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Old 02-17-2015, 02:20 PM   #1
Rachnick
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Lymphedema or something else?

Hi!

I have a question about a new issue I'm having and I hope someone can shed some light on it for me. I'm 11 years away from bilateral mastectomies during which they removed 3 lymph nodes from each side (cancer was on the right side). In 2012, I was diagnosed with a new breast cancer. After it was removed, I had chemo and radiation (to the right side). Radiation ended in July 2013. Lately, I've been having pain when I extend my right arm out in certain directions. And I just noticed today that when I feel the tender spot that's in the middle of my bicep from which the pain radiates, it feels like there are some lumpy "strings" in my bicep. I also noticed that further down my bicep toward the inside of my elbow, my skin looks like it's a little puckery. When I compress that bicep with my left hand and extend it, it doesn't hurt.

Does anyone know if this is the start of lymphedema? As much as I don't want to deal with that, I'd rather have the problem be treatment-related than cancer-related. Thank you so much for any input you can give me!

Susan
__________________
April 2004 - DXd with DCIS in right breast
April 2004 - Bilateral Mastectomies
NED until
October 2012 - DXd with IDC near right,
reconstructed breast, 1.9cm, grade 1, no
LVI, ER+/PR-/HER2+
November 2012 - 2 lumpectomies, clear bone scan, clear CT scan
April 2013 - 6 rounds of TCH completed
30 rads completed in July 2013
Herceptin completed in November 2013
10 years of Tamoxifen to go
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Old 02-17-2015, 03:14 PM   #2
jaykay
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Re: Lymphedema or something else?

I'd go see a lymphedema specialist to get the correct diagnosis. I had radiation on my right side and they zapped my lymph nodes, too. Also had radiation on my left side without lymph node targeting.

I did see a specialist, was measured and fitted with a sleeve. I only wear it when I fly but never have my blood drawn or blood pressure taken on my right side.

Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 02-17-2015, 03:46 PM   #3
LeahM
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Re: Lymphedema or something else?

Could it be axilla web syndrome? (Cording?)
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Old 02-17-2015, 03:53 PM   #4
Rachnick
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Re: Lymphedema or something else?

Thanks, Leah. I'll look that up.
__________________
April 2004 - DXd with DCIS in right breast
April 2004 - Bilateral Mastectomies
NED until
October 2012 - DXd with IDC near right,
reconstructed breast, 1.9cm, grade 1, no
LVI, ER+/PR-/HER2+
November 2012 - 2 lumpectomies, clear bone scan, clear CT scan
April 2013 - 6 rounds of TCH completed
30 rads completed in July 2013
Herceptin completed in November 2013
10 years of Tamoxifen to go
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Old 02-17-2015, 03:54 PM   #5
Rachnick
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Re: Lymphedema or something else?

Janis,

I'm seeing my radiation onc for a check-up on Monday. Hopefully she can diagnose. I don't have much confidence that my hospital has a lymphedema specialist. Thanks!

Susan
__________________
April 2004 - DXd with DCIS in right breast
April 2004 - Bilateral Mastectomies
NED until
October 2012 - DXd with IDC near right,
reconstructed breast, 1.9cm, grade 1, no
LVI, ER+/PR-/HER2+
November 2012 - 2 lumpectomies, clear bone scan, clear CT scan
April 2013 - 6 rounds of TCH completed
30 rads completed in July 2013
Herceptin completed in November 2013
10 years of Tamoxifen to go
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Old 02-17-2015, 03:59 PM   #6
Rachnick
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Re: Lymphedema or something else?

Wow, Leah, I looked up axillary web syndrome and it fits what I'm seeing and feeling perfectly. I'll ask my rad onc when I see her next week about it. You are awesome! Thanks!

Susan
__________________
April 2004 - DXd with DCIS in right breast
April 2004 - Bilateral Mastectomies
NED until
October 2012 - DXd with IDC near right,
reconstructed breast, 1.9cm, grade 1, no
LVI, ER+/PR-/HER2+
November 2012 - 2 lumpectomies, clear bone scan, clear CT scan
April 2013 - 6 rounds of TCH completed
30 rads completed in July 2013
Herceptin completed in November 2013
10 years of Tamoxifen to go
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Old 02-17-2015, 04:02 PM   #7
LeahM
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Re: Lymphedema or something else?

Very welcome Susan. I don't know what the treatment is. Best of luck!
__________________
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 02-19-2015, 08:02 PM   #8
Pat94
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Re: Lymphedema or something else?

Hi. I developed lymphedema from a blood clot. Fortunately that cause has a great prognosis for correction. In fact, my arm is back to normal size but I have to keep wearing the compression garments for a while longer to keep the swelling in check. My specialist is an Occupational Therapist with specialized training. She got interested in the specialization because she had lymphedema after BC. Recently she commented that she was afraid I was developing cording so she has used both massage and a hand-held laser to treat that area. as well as areas of scar tissue. I don't feel any pain from the laser but the massaging is certainly uncomfortable and leaves me tender to touch for several days. On the other hand, I have much greater range of motion than I did. I think and have read on this site that it is important that you get someone who is trained in this specialty. As many have commented, if you aren't satisfied with your medical team then it is time to check out others. I switched and I think it saved my life.
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Old 02-19-2015, 11:39 PM   #9
Rachnick
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Re: Lymphedema or something else?

Thanks, Pat94. I'm hoping I don't get a perplexed look from my rad onc. She's done that enough times that I've thought about asking to see her diploma. You're right - I think I'll have to be proactive with her and ask for a specialist.
__________________
April 2004 - DXd with DCIS in right breast
April 2004 - Bilateral Mastectomies
NED until
October 2012 - DXd with IDC near right,
reconstructed breast, 1.9cm, grade 1, no
LVI, ER+/PR-/HER2+
November 2012 - 2 lumpectomies, clear bone scan, clear CT scan
April 2013 - 6 rounds of TCH completed
30 rads completed in July 2013
Herceptin completed in November 2013
10 years of Tamoxifen to go
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