radiation or not

runnermama

What would you do?

 I'm 36 and had small tumor removed by lumpectomy and no lymph nodes involved.  9 nodes were removed though.  Went through chemo and now about to start radiation.  I am terrified of lymphadema.  I've already noticed some cording in my armpit that extends half way to my elbow.  I'm a very active person (firefighter/paramedic, runner, swimmer, mountain biker, climber, etc) and I have two young children that need to be carried, so I'm using my arms alot. I trust all of my doctors as far as their specialties go, but I haven't gotten much helpful advise as far as lymphadema goes.  They all seem to minimize it and tell me it's better than having the cancer return.  After reading all of your posts, I'm not so sure.  I know I'm already at risk because of the surgery, but I don't want to increase my risk if I don't need to by doing radiation,   I will be doing the Tamoxafin.  Any advise for someonewho is panicing?!  Does anyone regret doing the radiation?  Thanks in advance for your help.  Sorryif this is sort of rambling.  I'm trying to feed my baby and my daughter is crawling on me as I type!

Binney4

Runnermama, welcome! So smart of you to be concerned and looking for ways to reduce your lymphedema risk. Brava!

There are ways to stay on top of this that don't involve denying yourself the protection of full cancer treatment. First step is to find a well-trained lymphedema therapist and get a referral for an evaluation from any of the doctors on your team. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

S/he will take baseline arm measurements for future reference, give you personalized risk reduction tips, teach you a gentle prophylactic massage technique (called Manual Lymph Drainage), and fit you for a sleeve and gauntlet that you can wear for travel, exercise, strenuous activities, and during radiation, as a way to promote lymph flow and reduce risk of fluid accumulation. S/he can also monitor you during radiation and act quickly to deal with any problems. Even if lymphedema should develop, the best way to keep lymphedema care to an absolute minimum is to to jump on it as early as possible.

You're already so aware -- you can do this!

(Bonus: s/he will also be able to help you with the cording -- nice! )

Here are a couple of websites with reliable risk reduction information:
www.lymphnet.org  (see their Position Papers on risk reduction, air travel, and exercise)
www.stepup-speakout.org/riskreduction_for_lymphedema.htm

I absolutely don't regret the radiation (though I'll admit I was terrified too at the time). In fact, I'm ten years out now, and hugely reassured because I did it.

Hugs to your wee ones -- and to you too!
Binney

kira66715

Runner mamma, the radiation is to achieve local control, and it does significantly reduce the risk of recurrence in the radiated breast.

Yes, it does add to the risk of lymphedema, but only a small percent if the lymph nodes are not being radiated.

You should talk to your rad onc about how they're planning the treatment: how much of your axilla is in the field. There are techniques to lower the amount of radiation to the nodes--like laying on your stomach, and every case is individually planned (I work in a rad onc office) so tell them your concerns.

Now, my rad onc told me that radiation doesn't increase the risk of LE, but she was lying.

The head rad onc I work for will deliberately try and reduce the amount to the axilla.

Here are some links for you:

Axillary web:

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

And info for health care providers

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

Yes, LE sucks, but you want to beat breast cancer to be there for your babies. 

Let us know how you're doing.

Kira

runnermama

Thanks for both of your responses.  I'm scheduled to see a lymphadema specialist next week, so hopefully she can talk some sense into me and calm my fears!  I had a radiology apt today to do the dry run before I start the actual radiation and basically freaked out and told them I want to wait another week and see the specialist first before I start.  They were great about it, so at least I don't feel too embarrassed.  Thanks for listening to my whining  I'll just have to figure out what not so great option to choose, and live with the consequences.

cookiegal

Actually it's a fair question. I had a very wide lumpectomy, and wonder if rads was really really needed.

My PS says she really believes my LE came from rads. I had huge breast edema the first day. It's a tough question, If someone had offered me partial breast radiation, which I know is still considered experimental, maybe I would have done that instead. I don't know if having canadian fraction or mammasite or something would have lowered the risk.

Just a thought.

Good luck!

gramma23

I did not want to have radiation and I have wished a thousand times I had not. It has cause more lumps that supposedly are fat necrosis. I worry about that. they did a biopsy on one and it is just now healing a year later. I would ask questions from everyone I know and just remember you will not heal in that area after radiation if you need a biopsy or something else. I do not want you to listen to me but ask lots of questions from experts. I am just a victim.

Carolyn

KS1

Hi Runnermamma,

I completely understand how you feel.  I told my surgeon I wanted a mastectomy over a lumpectomy if it meant I wouldn't get axillary radiation.  (Alas, in my case, even if I had had a mastectomy, I would still have needed radiation.)  

When I met with my radiation oncologist I told her I was terrified of radiation making the swelling I already had worse.  She was fantastic -- she didn't minimize my fears and she designed her treatment plan to minimize damage to my remaining lymphatic pathways.   The radiation dose to the axilla was high (included a boost), but she hyper-fractionated the dose, did IMRT and didn't irradiate the breast.  She also spared as much as possible the supraclavicular nodes and the superficial lymphatic channels on the back. Everyone's situation is different, but when you meet with your radiation oncologist, explain your concerns and ask if there is anything that can be done to decrease the chances of LE, without compromising local control.  Good luck.  KS1

peppopat

How  many  of you  are  looking at  treatment for micromets  in the lymph nodes and are opting  just  to do  radiation  and  not  a  completion  Axilla  dissection. I'm  asking  because i can't find  anyone opting just  to do radiation.

this is what  my  surgeon friend says,  "You can have only the radiotherapy for axilla, without surgery, it is still a good option."

 So  my  question is,  "is there  any  less risk  by  just  doing  Rads  for LE?

ProudMom_Wife

peppopat - I did not have micromets, but two postive lymph nodes with 9mm and 7mm of cancer in them.  I opted to only do radiation of the the axilla and supraclavical only, so my case is a little different than yours.  I refused the axilla lymph node dissection.  I was told there was risk for LE from both, although I am already at risk since some lymph nodes were removed and I had a BMX. 

No one would say if the risk was less with either option, radiation vs dissection.  I just figured with radiation everything would still be there, expect it would be radiated, and with the surgery it would be gone.  So I reasoned it would be less with radiation.  No data or facts to back it up, just my thinking on the subject.

A few folks have posted on the topic Axillary Disection under the Surgery forum, and you might find some of that informtion helpful.

http://community.breastcancer.org/forum/91/topic/768685?page=1#idx_8

Hope this helps. 

Binney4

Peppopat, maybe it would help to keep in mind what we do and do not know about lymphedema risk. In the case of lymphedema the percentages mean less than you would think. That's because with the present level of our knowledge of the lymph system, no one can predict what any one individual's risk percentage is.

Let me see if I can explain why that is in a way that's understandable. First of all, we do know there are a few things that make lymphedema more likely to develop. Some -- like overweight -- we more or less control. Others -- like post-surgery complications of seroma, cording or infection -- we have no control over and no ability to predict. And still others -- like diabetes or other vascular problems, previous surgeries to the area, or previous impact injuries to the chest -- have more to do with our medical history than anything else, so they're very individual.

But there are also other factors that influence our individual risk, and those are currently unknowable. For instance, Dr. Anthony Stanton in the UK has recently published studies that indicate that women who go on to develop lymphedema after breast cancer treatment have a lymph system that is in some ways limited. For most people, their lymph systems normally operate well below their actual capacity, but for some, even before bc their lymph systems are functioning at top capacity -- for those people the trauma to their lymph system from surgery, radiation, or even (possibly) from some forms of chemo can overload their already straining lymph system and result in lymphedema. 

Who are these unlucky people? Currently we can't predict that, so we don't know. 

That's why some women go back to bucking bales of hay or swinging through their circus trapeze act after 30 nodes removed and extensive radiation with no lymphedema ever developing, and other women develop it right out of the gate with only a single node removed.

Which woman are you? Sadly, nobody knows. So you can compromise your optimal bc treatment and still develop lymphedema, or you can go for the whole package and never have a problem with it.

In the face of that kind of uncertainty, it makes good sense to learn all you can about lymphedema even before treatment:

Find a good lymphedema therapist and get some baseline arm measurements and individualized risk reduction tips.

Review the steps you can take to keep your risk low:
http://www.lymphnet.org  (See their position papers)
http://www.StepUp-SpeakOut.org

If at any point you develop feelings of heaviness, achiness, tingling or "just feels funny," check back with the therapist for possible early-stage treatment. If you jump on it early, there's growing research evidence that you can actually keep it from progressing.

We may not be able to predict our risk accurately, but we can still be proactive about lowering it with a few simple life-style changes, and we can be on top of it enough to get help early if we ever need it.

Whew! Sorry to be so long-winded! These are tough decisions -- hope some of this helps.
Binney

Anonymous

Boy this is a tough one.  I'm a big believer in radiation.  I had heavy lymph node involvement - I think that they removed 15 of 18.  I have never had lymphedema in 4 1/2 years.  I protect my arm in little ways like avoiding a BP cuff but it's the only arm I can have blood work on and I've had a lot of that including CT scans every time I turn around - the last time they blew out the vein in that arm. 

For two years following the mastectomy, I ran a food distribution business and did pretty heavy lifting daily.  I also did a lot of yard work until recently carrying watering cans in each arm.

On the other hand, I have a friend that has had BC for 17 years.  She has very bad lymphedema and she has had some trouble finding anyone really good to work with her.

Best of Luck with your decision - this is a tough one.

lago

I didn't do rads but have mild LE in my 10 node arm. (also no nodes involved). My 4 node side no problems. Both sides had some cording especially the 4 node side. Oddly enough that is the side that doesn't have LE.

Some people are just prone to get it. They don't know why. I was told the likelihood was low since I was so thin. When my BS saw me a few weeks ago, the first time October he was shocked to see me wearing a sleeve… but I'm OK with it. It's managed. I don't have to wear the sleeve all the time.

My question is if you didn't have any node involvement why do they want to radiate your nodes? I will admit my radiation knowledge is not very deep since I didn't do it myself.

runnermama

Thanks again for the additional info.  Binny, your explanation of who gets lymphadema and why was good food for thought.  The hard thing about this decision is that no matter what I decide, I could end up with lymphadema, or I might not.  I could end up with my cancer reoccurring or I might not.  I guess for me, I need to get as much info as possible, talk it over with  my husband, pray about it and then leave it in God's hands.  In the end, I don't have much control over this anyway!  I just want to make sure that once I make my decision, I don't have any regrets down the road.  The reason that my oncologist want the radiation even though my nodes were clear, is because of my age.  She says that since I'm young, I have many years for the cancer to return, so she wants to do everything possible to make sure that doesn't happen.  I just want to make sure that it's the right thing for ME to do. 

Binney4

runner, my thoughts exactly -- no regrets!

I need to get as much info as possible, talk it over with  my husband, pray about it and then leave it in God's hands.

That'll do it!

Hugs, prayers for clarity and peace,
Binney

kira66715

Runner, I know you want to come to a decision, but have you thought of consulting a second radiation oncologist? I work in radiation oncology and each case is individual, and I sit in "chart rounds" and watch them debate how they would approach an individual patient. 

And in chart rounds yesterday, the two radiation oncologists held differing views on an approach to patient. 

No one case is "standard"--there are some standard approaches, but each person is different.

The concept of irradiating negative nodes for prophylaxis is one I'd like to see documented or clarified as supported by some science.

If you had positive nodes, the argument is very strong. And if you had clinically positive nodes before chemo, the argument to radiation the nodes is also strong--but negative nodes at all points along the treatment, I think you might find differing opinions.

I think it's always worth getting a second opinion before proceeding.

Kira