Lymphedema cancers gift that keeps on giving

PVM

Hi all im sorry if i am posting something that has been discussed already or is on anther thread. I am newly joined to the kick breast cancer in the butt club. Unfortunately i still have one more process in my kick cancer in the butt, radiation, 21 sessions in all. Wanted to ask my fellow cancer warriors if anyone has a similar situation. I was diagnosed with a tumor under my right axilla, even after chemo shrunk it, it was 9cm (my right breast was not touched as there was no evidence of cancer there). Had surgery to remove my tumor as well as ALND. I was unfortunately not educated with the lymph node process and had 14 removed - 8 of those which tested positive. I have been advised by my surgeon that now i am at a very high risk of getting lymphedema and this has scared me. I start radiation next week and when i asked if i can be refereed to the hospital's lymphedema clinic they told me that they do not refer you until you develop it. I would prefer to never get it but my question is how the heck is one to prevent it and know what or how to take care of yourself if they are not allowing you to talk to specialists. I have been going swimming every day and doing my stretches to try and prevent it but know that is not fool proof. All that i have been doing i have read through the forums here and hope that helps out. Also i am very careful of getting a cut, infections or anything like that. No one has told me okay start doing weights or get a sleeve to do weights, nothing at all. I have heard that as i am to get radiation under my arm i am double at risk for developing it, i know that not everyone does get it some do and some don't. I know i am blessed to be able to fight when there are others that have lost the battle but the thought of developing lymphedema has depressed me so much. Sorry for venting don't mean to sound ungrateful especially as my surgery was successful but its just so frustrating, cancer seems to be the gift that keeps on giving and at this point i don't want the thought of the gift of lymphedema.

gb2115

Welcome to BCO!!

I think it's a good idea to get an initial assessment with the lymphedema clinic so they can be measuring you for monitoring. You know, catch problems early. You may never develop lymphedema but I think if you do it would be helpful to already have someone to help you with it rather than try to get a referral as you're actively swelling up. And they can give you tips for prevention.

If your surgeon won't refer you, can you ask a different provider? Oncologist, rad oncologist, or even primary care. Surely someone on your medical team would see the value in this, so who do you have the best rapport with? Tell them exactly what you just wrote here--that you are concerned and want to know how best to take care of yourself.

Another way could be to contact the lymphedema clinic and tell them you are interested and can't get a doctor's order and see what they say.

I'm sure others will come along here to offer more advice--i don't have measureable LE but have been seeing a therapist for prevention and monitoring. It's been helpful--I only had 3 nodes removed (one had tumor cells), but I got a lot of radiation to the area and get a lot of arm pain that seems to be either radiation damage to the shoulder or from scar tissue. So I do worry about LE pretty much every time my arm hurts. It's nice to have someone keeping an eye on it.

JKL2017

PVM, is there a patient or breast navigator at your hospital? My breast navigator was able to get me a referral immediately & even arranged for an LEPT to call me to schedule my 1st appointment. You're absolutely right to seek information now. Don't let anyone prevent you from doing that! And check out www.stepup-speak out.org for lots of helpful information -it's our LE Bible!

PVM

Thanks so much ladies for your thoughts/opinion. I will contact my oncologist tomorrow and ask her for a referral. Its just crazy that both the surgeon and now the radiologist told me yes you are at high risk however we wont refer you till you get it or if you get it. I won't let up until i see someone if not i will go to the clinic myself and ask questions. How is one to protect themselves or know what to do or not do if they don't get guidance. I am feeling so overwhelmed, i should have done my homework and read and understood everything about the removal of lymph nodes but i did not. I was only given a little pamphlet when i was released from the hospital the next day after my surgery with some bullet points on what to do after surgery. Until i got that pamphlet i had no clue of LE or the risks of lymph node removal. If anyone knows of any PT they can recommend in Canada, Toronto (Ontario) to be more specific i would greatly appreciate it. Thanks for the LE bible link, i will definitely read up and educate myself more. Wish me luck tomorrow, i am a woman on a mission and will not let up until i see and PT or someone that knows about LE that can help me.

Binney4

PVM, I hear you on your worries about lymphedema. Being aware of the need to be vigilant will absolutely help you catch this early if it develops, and that can make a huge difference in managing it if it ever develops. Here's the website for the Lymphedema Association of Ontario:

http://www.lymphontario.ca

They're on a mission to help with both awareness and management of LE in Ontario, so they will be a good place to find support and current local information.

I agree with JKL that you need to insist on seeing a LE specialist. It might help to tell your referring doctors that you MUST HAVE baseline arm measurements for future reference, done by a lymphedema specialist, BEFORE you begin rads. Here's information written especially for medical professionals, by a doctor who developed LE herself:

http://www.stepup-speakout.org/essential%20informa...

There's a printer-friendly version also, so you can make copies for your healthcare team.

Unfortunately, a lot of lymphedema care depends on those of us at risk standing up for ourselves (which is why that website was named "Step Up, Speak Out"!)

You can do this! Please tell us how we can help.

Gentle hugs,
Binney

PVM

Thanks ladies i was able to book an appointment for next week, i found a PT close by to my home with the help of the link Binney sent. I am experiencing bit of arm pain, i am hoping that its not LE as of yet and just me being paranoid. I have been doing my stretches and elevating my arm whenever possible. I will get that checked out asap though. You would think that once we finish our cancer treatments we have nothing more to worry about but its just a cycle that goes on and on. Thanks ladies for your input.

sylviaexmouthuk

Hello Binney,

I have recently developed lymphoedema in the right arm 12 ½ years after cancer treatment. I had it slightly in 2006 when I finished treatment but I did exercises and it went away after two appointments at the lymphoedema clinic. I now have an appointment in December. I have done a lot of research on this and think it does not get enough attention in cancer treatment.

I had one node affected and seven removed in all.

I have read that all surgery carries a risk of lymphoedema, even without removal of lymph nodes and that it is not restricted to cancer treatment.

Is this true?

I see that you have been on the forum a long time.

Best wishes.

Sylvia xxxx

hugz4u

Welcome all, it's true any surgery or accident that disturbs the lymphatic system can trigger lymphedema. Radiation can fry our lymph system to. If you ever had it then it's here to stay unless you were diagnosed with stage 0 which is reversible, but requires a lot of work to keep it that way. That is why it is so important to be vigilant in prevention and care. Some get one node out others 40 and may never get lymphedema. It has no rhyme or reason.

Doctors just don't get enough education because schools only teach a brief lesson on the subject (including or cancer doctors.)Some just like to look the other way thinking it's not their problem because it's not cancer. They have tunnel vision not wanting to see that we need complete care before and after. Some are educated and are true gems but hard to find.

It's really best then to advocate for ourselves and here is s good start. Knowledge is power!

Binney4

Sylvia, brava to you for staying on top of this, and jumping on it right away when it reared its ugly head!

There are several causes of lymphedema (add on extra "o" to that word for the UK!) besides the removal of lymph nodes for cancer diagnosis. Obesity alone can result in lymphedema, and is fast becoming the leading cause of lymphedema in the developed world, passing up cancer treatment as the current leading cause. But as Hugz says, any trauma that damages the lymphatics can result in this condition. Football players are sometimes affected, as well as women who have surgery for breast reduction or augmentation, people who have been involved in auto accidents, and any crush injuries (after the earthquake in Haiti there was an "epidemic" of lymphedema from all the people who were trapped or injured by falling debris). In tropical countries the leading cause of lymphedema (also called elephantitis) is a parasite carried by mosquitos that lodges in parts of the lymph system, creating blockages.

All of those are "secondary lymphedema," caused by interference with an otherwise functioning lymph system. But there is another kind of lymphedema called "primary lymphedema" that results from a genetic malformation of the lymph system. Babies can be born with lymphedema, or primary lymphedema can develop at puberty or later.

As hard as it is for us to find excellent care for our lymphedema, or even a quick diagnosis, our post-breast cancer LE is the most readily recognized in the medical community. Women with swelling in their legs and/or abdomen from gynecologic cancers (or men following prostate cancer treatment) have a much harder time getting care, and people with primary LE may wait years or decades for a proper diagnosis.

In other words, we still have A LOT of work to do to help bring awareness to our medical teams and the wider society about this rotten condition.

Onward!
Binney

sylviaexmouthuk

Hello Binney,

Thank you for your prompt response. It is most appreciated. I seem to have done nothing except research for two months, ever since I noticed my right arm was swollen on about October 13^th. I have been waiting a long time for an appointment on December 5^th. Strangely, it came on after I had had a flu injection in the good arm. I had not had a flu injection since 2005 when I was diagnosed with breast cancer, TNBC. I have asked whether that injection could have started something with my lymph and I have been told that it is possible. I have read up all the information on bc.org and all the information on MacMillian Cancer UK and have joined the Lymphoedema Support Network in the UK. I have just ordered Let's Talk Lymphoedema, the essential guide to everything. The author is connected to LSN.

I have done a lot of posting on the thread I started in 2010 Calling all triple negative breast cancer patients in the UK. It now has people from all over the world.

I have put this thread as my favourite as I feel very strongly that it is a much neglected part of cancer treatment and a very nasty side effect.

I have just read all the information that is meant for doctors and found it most interesting. Thank you for the link.

Sending you very best wishes and many thanks.

Fond thoughts.

Sylvia xxxx