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08-19-2007, 12:38 AM
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#1
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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PMPS or Post-Mastectomy Pain Syndrome
I would like to hear from anyone who has experienced PMPS, or Post-Mastectomy Pain Syndrome. It is a chronic pain condition, typically neuropathic in nature, following surgery to the breast. It is usually characterized by pain that persists beyond the normal healing time of approximately 3 months and the pain may be characterized by numbness, pins & needles, burning or stabbing.
I would appreciate hearing from anyone who has experienced this condition. Thank you.
Maryanne
http://www.cancersupportivecare.com/...athicpain.html
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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08-19-2007, 06:51 AM
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#2
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Senior Member
Join Date: Mar 2006
Posts: 306
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I had this for about two or three yrs post my mastectomy. It is fairly common I think.
pattyz
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08-19-2007, 07:07 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Although I only had lumpectomy, I get stabbing type pain and "pulling" sensations not necessarily by the scarline but deep within where the tumor bed was.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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08-19-2007, 09:35 AM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Other than the typical "numbness" associated with mastectomy (and only felt when touched in my case) I have never had pain or sensations in either mastectomy site. Maybe an occasional "buzz" feeling but that is rare.
Great thread!
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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08-19-2007, 09:37 AM
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#5
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Junior Member
Join Date: Nov 2006
Posts: 4
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My double mastectomy took place in July 06. My expander exchange in March 07. I have had pain under my arms at the location of all 4 drains since the mastectomy. I don't have much pain other than some nerve pain in my arms that I did not have pre-mast.
I must add that 2 of my drains were in for 3 weeks after the mast. I don't know if that has anything to do with the ongoing pain. The drains were the worst thing about both operations for me. In fact, I am not overwhelmed about the results of my implants and after my husband reminded me that I would need drains if I replaced them, I had a change of heart!
Marilyn June
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08-19-2007, 02:06 PM
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#6
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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I do have discomfort in my mast area. I was really concerned that there may be something going on because of the burning type sensation. I have read that some women may eperience this. I am hopeful that it will subside over time. I am waiting patiently!
Lexi
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08-19-2007, 11:24 PM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Bouts of it (currently having one) ever since mastecomy in Dec 03.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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08-20-2007, 12:04 AM
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#8
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Links
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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08-20-2007, 05:21 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Yes, from time to time I have an ache or pain at the mastectomy site. My onc said that is not unusual and could be off and on always.
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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08-21-2007, 09:46 AM
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#10
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Senior Member
Join Date: Oct 2005
Location: southern california
Posts: 287
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Hi,
I'm so glad I'm not alone out there. Although I wouldn't wish this on anyone. I have had shoulder, arm and chest pain, tingling, numbness, stiffness, edema ever since surgery 19 months ago. I just went to see my surgeon and he said that the pain I am having is not tipical and it is a chronic condition. I asked him when I can expect it to get better? He said that it would probably not get better at this point, I will just get more used to it.
It does seem to help to keep my arm stretched, so I stretch at least 4 times a day. I also do yoga once a week and that helps. I am hesitant to have reconstruction though because I am afraid of causing it to get worse. I also am not able to wear a bra, as that seems to aggrevate everything.
I took a look at the links and the site is very informative.
Alice
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