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Old 10-29-2012, 12:51 PM   #1
roz123
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EXPANDER PAIN...14 days post op

hi all
i was wondering if those who had TE's can tell me their experience. I am 14 days post op and still in a ton of pain. The "iron bra" feeling is still bad. I feel like i am carrying 2 bowling balls on my chest. I am still on pain meds.
My surgeon/nurse said this is unusal and told me that they will assess me at week 3 - i can't imagine this is normal.
the surgeon put 180cc in each expander at surgery, they removed 30cc but it did not give me any relief

i would love to hear your expander story (good or bad)
__________________
diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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Old 10-29-2012, 05:35 PM   #2
twosenuf99
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Re: EXPANDER PAIN...14 days post op

Hi i did have expanders put in Oct 2011 and exchanged for implants in August of this year. The iron bra feeling did not go away at all. The pain of being expanded was torture, I had the dr do 120 ccs each time so that I could finish quicker which could account for some of my pain but not all of it. Personally the implants don't feel much better. But that is my opinion. I still feel like I have 2 bricks on my chest. Good luck and keep me posted how you are doing..

Sending you hugs
Tracy
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Baseline Mammogram November 2010, found 2 suspicious calcifications (right side).
Second Mammogram April 2011, found 2 masses in the right breast, 1 in the lymph node and 1 in the left breast.
3 Biopsies May 11, 2011
Diagnosed right Invasive Ductal Breast Cancer which spread to my lymph node 5-13-2011.
Between Stage 2 and 3 with tumors grade III. ER/PR- but Her2neu+++
PET Scan clear
Breast MRI showed 2 masses in left, 5 in the right and 2 in the lymph node.
Biopsy of left mass benign
Joined clinical trial which required second biopsy of one of the right masses
Port placed May 27, 2011
Began Chemo (Taxol, Herceptin and Tykerb) on June 1, 2011 - September 12, 2011
Bi-lateral Mastectomy with reconstruction (expanders) October 3, 2011
FEC 12 weeks
Radiation 6 weeks
Herceptin 8 months finish September 2012
Exchange surgery August 3, 2012
Been NED since October 2011
Lymphedema right arm since Nov 2013
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Old 10-29-2012, 06:00 PM   #3
jaykay
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Re: EXPANDER PAIN...14 days post op

I"m almost 3 weeks out from surgery and still feel like I have a horse sitting on my chest. But it's better than the elephant that was there. PS said it was normal; imagine severely pulled pecs. I started wearing a sports bra a couple of days ago and it has been helping. I don't know why...

I'm not on pain meds, but am taking Aleve. Tbh, doesn't really help!

I literally feel your pain, hang in there

Janis
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Old 10-29-2012, 06:24 PM   #4
starwishn2
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Re: EXPANDER PAIN...14 days post op

I had a bilateral mastectomy in July of this year. The expanders were "put in" at that time. The scar on my right breast did not heal quickly so I didn't receive any saline until September. The first expansion didn't bother me at all. The doc put in 120cc's in each. I had another round last week - right before chemo. I now know that elephant feeling!! I'm not sure I want any more expansion. I've heard the implants are easier. That's my hope! Apparently nothing about this process is easy or comfortable! Best of luck!
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Diagnosed 16Dec1993 ITP (auto immune disease - low platelets)
Splenectomy 11Nov2009
Rituxen May2011
ITP playing nice
Diagnosed 3Jul2012 BC

2 cm - Grade 2 - Stage IIB
HER2+++

ER+/PR+
bilateral mastectomy 20Jul2012
Metastasized cancer found 1 lymph node
expanders placed during surgery
TCH chemo "cocktail" started 24Aug2012
every 3 weeks - 6 treatments
Herceptin - 18 treatments
LAST treatment Taxotere & Carboplatin 7Dec2012 -yay!
Continue with Herceptin 26Dec2012

Started Arimidex 01Jan2013 (for 5 years)
Surgery to remove expanders/reconstruction 18Jan2013
Infection in left breast from reconstruction/infection in most nails - SO many meds! 22Feb2013
Left implant not playing nice.... might need to remove and try again - blah! 04Apr2013
3Jul2013 - one year since diagnosis - booo cancer!

15Aug2013 LAST chemo infusion!! YIPPPEEE!!!
13Sep2013 2nd reconstructive surgery.. the FOOBs are looking good!



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Old 10-29-2012, 11:32 PM   #5
KsGal
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Re: EXPANDER PAIN...14 days post op

The first month I had my expanders they did hurt. When I went in for my first fill, they immediately felt better. My plastic surgeon told me that sometimes there is a wrinkle in the expander that can cause some discomfort.
I know you might think this is odd, but right after I got my first fill I found out I was stage IV, and I went through a period where I thought there was no point in continuing with the reconstruction. I suppose it was a part of my depression. So now, a year out, I still have my expanders in there with just two fills. Im just now to the point where I am scheduling my next fill, and the doctor says I am about halfway finished. Anyhow, my point about that is that heavy restricted feeling doe not really go away even after a year, although you do adjust to it a bit more.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 10-31-2012, 03:16 PM   #6
yanyan
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Re: EXPANDER PAIN...14 days post op

The tightness and pain seem to be common in the 1st few months but do watch for signs of infection. I still have my expanders in after 1.5 years ( sigh )
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 10-31-2012, 03:52 PM   #7
LeahM
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Re: EXPANDER PAIN...14 days post op

I have had my expanders in since May 31 and expect them to stay in till next summer. I had them expanded very s l o w l y, what's the rush? 60ml at a time, with at least 10 days between visits. I found that to be tolerable but really for at least two months I was very uncomfortable with them and slept on the recliner chair.

Now, they really don't bother me at all. But I think that makes me one of the "lucky few". A local friend had all kinds of discomfort with them, but she had more nodes removed then I did and I can't help but wonder if that was what made it more uncomfortable for her.

I just think they are weird, they don't move. I say I have tupperware inserted in my chest.

Leah
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39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 10-31-2012, 11:00 PM   #8
Joanne S
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Re: EXPANDER PAIN...14 days post op

I know just how you feel. Don't worry, the tightness is definitely expected. You may not realize, the pectoralis muscles were cut to make an envelope for the expanders (expanders are under the muscle)---the expanders are putting a lot of pressure on those muscles and chest. I always felt like I had a bra on that was six sizes too small. In time, the muscles will stretch, but it's a slow process. I found putting less saline in at each expansion made it a little more tolerable for me. Hoping you have a smooth surgical healing and expansion recovery. Hugs, Joanne
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Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 11-01-2012, 07:30 AM   #9
snolan
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Re: EXPANDER PAIN...14 days post op

If it doesn't clear up soon I would recommend going to see a Physical Therapist who specializes it womens issues (ie lymphadema/breast cancer) You may need some soft tissue work to help loosen the area. I had a lot of scar tissue due to having an infection in the left side had to remove the expander and have a different reconstruction. It started to affect my shoulder was getting capsular tighness and my pect muscles where very tight. Our posture tends to change when our chest gets tight we round our shoulders which affects our shoulder machanics. But loosening the area may help reduce the tightness some. But expander on the right always felt tight, had the silicon placed last spring, they feel better but still have that tight feeling. When I flex my chest they move. Kids think its funny.
Suzanne
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 11-01-2012, 10:20 AM   #10
roz123
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Re: EXPANDER PAIN...14 days post op

thanks so much ladies
i will look into the PT -I am still in a ton of pain and have been on meds round the clock, which worries me but i can't go without
i was expanded to 180cc at surgery, they took out 30cc to try to give me some relief (did not work) i won't let them touch me until i get this pain under control
this process is inhumane if you ask me, there has to be a better way. I wish i had researched fat grafting as it seems to be a better (less painful option)
__________________
diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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