Do you have Truncal Lymphedema? My Survey-Please reply

janetanne · February 2016

1. Did you have a Mastectomy or Lumpectomy YES

1a. double or single mastectomy SINGLE

2a Did you have reconstruction? What kind? NO

2. Did you have radiation? YES

3. Did you have a SNB or Axillary Dissection? DO NOT KNOW WHAT THIS IS

3a. How many nodes removed 18

4. Do you have Arm Lymphedema also? YES

Mine came on 7/2002, Mastectomy was 3/2002, a little later i noticed my"spare tire" would go up and down, then I realized that fall that my right leg was also now larger than my left. Doctors kept telling me that only the arm of Lymphdema,it was FAT. Even when I told them "Iknow my fat, and my fat does not go up and down", no one listened. Thanks for talking about this! Janet

glennie19 · February 2016

janetanne: SNB is sentinel node biopsy where usually only a few are removed. Axillary dissection is where most or all of them are removed.

Meadow · February 2016

1. Double Mastectomy

2. Silicone Implants at mastectomy

3. Radiation...yes, 35 treatments

4. I had a modified radical mx, with 19 nodes removed

5. Slight arm Lymphedema as well

Thank you for doing this survey!

TimlinThe · February 2016

1. Did you have a Mastectomy or Lumpectomy- Mastectomy

1a. double or single mastectomy - double

2a Did you have reconstruction? What kind? Double implants

2. Did you have radiation? No

3. Did you have a SNB or Axillary Dissection?snb

3a. How many nodes removed 1

4. Do you have Arm Lymphedema also?yes

Dejaboo · February 2016

Thanks everyone I have updated.

I am finding the #s interesting already. The SNB # is much higher then the Axillary Dissection.

I read years ago that SNB was a contributer to the increase in Truncal LE...I dont think it was as common before SNB....Although we know how hard it is to get a Physican to actually dx/say that you have truncal LE...So maybe it was here before SNB- just not recognised or acknowledged.

Also they say RADS increases our odds of getting LE...So far this is pretty close RADs vs No RADS

Sunshinesprite · February 2016

Post a reply Report this Po

1. Did you have a Mastectomy or Lumpectomy- Modified Radical Mastectomy

1a. double or single mastectomy - single

2a Did you have reconstruction? What kind? No

2. Did you have radiation? Yes, 35

3. Did you have a SNB or Axillary Dissection?axillary

3a. How many nodes removed 6

4. Do you have Arm Lymphedema also?yes

PJay · February 2016

1. Lumpectomy

2. No reconstruction needed.

2. 33 treatments radiation

3. Axillary node dissection, 11 nodes removed

4. No arm lymphedema yet

Dejaboo · February 2016

Thank you Sunshinespr & PJay

aunt_paula · February 2016

Hi Glennie!

I am not good about posting, but I'm glad to "see" you!

SissyK · February 2016

1. Did you have a Mastectomy or Lumpectomy: Lumpectomy

2. Did you have radiation? Yes

3. Did you have a SNB or Axillary Dissection? SNB

3a. How many nodes removed: Three

4. Do you have Arm Lymphedema? Yes, left arm. Also truncal, both front and back. Cording in armpit - treated with PT.

Side note: Both surgeon/oncologist and RO voiced surprise that I developed lymphedema. Surgeon said since he only took 3 nodes in SNB, it was caused by radiation. RO said even 3 node removal is enough to cause issues. When I pointed out to surgeon that he and RO "blamed" the other one, he smiled and said "Yeah, we do that for each other." I have great confidence in both of these doctors; their reactions/comments tell me just how little is really known about our condition.

glennie19 · February 2016

SissyK: I was told that since I only had 6 nodes removed and that I am "slim", that it couldn't possibly be LE. Per the breast surgeon. Yes,,, most doctors know so little about LE.

Dejaboo · February 2016

Updated.

glennie19 I argued with my BS before surgery. He told me I had ZERO chance of getting LE with an SNB. I told him that was not true that everyone is at risk-even if it is a small risk. He only took out 1 node- I took precautions from day one- since I knew I was at risk. I still got LE : (

I wrote him this last year- I wanted him to know I had arm & trunk LE & that he needed to stop telling patients they were not at risk.... But he has retired & my letter was returned...I could not find a current address for him.

SheaJ · February 2016

DMX, sent node 5 left left arm lymphedema 1 right no lymphedema and trunkle le

Reconstruction, failed deconstructed

paintThesky · February 2016

I don't know if I can remember it all, but here goes. Lumpectomy right side, radiation, 10 nodes removed, I have truncal LE, and LE in right arm and hand. The lymph fluid pools in my hand at my thumb, and under my arm pit. I don't have it so bad in the arm. I've had cellulitis that was bad enough to scare the heck out of me! It came on fast from a bee sting. My LE didn't show up bad until 15 years after the breast cancer diagnosis. My current problem is, I believe the LE has spread to other unaffected side of chest. I'll be seeing my breast specialist this week to take a look at it.

Dejaboo · February 2016

Thanks, updated

glennie19 · February 2016

Dejaboo: I told my LE therapist about your survey today, and she is quite interested in hearing about your results.

Dejaboo · February 2016

Oh cool Glennie. I hope we can get more people to contribute to the stats.

I started another survey way back in 2009 (Quadrants of Breast cancer)

If any of you have not added your stats here...Please do https://community.breastcancer.org/forum/96/topics...

glennie19 · February 2016

I'll have to check my path report to see where the DCIS was,,, but I had Paget's so you can add me to the nipple count.

MaggieCat · February 2016

Question - How does "truncal" differ from swelling in the breast? I'm answering this based on the breast issues..

1. Did you have a Mastectomy or Lumpectomy - Lumpectomy

1a. double or single mastectomy

2a Did you have reconstruction? No What kind?

2. Did you have radiation? Yes ( Shorter Canadian Version)

3. Did you have a SNB or Axillary Dissection? SNB -

3a. How many nodes removed 6 nodes

4. Do you have Arm Lymphedema also? Minor upper arm swelling comes and goes depending on how much I use the arm. Have a sleeve I use at the gym when it is bothering me...

Have experienced some breast swelling along with soreness and hardening of tissue in the affected breast, beginning ~ 4 months after radiation. Comment by MO when it first began was "fat necrosis". First post chemo check-up in a few weeks. Interested in what the MO says about the continued hardening, etc 6 months later.

Edited to add ---> After 3/1 MO visit I was referred back to Lymphedema PT. MO also cautioned me to watch for signs of mastitis

MinusTwo · February 2016

. Did you have a Mastectomy or Lumpectomy

1a. double or single mastectomy - double

2a Did you have reconstruction? What kind? - TEs then Allergan anatomical gummies

2. Did you have radiation? - after my recurrence, which was 2 years after initial BMX surgery

3. Did you have a SNB or Axillary Dissection? SNB - two on each side w/the BMX

then recurrence & ALND on the right side

3a. How many nodes removed 2 on the left; 2 + 10 on the right

4. Do you have Arm Lymphedema also? not so far - 5 years out from first diagnosis; 3 years out from recurrence & ALND;

Note; Had mild truncal on the left side after original BMX & SNB - none on the right; now have pronounced truncal on the right after recurrence, chemo, ALND & rads

Edited to add: Thanks for gathering this info

Yes. I did have cording. I was referred to my LE/PT by the radiation oncologist. BS & MO both said pooh, pooh.

Dejaboo · March 2016

thanks, Updated!

CynthiaB · March 2016

Mastectomy -Double

No Reconstruction

No Radiation

SNB - I node, did not spread

Have both Trunk, arm, hand lymphodema

Surgeon had trouble removing node and I had two large hematomas on the side where the Lymphodema is now.

Not getting any relief from PT or massage......very frustrating

Dejaboo · March 2016

thank you CynthiaB

AmyQ · March 2016

1. Did you have a Mastectomy or Lumpectomy - Mastectomy

1a. double or single mastectomy - double

2a Did you have reconstruction? What kind? - Tissue Expanders, saline, then silcone, then removal

2. Did you have radiation? - yes for recurrence in left hip and spine

3. Did you have a SNB or Axillary Dissection? SNB

3a. How many nodes removed 4

4. Do you have Arm Lymphedema also? Yes

Amy

Dejaboo · March 2016

Thanks AmyQ!

Dukip · March 2016

!

1. Did you have a Mastectomy or Lumpectomy - Lumpectomy

1a. double or single mastectomy - one side only

2a Did you have reconstruction? What kind? - no

2. Did you have radiation? - yes, whole breast

3. Did you have a SNB or Axillary Dissection? - yes, both

3a. How many nodes removed - 16

4. Do you have Arm Lymphedema also? - no, but do have breast also

toomuch · March 2016

1. Did you have a Mastectomy or Lumpectomy Lumpectomy followed a year later by Mastectomy

1a. double or single mastectomy BMX

2a Did you have reconstruction? What kind? Bilateral S-Gap

2. Did you have radiation? Yes

3. Did you have a SNB or Axillary Dissection? AND

3a. How many nodes removed 12

4. Do you have Arm Lymphedema also? Yes. Developed arm and trunk LE after my lumpectomy. Trunk LE worsened after my S-Gap.

BC2015 · April 2016

lumpectomy right side

SNB 4 lymph nodes removed

Radiation 6 weeks

No reconstruction

Trunkal lymph right breast. No lymphadema in arm. Started right after RADs ended.

After a total of 10 weeks PT I bought a flexitouch machine. I wear a lot of compression sports bras and shirts. It still hurts all the time. Surgeon said the big seroma I got after surgery might be part of the cause.

glennie19 · April 2016

BC, I had a seroma too.

I did not know that you could use Flexitouch with only truncal LE. I thought it was basically for arm or leg LE. Curious if anyone else is using Flexitouch with truncal,,,,

BC2015 · April 2016

yes you can use it with truncal. They put me in the vest, arm, thigh pieces. I also get cording in my arm on and off so the arm piece helps.

Do you have Truncal Lymphedema? My Survey-Please reply

Comments

Categories