Refusing a biopsy
Following a routine mamogram and subsequent us, a next day biopsy was suggested. I have a morbid fear of medical procedures - not just a little fear - a "come within 2 feet of me holding any invasive medical implement and I am either fighting or flighting' type fear. It's really bad.
So I refused the biopsy unless i can be asleep for it (I can just about tolerate iv's as theres a means to an end). The hospital explained there is no way for this to happen so I said "fine, then it's not happening."
My surgeon called that afternoon and said maybe they could just surgically remove the lump under general anesthetic, and to go and see him - which I did. Unfortunately that would entail me having a wire guided ultrasound pre op which I would not be asleep for. So that takes me back to my original quandary, theres no way I'll allow that to happen.
He is currently reviewing my file to see what he thinks the best course of action will be (he said if he thinks waiting and doing another mamogram in 6 months is viable then that might happen too) but did state that my fear is not something they would take into consideration, and thay whatever he suggested to take place was what was best for whatever he thinks my lump is.
I get it, I get I'm being irrational, but absolutely no amount of persuading, molly coddling, tough talk, gentle talk in the world will make me stay put on a table with an implement coming towards me. This is way scarier than a diagnosis of Cancer for me.
Does anyone know of any other way this can be achieved or is it even possible to be heavily sedated for a normal biopsy?
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Have you tried another Dr., one that could confront your medical procedure fears? I'm so sorry you have this and BC is the worst for poking and prodding. I would work on the fear of procedure if you say that is scarier to you than getting a proper diagnosis. Best wishes to you.
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Thank you, yes if there is a viable alternative out there - heck load me up on laughing gas or something - then I could at least explain to my doctor that I know what my options are, and to suggest something that they wouldn't immediately turn around and offer!
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No matter how you have this done, at least one IV will be involved. Perhaps they can use some oral sedation before placing that IV to make it easier on you.
If you want to have the biopsy done by the radiologist, and if you are in a hospital setting, they may be able to have anesthesia come down and administer propofol (brand name Diprivan) which would knock you out cold for the biopsy. Recovery from the propofol is very quick and there is no hangover like you get with narcotic sedation. Its commonly used for outpatient colonoscopy etc. Nitrous oxide is good to relieve pain and provides a mild euphoria but you would be conscious.
The other option is to have the mass removed in the OR by the surgeon. Ultrasound machines are on wheels and are therefore portable. Once you are out they can use the US to place the localization wire followed immediately by the excisional biopsy. I have done similar things for breast surgeons in the OR with a portable US machine, and one tech.
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Hey! I am having a core biopsy in the morning! Although its not my first choice for a good time, I KNOW it will only last a short time!! And if the benefits of it means adding any years to my life, then I am up for it! nowing that far outweighs the short discomfort! If it's the pain you're afraid of, I'm pretty sure they would keep numbing you until you don't feel any??
It seems kind of weird they can't do even a twilight option for you. I bet if the shoe were on the other foot they'd find a way around the problem! 🙄Good luck to you- but get that biopsy done!! I plan on NOT watching and am going to see if they'll let me listen to my iPod during!
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That was super in depth, thank you. I've just spoken to the hospital and any form of "knock out' sedative is out of the question. So basically I have to hope my doctor just recommends coming back for frequent checks and to go from there. I will of course keep anyone ho is interested updated xx
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Hey Hotwing,
That really sucks
I hope that your doctor will be creative and explore all options. Based on your description, I would have thought that laughing gas would not be an option for you, since you would still be awake, so it might be worth mentioning to your MD that 'awake but chemically altered' is a potential option. I wonder whether as a long term plan, it might be worth seeking support from a more robust psychiatric team. Especially as we get older, there are so many things that might come up and require procedures. Some good professionals might be able to help you both to conquer the phobia but also to develop coping strategies (including pharmaceutical ones) in the mean time.
That said, I would be shocked if there was not somehow somewhere a practice that would do some kind of more intense sedation for all these procedures. It would probably require a fair amount of 'this is at my own risk' signatures and possibly paying out of pocket if your insurance company can't be persuaded to cover it. I'd look in larger cities with a lot wealthy people, or centers for medical tourism.
Good luck!
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Sorry about your fear. Unfortunately it is likely to be one you have to face at some point or another!
What kind of biopsy are they planning to do? Did you know one, you lay on your stomach and basically put your boob through a hole in a table and it gets pressed like getting a mammogram, they also just happen put a small needle like thing in to suck out a grain of rice size sample from you. It is basically like a laying down mammogram with a little needle prick. Maybe you could get your doctor to prescribe a vicodin(?) or something like that for it?
You should NOT blow off a biopsy. My friend's mom ignored a call back for one (uterine or ovarian?) and she became stage IV and died. That process involved having growths aspirated and much worse "invasions" of her body by medical instruments.
Surely you are not the first person to have this fear. Is there some way you could work on reducing its severity? Do you refuse to give blood too? Do you refuse to get pap smears?0 -
My surgeon did the wire-guided thing after I was unconscious. It wasn't due to any problem on my part; she does it routinely to save her patients from the discomfort. Wish I could have been conked out for the dye inserted through the nipple, though. Even with all the numbing agents, that one sucked.
Hotwing7, I don't see how you can get through this since there are several phases of the process that require you to be awake. Have you looked into hypnosis?
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I get it. I almost decided not to have mine and I am a RN.
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Prior to ultrasound/MRI guided biopsies becoming the standard, my surgeon wanted to do all of my biopsies under general anesthesia. I drove him crazy because I was afraid of anesthesia and it made me sick, so for the longest time I insisted he do them with local anesthesia. So I'd go in for day surgery in the hospital and he'd take great care to pump by breast full of lidocaine for each biopsy (bless him). He finally talked me into letting him at lease give me twilight sleep for the biopsies, and gradually I got comfortable with general anesthesia.
I think the standard now is imaging guided biopsies, and wire localized biopsies. My surgeon is still open to excisional biopsies without image guidance, but strongly recommends image guided for accuracy, and in hopes of eliminating more invasive surgery.
Maybe you could talk to a different surgeon? Have you thought about asking for anxiety medication to help? I’m on an SSRI and a benzodiazepine for anxiety. I take a double dose of the benzo whenever I have medical tests to help me through.
***Edited to add that I had my first biopsy at 22, and had many, many more over the following 25 years until my current diagnosis and bilateral mastectomies.0 -
wonderfully supportive responses everyone, thank you I really mean that. Yes I refuse blood tests and pap smears (luckily or unluckily my appendix burst last summer so I had a huge op because there were other problems with ovarian cysts and all that fun stuff so my surgeon took biopsies of everything down there while i was wide open on the operating table. It took 3 nurses to take the drain out of my stomach when it was ready to come out but as I was there and incapacitated I didn't really have a choice!
I've spoken with my sister in law (a very no nonsense bit incredibly sympathetic person who herself had BC diagnosed. )After many tears this afternoon depending on what the doc decides she will come with me and be there for the whole procedure. I have to do this and I am unlikely to punch my sis in law in the face.
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Hotwing 7 ---- I can tell you that my biopsy was completely painless. -- however that's not why I'm responding --- I also have phobias and I completely understand your fear. Everyones phobias are different -- I had the biopsy with no fear, but I am terrified of elevators. Can you imagine trying to find doctors that are on the first floor. When I was in college I lived on the 10th floor of the dorm with no fear. My phobia's started later. I also can't swallow pills because I choked on a cherry when I was young. So I still haven't taken the pills you have to take after breast cancer. Do you think a valium or zanax would help you? I took a valium before my MRI and it didn't help --- this time I'm going to try a zanax - the chewable kind. I feel so bad for you because you just must have that biopsy. There is nothing worse than the fear of a panic attack, but I always have to remember that they are not dangerous.
p.s. I have to go on an elevator tomorrow to see my Oncologist. Hope I don't decide to reschedule the appointment when I get there because of that darn elevator.
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jessie, one of my work friends had an elevator phobia. When our office was moving buildings and were going from 12th to 22nd floor I never will forget her “practicing“ for a month before the move so she would be ready for walking 22 flights of stairs
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girl if I was there I would carry you up the flights of stairs myself xxx thank you and yes it's a complete irrational fear amd it's not of the pain, it's actually of anything breaking the skin and being inside me. Just the very thought makes me want to vomit
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Have you tried taking something for anxiety? I just had to have yet another biopsy and I explained my axiety and the gaVe me some xanax to take. It helped except it made me really sleepy!
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Hotwing - I agree with the suggestion for Xanax. If you have someone drive you, your doc would probably approve a hefty enough dose that you'd be singing. I know just the very smallest 0.25 puts me in la-la land, but I'm susceptible to drugs. I actually went to sleep waiting for a PET/CT - you have to lie there for 45 minutes w/o moving, which never would have happened w/o Xanax. And I took 1/2 a pill and dozed through most of my breast MRI.
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If I have to have an injection (or an iv) I do carry around a bottle of ativan which I can only just feel the edge coming off the anxiety maybe I'm underestimating its effectiveness for a bigger procedure and convincing myself beforehand that it won't work???
Deep down I know the Doc will say i need the biopsy / surgery, so between now and the time he says it, i have to get into the mindset of I'm going to do this rather than the I'm going to talk myself out of it if that makes sense. Today has made me realize I'm my own worst enemy.
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Hotwing7:
I understand. I almost passed out during an injection a while back and it was nothing compared to what I've been through with the cancer. It was just the location that my mind couldn't deal with. I'm fine with needles in the more usual places.
I had a vacuum assist core biopsy for the cancer. I did not see the instruments beforehand or during the procedure and it was very quick, literally a fraction of a second per sample, and in my case, they succeeded in numbing me, so painless.
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I, too, am severely claustrophobic and do not take elevators. I had a breast MRI. Ativan didn’t touch me. I had a friend come in to hold my hand. I barely “survived.” I need a brain MRI for something and absolutely cannot tolerate it. I will have a CT instead, which of course, is not as good and which has radiation exposure. I have no choice. I do very much understand your phobia!
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I am trying to remember what my dentist used when I had to have some horrible stuff done (all my uppers removed to get a denture 😭). It was one pill at home (they make you have a driver), then 2nd pill in the chair. Once that took effect, I had numbing shots I didn't notice. I barely stayed awake during it all, just enough consciousness to follow simple instructions. He could have cut off my nose and I'd have muttered "Cool, dude." There was one problematic molar with a wrap-around root that took at least a half hour (I calculated it later), during which struggle the dentist accidentally punched me in the opposite jaw when his hand slipped. I barely felt it and wouldn't have remembered except for his profuse apologies afterwards, and the enormous bruise I had for a few weeks. Call your dentist and find out what they give for heavy-duty procedures, then ask your doctor to prescribe that.
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Hotwing7, wondering why you posted? In your post you clearly know what you need to do and you closed the doors for help. Basically you said I can’t stand ANY medical procedure and I won’t accept help!
Time for you to grow up, be an adult and suck it up! Try hypnosis or sedative. If cancer is inside you a biopsy is the least of your problems and fears
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I understand phobias. However, I sat next to a woman at an integrative health center, while getting an IV glutathione, and the woman told me she didn't have a biopsy for possible breast cancer due to fear. The next time I went, she had died.
Medication might be a short-term help but for a longer term help, there are psychologists who do exposure/desensitization therapy. I believe there are novel treatments out there. For instance, if you successfully get through an "exposure", a certain antibiotic can make that experience stick in your brain.
Many therapists offer EMDR, and hypnosis. I got over a flying phobia after doing Reiki training. There are things you can do.
Allan Shawn, a professor at Bennington College, wrote a great book on phobias.
You really need to address possible cancer any way you can, and then also address the phobia in a deeper way than through meds.
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Hotwing7...I'm so sorry you are going through this. I'm also a RN and I would suggest Xanax for a routine biopsy. Its short acting so it would do the trick and the you would be alert. The only time they give general anesthesia is for an excision of the lump which means taking the whole lump out. I totally get phobias. The problem is if you do not address the biopsy you could be facing a lot more procedures. I also agree with looking into dealing with your phobias. Good luck and keep us posted.
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@mavericksmom I posted because it was on my mind, because it was what I was and still am trying to 'grow up' and deal with. A phobia is a phobia. It's irrational and all consuming. Your reply was neither warranted not helpful as people that deal with phobias cant just be told to grow up, in the same way that people with depression can't just be told to cheer up.
The replies here have been phenomenally helpful, I know what I need to do, I've read of others now who are like me, the knowledge of not being alone can sometimes make a person turn a corner.
So the next time you decide to flip a gasket and ask why did you post here, I thoroughly suggest that you don't.
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Hot wing, focus on all the people who get you and understand phobias and ignore the one rude poster. You will do what you need to do and figure out a way to do it. Just the fact that you asked on a public forum makes me think that.
Pessa, I am claustrophobic and did not know until my first breast MRI. They gave me Versed and that was enough to keep me calm. For my most recent one, I had an Ativan beforehand and then something through an IV. I believe a brain MRI and CT scan show very different things.0 -
Hotwing, I'm so glad you posted here and you are getting help. Don't ever let anyone tell you to suck it up for reaching out for help. And obviously you're receiving help from this post
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Hotwing, would nitrous oxide help? I've had that for dental work and it made a world of difference. I don't know if my fear of dentists is quite a phobia, but I have been so tense that I broke an arm off the dental chair once. Nitrous oxide is inhaled so there's no shot involved. I think it was also used in conjunction with the heavy-duty tranquilizer I took for the extractions. The combination made it feel like it all was happening to someone else.
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Peregrinelady,
You are right about MRI vs CT of the head. My doctor is OK at this point, with the CT instead. When you were given Versed,was anyone in the MRI room with you or were the techs in their booth?
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Chiming in to say all the sympathy in the world. My needle phobia is so bad that with my first three major abdominal surgeries, I refused all pain relief because it came by needle (this was before pain meds were part of the IV). And don't get me started on IVs, those are still terrifying to me.
You're definitely not alone.
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Well, if Dr. Djmammo says it's doable, it's doable. You could forward his note to your BS and your primary care doc, then ask your pcp to contact the hospital and confirm that you require sedation. Perhaps a few meetings with a psychiatrist at that hospital will apply the proper pressure on the BS, and also give you a few tools to take the edge off your fear and help you move toward tolerating at least minor and routine future procedures such as the aforementioned blood tests and paps.
I understand. I am fine with all anesthetized dental procedures--fillings, root canals, extractions, but having my teeth cleaned absolutely terrorizes me. My dentist has to inject my entire mouth for me to be able to deal with what for me is a major trauma. Each time, he tells me that I'm his only patient who needs this, but he does it.
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