Letter to my Surgeon

Suzybelle

I sent this letter along with the information that Kira posted on Step up/Speak out, and had the most wonderful telephone conversation with my surgeon as a result....he and his office are going to change the way they discuss LE with their patients, and they are changing their brochures to include more information about this.  I was so happy, but at the same time it made me a little sad...too late for me, but maybe not for some other woman.  I thought you guys might want to read my letter and maybe even use it if you decide to...sorry this is lengthy.

Dear Dr. __________:

I am a former patient of yours who developed lymphedema as the result of a mastectomy you performed on me in February, 2010.  While I certainly don't think you  had anything to do with my developing lymphedema, I did want to send you the enclosed information about this condition in the hope that you will consider giving your patients information about the risks of developing lymphedema , and having your patients evaluated for lymphedema prior to surgery.

I am very pleased with everything you and your staff did for me; both you and your nurse were both extremely kind and professional during my office visits. However, I think I would have definitely benefited from at least an awareness of the risks of lymphedema development, and what signs to look for with regards to it.  I am doing very well overall, both mentally and physically, and manage my lymphedema very well thanks to a wonderful physical therapist located in your building, __________.  I have also learned how to self-manage it.  I continue to be under the care of Dr. _______, and like you, he is a great doctor!  I am also taking the enclosed information to him on my next visit in April. 

I consider myself very blessed to have received such great medical care for the past year, and you and your team definitely were an integral part of that.  I hope you will not think me forward in sending this to you; if I had to pick one thing that I would change regarding my interaction with you and your staff, it would be that the topic of lymphedema needs to be addressed with your breast cancer patients before and after surgery.  While there's no sense in scaring an already freaked-out cancer patient, there is a very real and valid need for it to be brought out, and the risks discussed.  Other than that, I would not change a single thing regarding the care I received from you and your team.

I am including my contact information should you or a member of your staff wish to call me regarding this topic.  Lymphedema has changed my life, and not for the better.  I have given up things I loved to do, and the emotional aspects of dealing with a cancer diagnosis and subsequent surgery were difficult enough without dealing with a swelled and painful arm.   I am generally a positive, happy person, but could have definitely done without lymphedema.  I will be dealing with it for the rest of my life.

Again, I hope you won't think me forward in sending you this, but if one woman can avoid this as a result of this letter and the information I've enclosed, I'll be happy!  I know based on my interaction with you that the health and care of your patients is extremely important to you, and I hope that you will consider what I'm asking.

Kind Regards,

kira66715

Suzy, great letter, and I'm glad you were able to talk to him, and he's open to the information. It's so hard not to look back, not to blame--because as you wrote, LE is a life changer, and not for the better.

I do think that with the new studies about ALND, and the work of the women on this forum, LE is being acknowledged.

Hard not to do the "shoulda, coulda, woulda"--because we know more now than we ever could have known then. You're helped the women who come behind us immeasurably.

Kira

sisterinspirit

Suzy,

Thank you so much for sharing the letter to your surgeon.  You have spurred me to do the same thing.  In my case (SNB & lumpectomy), and I think in many cases where a patient's interaction with their surgeon is very limited, the surgeon has no idea that a patient has been diagnosed with LE as a result of surgery and radiation.  It's like the circle of care is broken because information is not being shared.  You are so right that in order to improve the level of care for those that follow us that we need to be sure our caregivers are informed of what has transpired.  It is an issue of education and improvement, not blame.  Thanks for the nudge to do the right thing. You ROCK!

JB, I am so heartened to hear of the proactive care patients receive in OK.  We can only pray that some day that will be the norm everywhere. Would be interesting to know how patients fare in the long term with such excellent care.

Deb

BoobsinaBox

Deb,

Certainly not all of us receive good LE care from our surgeons in OK.  My surgeon told me I had no risk when I asked beforehand, then after the surgery he said I had no risk, "because he only removed 1 or 2 nodes in the breast tissue."  Then a year later I got the pathology report and found out I'd had ALND 12 nodes on left and 9 nodes on right.  I also had serious nerve issues in the axilla, chest, and inside and back of upper arms and on my back near the shoulders.  He claimed, "I didn't do anything to cause that!" when I asked him for help.  I insisted on PT finally, and I was fortunate to get good help, or my life wouldn't have been worth living.  I'm so glad some people are getting good care in OK!

Dawn 

kira66715

When surgeons and institutions acknowledge and treat LE it's great, but unfortunately, it seems to be rare still.

I sent the page to two institutions in Boston, both part of the "Partners" health care system: Brigham and Womens/Dana Farber and Mass General. They have diametrically opposed approaches to LE:

Dana Farber wants LE to be a sentinel event, so surgeons tend to deny it and their PT department is only just hiring LE therapists. Mass General has a protocol of measuring all women's arms pre-op with a perometer and post-op at every visit and is running a clinical trial to start early intervention in their excellent PT department if any changes occur.

Both institutions thanked me for the link--I don't think it will result in a major policy or therapeutic change, but at least I put it out there. 

I applaud the surgeons and institutions that are "on board" and this forum exists to try and bring more on board. 

I was treated at a center that has a LE cliniic that was staffed by LMT's under the guidance of a nutritionist, and considered "alternative care": I referred myself early, and due to their lack of knowledge, didn't get the help I needed. So, as one of the head of the treatment schools says: "We can train them, and just hope they go out and provide quality care"

I do think with the recent clinial trial to limit ALND--and one of the stated goals was to reduce LE, we suddenly got some credibility that this is not just swelling.

It's not a zero sum game as I write all the time: a good center doesn't cancel out one that either ignores, denies or provides poor care for LE.

Kira

Suzybelle

I was very gratified about the great dialogue between my surgeon and me...but I'm going to follow up the phone call he made to me with a short note in a couple of weeks to gently remind him about all of the changes he says his office is going to do as a result of my letter and the info. I included.  My LE therapist told me that her group has been trying to get in to see them for years with no success. 

I would have never thought to do this if it hadn't been for this board and what I've learned on here.  I don't feel like I should have to 'hide out' because I have LE.  My surgeon is a nice man, but he and his partners need to do a better job with LE and I feel like it's my job to help them get it done.  And if that means a constant campaign of gentle but persistent nagging, then so be it. 

 Sisterinspirit, you are so right about the circle being broken...one of the points my dr. made to me on our phone call was that I was the first patient he'd ever had who came back and said, "I have LE because of this."  I wanted to argue about the stats. in kira's article and I told him that I figured it was probably b/c his patients were under the care of an onco. or another dr. at that point...and he's never informed of it.

All in all, it was a very, very positive conversation, but I'm not done.  And I am seriously considering a campaign of sending the same letter with the same info. to every single breast surgeon in my area. 

Things are getting better with regards to LE education and prevention, but they could be a lot better.

Binney4

Suzie, go for it! I'll be interested to know what responses you get from other surgeons. Then tackle the oncs too, because they do follow-up on us for years and their cooperation with watching for this and making quick referrals would be really make a difference.

You go!
Binney

LoisC

Anonymous

Just fyi.  I had SNB with 2 removed and have swelling in that hand.  I never thought that SNB could cause it. 

kira66715

Aug, me too. And my swelling is in my hand also. My surgeon took 2 sentinel nodes and one that was "in the way".

Hope you're getting good care for it, and it's under control. Still stinks to have it, though.

Kira

Suzybelle

UPDATE:

My surgeon has a draft of a brochure that he wants me to review (besides the letter above, I sent two more letters plus some nice little notes I dropped off..STALKING CAN MAKE A DIFFERENCE, PEOPLE!! ) - his office is going to begin going over this brochure with every new bc patient.  I'm going to pick up a copy and review it and let him know what needs to be changed.

I am SO EXCITED!!!!!!!  Phase two is (with my bs' permission) to send a copy of the brochure to every surgeon in town who does bc treatment and get them to start thinking about how to better educate women about LE.

Yahoo!!!!!  At this rate, world domination cannot be far behind. 

kira66715

Yeah Suzy, what a great response from the breast surgeon. What a great job you did to educate him and all the other surgeons, and all the women that come behind us.

Kira 

Binney4

Kira, would this be "a great response from the breast surgeon" or would it be self-preservation from the perceived threat of being stalked by a brownie-munching woman with a huge wrapped arm?

Way to go, Suzie!

Hey, we'd all love to know what the brochure is like and what it covers. Looking forward to your report!
Binney

hymil

Wow Suzy that's brilliant.

Here it comes...... (e-brownie to follow. DD ate the slab of choc before i could cook, that happened last time too ) your brownie-badge from Binney's catalogue:

- This is "Educating Our Healthcare Providers Without Decking Them"

sisterinspirit

Way to go Suzy!  You are an inspiration to us all!

Deb

GabbyCal

Suzybelle - I just came across this discussion today. What an effective letter! I can see how you were able to make progress with him when others were not. Other than JBinOK's experience, I think most surgeons minimize it because as you say by the time it develops, the patient is no longer directly under their care. The lifelong risk, whether with ALND or SNB, is something most people I've spoken with don't really understand. Your letter and your surgeon's brochure could be the beginning of some good national education program on this dreadful condition. Indeed, you ROCK!

Suzybelle

Thanks, Ladies!!!!!  I was pretty jazzed about it.

 Binney, a brownie-munching, tamoxifen taking, wrapped arm woman is a scary thing, indeed.

kira66715

Don't forget the cowboy boots, wonderful voice and gorgeous red hair. A fashionable, talented and beautiful scary thing, with an amazing sense of humor

Seriously, when our efforts make a difference--like with the stepupspeakout page, it is immensely gratifying, and makes me feel like I'm protecting other women.

Kira

Suzybelle

Oh, Kira - thank you!!!!!!!!  You are such a sweetie. 

It does make me feel better about my LE to know that I'm helping other women to avoid it. 

Being a victim is no way to go through life.

AnneW

Suzybelle, I don't often follow the LE forums, but when this pooped up on the "frequently viewed" list, I had to peek.

You are a shining example of the difference one person can make at the grass-roots level! You should feel so empowered! Your surgeon heard you, responded, and now other women to follw will at least be aware of the risks involved.

With my first BC, I was in a small CA town. My surgeon was young and up to date, and worked very closely with a PT who specialized in LE. My insurance company fought me going before I had a diagnosis, but my persistance with letters changed that. I had a two level axillary dissection, and no LE, though I did have a bit of a scare when I hiked at altitude right after rads. But my education from the therapist resolved that problem.

With my second BC, I was at a major teaching hospital. Not a word about LE. I was to have a SNB, so I "wouldn't be at risk." I knew better. Immediately after surgery I found an awesome LE therapist who did assements and massage and began my exercise program. Again, I had no difficulties. I am blessed. But aware that it can all change on a dime...

Anyway, thanks for your hard work. I'll bet others will use your letter as a template and begin their own education campaign. Next up, a letter to your local paper, perhaps?

You go, girl!

BeckySharp

Suzy,  Hooray for you.  I love this letter.  If we can change one person at a time that is forward progress.  I see my BS next month and am going to talk to him about this.  I really like him and hope he will "hear" me.  I am still reeling from the surgery, radiation, lymphedema one week later, and going back to work full time for the past two months that I have not yet felt like being proactive about pre LE treatment.  But I will! I had mammosite radiation and my rad onc says "no way" that type of radiation caused LE.  I had two nodes removed and he says that is the cause.  I was listening to Nancy Snyderman on Today Show the other day.  Wish we could get her to do a segment on LE.  If we can help others avoid this it would be great.

I was at Wholesale Sam's yesterday.  They had a big box of brownies for sale.  I had to laught because I will never be able to see a brownie again in my life without thinking of you ladies!

kira66715

Nancy Snyderman--who is an ENT--talked about the article about limiting ALND in selected women and would NOT say the word LE. Binney was steamed.

Considering one of my currently most rewarding patients is a lovely guy with tremendous head and neck LE who is doing great with therapy, she should know better. 

Say the word "lymphedema" !

Kira

edwards750

Ditto from me Suzy.  I love proactive people who arent afraid to take anyone on - even our doctors. Your letter was direct but you didnt play the blame game except that you were not well informed and I have to admit I was not either. All I was told and this was by my onc was "you dont want to get lymphedema." Well of course I didnt and I wasnt even sure what it was just that I didnt want to get "it." My BS is one of the best in town but he is also a borderline charm school dropout. I wonder sometimes if men - not trying to be gender driven but... - who are breast surgeons really understand that we can handle anything - because we have to - so give us the whole unvarnished truth about what we are facing. With holding information does not make our situation more tolerable and in fact does the polar opposite because we are blind sided when we are then faced with conditions like lymphedema. We all probably think and hope we wont get "it" but at least you could have been braced for it. So, again kudos to you Suzy for being our crusader. Thanks....diane