Time Period for developing lymphedema?

kira66715

L to the K, it's my understanding, from attending a lecture from Jodi Winicour, that AWS doesn't really put you at risk down the line, but rather at the time that it's really active. If the deep lymphatics are compromised, it puts you at risk--at that time. AWS/cording is really, really common, but LE doesn't happen to all the women who get cording. Please don't worry.

For me, the BMJ article made so much sense, because I had like a dozen cords, 3 weeks out and that's when my hand swelled. My lousy lymphatic system was all inflammed and I just couldn't handle any insults to it.

Rupi, I was thinking about you, and there's some ACS advice for the first week that might help:

http://www.cancer.org/Cancer/BreastCancer/MoreInformation/exercises-after-breast-surgeryThe week after surgery

These tips and exercises listed below should be done for the first 3 to 7 days after surgery. Do not do them until you get the OK from your doctor.

Use your affected arm (on the side where your surgery was) as you normally would when you comb your hair, bathe, get dressed, and eat.

Lie down and raise your affected arm above the level of your heart for 45 minutes. Do this 2 or 3 times a day. Put your arm on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder. This will help decrease the swelling that may happen after surgery.

Exercise your affected arm while it is raised above the level of your heart by opening and closing your hand 15 to 25 times. Next, bend and straighten your elbow. Repeat this 3 to 4 times a day. This exercise helps reduce swelling by pumping lymph fluid out of your arm.

Practice deep breathing exercises (using your diaphragm) at least 6 times a day. Lie down on your back and take a slow, deep breath. Breathe in as much air as you can while trying to expand your chest and abdomen (push your belly button away from your spine). Relax and breathe out. Repeat this 4 or 5 times. This exercise will help maintain normal movement of your chest, making it easier for your lungs to work. Do deep breathing exercises often.

Do not sleep on your affected arm or lie on that side.

Kira

Kay_G

Thanks for clarifying the AWS link to LE.  I just took a class at the therapy center on LE risk.  The PT said that AWS was not a risk for LE.  Very confusing to me because BS had told me it was.  What you say Kira makes sense.  I was very bummed after the class because most of the women went right from that class to a weight lifting program developed by Katie Schmidz.  Hopefully I'll be able to do the program soon.

I have seen several women post that they were told to get a sleeve for flying even though they didn't have LE because they were at risk for LE.  Just wanted to say that at the PT place I go, they don't recommend that.  I will try to explain the reasoning they gave me.  They said that they believe wearing a sleeve when you don't need one could weaken your lymphatic system and actually cause lymphedema.  I think they likened it to wearing glasses you didn't need and then having that cause your eyes to need glasses.  It seems that most places are recommending the sleeves for flying to women without LE.  I wonder if Binney or Kira have an opinion on this.

karen1956

Soon after finishing Tx, I got a "generic" sleeve to wear during flying...was good about wearing it the first year or so, but now I don't wear it....I kind of have my head in the sand about it...last week when I was at my folks, I saw a gal with the coolest sleeve and I commented to her about it...she told me that she didn't develop LE till 9 years post Dx....

kira66715

Kay, lots of controversy about sleeves for "at risk" women. Lousy fitting compression can trap fluid and cause harm.

Now, I'm always citing Jodi Winicour (instructor at Klose Training, amazing lecturer) , but she is amazing, and I ran it by her, and what she does, is get women a really low level compression sleeve--15-20mm, I think only Jobst makes one that low, and class one gauntlet/glove.

The NLN position paper on flying says that women at risk need to make the decision individually.

There was a study done by Nicole Stout in 2009 where she used the perometer and measured women post-op and if their volume increased by 3%, she had them wear a Jobst sleeve/gauntlet, and most women resolved that swelling, and those who didn't, got standard LE therapy. No one has replicated the study, although MGH gathered data. It's not clear if she treated women with post-op swelling, or prevented any LE, but it's been used as a standard for early diagnosis and intervention.

There is a researcher in NYC who strongly feels that women should avoid compression, and I once had dinner with her at the NLN conference and our other dinner companion was a woman who developed LE after flying and we just could not get the researcher to admit that sometimes there's a role for compression and flying with at risk women.

The one, lousy study of the dragon boat women showed that longer flights increase the risk of getting LE.

In the end, women need to evaluate their personal level of risk and hopefully have a knowledgeable health care provider to help with the decision.

I think, when in doubt, go with the low compression sleeve and class one gauntlet. But I have no science to back me up.

There was a point/counter point at the last NLN conference on risk reduction practices, and Sheila Ridner argued for it, and she said "When I sit in a support group, and women tell me that air travel triggered their LE, I take it seriously." The opposing point of view was a breast surgeon who got all offended when her patients wrote "No IV/bpr" on their at risk arm......

Until we can predict with better accuracy who is at risk for LE and when those risk periods are, these issues of uncertainty and controversy will persist.

But, at least we're aware of them and can make informed decisions.

Kira 

LtotheK

The position on LE in "at risk" women reminds me of my third opinion who told me to "go with my gut" about chemo.  Really?  Because I thought she was the expert. How absurd to suggest something as important as a decision on chemotherapy should be ruled by my emotionally distraught gut at the time of my treatment. 

I've evaluated my level of risk.  It is low to moderate.  What the postition papers are basically telling me is, they don't know whether a sleeve will help or hurt, so roll the dice. Go with the gut.  Kira and Binney have done a lot more to distill this issue, but it's still radically unclear to me.

I made my choice when I used an air sleep pillow, which was half full.  I woke up and it was hard as a rock.  It seemed to me that was happening to my arm, too.  Not very scientific.

My physical therapist was willing to fit me, and seemed to lean towards thinking it was a good plan.

But that's hardly a "yes, go for it".

Kay_G

Thanks for the answer Kira.  It is wonderful to have such knowledgable women like you and Binney here to share so much info.

LtotheK

By the way, I just checked the glove and sleeve my PT fitted me for.  It is a Jobst 20/30 mm--sounds like I should revisit the 15/20 with her!

As usual, thank you, Kira, for your amazingly generous sharing of information.

FLwarrior

Hi ladies, I have read all of your posts here.  I wish I had some great info to share,but...when I asked my BS about what to do/not do to help prevent LE from developing she had no "real" answers.  She said not enough studies are done to understand the causes.  She told me I had a 5% risk of developing it.  Not sure how she got that figure? (RO I consulted with told me that rads would increase my risk 5-10% of developing it at some point.)  I had UMX w/ SNB 4 nodes removed, no rads.  The only guidance BS was willing to give me was "Listen to your body.  Live your life as normal as you did before just listen to your body, if it doesn't feel right don't do it."  REALLY???  I have always been active.  The only thing that my MO said was if I was going to be on a long flight longer than 3 hours talk to him first.  They all were in agreement about no IV or BP in that arm.

I am 4 1/2 months out from surgery and the past couple of days for the first time I have had some puffiness along my side MX (not in my arm or hand).  I only wear a bra when I go out, but never around the house.  In the past couple of days I had an indentation from the bra when I took it off.  It didn't hurt, but did feel strange.  I have wondered if it was a slight case of truncal LE...

I have always been active, but I am really not sure about doing some things that I used to do...I like to kayak, but I have been afraid to try it since surgery.  BS said it was ok for me to try it, just to take it slow and rhythmic... Kira, do you have any more info on the dragon boat women study? I would like to know more about it.

LtotheK

FLWarrior, you sound so much like me last year--just not quite sure what to do.  I will tell you my PT said I had a 3 - 5% chance per node = 30% + radiation 10%.  To be frank, I think that's a little overstated.  But, better safe than sorry.  But, we don't know exactly how to do that.

I'll try to poke around for the dragon boat study.  I don't remember why Kira says it was a poor study, something was lacking if I remember.

grateful33

Thank you all. I have learned so much here.Makes me feel less alone in this confusing battle.

Kira your knowledge on this subject is amazing and much appreciate.

Hugs

Rupi

dlb823

I've only skimmed this thread, but wanted to add something that may not have been touched on, which is truncal LE.  I had a total of 16 nodes removed, and although I don't have any obvious lower arm swelling, I get sometimes painful LE heaviness and swelling in my side, very upper arm, and into my back.  Initially, I had no idea what it was, until I heard the term truncal LE here, but it's just one more form of LE to be aware of, in case it happens to you.

I also wanted to add that not too long ago I was busy chatting and not paying attention when a med tech started to take my blood pressure on my "bad" side, and, ladies, you don't ever want to do that!!!  It was unbelievably painful as the cuff started to close.  I probably scared the poor girl with my reaction, but, trust me, it's not just ill-advised, it's something you never want to attempt!       Deanna

OneBadBoob

http://www.stepup-speakout.org/Controversial Studies on Compression Garments when Flying.htm



Regarding the dragon race study.



Sorry I cannot get the link to work. Please copy and paste.

kira66715

L to the K: Jobst is a soft sleeve, and it's just one person's opinion, but MOTC, who hasn't posted here for a while, has hand swelling and wears the lighter sleeve with a stronger glove.

FL warrior and Deanna: here's a link to truncal LE--so common and so underdiagnosed
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

FL warrior: all the position papers on exercise and LE say to go slow and steady. Personally, I haven't kayaked either since I got LE so soon after surgery, and I keep wishing we had a double so I could just coast. I'd love to go back to it.

I made Jane's link live, we were fortunate to have a member of our bc.org community who really understands scientific literature interpret the study

http://www.stepup-speakout.org/Controversial%20Studies%20on%20Compression%20Garments%20when%20Flying.htm 

Here's what she wrote

:Compression Garments on Airplanes

Controversial Study on Wearing Compression Garments While Flying Coming out of SABCS, December, 2008

A controversial study has come out of the San Antonio Breast Cancer Symposium, December, 2008. Air Travel Holds Little Lymphedema Risk for Breast Cancer Survivors.

Note that this study was published as an abstract and presented orally at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.

Also note these prior studies: Lymphedema initiated by aircraft flights. Casley-Smith JR, Casley-Smith JR. Henry Thomas Laboratory, University of Adelaide, S.A., Australia. Precipitating factors in lymphedema : Myths and realities, Author, ROCKSON S. G

Here's the press release:

http://www.medpagetoday.com/MeetingCoverage/SABCS/12142

A study was presented at the 2008 San Antonio Breast Cancer Symposium (SABCS) about the risk of lymphedema when flying. A news release about that study came out in the on-line newsletter, MedPageToday.

According to the news release, the study found that women who've had breast cancer surgery "need not worry" about developing lymphedema when flying.

But, that isn't what the researchers said in their report. The results and conclusions in their SABCS meeting abstract (Abstract #1119) are different from what the news release says. Here's a link to a page with a search engine that can be used to type in the abstract number and access the abstract of the study: http://www.abstracts2view.com/sabcs/sessionindex.php

The study involved 75 women who had recovered from breast cancer surgery and were flying to Queensland, Australia, to participate in a dragon boat regatta. The researchers used "bioimpedance" to measure extracellular fluid in the arms of the women before and after the airplane flights.

One problem with the study is that bioimpedance was the only method the researchers used to see if the women had developed lymphedema. Some lymphedema researchers and clinicians think bioimpedance might not be sensitive enough to detect lymphedema until it reaches a severe form (Stage III). So, swelling that was less severe might not have been detected in this study.

According to the news release in MedPage Today, 5% of the women in the study did develop a "clinically significant" increase in arm fluid, as judged by bioimpedance. Five percent seems like enough of a risk to warrant taking precautions when flying. What is odd is that the researchers reported a different number in their abstract--not 5%--for the prevalence of "clinically significant" arm fluid. They said 15 of the 75 women developed a "clinically significant" increase; and 15 of 75 is 20%, not 5%. Twenty percent is considerable risk. Most women would probably think a risk of 20% was worth "worrying about," and worth taking precautions.

But not all the women in the study were at equal risk of developing lymphedema. Of the 75 women, 12 took fairly short flights to Queensland from other locations in Australia. Only one of those 12 women had a "clinically significant" accumulation of arm fluid. The other 63 women in the study flew all the way to Australia from Canada, which was a much longer flight--a "long haul" flight, according to the researchers. Among the 63 women who took the trans-oceanic flights, 14 had a "clinically significant" increase in arm fluid. So, the women on the longer flights had a 14/63 = 22% chance of developing a "clinically significant" increase in arm fluid. That number would likely attract most women's attention and cause them concern.

According to the researchers, 8 of the 15 women who had a "clinically significant" increase in arm fluid had enough of an increase for it to be diagnostic of lymphedema (i.e., they actually developed lymphedema). All 8 of those women were on the flights from Canada. That means 8/63 = 12.7% of the women who took the trans-oceanic flights developed bona fide lymphedema in association with their flights. The news release said all but 2 of those women had been diagnosed with lymphedema previously. That statement implies that lymphedema triggered by flying is somehow less important if it is a recurrence than if it is a new case. In contrast to that statement in the news release, the number of new cases reported in the abstract was much higher. The researchers said in their abstract that 6 of the 8 women diagnosed with bona fide lymphedema in association with the flight had not had arm swelling prior to the flight--this was a new diagnosis of lymphedema for them.

Finally, the news release failed to emphasize an important point: The women in this study were traveling to Australia to participate in a dragon boat regatta. According to the researchers, 94% of the women in the study had "trained at a moderate to vigorous intensity for the regatta." We can probably assume they were in pretty good shape--their upper-body conditioning was likely much better than that of most women after breast cancer treatment. Several studies have shown that a supervised exercise program involving upper-body strength training can reduce the risk of lymphedema after breast cancer surgery. Wouldn't that mean the women in this study were at lower risk of developing lymphedema in the first place? So, why would the news release mislead their readers by generalizing the findings to all women?

The first sentence in the news release says, "Women who've had breast cancer surgery need not worry that pressure changes in an airplane cabin will bring on lymphedema, researchers found." But that's very different from what the researchers concluded in their abstract. Here's what the abstract said: "For the majority of women who undertake moderate to vigorous upper limb exercise, airplane travel did not have a significant impact on extracellular fluid ratio."
Those two statements mean very different things. The discrepancies in representation of the results of this study are troubling, and should be clarified for the benefit of all women who have been treated for breast cancer and are facing the risk of lymphedema.

Ah, bioimpedance--I've been having a huge issue with it over the last 2 weeks as the manufacturer has created a fake website "lymphconnect.com" and pretends to be a patient community, while it's marketing, and re-reading the Avon White paper, it's just a marketing paper as well--yet sponsored by all the major LE groups.

I asked all the members of an organization devoted to ensuring quality in LE treatment what they thought of bioimpedance, and got back thoughtful responses that it's ability to detect LE was limited--right on the L-dex marketing page, it says, this device is not intended to diagnose LE...

Here's what one great therapist/instructor wrote: BIS=bioimpedance

Once tissue fibrosis is present, the BIS is certainly no longer a valid and reliable tool. It is used in order to evaluate early swelling and does not specify the type of fluid.
Other information to assist in obtaining accurate data-
Empty bladder
2 exercise within 2 hours of reading
No caffeine within 2 hours of reading
No alcohol within 12 hours of reading
Contraindications- pacemaker/pregnancy/metal implants- if there is a total joint, use the uneffected lower extremity as your ground
Alcohol is used to prepare the skin
The patient must not remain in the supine position for a long period of time before the measurement is taken.
I have had some false positives, but ususally not false negatives (I can identify the source of "fluid")
As was stated previously, the BIS reading is not an isolated #, rather one of the tools used to assess our patients.
 

Why do I think when I go and find that paper, that impedimed or its usual people will be the authors? Sigh.

Kira

 

kira66715

Here's the abstract from the Casely-Smith study

http://www.ncbi.nlm.nih.gov/pubmed/8929203Aviat Space Environ Med. 1996 Jan;67(1):52-6.
Lymphedema initiated by aircraft flights.
Casley-Smith JR, Casley-Smith JR.
Source

Henry Thomas Laboratory, University of Adelaide, S.A., Australia.
Abstract
INTRODUCTION:

This study arose because a number of patients volunteered that flying had triggered, or worsened, their lymphedema. The nature of lymphedema is discussed, including the pre-lymphedematous latent-phase. In this phase the limb is clinically normal, but lymphostatic. There are many of the alterations found in clinical lymphedema involving blood vessels, tissues, lymphatics, and proteolytic cells. Since edema itself impairs many of the safety factors against edema (increased tissue hydrostatic pressure, dilution of proteins in tissue fluid, increased lymphatic transport, and increased proteolysis), any edema occurring in such a limb is likely to persist as chronic lymphedema.
METHOD & RESULTS:

Questionnaires were sent to 1,020 patients with lymphedema; 749 replied, with 531 answering a question about what triggered the condition. It was present from near birth in 41, but developed later in 490 (163 post-mastectomy lymphedemas, and 136 primary and 191 secondary leg lymphedemas). In 27 of the 490, it started during an aircraft flight (15 legs and 12 arms). In addition, flying caused existing lymphedema to permanently worsen in 23 arms and 44 legs in the 749 respondents. Some typical case histories are given.
CONCLUSIONS:

Because of its frequency in arms and legs, it is highly likely that this triggering, or worsening, of lymphedema is produced by lowered cabin pressure. Obstruction of veins and lymphatics, and reduced muscle pumping, may contribute to this in the legs. Using additional compression for existing lymphedema, or limbs at risk, would prevent this. If it occurs, it should be treated by additional compression, using inflated splints or pressure bandages.

And the opposing point of view, from the Australians as well--it appears to be based entirely on surveys--not sure how they determined who had LE:

http://www.ncbi.nlm.nih.gov/pubmed/14965648

Compression prophylaxis may increase the potential for flight-associated lymphoedema after breast cancer treatment.

Graham PH.

Source

Cancer Care Centre, St George Hospital, Kogarah, NSW, Australia. p.graham@unsw.edu.au

Abstract

This study aimed to assess exposure to flying in breast cancer survivors and assess the relationship of flying to lymphoedema. A total of 293 relapse-free breast cancer survivors with known pathology and treatment details and prospectively measured arm circumferences were surveyed for their flight exposure and precautions history. Of these, 287 responded, with a mean follow-up of 31.6 (4-111) months. A total of 50.5% had flown, and of these, 27% had travelled overseas. The mean number of flights was 5.3 (1-100); 24% had taken lymphoedema precautions, 90% of which utilized compression techniques. There was no significant difference in lymphoedema rates for fliers (11.2%) and non-fliers (8.3%). No woman reported permanent (new or increased) swelling after flying. Of the nine reporting temporary swelling, six reported 1-3 concurrent potential risk factors. On regression modelling for both measured and self-reported swelling endpoints the use of precautions (OR 5.6 for lymphoedema and 3.7 for flight-related temporary swelling) were statistically significant. For patient-reported swelling, the number of positive nodes (OR 1.2) and the number of overseas flights (OR 1.4) was also significant, whereas for clinical lymphoedema age (OR 1.07) was significant.

We conclude that domestic air travel (<4.5 h) is low risk and that compression devices are possibly counterproductive.

So, that's the controversy, but it sure has not been definitely studied.

Kira

kira66715

I did get ahold of the study that "debunks" compression for flying, and it's ludicrous: they measured 293 of this surgeon's patients at 2 spots before they surveyed them, and then based the entire study on self-reported swelling.

METHODS
From the author's personal database, 293 women
registered before January 2000 who were alive and
without any relapse of breast cancer were identified.

These were surveyed during April and May 2000 by a
single postal survey, followed by phone contact for the
79 women who did not respond. A total of 287 surveys
were completed.
Three subjects could not be contacted by phone in the
survey period and three surveys were unable to be
completed because of language difficulties. Clinic assess-
ment of lymphoedema, performed prospectively, was
taken as arm circumferences measured 10 cm proximal
and distal to the olecranon of the extended arm.
Measurements
􏰗2 cm difference were classified as lym-
phoedema, ignoring handedness.10,11 In addition to
precedent and the simplicity of this technique, we
have so far found the rates of lymphoedema detected
this way to be similar to patient-reported rates of arm
swelling in the context of a prospective multicentre
randomized trial.12 Patient and treatment factors
measured were age, type of surgery, number of nodes
sampled and number positive, radiotherapy technique
and follow-up time since date of surgery. The survey
asked women if they had any concerns regarding
flying subsequent to treatment for breast cancer,
assessed their flying exposure and whether any pre-
ventive measures were taken when flying. The survey also
asked whether any problems had occurred during or
within a week of flight, whether any temporary or
permanent swelling of the arm (de novo or in addition to
previous swelling) had occurred, and checked for recall of
any other risk factors in those who did report any
swelling.

So, without any examination, and based on self reported swelling, this physician concluded that compression was a bad idea on air planes.

Cut me a break.

Binney4

Kira, thank you! We sure do need more research!

The lymph system is the new kid on the block where medical science is concerned. StepUp-SpeakOut has a page with a short history of LE throughout history that maybe helps explain why we're so far behind on researching this hugely important part of our anatomy. It's here:
http://www.stepup-speakout.org/History_of_Lymphedema.htm

The last section on that page, "Invisible is Easy to Forget" gives a brief run-down of lymphatic research since early times.

Be well!
Binney

kira66715

Binney, that study is SO bad, it wouldn't get an honorable mention at a middle school science fair, yet it's cited in the NLN position paper on air flight and LE.

And, since only the three studies come up in pubmed when you search air flight and LE, I'm thinking it's the reason common medical knowledge is that "compression garments can be dangerous if used for women at risk"

That study isn't research, it's one guy asking his patients some questions. Recall bias and lack of objective measurements are just the tip of his ice burg in lousy science.

Kira

FLwarrior

Wow Thanks Kira...it will take me a little while to digest all the info.  I just wanted to says Thanks for taking the time to share it with us.  I have read all of your posts, now I will go back and read the links.

Deanna, Thanks.  You are always a good sounding board!  I appreciate your insight. Thanks for always being there!

Jane, Thank you.  I love your " Cocker Spaniel" avatar pic.  I wish I was dancing...but it feels like everyone IS watching!  I hope to be DANCING soon!

You ladies are incredible!!!! Happy New Year to you all!!!!!!!!!!!!!!!!!!!!!!!!!!!

MostlySew

Help! So, at my 1 month check up following radiation with my new MO (whom I really liked) I mentioned the two new "dimple" spots (or divots?) forming under my breast. I thought they might be scar tissue as I had "tissue rearrangement" with my lumpectomy. The place is below where the tumor was. He did a breast exam and says the scaring at the surgical site felt normal, and then pressed on an area right above that and said "is the the spot?". I about jumped off the table as it really hurt. He said he didn't think it was too much to worry about and thought it was perhaps a swollen node. He wanted me to come back in a month and if it was still there we would do an ultra sound. The spot is on the breast and not at the SNB site. That was on Dec 5th.



I have been dutifully ignoring this thing the best I can getting thru the holidays. However, now my fears are returning full force. I'm sure the spot still hurts and is inflamed. I see the doctor Jan 6th.



Think this could be lymphadema? I've got a touch of cording in my armpit, but usually some lymphatic massage will take care of it. I haven't seen a lymphatic massage therapist except to take a basic class before initial surgery. The massage doesn't seem to help with this spot.



Anyone had anything like this? Words of wisdom? Thanks

carol57

Kira and all,



For whatever it's worth, just as I was discovering I had LE (upper arm and trunk just below armpit on SNB side), I resumed frequent flying for business. At the time, I was clueless about any question of LE risk with flying. The effect of flying was to trigger swelling in flight on cross-country flights and within hours of landing after short flights. Binney suggested wearing Under Armor shirts during the weeks it took for me to get a proper evaluation and diagnosis, and that made a significant difference, once I realized I needed to continue wearing the shirt for some hours post-flight, and refrain from vigorous cardio exercise until the next day.



Now--four months into my LE journey--I have had great success using MLD to tame the swelling, and I am careful to do MLD as soon as feasible after each flight. With swelling well controlled now, I realize how fortunate I am that my LE is mild. I am being fitted for a sleeve and gauntlet next week, for the specific purpose of wearing compression during both flights and weightlifting that I plan to start as soon as the sleeve and gauntlet arrive and my therapist double checks the fit. My flight-swelling experiences are anecdotal, but they do suggest that for me, compression in the air is a no-brainer. I do wonder, however, how the sleeve alone will help control the truncal swelling. Has anyone experimented with a compression shirt coupled with a sleeve?



And then there's the kayak question! I am madly hoping that the weightlifting (my trainer did a PAL workshop, so this will be slooooow and steadddddy) will return my arms and core to last June's pre-surgery paddling condition. The ace in the hole is that in addition to my beloved single sit-inside, we own a double Hobie kayak that uses the feet for primary propulsion. We are in the habit of having DH peddle from the back while Remy the standard poodle takes in the view from the front of the Hobie, and I paddle alongside in my single. But if need be, I can be the poodle chauffeur and DH can use his own single. Kira, any time after the ice thaws around here, you are invited to come by for a Kalamazoo River paddle, er...peddle!



Carol

kira66715

Carol, I watched a woman peddling her kayak, and it was the first time I'd seen it: we sat and debated what it was--an ocean kayak with a rudder, but she's primarily peddling--now I know.

We have ancient Keowee plastic kayaks, and I haven't been in one for three years now, so I so want to join you in the PAL protocl strengthening. I need to be stronger, that's for sure.

Mostly Sew: breast LE is usually swelling and not focal spots. It sounds like a local issue--there are problems that can happen after surgery, like hematomas, fat necrosis, seromas. I work in a rad onc office, and it's just so common to see women back at the one month check and have them report soreness of the breast (and sometimes that soreness is still an issue at later visits.). I'd think that perhaps your breast surgeon should check this out, or if it's really worrying you--why wait on the ultrasound? Waiting and worrying isn't good for you/us. Please let us know how you're doing.

Kira

Cats134

Got my pathology report back, good news...no invasive cancer (happy dancing), unsettling news, total of 19 lymph nodes taken out on my right side, 9 on my left.  We distinctly remember hearing the BS say 4 on right side.  SN biopsy was done on right side only.

So...do I have to watch for lymphedema in both arms now?  Where do I get my BP taken? Needle sticks?

I'm printing out so much info from this post but my head is just spinning. 

cmhartley

Hey Cats, I had my mastectomy, SNB and then axillary dissection in 2006.  I didn't really develop LE until 2010 after a trip to Colorado, plane ride, needle stick (long story) and then I cut my finger.  I guess the series of events was enough to put me over the edge.  It was amazing how quickly my arm swelled up after the cut.  However, I did have a very low grade LE that didn't require any treatment probably since after my surgery.  So, definitely follow the advice of everyone on this forum for what you can do to protect yourself.  Active LE absolutely sucks!  I am so tired of bandaging and spending my life going to doctor's appts., therapy visits, etc.

Best wishes to you,

Cat 

kira66715

Cats, of course your head is spinning--I remember when I read my path report, I actually got nauseated.

And, I posted WAY too much yesterday. Hard to see the forest for the trees.

If the SNB was only done on the one side, then those other nodes were in the breast tissue--there's a fair amount of them in "the tail of spence" the area leading up to the axilla.

http://en.wikipedia.org/wiki/Tail_of_Spence

It would make sense to

1) review the report with the breast surgeon

2) see a LE therapist for prevention: get measured for baseline, get information and have resource in case, heaven forbid, something happens.

Here's the link to finding a therapist:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

We're all at risk when anything disrupts our lymphatic system, and whether to allow IV"s and bpr's on the non-SNB side is a tough question--I'll ask Binney to weigh in. 

Congrualations on the no invasive cancer!

Kira

carol57

Kira,

The Hobie with foot propulsion has genius-level engineering. You push with your feet in a back-and-forth motion, but it's not in a full circle, so not like peddling a bike. Underneath, there are two flippers--literally designed to mimic the motion of a seal's flippers--that in a sense, swim the breast stroke as you push with your feet.  If it gets too shallow (6" or so), the flippers might catch on the bottom of the lake,river, etc. so you can park them so they hug the bottom. Only then do you need to pick up a paddle. Steering is accomplished by using a rudder that you move using one or two fingers of your left hand. No strength required and the movement is small and not constant (so I don't think any hand LE issues).  Hobie is so confident that you'll not need to paddle, the kayak comes with a cup holder for each seat!  It's quite easy to move the boat, as of course we have a lot of muscle oomph in our legs.

In our double, we put in an optional turbo drive in the rear position--longer flippers, probably a bit broader, too, and something different about the angle--that really sends the kayak flying.  Whoever sits in the front cannot easily tell if the person in the back is peddling (except perhaps due to speed loss), so it's a great place if you want to sneak some rest periods in!  This kayak is custom built for women with BC-related LE!  

I love the maneuverability of my single sit-inside, and because it is a single, it's quite nimble and easy to paddle.  I'm committed to a six-day river kayak/camping trip this July--did it last year with DH, sis-in-law and a friend, packing all the camping gear in kayaks, plus the dog of course.  Last year I took my single, but if need be, I'll be doing the Hobie this year.  But I'm feeling very, very optimistic on results from strength training by then. 

Maybe you can drop some really big hints for a belated Santa present, or a birthday present...?  It would be a great way to rediscover some kayak joy and help motivate you for the strength training to get back to moving the paddles in your regular kayak.

I live on the Kzoo river, only where it has been dammed to form a good-sized lake. It's 38 degrees out and misty today and out my window I see....two kayakers!  I've seen these two many times, even weaving through ice patches.  I'm not that hardy, but after some spring warm-up, I'll be out there, too. (Seeing two bald eagles swooping and fishing, too. I think the yakers are trying to see how close they can get.)

Wishing you strength in the new year so you can get back in your kayak--

Carol

FLwarrior

Carol, I have seen the Hobie peddle kayak and it looks like it would be ideal for "our" (reduction in LE aggravation) situation!  I have a light weight, stable, single sit on.  It sounds like you live in a beautiful place!  I live at the ocean, and like to explore the bay areas, my favorite is to go island hopping.  I went and walked on the beach yesterday and there were lots of kayaks, canoes and sailboats going out and coming in, also lots of stand-up paddle boards. 

Have you done the "Live Strong" program at the Y?  I was thinking about signing up for it in a couple of months.  I wonder how it compares to the PAL Protocol?  Do you know?

LtotheK

Thank you so much for this robust conversation!  I've printed out this thread so I can discuss it at length with my PT.  I really wish she'd gone for the 15/20 mm, as I don't have active signs of LE at this time....

carol57

FLWarrior,

The Hobie (single or double) is also a sit on top, so very stable. Our paddling is all on rivers, so with the current, it's often a very easy float. I've only tried ocean kayaking a few times, when I was much younger.

Live Strong is an all-around exercise program for cancer survivors. My understanding is that the trainers who will be giving the program must watch a web seminar about the PAL Protocol, but they are not trained in it per se.  Theoretically the Live Strong trainers should know what needs to be done to modify strength training to accommodate LE needs/risks.  I think if you meet with the trainer ahead of time to discuss your LE needs, you will get a feel for how seriously he or she takes it.

I am so serious about managing my LE risks (it's mild and I really really want to keep it that way), that I brought in one of the PAL Trial research team members to teach a one-day workshop for certified personal trainers and lymphedema therapists.  You can bet my own trainer and my LE therapist were there!  We had four trainers and three therapists. I was able to get some sponsor help to cover the faciliatator's travel expenses, plus expenses to bring in lunch, breaktime refreshments, etc.  Each trainer/therapist paid a tuition fee to attend, but it was a very reasonable fee.  If you want to learn more about the workshop and what was involved in bringing it to a gym in my little town in Michigan, PM me and I'll give you all the details. 

One of the participating trainers is the program director at the YMCA in a nearby city.  They are not doing Live Strong (too expensive, she said) but had crafted their own program for cancer survivors, to be taught by two certified personal trainers who are in fact BC survivors.  After her day at our PAL workshop, this trainer/program director told me she would definitely be modifying their program to specifically address the LE needs and risks of BC survivors.

My trainer, who owns the gym where I work out, has agreed to offer a free twelve-week (2 x per week) group PAL strength training program to any BC survivor who would like to participate. So two of the LE therapists who attended are working on reaching out to current and past patients to see who might have interest, and we will schedule that 12-week session soon. 

I also have one oncologist who is sold on the idea and who now is handing out an info sheet I designed to explain strength training risks for BC survivors and where to find a trainer who came to the PAL workshop.  And I hope to do a second workshop in the spring, to pick up more gyms and trainers.

The woman who taught the workshop was wonderful; both trainers and therapists were very pleased. So if you want to find a resource for PAL-protocol weightlifting, well...create your own resource!  Bringing in the workshop took some time and organization, but it was definitely do-able.

Carol

carol57

Kira, by the way, you never post too much!  You are my main source of studies and articles that I cannot easily find myself--you have sometimes posted key information from a study that I could not see because it was not on pubmed or elsewhere that is public.  I'm gathering ammunition for a local LE patient advocacy campaign, and sorting through what's good and what's dubious is not so easy. So your post on the questionable science underlying one study (did you post that here or in another thread?) is simply invaluable.  And that's just one example.  Thank you for the amazing commitment you are making to detail and to accuracy.

Carol

Binney4

Cats, what wonderful news on the path report! A celebration is in order -- specifically something chocolate.

What you want to do about risk reduction on the left side is your call. But I sure do understand about trying to make this kind of decision while your head is spinning with all you've been through. So to make it as easy as possible, JUST SAY NO to any blood pressure, blood draws, injections or IVs in EITHER arm for now. That way you're as protected as you can be while you continue to sort out your own best path.

Blood pressure can be taken on your calf (or your thigh, but the calf is more comfortable.) It will read a little higher than an arm bp, so doing it as often as possible until you figure out what's "normal" for you is important. You need to be lying flat for a few minutes before the reading is taken in order for it to be consistent. If they don't want to do it that way, tell them not to bother because it won't be accurate.

IVs and blood draws can be done in your foot. Sounds bad but I don't find blood draws any worse than in an arm. If you're anxious about it you can use Emla on the area to reduce sensation, but like I say, it's not actually that bad. You'll need your doctor to write "Draw from foot only" on the bloodwork sheet or they won't be able to do it. Also, if you call the lab and ask they'll tell you they don't do it, so don't ask -- just show up with the lab sheet and calmly ask (tell) them to do it.

The biggest problem I run into with this is nurses (or doctors) who think they know better than you, who will tell you there's no risk. It is not their arm -- it's yours. So smile sweetly and be firm.

Tell us how we can help!

Gentle hugs,
Binney

Edited to add: If you have a history of blood clots, that might be a reason NOT to use your foot -- in that case, use your left arm.