Lymphoscintigraphy without numbing should be outlawed

Anonymous

Lymphoscintigraphy without numbing should be outlawed

addysgram

I was diagnosed with Invasive Breast Cancer of No Special Type on Feb 6.

I had the biopsy, the marker placement, had the MRI, met with the surgeon and surgery was scheduled for March 4.

I was told I would have 2 appointments the day before the surgery- one in the mammography department (for placement of a clip to show the dr. exactly where the tumor is) and one for injections to highlight the lymph nodes. I had injection of dye with the MRI- the MRI that was highly uncomfortable and I had already decided I would NEVER allow another breast MRI again. And, my sister-in-law had already warned me the injections were "the worst part of the entire process".

Even with warnings, with wearing an ice pack for an hour before the procedure (given to me by the mammogram tech to try to numb the nipple) because, "it's going to hurt", I thought I was going to die. I have never felt so much pain in my life (and I was in ICU after a car accident with multiple fractures in the 1980s)

The Interventional Radiologist "obtained informed consent". I screamed, I sobbed, I cried my eyes out. Then he asked permission to do it again, and again, and again. Then, he documented in my chart I tolerated the procedure well. I screen-shotted that one for my records.

What I really need some feedback on is this- how did you all deal with these emotions and allowing this violation of your body?

Moderators

Dear skrepasky,

Welcome to the BCO community. We are so very sorry for what you have been through and so glad that you reached out to our members for support and feedback. We hope that you will hear from some others soon. Please stay active here and use these discussion boards to gain the help that you and so many others need. Let us know how we can be of help as you navigate your way around.

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AliceBastable

I guess you're talking about the dye injection to mark the lymph nodes? They used a lot of numbing but it was still uncomfortable. Just uncomfortable, not unbearable. Sorry you feel violated by an essential medical procedure.

etnasgrl

I am so very sorry for that horrible ordeal you went through. That is awful!

My first time around I had that injection and was a nervous wreck as I had heard all of the horror stories of how incredibly painful it can be. I was literally trembling when I arrived to have it done. And then......it didn't hurt. At all. I felt a very mild pinch and some slight burning for a few seconds, but that was it. I was absolutely shocked and told the tech who did it that I was bracing for so much pain, but it never happened. She said that if the person doing it is highly skilled and trained, there really should not be very much pain, if any at all.
This second time, I was prepared to go through it again, (hoping I would get another great tech!), but my surgical oncologist told me that she no longer has her patients go in for the injection before surgery. Instead, she does it herself right before surgery, once I am out from the anesthesia.

As for how I deal with the violations of my body, I honestly don't even think about it. Maybe it's because this is my second time going through this crap, but really nothing bothers me as far as people poking and prodding me. It just is what it is. I can't do anything about it, so I just roll with it. I will say that I am very blessed to have an incredible medical team, who have been nothing but gentle with me. That makes a HUGE difference.
It sounds to me like your medical team may be a bit rough or maybe not trained correctly or well enough in the procedures they are doing. Remember, they work for YOU, so if you are not happy with your care, speak up and let them know! Communication is so important when going through this. They need to know if you are in pain and try to come up with ways to prevent that as much as possible.
If you are screaming and sobbing, things should have STOPPED until you were able to calm down. I'm not sure why the radiologist was asking you again and again for permission. Was he not getting it right the first time? Was he having issues getting it done? It certainly sounds like someone else should have been brought in to help if they were having problems and causing you that much pain.
((((Hugs)))) Again, I am so sorry for what you went through!

exbrnxgrl

I am so sorry. I actually cringed when you described your pain and reaction. Here’s the crazy thing, after over 8 years on bco, I seen have women have a wide variety of experiences, ranging from hardly felt it to the kind of agony you describe. Needles and pain cause me great anxiety. Even though it’s often described as similar to a bee sting, I took no chances. I had to beg, but I got my surgeon to prescribe EMLA, a very strong topical numbing cream. I didn’t feel a thing. Everyone should be offered EMLA

LoveFromPhilly

hi there I am so sorry what you have been through and I completely understand the violation of the body with all the poking and probing and prodding. I remember from 3 years ago when I was diagnosed that I felt like a lab rat. it was awful. the worst for me was my biopsy of the breast tumor and the lymph node. i was so scared and so anxious and even though i took 10mg of valium i still got woozy during the procedure. i think that no one wants to tell you what you make expect because like exbrngrl wrote, everyone's experience is SO different.

i can say for myself, being a trauma survivor and sexual abuse survivor, that being violated feels MUCH more intense than it may to someone who has not experienced physical violations and loss of control of our bodies in the past.

It took me about 6 months before i would even let the medical assistant take my blood pressure at each oncology appointment because my anxiety was so high i knew that my bp would be through the roof and that it wouldn't be accurate. there was just something about the pressure of everyone testing me and touching me that really rubbed me the wrong way. i felt like a was in a cancer factory on the conveyor belt.

Truth be told, it took me getting on Lexapro (an antidepressant and antianxiety) to help me function through all of this. I do not have the same intense emotional reaction. perhaps it is stunted from the drugs but honestly, i prefer it this way because it is so much easier on my mind and body to be calmer. i still take valium before every scan. 5mg. it helps a lot.

if you are accepting hugs, i am sending you one.

bcincolorado

I am sorry you had to go through this. My husband was allowed to be in the room with me and rubbed my feet to keep me from passing out. The radiologist actually told me "this is going to hurt REALLY, REALLY, BAD. I am REALLY, REALLY sorry!! " so at least I was warned before I almost fainted. It definitely requires some intensive IV drugs as a minimum if you ask me, even if it is not under total general anesthesia. Hopefully you recover quickly from this.

edj3

I was so thankful my surgeon did the injection AFTER I was asleep for the lumpectomy. I dreaded that so much, well and the localized wire insertion which was another kind of violation.

And AliceBastable I will say while these procedures may be essential, there are most definitely ways to mitigate the discomfort and the violation.

TrixieBlue

I had a lymphoscintigraphy right after a needle wire localization and right before my lumpectomy. I had some topical anesthesia for the needle loc and I think the nuclear medicine technician thought I wouldn't feel it as much as I did because I should have still been numb from the previous procedure. She did warn me that some people thought it was painful, but the pain would pass quickly. I bit my lip and whimpered, but it was over fast. I had a tiny bruise where one of the injections was made, but I do bruise easily.

I have been reading up on different procedures and talking to the few people I know IRL who have had breast cancer so I hopefully know what to expect. I have also had someone with me for every single appointment so far, except for the blood draw for the genetic testing.

gb2115

I'm so sorry. My injection was ok, but the wire placement I had immediately following was most definitely not. They placed the wire before I was adequately numbed and my crying out in pain did not deter them or give them pause. I found it brutal and negligent. Yes, I think it's criminal that things like this are routinely accepted. I went into the wire placement with a large painful hematoma which they proceeded to squeeze into a mammogram. And THEN here comes the lidocaine, which barely worked. Utter torture, and quite unforgivable. The radiologist seemed uncaring as well. I'm thinking, dude, let's squeeze your testicles and shove a wire in before you are numb...

beach2beach

I remember the dye shot on the day of surgery. It did hurt pretty badly but I think I was so mentally numb that I really didnt blink. Just took it.

Cowgirl13

I had mine done while I was in surgery. I can't imagine why they don't do it this way for everyone. I'll tell you this--I would never had made it through this procedure if I had been awake. It sounds absolutely barbaric.

OnTarget

I'm sorry you experienced so much pain! I'd read about it and was ready for a lot of pain but it didn't hurt at all. It is hard to tell how people will react.

WC3

skrepasky:

That sounds horrible that you had such a painful experience. Some women have had experiences similar to yours while others did not have a issues with the dye injections. I was fortunate enough to fall in to the latter category. Just a little bit of superficial stinging. I wonder if the differences are due to different techniques at different facilities or if it comes down to different levels of nipple innervation between individuals.

addysgram

I cannot thank you all enough for replying to my post and sharing your experiences.

I still can't get the emotions out of my head, but I have been able to sleep a little. If I don't stop ruminating about it soon, I will contact my company's EAP and get a therapy referral.

(I know I didn't mention this initially, but I have been a nurse for 32 years. The hospital I work for offers health insurance that only covers 100%, after deductible, if you go there for care. My "co-workers" are the ones that treated me this way. And, I can't go elsewhere because I can't afford it.)

bcincolorado

It does not matter that you are a trained medical professional. I imagine they think since you are medical professional you should understand and do not explain as much? I don't know. That is terrible. You deserve better treatment. I realize you have no other option for healthcare, but you should at least be able to get the respect and courtesy of every other patient who knows nothing. Best wishes to you.