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Old 04-02-2013, 11:53 AM   #1
Kellennea
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Join Date: Sep 2011
Location: Mt. Prospect, IL
Posts: 177
Re: Pain months following treatments

I am 2.5 years out from surgery and experience the same pain. My breasts have always been tender, no matter where I was in my cycle. My breast center uses the digital breast tomosynthesis machine now and that makes me feel waaaay more comfortable about results. When first Dx'd my tumor wasnt visable on a regular mammogram machine so I had to have an US to find it. Every six months I complain about the pain near my scar area and armpit and every 6 months I am told that it's scar tissue. Check with your breast surgeon for sure though!
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10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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Old 04-02-2013, 12:50 PM   #2
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: Pain months following treatments

I still have pain in my left arm. They removed 21 lymph nodes. Don't think they do that anymore. Sentinel nodes. Anyway, especially when lying down, I get really bad pain throughout my arm. Sometimes I boost it up on a bolster pillow. I rearrange my 3 pillows for my head (hard, medium and super soft). I use a neck U (like the one in the airports) only I use it in bed. With the rounded part beneath my neck. I try various positions and finally get comfortable.

Some pain in armpit still. Tram flap breast (foob for fake boob) has no sensation. I still have pain where my 12 yr old port was. That was my 2nd port. It is scar tissue.

I always report every symptom to my onc. I bring a list, not to forget anything. Not to complain, but to do my job and be responsible and report it.

After Taxotere I would occasionally experience deep muscle pain in my legs and arms YEARS OUT... I know this sounds crazy, I'd begin, and I'd report to my onc. NO, it's not crazy. Many patients tell me of the same experience. It was comforting to know I wasn't the only one. It took yrs for it to stop. That plus my Carnitine, Coenzyme, Alpha Lipoic Acid combo. (See WHY I TAKE SUPPLEMENTS thread for more on that...)

I developed severely dry super dry eyes from Taxotere. Lived clenching a tissue perpetually, even throughout dinner, which makes it really difficult to cut your meat. Friends would question if it was psychological/emotional. No. I have an excellent attitude. Use huge amount of eye drops and manage to not tear all day. Or have that pain like there's ground glass in my eye.

I HAD VERY DENSE BREASTS. SOMETIMES REQUIRING A SECOND READ @ MAMMO. I HAD A CLEAR MAMMO THE AUG BEFORE I WAS DX. I HAVE LOBULAR BC. A RADIOLOGIST'S WORST NIGHTMARE I'M TOLD. IT HIDES. YOU CAN'T SEE IT AND WHEN YOU DO -- IT IS HUGE.

SO I GET THE MAMMO AND A SONO ANNUALLY. HAVE A CHEST/ABDOMEN/PELVIC CT NOW ANNUALLY -- (BEFORE EV 6 MNTHS, BEFORE EV 4 MNTHS, BEFORE EV 3 MNTHS, BEFORE EV 8 WKS.) I LIKE THE DOUBLE CHECK AND I SPACE THE CT MNTHS AWAY FROM THE MAMMO.

I DID SEE MY BREAST SURGEON EV 6 MNTHS, AT HIS SUGGESTION. BUT I'VE STOPPED THAT. Believe it or not, my wonderful breast surgeon passed on. I outlived the breast surgeon! And 1 cancer center! Pretty amazing I must say.

Report everything. Get a sono w/your mammo. That's what I think.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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