Possible lymphedema risk?

sio

Hello Ladies,

I have a few questions about lymphedema risk. First, some background. I had all the lymph nodes removed under my left arm 25 years ago due to cancer. All has been fine since, with no signs of lymphedema. I have avoided injections, blood draws, and blood pressure readings on the left side all these years. In June 2015, I had a simple bilateral mastectomy, again due to cancer. Ten lymph nodes were removed, through the mastectomy incision, from the right axilla. The surgeon also examined the left axilla, again through the mastectomy incision, to see if ay lymph nodes were still present from the clearance 25 years ago. There were none present.

So, now I'm headed into eight rounds of dose dense chemo (AC-Taxol). The first treatment is scheduled for August 6. I asked the oncologist about getting a port. He said that was only done for longer treatment periods. I explained that everyone is having difficulty doing blood draws on me recently. He said the chemo nurses will know what to do. I expressed my concern about lymphedema risk with all the injections/blood draws. He told me that that's a myth, needles have nothing to do with it, although that was the thinking 25 years ago. Okay, he is the doctor and should know best, but I cannot find any empirical evidence that discounts needles in the affected limb with the risk of LE.

So, to recap, is it safe to have so many needles when I have had lymph nodes removed on both sides? Would it be safer to use the left side, considering the dissection was 25 years ago? Needles don't bother me in the least, so preference is not a factor, and I would prefer to go without a port, but is it safe?

Thanks for any insight.

SusanSnowFlake

HI, sorry about what your going through. I hope someone reads this that has the info you need.

Even though I don't have any answers for you I do know you should listen to your gut. To many times woman's concerns are discounted by the medical profession and that includes female Docs, techs and nurses. If you want more info from your medical professionals ask them provide it.

Was there any discussion about doing the needle sticks in your feet? I'm not sure that's an option but it might be worth finding out.

I hope this your treatment goes smoothly.

Susan

Morwenna

This is a perennial question for me too. I believe recent research has shown little evidence to support that sterile needles, eg blood draws, increase your risk for developing LE. I use my right arm for preference, since I had about 7 nodes removed from my right during my bilateral flap reconstruction, but do already have established lymphedema (Grade I-II) in my left arm.

I know the phlebotomists at the cancer centre I attend, are still of the opinion one should avoid limbs where lymph nodes have been removed, so I keep quiet about my right side, as I don't particularly want them to use my feet, which they did in fact do when I was recovering from my flap surgery!

It's a bit of a dilemma for me as I have frequent blood draws to check my INR (on warfarin). My cancer nurse recently suggested placing a port for bloodwork as my veins are so hard to access, but that seems unnecessarily invasive to me! I had a port for 6 months of chemo, and had it removed when I was done. I don't really want it back, thank you, and anyway, when it was there, the phlebotomists refused to use it for blood draws! They said they were not trained, and/or they did not have the correct needles!

My veins suck in my right arm. Even experienced phlebotomists sometimes have more than one poke and have to use my hand.....

Two episodes of pulmonary emboli (clots in lungs) resulting from my various cancer treatments; the disease that keeps on giving!

I'm now on long term anticoagulants, possibly for ever,

Binney4

sio, I'm so sorry you're facing this dilemma. You've been so diligent about protecting yourself over the years--good for you! I'm with SusanSnowflake on this--go with your gut.

There seems to be a movement currently to debunk risk reduction strategies. As you point out, there is no empirical evidence, but that is mostly because it would be unethical to propose a study in which affected women were deliberately put at risk (and also because lymphedema research is notoriously underfunded). But there is PLENTY of clinical evidence of this being an issue. Another problem is that lymphedema (impairment of the lymphatics from surgery, certain chemo drugs and/or radiation) can be present before any swelling is measurable (it's called Stage zero or sub-clinical lymphedema). In that case the risk of serious infection is heightened whenever the skin is broken, even in medical settings. It's also of concern that the left axilla was further disturbed during your recent surgery, as development of scar tissue is one cause of lymphatic blockage.

I certainly don't mean to add anxiety to your already full plate. So if you decide to go ahead and use your arm, here are two thoughts. First, lymphedema is nasty in either arm, but it's hardest to deal with in your dominant arm, so you might want to use your non-dominant arm for infusions. And second, when lymphedema is treated promptly it's easier to get into control and easier to keep it that way going forward, so since you're aware of your risk, you're in a good position to have an easier time of it even if lymphedema develops.

If it's possible in the limited time you have available before chemo start, a visit with a well-qualified lymphedema therapist for baseline arm measurements and personalized risk-reduction tips can be really helpful, especially in monitoring for the future. Here's how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

Wishing you smooth sailing through chemo, great results, and a quick return to NED! Please keep us posted.

Gentle hugs,
Binney

sio

Thanks very much, everyone, for your responses. I'll go ahead and start the treatment without the port and see how it goes. I have been seeing therapist for myo facial release, and she does not see any evidence of LE at this time. I hope it stays that way. It seems that at every turn, there are new fears.

glennie19

I wish you well, sio,, and 2nd the idea of getting baseline measurements before starting chemo.

vlnrph

Best wishes for an uneventful first chemo today! Being well hydrated should "plump" up your blood vessels and make them easier to access. You'll need to drink lots of water anyway, to help your kidneys flush the poisons out.

Perhaps protocols are more conservative in Canada, but Adriamycin (the red devil) is notorious for being rough on veins. Especially with six treatments to look forward to, I think a port would be an advantage. I got one mostly because I wanted to protect my good arm and have it available for future lab work.

On the other hand, you went 25 years with no sign of swelling so maybe you have one of those robust superhighway lymphatic systems. I describe mine as a one lane dirt road: some of us miss our nodes more than the majority who can have them removed with few consequences...

glennie19

a one lane dirt road,,, I love that description.  I think I have that road too.