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Honored Contributor
Posts: 23,835
Registered: ‎03-10-2010

On Dr. Phil there was a discussion on this condition with actress Kathy Bates, who has this condition after  double mastectomy.  Do any of you deal with this condition?  It seems to be misdiagnosed as other things... as well as misunderstood by many in the medical fields and just not looked at as important....

 

Many women who have  breast cancer surgery are not told  before surgery about this condition as a  very possible out come from removing lymph glands....and then they experience terrible problems with arms swelling up for the rest of their lives.

 

it can also be genetic or caused from an injury  or surgery that involves disturbing lymph glands any where in the body.  Many times Celulitis is a form  of lymphedema and is misdiagnosed as something else because doctors do not know enough.

 

It is about time this condition is brought to the forefront and discussed with patients before surgery of any kind.  Thank you Kathy Bates!❤️

 

Honored Contributor
Posts: 70,902
Registered: ‎03-10-2010

It seems to be common with patients on these TV shows about the super obese.  It looks like it would be extremely uncomfortable, very painful.  Their affected limbs get huge.

New Mexico☀️Land Of Enchantment
Respected Contributor
Posts: 4,180
Registered: ‎04-10-2012

I have what I think is  thankfully, a mild case, as a result of a partial mastectomy  and node removal from breast cancer. Surgeon told me if it was bothering me it could be drained. So far it doesn’t bother me enough to have it messed with.I know it is a miserable condition for many.🙁

Respected Contributor
Posts: 4,758
Registered: ‎01-18-2012

About 16 years ago I worked in a Lymphedema Clinic in S.F.  I had never heard of this condition.  Most of our patients were ex maesectomy/Cancer ladies who had arm swellings.

 

The treatment offered in this clinic was to put patients on machines which helped massage and move the lymphatic fluid afterwards they wore elastic type stockings on their arms.  Also in attendance was a masseur for lymphatic drainage.  

 

None of the above seemed to be a permanent solution as these ladies returned on a regular basis.

 

I was not at the clinic very long but hopefully after all this time there is some further advanced treatments to help as it is a very - as already stated - miserable condition and I feel very sorry for these patients.  

Honored Contributor
Posts: 15,824
Registered: ‎09-01-2010

A dear friend of my husband developed this after her double mastectomy in the early 1970’s.   By the time I met her in 1975, she had found a specialist in MD doing a type of therapy that worked well.   

Honored Contributor
Posts: 17,892
Registered: ‎07-03-2013

I have a couple friends that have it from their breast cancer journey.  One was able to get a machine through her insurance.  I am not sure if it's like the one mentioned.  It's horrible to have to go through cancer treatment and surgery, then have this.  I also have been told it can be very painful.

Honored Contributor
Posts: 15,229
Registered: ‎09-08-2010

I really like Kathy Bates. She seems like a genuinely nice person in addition to being a wonderful actress. I watched the interview and thoroughly enjoyed it. Also, she's lost a lot of weight. She looks really good. I believe she's the spokesperson for the Lymphedema Society? If not she's got a major role in the organization.

Super Contributor
Posts: 441
Registered: ‎02-21-2012

As a 17 yr survivor of breast cancer I was made aware of this by my oncologist early on in my treatment.  All the nodes in my right arm were removed because they couldn't isolate the sentinel node to see if the cancer had spread.  I was told to respect my arm, no trauma to it, no blood test ever from that arm, no blood pressure check on that arm, etc.  In addition not to carry or lift more than 10 lbs.  I have done my best to protect that side and so far so good. I make every healthcare professional that I visit aware of this.   I did enjoy bowling but no more.  I didn't see the interview but will try and watch it somewhere.  Other than that,  I am fine - thank God.

Honored Contributor
Posts: 9,305
Registered: ‎06-08-2016

I worked with a young lady years ago who suffered from lympedema in one arm.   She had cancer as a child, had the lymph  nodes removed.   Leukemia, I think.

 

She seemed to be very accepting of her condition.   Always smiling.

She was an inspiration.

Respected Contributor
Posts: 2,224
Registered: ‎01-26-2013

Now they do an injection before breast cancer surgery to find the sentinal nodes, nodes where cancer will go first if it is spreading to the lymph nodes.  I had two sentinal nodes but the surgeon I had always 'grabs' a few extra to be sure so I had a total of 7 removed.  This was 11 years ago and so far, so good but, I am extremely careful of my arm.  I have  never allowed a blood draw, bp taken in the affected arm, don't lift anything more than 10 pounds, and I was told to never carry a heavy handbag again on that arm.  I've worn a compression sleeve when flying after bc and it's a real pain to deal with so I hope I never have to wear one on a daily basis.  Developing lymphadema would be very hard for me to deal with, so I pray I never get it.