Sep 25, 2018 12:46PM LeesaD wrote:How many nodes did you have removed on affected arm?
Posted on: Sep 25, 2018 12:22PM
This is my first post after just joining this site. I'm excited to explore and hopefully get some feedback. So here's my sitch: I was diagnosed with breast cancer in 2008 at 22 years old. I had a bilateral mastectomy with reconstruction and also had a negative sentinel node biopsy. Following my surgery I was instructed to try and refrain from blood draws on the affected arm.
Fast forward to 10 years to being cancer free. I have never experienced any swelling or Lymphedema in the affected arm or anywhere else and am considering a tattoo on the affected arm. I've made my appointment and because it had been so long since I was given these instructions, I hadn't even thought about the location I decided on and it being an issue until it just dawned on me this morning. My questions to the forum are the following:
1: Has anyone been tattooed on the affected arm following the biopsy? If so, how long after?
2: After 10 years with no swelling, in your opinion would this still be too big of a risk to take?
I know this may seem crazy to most to even consider the risk but I have to believe I'm not the only breast cancer survivor in the world that has considered this. My oncologist retired last year and I haven't set up anything with a new one and my general surgeon is no longer in the area. My plastic surgeon is still around and did tattoo my areolas following reconstruction so he may a good outlet as well.Log in to post a reply
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Sep 25, 2018 12:46PM LeesaD wrote:How many nodes did you have removed on affected arm?
Sep 25, 2018 01:02PM illimae wrote:
I’m considering something similar.
Leesa, why does the number of nodes matter, just curious.
Sep 25, 2018 01:10PM LeesaD wrote:Ok so if it was just sentinal node biopsy it’s usually just a couple of nodes. If it was me I’d go ahead with the tattoo. I think you’ll be fine. I had 18 nodes out of my right side so I avoid any blood draws or blood work but I still use it for exercise and yoga and weights and I haven’t developed lymphedema even with the 18 nodes removed. I’m sure there are others who have developed lymphedema with not a lot of nodes removed who might jump in but just my opinion I’d say go for it.
Sep 25, 2018 01:13PM Binney4 wrote:
It's really crummy how the long-term effects of breast cancer treatment can still be giving you pause after ten years. (But hey! congrats on that!) Unfortunately the risk of lymphedema following breast cancer doesn't have any expiration date. Here's a brief run-down of the mechanics of it: your body considers tattoos a trauma, and it's response is to send plenty of extra lymph fluid to the area (which is what causes post-injury swelling). That's because the lymph system is a sort of garbage pick-up arrangement that gathers up intruding bacteria, dead cells and other cellular gunk and carries it back to the nodes to be disabled or killed outright. With your lymph system compromised, this flood of lymph fluid can overwhelm the system and trigger lymphedema. Skin breaks of any kind can also allow bacteria to enter, and if the lymph system is a bit sluggish, result in serious infection called cellulitis. (Interesting factoid: tattoo ink that leaves the area of the tattoo and travels through the system will end up in the lymph nodes, where it remains forever, as it can't be destroyed. As far as anyone knows that is not a problem, just a curious bit of biological functioning.)
Still, we all make our own compromises with perceived risks, so here are some precautions you might consider if you decide to go ahead with a tattoo on your affected arm:
1. Ask any doctor on your healthcare team for a referral to a well-trained lymphedema therapist for baseline arm measurements and a personalized risk assessment. Here's how to find one near you:
2. Consider a short-term round of oral antibiotics to offer protection from the higher risk of infection that you will face.
3. Do everything you can to keep normal post-tattoo swelling under control. Make sure you have a plan for this for several days following, and the supplies (ice packs, whatever) to carry it out.
4. Be familiar with the signs of cellulitis and if you suspect that may be developing, act quickly! Here are some guidelines:
Again, hooray for ten years disease free, and no swelling--all good! Stay well!
Sep 25, 2018 01:15PM - edited Sep 25, 2018 05:08PM by LeesaD
Illimae- the more nodes removed the higher the risk of lymphedema. I had 18 removed on right side and just one removed on left. Right side I don't use for blood pressure or blood draws but do use my arm to workout etc and it's been fine. My left arm which had the one node removed has been through the ringer recently with a sepsis infection so repeated blood draws, needle sticks, IV's in multiple locations due to veins collapsing from so much use and a picc line and no lymphadema at all. I wouldn't even think my left arm is a risk because of the one node. I see a lymphedema specialist as a precaution and he doesnt even consider my left arm a risk at all either with the one node removed. I'm sure there are people who develop it with a small number of nodes removed.
Sep 25, 2018 01:17PM LeesaD wrote:Binney4- great explanation!
Sep 25, 2018 01:29PM - edited Sep 25, 2018 01:35PM by Denise-G
Binney4 - great info!!
Jessica - along the tattoo line but nothing quite similar to your situation.
My sister had nipple tattoos at her Plastic Surgeon's office after her DIEP flap reconstruction. Bam, LE really acted up and keeps on keeping on in one breast and on her trunk on her "bad" side.
Neither one of us gave it a thought, nor obviously, did her Plastic Surgeon.
Sep 25, 2018 01:31PM - edited Sep 25, 2018 01:42PM by Moderators
Jessica_Lincoln welcome to our community, and many congratulations on being 10 years post, and enjoying your life!!
Sep 25, 2018 01:40PM Jessica_Lincoln wrote:
Wow you guys!! Thank you!! This is all great info! I've gotten a tattoo since the biopsy but it was on the upper outer thigh of my opposite side. No issues with it but it was on a completely different quadrant of the body. I didn't even know working out was a thing to be cautious of! I love Body Pump and have been doing it for years, my weights usually stay around 20lbs but for nearly 700 reps. I think I'm going to see if I can track down my old medical records to see if it shows how many nodes were removed. That is at least a start! Thanks again you guys!
Sep 25, 2018 03:03PM - edited Sep 25, 2018 03:05PM by LeesaD
I think you'll be fine with just two nodes. My lymphadema specialist explained it all to me using a toll booth analogy. He said imagine 20 toll booths (lymph nodes) and cars (lymph) moving through them fairly smoothly. Now take away 18 of those toll booths and leave just two booths to handle the same volume / amount of cars. What happens ? The cars will get backed up (swelling). Less available to handle same amount of work. Take away just two toll booth and leave 18, the back up is not as bad. It made a lot of sense to me when he explained it that way. Best of luck with your tattoo and continued good health!
Sep 25, 2018 06:15PM Binney4 wrote:
Leesa and Jessica, that is a fun analogy. But research shows it's actually a bit more complicated than that. Just for starters, the number of toll booths is arbitrary--there is no set number of lymph nodes, so some of us have more, some less. If there were 20 tool booths and you reduced it to 2, that's a whole lot more congestion than if there were three and you reduced it to 2. So it matters what your starting point is, and there's no way to determine that.
Recent research indicates that not only do we have different numbers of nodes, but the lymph system itself may be more or less efficient in different women (or men). There's even some indication that those people whose hands swell, for instance, when we hike, or whose feet or legs swell during plane trips may be experiencing a less efficient lymph system (though that's certainly not conclusive yet).
But to make it even more complex, we may also have individual experiences of "trauma" of any sort to our chests or arms. Secondary lymphedema (the kind we're talking about with bc treatment) can happen to football players who get repeated blows to their chests, to people who have been thrown forward in traffic accidents, and to anyone who has suffered a crush injury to their arm or leg (one major example was the earthquake in Haiti some years back, when huge numbers of people developed lymphedema as a result of injuries from falling buildings.) Women who have had any breast surgery, regardless of cancer, are at risk. The repetition of even less dramatic trauma over time can eventually add up to developing lymphedema. So it's impossible to predict at present. There are a number of women here, myself included, who have developed lymphedema with a single node removed , or no nodes removed during a simple prophylactic mastectomy. There are others with large numbers of nodes removed who buck hay bales on a daily basis and have never had a problem.
The bottom line is to be aware of the possibility of developing lymphedema, and to seek prompt treatment from a qualified lymphedema therapist at the first indication of a problem. Early signs of arm lymphedema include heaviness, achy feelings, or just "feeling strange," or changes in the way a ring or cuff fits. Truncal lymphedema (breast, chest, back, side or underarm) indications include heaviness, pain that is hard to pin down and doesn't respond to OTC pain meds, and longish-lasting marks in your skin where the straps or bottom band were when you take off your bra. Of course visible swelling is also a possible sign, but it is often not the first one. The earlier you seek treatment, the easier it is to reduce any swelling and to keep it in control over time.
Sep 25, 2018 06:53PM buttonsmachine wrote:
I've known people who got LE, even years later despite only having 1-2 nodes removed. LE can be such a huge burden, and can cause pain, arm or hand functional impairment, and chronic cellulitis!
I've had 12 nodes removed, and so far my arm is okay - but personally no tattoo would be worth the risk to me. But hey, that's just me.
More importantly, congrats on being a young long-term survivor - that's awesome!!!
Sep 25, 2018 06:59PM buttonsmachine wrote:
I should add that I do have mild truncal LE from my first SLNB, where only two nodes were removed. Fortunately it hasn't worsened, even after ten more nodes were removed, but still... LE is tricky and not well understood. I'd tread carefully.
Sep 25, 2018 07:10PM NotVeryBrave wrote:
Are the same concerns valid for a tattoo elsewhere? I don't have any but have recently considered getting one on the side of my chest below the affected breast.
Sep 25, 2018 07:33PM Falconer wrote:Hi, joining the thread here as I too have been in love with many of the tattoos I've seen on women covering their MX scars and am considering a decorative tat on my left recon breast. I don't know if I have LE as I have a little thickness beside my recon breast. PS thought it could be LE but was inconclusive.
Sep 25, 2018 09:51PM LeesaD wrote:Binney- thank you so much for the detailed explanation. So helpful and educational. It sounds like so much is unknown about who ireally will develop it. I had 18 nodes removed and throw radiation on top of it and I was sure as soon as I started back to anything my arm would be swelling. I see a lymphadema specialist every 3 months for measurements as a precaution and so far so good. I flew overseas and back for first time last week since and wore my sleeve and felt for sure it would set it off but again I’m good. Hoping it continues. Thanks again for all of the info. The women on here are just so knowledgeable and I’m thankful for this page every day.
Sep 26, 2018 01:25PM Jessica_Lincoln wrote:
Ladies! You have been a wealth of knowledge and information!! Thank you! After talking it over with my husband I'm just going to switch arms, not ideal but whatevs!! My right arm will just have to stay pure! I honestly feel like it would probably be fine but would rather not take a chance. I had no idea flying was a thing!!! I fly ALL THE TIME! I've never had an issue so fingers crossed it never becomes one. I'm really glad I stumbled across this discussion board and wish I had known about it sooner.
Sep 26, 2018 01:33PM Jessica_Lincoln wrote:
@notverybrave, I have had some tattoo work done on my leg on my 10th cancer-versary and didn't have any issues and I know many other survivors who have not shied away from the tattoo gun. I suppose it just all depends on your body. Thanks again!!
Sep 28, 2018 08:48PM hugz4u wrote:
Jessica. Welcome here and what a smart thing to become educated on lymphedema even if you don’t have it.
Any puncture on a limb that has had even one node out is at a risk for lymphedema. You may never get it with tattoos punctures but if you do it’s a life changer for the worse. Did I mention thousands of dollars out of pocket.
Don’t want to scare you but personally I would pick a different quadrant on my body instead of using the at risk side.
If you decide to use nodeless side make sure everything is super sterile.
Ok I got to go wash my lymphedema garments so they can dry for tomorrows use.
Thanks for coming on board and do ask any questions. We are all in this together. Knowledge is power
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