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stage 4 tnbc with mets to subclavicular lymph node

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neicybroomer View Drop Down
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    Posted: Apr 22 2008 at 3:04pm
Hi everyone
 
I guess I just want to hear positives from the more advanced stage tnbc.  I was treated in 2006 stage 4 tnbc mets to subclavicular lymph nodes.  I am glad that this site is here.  My oncologist did not dx me with TNBC.  I went over my pathology report and I am negative for everything.  it's hard when you have stopped treatment and there is no medication to take.  I get down sometimes because advanced breast cancer can be a big pill to swallow.  The only person in my family that had bc was a cousin.  I have 2 daughters that are going to be tested.  I thank God for allowing me to see each day.  Believe me I am not depressed, just worried.  Talk to me my sisters and make my day.
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EWKSeattle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2008 at 3:54pm
Hi and welcome to the forum.
 
For what it's worth, and if I understand your diagnosis correctly, my onc would not consider that Stage IV.  I had similar at initial diagnosis, plus it had spread to my IM nodes, and she said it was Stage IIIC, not Stage IV, and thus potentially curable.  (Unless the mets are on the opposite side of the affected breast, which mine are now.)  I know there is dispute about IIIc vs IV in the medical community, but I'd choose to believe that it's IIIC until proven otherwise.
 
As far as positives go, despite my having been in chemo treatment for nearly 2 solid years, I am living a very full and happy life.  Not so say I don't have my moments, or entire days, when I wallow and worry, especially about my children.
 
Take care of yourself!
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2008 at 4:06pm
Dear Neicybroomer,
 
We have our "sunbearz" - search her posts and see the 10 year battles she has won over our cancer.
 
Please tell share what your chemos have been and hopefully one of our more "experienced" treatment warriors will be able to offer some more insight into your current state.
 
The wonderful thing about this site is that "been there...done that, lost the hair" really has a special meaning to us as we share the indignities of the treatments, celebrate the milestones, and comfort and support each other through the tough times.

Someone is always here for a shoulder to cry on, to answer your questions, or just listen.
 
Connie
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sunbearz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2008 at 5:24pm
 Thanks Connie for handing over this post.
Ok you are talking to a person who probably looks like swiss cheese on a x-ray.Ive had who knows how many Chemos and radiation, yes in the subclavian area. It all works.And I have a very good quality of life.I have rough times .Some sucky Chemos.
Im going on 11 years now and it hasnt been Cancer free.Im reaching out to you to think of it as climbing Mt Everest.Forget the reports.Ill take your hand and climb to the top.
Or Ill give you my life with a tumor marker of 1900.Blood work all screwed up.
Its not about a diagnosis, its what you want to do with your life.Dont let this disease screw with your mind.Listen to your body.
 None of this is your fault and we rely on Drs. Go have fun. Anyone could die tomorrow. Yesterday is gone.
 Jill 
 
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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sunbearz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2008 at 5:40pm
 Neicy, There are many treatments.We have women her who have metatises to bones, lungs liver ,brain, ovarys. Most of us are doing
fine and there are treatments. I didnt get it when you said there is nothing when you stop treatments. Why?Of course there is nothing.You Die.
Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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neicybroomer View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote neicybroomer Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2008 at 12:22pm
Thanks everyone.
I guess sometimes you need to hear the positives.  My surgeon said stage IIIC but my oncologist said stage 4.  So I look at it that I am IIIC.  I had adriamycin, cytoxan and taxol, then double mastectomy because it had spread to both breasts-mostly in the left.  More than 10 lymph nodes affected on the left side.  sentinal node biopsy on right was negative.  Radiation to the left side 36 cycles which included a boost.  I had no lumps in my breast.  I found a lump in my subclavicular area that did not hur.  I found it because my shoulder was hurting me like crazy.  It showed triple negative, it also showed negative for all markers even breast.  They found it on the MRI-the mammogram was negative-it was my first and last (lucky me).  I am lucky because being only 43 and I was dx 2 years ago, I have had both ovaries removed, partial thyroidectomy, hysterectomy, 2 corneal transplants; so I have made it this far, I know I will go further.  Thank a lot I am so glad I found this site to get the boost I need.  you all are great.
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sunbearz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2008 at 5:08pm
 Neicey, how about posting your profile.So we know what you have been through? I dont usually respond to those who dont give me a history I can look at.Just my rules.
    Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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neicybroomer View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote neicybroomer Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2008 at 6:17pm
I tried updating my profile so hopefully it worked.  Bt here is a summary.
 
dx with cancer of unknown primary 12/06 from a lymphnode bx in the subcavicular region, then by MRI breast cancer was confirmed.  Mammogram was negative, it was my first and last. Pathology report states trip neg and bcra neg Actually negative for everything that is why they were not sure where the cancer in my subclavicular region had metastisized from-but they knew it was mets.  No lumps or problems with my breasts. Dx stage IIIC by surgeon stage IV by oncologist.  had adriamycin, cytoxan and taxol; followed by bilateral mastectomy. 14 positive lymphnodes and the chemo irradicated them.  negative sentinal node bx of the right side. (most of the cancer was on the left).  bad lymphedema in left arm.  Radiation 36 cycles including boost at the end.  currently in 2nd year of remission, and shoulder joint is killing me.  had mri on friday awaiting results-praying like mad that it is arthritis. 
stage IIIC with mets to subclavicular nodes. dx 2006 at age 41. chemo:act, bilateral mast. and radiation.
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sunbearz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2008 at 7:22pm

 Im trying to  figure out what happened to you.Correct me if Im wrong.You have Breast cancer and it spread to the lymphs.Which is stage iv. Ok and they tell you your cancer free or in remission. Im still not getting it.And they dont know where the metatasis came from.Are you taking any medications? Chemos?

Ok, here how it goes, when breast cancer metastises, it goes toeither the bones, ovarys, other breast , liver, brain, lymph system.lungs, anywhere it wants to. Its the tests, blood work, and chemos that track it.
 
I just dont get your unknown Primary.Love to help you, But not enough info.You are going to find on this site that we are so there for each other.
 With metatises we know where we are.
    Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2008 at 4:42am

I believe spread to lymph nodes alone is considered Stage IIIC, but anywhere else is Stage 4.  At least that is what my onc told me as we discussed what if I'd gotten to it earlier and it had not spread from my axillary lymph nodes into my lungs.

I know of a woman who had nothing found in her breasts, but was dx by her mets to the rest of her body.  Turns out it was Inflammatory Breast Cancer.
 
All the best of luck to you,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Alma View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2008 at 12:21pm
Stages of Breast Cancer...all you want to know and more.  Alma
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote neicybroomer Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2008 at 8:01am
Okay, let me go from the beginning.  Believe it's hard for me too.
 
I found the lump in the subclavisular region.  It was biopsied.  The results of the pathology report states that it was mets from a unknown primary.  It was negative for markers from breast, lung, liver,etc.  I had to go through extensive testing to find out where it was mets from.  I had a CT scan which showed some enlarged nodes in the axilla area.  THe mammorgram showed nothing, the MRI showed tumors in the left and right breasts more extensive on the left with enlarged nodes on the left.  The PET scan showed enlarged nodes in the axilla and subclavicular area along with some changes in the kidneys.  So, with the labwork and results of testing, I was dx with breast cancer that had invaded lymph nodes in axilla and subclavicular region.  The surgeon and oncologist differed in the staging one said IIIC the other said 4.  I received chemo adriamycin, cytoxan and taxol immediately because of the extent.  I had bilateral mastectomies because the tumors were spread throughout both breasts (no lumps were ever found).  Received radiation 36 cycles plus boost.  
In a way, they are not completely sure the breast is primary, but since that is the place the tumors are it is breast cancer and was treated as such.  After surgery, the surgeon and oncologist said the regimen worked well, because they could see where the tumors in the lymph nodes were.  I hope this enlighted everyone.   THanks
stage IIIC with mets to subclavicular nodes. dx 2006 at age 41. chemo:act, bilateral mast. and radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2008 at 6:20pm

Neicy, I get what you have been through now.Your case seemed a little unusual .There are many of us at the same stage right now.I feel your frustration.Honestly, its a matter of keeping those lymphs at bay. Taxol works very well.Its called treating the symptoms. When something pops up its either radiation or Chemo.

The pathologist should be able to detemine where the primary came from.Your tissues can be examined anytime.I just had mine redone after 10 years.

Jill

Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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neicybroomer View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote neicybroomer Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2008 at 12:09pm
OK my sisters  let me throw this one out to you.  I had a MRI of my cervical spine and left arm, because my arm was hurting.  Well, I have bulging discs which I am relating to my stance.  I have to keep reminding myself to stand straight and also being a nurse all these years I think is a culprit also.  Anyway, the report also states a slightly prominent 16mmx9mm jugulodigastric node is seen.  My cancer was more prominent on the left side.  The supracclavicular node that showed the mets was on the left side.  I had previous ultrasounds and this was never seen.  I am a little nervous.  It has been 2 years since the diagnosis.  And this is on the opposite side.  Can soomeone chime in and help me out.  I see the oncologist tomorrow, but I want to hear from you.  Thanks Denise
stage IIIC with mets to subclavicular nodes. dx 2006 at age 41. chemo:act, bilateral mast. and radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2008 at 2:36pm
 Denise,I had the supraclavicular nodes radiated on the right.Showed on the PET Scan.But it had lit up for a couple of years.It was pressing on the jugular and subclavian artery.Just had them radiated recently.
 Will probably show in another area.Thats why Im on Chemo all the time.Trying to find the right one for the lymphs and bones.
  Jill
Ps I didnt really have symptoms until the nodes were about 2cm.But they grew fast between Pet Scans. 6 months.It was actually voice issues that alerted me.
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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neicybroomer View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote neicybroomer Quote  Post ReplyReply Direct Link To This Post Posted: Apr 30 2008 at 3:10am
Oh, I am understanding so much thanks.  i go to the onc today and it was more like an incidental finding on the MRI.  Since the last was on the left he probably will want to pay a lot of attention to this one on th right.  Well, I am ready for the challenge.  I am also scared, I will let you know.  Thanks a lot.
stage IIIC with mets to subclavicular nodes. dx 2006 at age 41. chemo:act, bilateral mast. and radiation.
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neicybroomer View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote neicybroomer Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2008 at 6:15am
Hey everyone

well wanted to let everyone know that I went to the oncologist and he is going to watch the new enlarged node and evaluated in one month.  Now there is another problems....My left arm has lymphedema which has been there for a while.  The MRI showed multiple tears in my muscle.  He is not sure whether it is coming from the lymphedema or not.  I have not lifted anything.  He says it looks like someone just went in their and made little slits all over my deltoid muscle.  I have an appt with the ortho surgeon on tuesday.  It is always something.  Keep fingers crossed nothing great.
stage IIIC with mets to subclavicular nodes. dx 2006 at age 41. chemo:act, bilateral mast. and radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2008 at 6:32am
Oh my gosh neicybroomer, it is always something isn't it??
 
The tears in your muscle sound painful, let us know what you hear on Tuesday.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2008 at 4:21pm
Oh Neicy,If it isnt one thing its another.Im glad your getting quick answers.Its better to know and get on with it.
   Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dawn Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2008 at 9:43pm
Hi, I have mets to supraclav nodes and I'm stage 4.I have done taxotere/avastin,xeloda/avastin and sutent little response.Just finished 8 rads to the whole neck area about 3 weeks ago.Some have shrunk but I'm afraid they will not be gone.I see onc in June for scans and then I'm sure it will gemzar/carbo.I was so hoping the rads would clear this right up.....thats my story,,,,Dawn
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