Question re Lymphedema??

Westcoastgirl · 03-10-2012, 11:38 AM

Hello ladies, I am over three years out from diagnoses and received a lot of help here and from a Canadian Cancer Agency volunteer that called me throughout my treatment. I was so impressed with this program, Cancer Connection, I volunteered to help other women with a similar Breast Cancer to myself as they go through treatment. I had 8 lymph nodes removed and therefore have always been very, very careful; careful of cuts, sunburns, bites, wear a compression sleeve to wt train, fly, to do repetitive work, and no blood taken, blood pressure, iv etc in that arm. Most of the women I talk to have had only the one Sentinel node removed and my question to you is: Should I give them the same advise I got re lymphedema or are they at a very small risk and I should not scare them with extra information? They all seem to think they can get on with their lives with no changes/precautions in a lymphedema respect and maybe they are right?? Your input would be most welcome in my quest to help these women. Thank you, Carolyn

BonnieR · 03-10-2012, 12:41 PM

Good question. I only had minimal lymph nodes removed. Sentinal with one or two that came along with it..in both sides.
My left arm has been a little problematic and developed very mild lymphedema. I saw a specialist who recommended the sleeve while flying for that one side only because I had minor symptoms. The precautions regarding avoiding hot tubs, sunburns, cuts, etc is valid for anyone who had had any nodes removed. Blood draws, BP etc should be done on the opposite arm. Since I had a bilateral, we do the labs on my right arm which seems more unaffected.
As an example, my left arm got over exposed to sun and I got to scratching it...anyhow, it got red and swollen, and I needed to take Cipro to prevent cellulitis.
So, it is good to take precautions without getting fanatical about it. Since you are advising patients, I suggest you get factual information from experts too. What does your research show?
Keep the faith.

Jackie07 · 03-10-2012, 02:13 PM

Hi,

My surgeon took a sentinel lymph node plus one during my first breast cancer surgery (a lumpectomy in 2003) and then 9 more during my 2nd BC surgery (mastectomy in 2007). I didn't have any problem until in late fall of 2007 when I got a tiny (couldn't even see the bug) insect bite while picking figs in the back yard. I contracted cellulitis which caused bad swelling and I was prescribed compression sleeve and glove after antibiotics had cleared it up.

It's probably a good idea to wear glove and sleeve to protect the side that is vulnerable. Had I known the risk I know now, I'd have put on a space suit before going to the back yard...

Debbie L. · 03-11-2012, 09:13 AM

Good questions. I don't know that women and men need a lot of advice about preventing lymphedema (it may be that if there's enough damage, it will develop regardless eventually). But all people who have had any surgery or radiation to the axilla (including SLNB, which lowers the risk compared to full axillary dissections, but does not eliminate it) definitely need to know what to watch for in terms of symptoms, so they can get on top of it early. It's much easier to treat and control before the tissue damage becomes extensive.

So my answer to your excellent question would be a partial "yes". Make sure anyone you counsel knows about lymphedema, and ideally knows exactly who to contact should they have any sign of it. The "who" part would be a certified lymphedema therapist. The symptom list would include what happens before there is perceivable swelling -- heaviness, tingling, burning, and pain, in the affected limb or breast/chest.

Debbie Laxague

Westcoastgirl · 03-12-2012, 04:35 PM

Thanks ladies. I was looking for your personal experience but also took your advise and asked the researchers at Canada Cancer Agency to answer the question. I quote: When compared with SLNB/ALND, SLNB alone results in a significantly lower rate of lymphedema 5 years postoperatively. However, even after SLNB alone, there remains a clinically relevant risk of lymphedema. Higher body weight, infection, and injury are significant risk factors for developing lymphedema.

gloriacreamer · 06-25-2013, 08:33 AM

I am a certified lymphedema therapist with my own practice in La Jolla CA. I love to help my patients with lymphedema who have difficulty with any ongoing care due to financial reasons. My clinic accepts most health insurances, which has been a relief for many. Many people after surgery do into a latency form and will develop lymphedema sometimes years after the surgery. SO, any information to all would be very helpful. Also, please understand that lymphoma can't be cured but managed. Everyone with even a slight amount of edema should seek therapy. The therapy should be a complete program with lymphatic massage, compression bandaging, skin care, progressing to compression garments, instruction of self lymphatic massage, self compression bandaging which should be worn during the night once the compression garment is removed, ongoing skin care and lymphedema exercises. All this should maintain. If not please see a certified Lymphedema therapist for on going treatments. Many require active treatments from time to time.
Gloria Creamer P.T.