Alternative Treatment

"But my point is the sentinel node should not even be done. "

I actually agree, Essa!

I had NO radiation and very early stage BC with an excellent prognosis. Due to the SNB,  ( ony 2 clean nodes out) I now have breast LE I will live with until I die, making it difficult to ever put BC on the back burner due to the daily reminder.  A new challenge , I guess.

If they werent going to remove more even IF cancerous then why bother ?  My DR would not have . She is actually  a highly respected 'Harvard D'R who believes only in SNB and taking as few nodes as possible ------1 or 2.

I dont see the point.

ANY one of us who has had ANY nodes removed are at a LIFETIME risk of LE. Ten yrs out it could rear its ugly head.

purple, may I ask you how long after your surgery did you get LE and do you know if there was one particular thing that triggered it?  The reason I ask is that I had SNB too (2 nodes taken out) and my BS gave me an Rx for the compression sleeve and the LE pamphlet and enough warnings to make me crazy.  My cousin's wife is also a BS, in a different part of the country.  Both are also cancer researchers.  I asked my cousin's wife how seriously do I have to worry about this LE - really, never lift over 15 lbs, etc.?  She said that for SNB patients, she does not even talk with them about LE and that it was a non-issue/non-risk.  So I have taken her word on it and I have not gotten the sleeve nor have I taken any of the precautions. 

You know, when I first realized I had bc, I spent months reading.  I still didn't know enough to protect myself from stupids, my surgeon was so highly respected that patients came from Chicago instead of using one there.  My surgeon needed to tell me, I am not a cancer specialist, I am not a breast cancer surgeon, you need the best for this, go forth and find another. 

The cancer, he left in my breast, I was multifocal, no one knew.  The nodes, really, what was the point if they were just checking. There are noninvasive ways to check, like the PET CT which I completely admire for accuracy, even though I wouldn't want more than a few in life.  There we are fighting for our livesw, the surgery is all some alternative choosers will accept, it is life and death and they don't take that seriously.  So to anyone who is persueing alternatives, I say that you must get the best, know what they are planning to do.  They cannot 'wing it' in the surgery room.  It must be mapped out for them.  And to expect taht they can just go back and do a re-excision?  I didn't want to go under once, let alone twice then another time a year later for what was not taken.

Thank goodness for the alternatives, it got me this far to not stop my protocol.  And I don't even think I do enough.  But if we are not choosing chemo or radiation, then I think we need a special surgeon who knows this is the one shot.  Don't know there is one.  

The LE - I got LE huge LE, still dealing.  The bs never mentioned it, he said I had to keep using arm to keep range of motion, that is all he said, he even had my bc notebook in his center and they did not give it to me, I had no idea about LE....... this was while I had no drain and the fluid was running down my side all the time for 4 weeks, I was bandaged, miserable, infection for three days at one point.  Arm and torso swollen.   To date, it hurts me to type, my arm acts up when lifting, it is swollen two sizes larger than other, the weather causes it to be painful and next to useless.  And worse part, it is like a dead asleep foot in arm and part of axilla.  Some hurts, some no feeling at all.  LE is real.  GraceD there ar LE threads on bco to know what to do, how to avoid, how to deal.  Those helped me.  Alternatively speaking on LE, I understand acupuncture has helped people.  I started it for a time but finances stopped it for now, acu did help a lot though.

My friend the natural farmer, whom my test-running onc almost killed off with chemo (if she had the heart attacks when she left the clinic, oh man) anyway she had a mx and SNB with 36 nodes removed and half positive.  Didn't know there were that many in one place LOL, but when there was a reoccurence they removed more, cancer too.  The rad and chemo didn't get it either.  A few mo ago there was a tumor with arms and legs wrapping around her thyroid, very fast growing, but it was B9 when part of it tested.  WT? I don't get it.  She was told by surgeon that she must not have been properly covered for her rads.  She looks good right now though, real good.  We were dx just 2 months apart.  She went as fast as possible to conventional, I went as slow as possible to surgery and alternatives - except my alt protocol started right away, just not the right protocol or enough info to do right protocol, and was still living by neighbor's OWB w toxic smoke.

Going to work a few hrs then go out and garden.  The most beautiful late summer day here. Then will make dinner and watch sunset w Hubby.  That too is alt tx each and everyone of needs to take time for,  conv / alt / all, time for the peace and quiet too.  I don't do it near enough.

Alternatively speaking on LE, I understand acupuncture has helped people.  I started it for a time but finances stopped it for now

ESSA
I would be exceedingly careful of any needles with LE.

graced

Baby your arm, dont get BP readings, needles, dont use it to vaccum , rake etc ...  Dont lift a lot .  Dont squish your breast!  I  dont know what else to tell you.  I Never in a million yrs would have considered myself a likely candiadte and most DRS stress the rads is the biggest culprit due to scar tissue.  NO RADS here DRS!!!!

Wow, thank you purple and everyone for all the info.  I just finished rads about 4 weeks ago.  As the saying goes, 'if i knew then what I know now . . . '  My BS was a fellow under my cousin's wife so after my cuz' wife said 2 nodes was no risk, I assumed that the BS was just doing a CYA with the LE talk.  Just living is a risk factor for LE, esp if it's your dominant hand/arm like it is for me.  And none of these docs can even agree on anything.  My BS and cuz wife were in agreement for no chemo for me but that was against what the MO wanted.  I didn't do it.  So frustrating.  I'm sitting here reading Susan Weed's Breast Cancer Breast Health book now and I'm tired of trying to understand all the facts and statistics and remedies and going around in circles!  I want to go back to a time when I never knew any of this and never had to think about any of this!

Ok, I'm done venting now.  I think.  Sorry about that.  

I tried accupunture and got good relief from it for BC SE's and back pain. I did ask that no needles be used in my affected arm and/or breast area. I should say that I had no expectation of relief, so I don't believe it was a psychological affect. I don't how it works, I just know that it did.

I have a slight increase in my one arm - 1 centimeter, and do sometimes get more swelling which requires my wearing my sleeve. I recently flew with no problem, but I did have some issues after swimming for several days. Side stroke was ok, but the back stroke was too ambitious. I'm paying for it now. Very sore arm and chest. My Cancer Center requires treatment for LE be done by an Occupational Therapist. Physical Therapists cannot treat LE patients.

to change the subject a bit:  hunting for something else I came accross a bottle of dr hauschka's (sp?0 blackthorn oil.  got info that it was prussic, like laetril, though I think laetril isn't cyanidic but arsenic & probably blackthorn is as well.  plan to bring it to the studio tomorrow & use it while there

"That way my osteopenic spine gets some resistance training while I protect my arms. "

Don't let him pull you down, Momine

Sorry- I couldnt resisit/ only kidding !

. 

Momine writes: I put his leash on my belt instead. That way my osteopenic spine gets some resistance training while I protect my arms.

That is seriously brilliant.

Thanks! My spine is fast becoming a noodle. I will try the Momine technique.

A Skijoring belt might work well.  I'm not sure, but it may distribute the 'pull' of your dog a little better.  There are a few different styles.

graced, there's a great forum for LE if you haven't found it yet, here on BCO. The ladies there have a wealth of knowledge and experience.

There are few "absolutes" about what may trigger LE in a person. But the one I live by is avoiding infection on that side's hand or arm. I had two levels of nodes removed, and have lifted heavy weights, rock climbed, rowed, and done vigorous Pilates since 6 weeks post-op, 10 years ago. I haven't gotten LE. Knock wood.

I think the biggest variable, that we can only measure with a lymph scan, is the structure of your own lymph system. Dr. Marga Massey described it this way: some people have a 4 lane highway for axillary lymph nodes and drainage. Some people have a 2 lane road. Others are a little windy path. You remove nodes and close down one lane, and some people have no extra lanes or acceptable detour. These people get LE quickly. Even with just one node removed.

I have been blessed, I think, with a super highway. But I still watch out for major wrecks that could shut it down.

I keep tea tree oil handy as an antispetic for cuts and scrapes--in my backpack, my bike pack, my purse.

I agree with AnneW, no absolutes with what or does not trigger LE. Yes, there are some guidelines that we can follow but there is still a lot of unknowns. That is a big reason why it's hard to explain why someone with SNB gets LE and another with full AND doesn't or why it doesn't show up for years. I worked with a pt and was taught MLD. She gave my personal trainer, who is familiar with LE, guidelines for weights. Currently working with 8lb free weights. I have sub-clinical LE and for me, hot weather is when it acts up. I drink lots of water, do MLD and elevate the arm. I have little swelling but the skin on the underside of my upper arm feels tight. No sleeve yet but I monitor very carefully.

Caryn

He's a mutt. A rescue dog. Their best guess is chow, flat coat retriever and maybe some English Lab. He has a big chest. He only weighs 80lbs (my son's Eng. Lab weighed 140lbs), but he's still fiesty, even at almost 8. At one point last year I was down to 88lbs. I'm at 3 digits now (barely) so it's a little easier now. Mostly he exercises by running free in the field. When he was younger and still on a leash, he took after a rabbit he spotted (and I didn't) in the field and before I had a chance to let go of the leash he took off after it. I went down hard. It was March, so the ground was still hard from winter. I hurt for a week. Thankfully, we've broken him of that at least. My bro-in-law has a St. Bernard that weighs 185lbs. The father weighed 210. It's a good thing they have a barn because he's almost as big as their horses.