Asking for Some Positive Vibes

Arielyn · November 2017

I'm posting tonight asking for some positive vibes and perhaps some words of encouragement, I've posted my story in the past, but a quick summary for those I haven't "met"...

In Sept. I was diagnosed with DCIS in my right breast after an uneventful stereotactic CNB. I took my results to a local hospital with a well known breast cancer program for follow up with an oncologist. I started there with a bilateral MRI, after which I received a call letting me know that nothing new was found on the MRI but that the patholgists there disagreed with the DCIS dx and instead downgraded me to ADH. At that point, I couldn't see the doctors there, as I had gone outside my insurance network to see them (permitted if there is a cancer diagnosis but denied once I was downgraded). I picked up my slides, films and reports and took them to yet another hospital with a very well respected breast cancer center. The pathologists there agreed with the adh reading, but the radiologist found calcifications in the left breast that were missed by the first two hospitals. All of this lead to my second stereotactic CNB, which happened today.

My first biopsy was relatively easy. In spite of my over the top anxiety, the procedure wasn't in the least painful. I didn't even feel the initial numbing injection, and it was over before I knew it. Fast forward to today—the single most painful experience of my adult life (and I have three children, all delivered via c-sections and two following prolonged and intense labor).

First, I felt everything. They gave me as much of the local as possible, and still I felt each sensation, from the stinging of the local to the injection of the needle for the samples. Each click for a sample almost made me rise off the table, and it took two nurses pressing down on my back to keep me in place. When they took the samples for an X-ray, they discovered they hadn't gotten any of the calcification. They once again tried to numb me, to some avail, and took another series of samples. The first three, as with the first biopsy, I didn't feel. The last one, however, almost made me faint with the pain. I was sobbing, in pain and embarrassed. I was told to sit up after the clip was placed, and blood just poured down over my belly and all over my leggings. It took almost 30 minutes to get the bleeding to stop enough to apply the steristrips. The doctor also had the nurse apply a pressure bandage and wrap me in an ACE, which I have to leave on for 24 hours. I was told I also have a large hematoma.

Has anyone else experienced such a traumatic CNB? I am still in pain now, almost 12 hours later, and I'm already stressing about the results. At a minimum, I will be having surgery on the adh in the right breast, and I'm praying that the left breast holds nothing horrible.

Sorry for the rambling, but the pain I experienced today caught me off guard! Most I've read reinforces my first, no-pain biopsy. Argh!!!!!!!!!

Guenhwyvar · November 2017

I'm sorry you had such a horrible experience. I was afraid mine would be like that, because I have very low pain tolerance and locals don't always work. I've had a lot of other procedures that were supposed to be nearly painless, and I always scream and cry.

I was lucky, the women's center where I had mine done always uses IV sedation for biopsies. When I told them my concern, they gave me just enough to make me sleep through it.

However, I was awake for the mammogram afterward, and left blood all over the machine. They had trouble getting my bleeding stopped, too.

They put a binder on me afterward and gave me an ice pack to use, which made it feel much better whenever it hurt.

I do hope you get good news.

PauletteK · November 2017

I’m so sorry you have put up all these pains, I can’t believe how insensitive that doctor can be. I didn’t have that problem.... thanks God! Do you think you can tell your future surgeon your experience just in case for future biopsy needed.

Mucki1991 · November 2017

mine was painful and traumatic. I had to sit in the parking lot to collect myself before I drove home. Nothing like your story. They could not get me numb all the way and I only had one tumor biopsied. Sidenote I used frozen peas and it worked great and I had swelling and pain for days. My cancer had invaded the nerves so I had pain before and the biopsy made it worse.

Sorry you Sent through that

couragement · November 2017

I am deeply sorry that this biopsy was so traumatic and painful. Of course you were caught off guard! May you feel your nervous system gently return to a calm state soon. It will! It takes a lot of being very kind to yourself. As my husband says to me after something like that "what little treat are we going to get you today?" I hope you can go get yourself a treat, or take a nice nap, or watch a good show on Netflix!

Be sure to mention this to all your practitioners from here on out so that they can plan for what can happen. I had a very similar experience in 2014 when I had some calcifications. I had such pain and severe bleeding that the doctor said he had never seen that much blood and the nurses jumped up on the high table, flipped me over and both pushed down for so long and so hard that they separated the connective tissue between my ribs. It took about a year for the pain to subside. Major hematoma. They found no cancer on that biopsy. Fast forward two years later and my mammogram showed more calcifications so they said I needed another biopsy. I was like a dog who had a bad experience at the vets . I almost backed away from the radiologist out of the room. I had to have 3 doctors convince me to get a biopsy. Thank goodness I did as it turned out to be cancer and I could get treated, but the fear put me into a state where on the next 3 biopsies I needed I cramped up and was triggered with PTSD (which I developed from other old medical issues as a child). I used valium each time and had someone drive me. But the tension created muscle spasms in my back for a bit. But they controlled for pain well. One of the most frustrating things about the first biopsy is that they would not note the bleeding in my chart (and I am an excessive bleeder). The medical team really circled the wagons and wouldn't document what happened. My main doctor (a major rheumatologist) was livid.

I haven't had that kind of bleeding since. I use Vicodin for pain and often have to remind doctors (my husband works in pain management) that women often require about 30% more opiates for pain relief than men. I am like a broken record with my doctors about pain and bleeding. I have to remind them at every turn, and it has turned out to be very important that I do. I have gone so far as to have them repeat to me what I have told them! They often say "oh we never see that" and make me feel a bit ashamed, but I have gotten over that and advocate for myself in a very strong way.

Stay strong! Do what your gut tells you to do, and advocate for yourself as you would your dear children (because you are by making sure you are there for them!).

I send you much love and good spirits for a good recovery and very positive outcome!!

beach2beach · November 2017

Ive had biopsies done in the past, was good with them. Had one this July. Was good with the lidocaine shots. Good with the initial going in,,,handled the pulling sensation, the punch biopsy..but when they stopped, they couldnt get the bleeding to stop. Tiny little nurse was practically putting all her weight down on the area to stop the bleeding and to hopefully prevent a hematoma(luckily it did). Took over 30 min before they would let me go and bound me up pretty tight with an ace bandage. Once the lidocaine wore off,,that sucker hurt and hurt for days.

*edited to add....*I think it may well have to do with how deep they have to go to where the area is.

Keep icing!

Arielyn · November 2017

thank you all so much for your responses and words of encouragement. It's actually helpful to know that my experience wasn't completely unique. I am still REALLY sore today and fairly swollen, but it's back to work tomorrow, so hopefully the morning will bringmwith it some relief.

Waiting for the results is the current stressor—keeping my fingers crossed and praying for normal findings.

Arielyn · November 2017

The results are in, and the left breast biopsy is BENIGN! I am so grateful for all the support here. So the next step is surgery on the ADH in the right breast. It is scheduled for Nov. 16. I was told I will report first to the breast center for insertion of a wire that will guide my surgeon to the excision site. Now I have a new reason to be anxious. The stereotactic CNB was so traumatic that I am BEYOND terrified of this wire insertion. I will be under a general for the actual surgery, but the wire thing sounds horrible! Any experience here? I don’t know if I can handle two weeks of this worrying.

couragement · November 2017

Aren't you wonderful to let us know the GREAT results! Congratulations! This is wonderful news! I have no experience with the wire, but I am very relieved to hear that you will be under general for the exam. What good news there as well. I know the anxiety is awful, so do what you can to give yourself breaks and distraction from the worrying. If the anxiety is so severe that it is interrupting your flow of life you may want to check with your doctor for some help with an rx. There are also supplements that can assist (like magnesium "Calm") that you might want to check in on. Breathing exercises and yoga are a good help too. If you drink caffeine you may want to cut down on it and also eat as cleanly as possible. Everything that you can do to support your nervous system. You can do this! Your bravery is powerful! Please let us know how the exam goes. Wishing you the very best!

Asking for Some Positive Vibes

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