoon, I was told by her secretary that she will have all results and a plan for me.  She is wonderful to deal with, so much quicker than the cancer centre.  I wish I had gone back to her five weeks ago but I just figured that a cancer centre knew what they were doing.  I feel somewhat more relieved now that she is involved.  I just need to get on with this and in six days I will have my answers.

    Betsy

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited May 2010

    Betsy - I hope you get a nice clear bone scan :>  Like Elizabeth said, there is lots of support on the stage IV forum.   I just saw a great post today over there from someone who is having a great response to TDM1.....the super herceptin for her2+ gals.  It's herceptin with chemo in it....there are lots of options for you so hang in there!!!   lisa

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  • bethen
    bethen Member Posts: 82
    edited May 2010

    Well, I got my answers today.  Will start next Wed. with six rounds of Taxotere, just not looking forward to the extreme bone pain that I had the last time, who knows maybe that won't happen again.......lol  They will be giving me along with the Taxotere, Herceptin for another year.  After I have finished the chemo, then I will be getting radiation to the area, the first time around they did not radiate directly below my collarbone.  Not looking forward to being bald for the summer.  The only good news was that all my tests and scans were clear for recurrence to all other areas of my body so far.  Have a muga scheduled for Monday  and the chemo will begin next Wed.  Please wish me luck.

    Thanks everyone

    Betsy

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  • konakat
    konakat Member Posts: 6,085
    edited May 2010

    I'm sorry you got bad news Betsy.  Your treatment regime sounds great -- good chemo and rads.  It sucks for the summer, but it will knock the mets to the curb.  Good luck on Monday and Wed.  Hugs,

    Elizabeth

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  • bethen
    bethen Member Posts: 82
    edited May 2010

    Thanks so much for your support Elizabeth.  I see you are in Ottawa, I am in Toronto. Again thanks.

    Betsy

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