Do you have Truncal Lymphedema? My Survey-Please reply

mod rad mastectomy right side - 7 lymph nodes removed

reconstruction by implant

radiation due to local recur (caused implant capsules contraction - thus removal)

prophylactic mastectomy

lymphedema upper right truck and right arm

used up my annual allowable 20 pts visits for 4 years.

have tried to maintain last 10 years. not done a good job of it. (kidney cancer - renal cell carcinoma, right kidney removed, bc Mets to spine and left adrenal gland)

stereotactic radiation to adrenal gland.

In all that my treating lymphedema has taken back seat. paying for it now as harder and harder to get under control. heat is simply awful for me.

cellulitis 5 times in right arm and slightly into upper right trunk. hospitalized 3 of those times

1. modified radical Mastectomy

1a. single mastectomy

2a No recon

2. No rads

3. Axillary Dissection

3a. 9 nodes removed

4. Do you have Arm Lymphedema also? Yup - all the way down to and including my fingers; it's on my right side and I'm right arm dominant and had a baby at home. Swelled for the first time with second chemo - was taking a hot shower to help my hair fall out and came out with a swollen forearm. Truncal appeared as "post op" swelling that never went away. Yes cording. No seromas or cellulitis (knock on wood!). No excess skin, although I do have a very large number of surgical clips in the exact area of my remaining truncal le (was worse for a while.

I have on again off again Truncal Lymphedema. It was much worse right after radiation. It has improved greatly, but I am still bothered with it every now and then. Then it seems to go down on its own. If I sleep on my left side (affected side) it is much worse.

1. Did you have a Mastectomy or Lumpectomy

Lumpectomy

1a. double or single mastectomy

2a Did you have reconstruction? What kind?

2. Did you have radiation?

Yes

3. Did you have a SNB or Axillary Dissection?

Axillary Dissection

3a. How many nodes removed

27

4. Do you have Arm Lymphedema also?

yes

lumpectomy

No reconstruction

SNB, 5 nodes removed

Have not had rads yet- this is terrifying to me, still don't have control over my LE, rads are gonna suck. And, oh yeah, rads will be during the summer

Truncal and arm

And I have cording. Thought it was gone until a couple bug bites on my LE hand brought it back.

1. Did you have a Mastectomy or Lumpectomy Lumpectomy

1a. double or single mastectomy

2a Did you have reconstruction? What kind?

2. Did you have radiation? yes

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

3a. How many nodes removed 3

4. Do you have Arm Lymphedema also? no

I had a seroma after lumpectomy which was drained once. After first chemo this seroma blossomed into an infection which landed me in the hospital where it burst and formed a 4 cm deep wound. This took 2 weeks of twice daily wound packing and delayed the next chemo..I had very limited movement of that arm and cording. I gradually got movement back and cording subsided. Then after radiation things changed again. I was referred to a Lymphedema PT and she has been working for 3 months to massage out scar tissue. There is no real sign of lymphedema in the arm but I was advised to wear a garment when flying.

I also have severe pain in my breast when I do the stretches exercises and some pain in my back. I just met a woman in a support group who suffers truncal lymphedema and she got me thinking. So tomorrow when I go back to PT I plan to inquire.

Thank you for letting me vent here.

Good Luck to all.

I also had chemotherapy and radiation. The cancer is stage 4, it went to bone of spine and ribs. I'm on a hormonal pill and I get a bone shot, exchevia , every mont