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Biopsy Experience - 2/25/2010 11:41:54 PM
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trinigirl722
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From: Dallas, TX
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I just had a biopsy which turned out to be benign. I'm extremely grateful for the good news, but I was shocked to find myself feeling very angry and upset after the biopsy. For two days, there were times when I couldn't stop crying because I felt so traumatized.
I wasn't expecting the emotional fallout. And I felt guilty for being upset instead of relieved, and I felt ungrateful because of the angry feelings. But I couldn't help asking myself, "Was all this really necessary?" It's just so ironic that surgery is needed to confirm that a healthy person is, in fact, healthy. And now I'm sore and have a scar, and will have to end up paying lots of medical bills, even though I was really fine the whole time.
Considering the circumstances, my emotions were understandable. Six weeks passed between the time I learned I needed a biopsy and the time the doctor told me it was benign. This was because the needle biopsy was not successful, so I had to have surgery. So I realize I went for six weeks with the threat of cancer hanging over me, which was emotionally stressful. But in addition to that, the procedures seemed so traumatic, invasive and impersonal. In the imaging center, during the attempt at the stereotactic needle biopsy and then later during the wire localization, the staff hardly spoke to me. I realize now that this is because the procedures are so precise that they were just trying to do a good job so I would be diagnosed correctly. But it was still upsetting to be ignored, since I was the one who was so exposed and vulnerable.
Then, when the surgeon came in and said, "This is benign, just keep getting regular mammograms," and sailed out, it felt so anti-climactic. Six weeks of anxiety and trauma, only to be abruptly told that everything was fine and goodbye.
It occurred to me that support systems exist for those unfortunate patients whose biospies are positive (and of course that support is wonderful and much-needed), but there's not much acknowledgment of the emotional rollercoaster that everyone goes through during the waiting period and the invasive, sometimes painful procedures.
I was completely unprepared for these emotions, so I thought I'd post here to see what other's experiences were. If you have had a negative biopsy, can you identify with this? Did you feel you got the support you needed after the procedure? Do you feel hospitals should do more to recognize the emotional trauma of this process and perhaps provide some type of support system after it's all over? I'd really be interested to hear others' experiences and opinions.
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RE: Biopsy Experience - 2/26/2010 12:12:23 AM
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PitaKat
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I've had two biopsies done (I'm only 21). One was for a red spot on my lip that wouldn't go away. The other was for a mole my dr took off my leg. So for me they weren't nearly as invasive as yours. And they certainly didn't take 6 weeks! That's a long time to have to deal with the uncertainty 
When I had my lip done, I was upset that I had to have it done at all. I visited 3 drs and had finished a prescription for cold sores before they took a biopsy. The actual process hurt and left me with several large, black, very obvious stitches. My co-workers thought I had been in a fight  I'm VERY fair, with tons of freckles, and red hair. I am prone to skin cancer because of it. I thought about how I might have cancer at the age of 18. I thought about it a lot. But it didn't seem very real to me, so I wasn't too scared. After 4 weeks I got a call from a nurse, who told me I had a hemangioma and then tried to hang up. She didn't volunteer ANY information. I had to quickly ask her what it was again, was it dangerous, was it contagious, would it ever go away? Her words were "Hemangioma. No. No. No." And then she hung up. I had to go to the library to get any information. That was really the only part of the whole process that really stirred up emotion, how dissmissive she was. Other than that I wasn't upset. The hemangioma is gone now, btw, it took care of itself.
The one for my leg I hardly thought about at all because I pretty much knew the mole was noncancerous. However, I am left with an ugly scar that looks just as bad as the mole did, and when I was told it wasn't cancerous it was by phone call that was pretty much "The mole was benign." *click*
quote:
Do you feel hospitals should do more to recognize the emotional trauma of this process and perhaps provide some type of support system after it's all over?
I do feel they should do more. But I would be shocked to actually see it happen.
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RE: Biopsy Experience - 2/27/2010 2:09:45 PM
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trinigirl722
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One challenge for me during the attempted biopsy and the needle localization was staying still. I tried to stay stone-still, but apparently when I breathed I was moving too much! I don't see how they expect people to do it.
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RE: Biopsy Experience - 2/27/2010 4:56:36 PM
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trinigirl722
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quote:
ORIGINAL: blueeyedgirl2
Hey trinigirl. . . . As a nurse, I want to apologize for your bad experience. I work in the PACU/aka recovery room and deal with patients waking up from surgery. I am a tender-hearted, sensitive person so I really try to empathize with the patient and be appropriately supportive. It's a challenge sometimes though, because it seems our society is creating people that are lacking in coping skills. Some patients who have surgery are expecting to not have ANY pain! I'm not saying this is you, but the staff can be kind and caring, but if the individual is not able to personally accept what is going on, then it seems to that person that we don't care or are indifferent. The anxiety of a diagnosis or of the procedure is another component that impacts the patient's experience.
The hospital would probably love to hear your feedback. Feel free to call their patient relations department and share how you think things can be improved.
I'm so happy for you that you received good results from your biopsy!
Hi, Becky!
Thanks for much for your feedback! And thanks for all you do for patients. I do remember the nurse who took care of me in the room after the surgery was so kind and supportive; it was really nice to have her around. And one thing I can be grateful for is that I had very little pain after the operation. It was 1 on a scale of 1-10, and I never had to take the pain pills the doctor prescribed for me.
And that is so sweet of you to apologize on behalf of the medical community!  Thanks for the suggestion to call the patient relations department. I think I'll do that. The one practical suggestion I have is for the imaging center to add to their questionnaire, "Have you ever fainted?" This would have saved a lot of grief for me and the staff there. After I passed out, the doctor said I should have told them beforehand that I had a history of fainting. Honestly, in the midst of all the arrangements and anxiety beforehand, it didn't even occur to me. So I will suggest a simple addition to their standard questionnaire so they can be better prepared for other patients in the future.
The purpose of my post wasn't to criticize the medical community; I was really more interested in knowing others' emotional experience after a benign diagnosis. I was just so unprepared for the intense wave of feelings after the whole experience; I expected to be ecstatic but instead couldn't stop crying. After my surgery, I searched online hoping to find some resources but was surprised to find very little. Perhaps this is because my experience was unique. I did have a lot of anxiety about the procedure, which you mentioned impacts a patient's experience. Anyway, I just thought it would be interesting to see if others had similar feelings/experiences.
Thanks again for your reply!
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RE: Biopsy Experience - 2/28/2010 3:07:32 AM
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HisLamb26
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Hi trini,
I went through this early last summer. Like you-I was one of the lucky 8 out of 10 with a negative biopsy. It was about a month from initial mammogram "call back" to biopsy results. I had the core needle biopsy. Passed out cold during the procedure, before they were able to deploy the clip-but they got enough of a sample to do the biopsy so I didn't have to have surgery.
Yes-it was incredibly stress full. The week the results were back my doc was on vacation-so I went to the medical records department, signed a release form, and had them print the results for me....I had no intention on waiting another week for my doc to come back from vacation to find out the results.
I also felt emotionally traumatized by the experience....and then I felt guilty for feeling that way because I got "good news", and unlike so many of my peers I didn't have to face a cancer DX.
I had a dear friend dying of terminal cancer at the same time, and felt like I should just suck it up, because it was nothing compared to what she was going through. I didn't mention it to anyone outside of my husband, one friend and my sisters. Didn't want to worry family unneccessarily. I just told the kids I was having my breast checked to make sure the cells were healthy. Enough of the truth to keep them from wondering why mom was walking around with an ice pack in her bra...without making them worry too much. Quite the roller coaster.
The procedure itself wasn't painful-though I am not sure I could do it again without at least a mild sedative and some relaxation music. Would surely ask for drugs and if I can bring my MP3 player along before submitting to another one.
Staff was very nice, warm and kind to me. Sorry to hear you felt coldly treated. That surely must have made it harder on you.
< Message edited by HisLamb26 -- 2/28/2010 3:15:45 AM >
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RE: Biopsy Experience - 2/28/2010 8:07:22 PM
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trinigirl722
Posts: 1108
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quote:
ORIGINAL: HisLamb26
Hi trini,
I went through this early last summer. Like you-I was one of the lucky 8 out of 10 with a negative biopsy. It was about a month from initial mammogram "call back" to biopsy results. I had the core needle biopsy. Passed out cold during the procedure, before they were able to deploy the clip-but they got enough of a sample to do the biopsy so I didn't have to have surgery.
.... I also felt emotionally traumatized by the experience....and then I felt guilty for feeling that way because I got "good news", and unlike so many of my peers I didn't have to face a cancer DX.
Staff was very nice, warm and kind to me. Sorry to hear you felt coldly treated. That surely must have made it harder on you.
Hi, HisLamb!
Thanks for chiming in. So sorry you passed out! Now, core needle ... is that when you're sitting up or laying down on your stomach on the table (like stereotactic)?
As I reflect on the whole thing, I think God may have orchestrated things so I didn't have to go through the sterotactic needle biopsy because He knows what a wimp I am!  I agree -- if I ever have to go for that again, I'd like to take some music and at least drink Tension Tamer tea or something to relax me before the procedure. It's just kind of difficult to stay immobile on a hard metal table for an extended period of time while one anxiously awaits an unseen needle to pierce a tender body part! ;-) I was a bundle of nerves by the time they called a halt to it, and they hadn't even deadened the area yet.
And I felt like you ... guilty for feeling traumatized, because I had gotten good news when others had not.
I'm so glad everyone was nice to you there! I'm sure that made a huge difference. I think I was little too hard on the staff in my earlier comments. The radiologist WAS a little callous but only after a while; at first she was supportive. The surgeon wasn't callous but just hurried; I had to wait two hours in her office to see her for the results, and because she was so behind schedule she was anxious to move on.
BTW, love your avatar!
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RE: Biopsy Experience - 3/1/2010 6:29:50 AM
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HisLamb26
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Hi Trini,
I was sitting up, in a chair. I thought it a "stereo tactic"..procedure...?maybe I'm wrong. Doesn't that just refer to the type of biopsy equipment and the way they locate the spot to be biopsied? I thought having it done on the table or the chair just depended on the facilities equipment and space allowances, not the procedure itself. Seems a bit inhuman to me though to lie face down on a table with your breast dangling through a table....I'd rather the chair thank you very much. At least they had to look at my face, and remember the human being attached to the boob!
My nerves were pretty jangled at the time....but back to normal after a few weeks. I had to stay out of the gym for a week which was a bummer for me....but It was summer so I could walk outside. Too bad you have to wait so long for the results. That must have been the longest 2 hours of your life. Fortunately I have a few friends who are nurses, and I had them read through the medical mumbo jumbo in my results and translate them into English-though I could tell they were benign...beyond that I needed an interpreter.
_____________________________
"Many women who do not dress modestly lead young men astray, corrupt their chastity and spread adultery in society, which increases earthquakes," Hojatoleslam Kazem Sedighi
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RE: Biopsy Experience - 3/1/2010 1:09:09 PM
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thisistheday
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I had a breast biopsy about 1.5 years ago that turned out to be benign. I had the stereotactic needle biopsy, where you were lying on the table with your breast hanging down. That wasn't that bad; the procedure did not hurt at all. The staff were all very good explaining everything and just trying to make you feel comfortable in every way.
Waiting to be called in was hard; they had a special waiting room, I guess for the ones having the surgical procedure, so we waited by ourselves. (my hubby, who drove me there, myself, and our preschooler) It would have been easier sitting in the chaotic room with everyone else waiting for mammograms or whatever, I think. We just sat there nervously. Well, my daughter wasn't nervous; she was a good distraction.
What disturbed me most about the procedure was the number of mammograms I had done of that breast during and directly after the procedure. I was very uncomfortable with that. So much so that I did not have my six month follow up mammogram on that breast that I was told I needed. That led to extra months of worry over skipping that. I did go for my yearly mammo this fall and everything was OK.
When I had my mammo the technician hinted that I might be called back; something about since it is the first one sometimes they need more pics.... In hindsight I know she saw something and didn't want me to stress when I was called back. So I had just about gotten done stressing about them calling me back (I thought enough time had passed that they wouldn't be calling) when they called me back to come in ASAP.
When I went back in the tech told me they'd be recommending a biopsy. So I think I had to wait for my doctor to call me. After he called we got the biopsy scheduled for about 5 days later.
The morning came that I was supposed to get my results, but the doctor didn't call. So I called the drs office after lunch; my phone had dropped and wasn't working but they stayed on a bit until I got another phone. And somehow my drs. nurse had answered. That was a blessing. But my doctor wasn't in that afternoon. But thankfully the nurse called the doctor for me and let me know the results.
It only took around 2 weeks or so from my initial mammogram to finding the results of my biopsy. For that I was very grateful. Still I found the whole thing very traumatic. And like others, I felt very guilty that I was so traumatized since my biopsy was negative.
I am also still disturbed by the number of mammograms I was exposed to. I wish there was a better way.
Dee
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RE: Biopsy Experience - 3/1/2010 11:13:48 PM
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trinigirl722
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Hi, HisLamb:
I'm sure you're probably right about the stereotactic procedure referring to the equipment versus the position of the patient. All of this is very new to me, so I'm not thoroughly acquainted with all the terms. I guess I should have realized you were sitting up. Since you passed out, it stands to reason you were sitting versus lying down. And I'm so sorry you passed out. To me that's the worst feeling. I could feel myself as I was going, and I kept calling out to the nurse and doctor, "I think I'm going to pass out!" I kept trying to breathe, but it was like my lungs wouldn't open up, and no matter how hard I fought it, things got grayer and grayer until finallly ... clonk!  And you know, I liked the chair for the most part too, because it was more personal. On the table, they had me positioned so I was staring at the wall the whole time. At the time, I thought it was just coincidence, but now, I realize they probably did this on purpose so I couldn't see the needle, etc. I did start to feel very isolated and disoriented after 20 minutes or so. I did almost feel, like you said, that they forgot there was a human being up there attached to the piece of anatomy they were working on!
Thanks for saying how long it took to feel back to normal. That really helps me feel better and know I wasn't overreacting. As for the two hours, by that time I was just pretty much exhausted. I had gone to the doc's the day before, but they told me the lab was behind and didn't have the results yet. By the time I went the second day, I was just praying, "Lord, please can I see the doctor today?" because I was anxious for her to examine my incision. I had also decided I probably had cancer, and I was sitting there trying to brace myself for the bad news, telling myself to be grateful they caught it early, etc.
Hi, Dee!
I'm glad to hear that the procedure wasn't painful. That gives me courage to try that if this should ever come up again (though I sincerely hope it doesn't!). Your experience does sound very traumatic, what with the phone call to "come in as soon as possible," the special waiting room, the doctor's not calling you on time ... sounds like a lot of room for anxiety.
And I didn't like the number of images taken either. They took several when they attempted the stereotactic biopsy because the area was so small they had trouble locating it. And then when I went back for the needle localization, they took several more pictures. That DID worry me. I think I read somewhere that the radiation exposure level is about equal to a plane trip, but even so with multiple exposures I can't help but feel uncomfortable. I wish there were a better way, too.
It's interesting that we all felt traumatized but felt guilty for feeling that way. I appreciate you both sharing; it helps me to see that my feelings were a normal emotional reaction.
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RE: Biopsy Experience - 3/2/2010 8:18:28 PM
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sunshine22
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Hi trinigirl, I just want to say that I am very sorry to hear of your experience. I don't know what you went through, but recently I found out that my mom has been getting biopsies for 15 years, and they've all turned out to be benign. When she told us (my siblings and I) this it was because after long consideration she'd finally decided to have a double mastectomy. So I can only imagine what you're going through. I pray you never have to experience that again.
((((((((((((((((((((((HUGS)))))))))))))))))))))))))
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RE: Biopsy Experience - 3/3/2010 10:45:35 PM
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thisistheday
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Sunshine, I can see how 15 years of biopsies would wear on you.
Trinigirl, I wanted to say how sorry I was that you had to have the biopsy and not knowing hanging over you for six weeks. How very stressful for you.
I too am glad to know that I feel/felt the same things as others who'd had biopsies. Thank you for starting this thread Trinigirl.
Dee
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RE: Biopsy Experience - 3/3/2010 11:59:58 PM
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trinigirl722
Posts: 1108
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From: Dallas, TX
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Sunshine and Dee, thanks so much for your sympathy and sweet words!
Sunshine, I'm so sorry your mom feels this way! So, do I understand correctly that your mom's getting a double mastectomy not because she has cancer but just because she doesn't want to get any more biopsies? If so, I am so sorry for your mom! Poor thing -- she must have really been through the wringer to make such a drastic decision. I will be praying for her.
Dee, you're welcome! That was one of my thoughts in starting this thread -- that not only would it help me, but perhaps it might give support to others also. I just didn't see a whole lot out there on the Internet as far as supportive material or anything saying this is common, but I thought, "Surely I'm not the only one," so I thought it might be helpful for some of us to discover some common ground in this area. God bless!
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RE: Biopsy Experience - 3/4/2010 12:09:14 PM
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wareaglekd
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I haven't had a biopsy, but I did have a breast reduction a few years ago. I could not believe the up & down moods I had afterwards. I do believe that invasive trauma on this part of the body really does have some mental/emotional effects on women & they just don't seem to understand it. I fortunately dealt w/ a good office staff & they were great in those first weeks saying it was perfectly okay to call in about everything I was experiencing. Had to considering I had no upfront counseling of what to aspect. I think the counseling upfront it so important to be fully informed of what to expect, including the emotional aspect of it. k
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RE: Biopsy Experience - 3/4/2010 11:45:12 PM
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trinigirl722
Posts: 1108
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I'm glad you said that, Wareagle, because the same thing occurred to me -- that my emotions might be partially linked to having invasive procedures in this particular part of the body. Emotionally, I feel as if I've been physically attacked, and there's a sense of deep grief at having lost a small area of that part of the body. It had occurred to me that my feelings were probably related to this part of the body's having to do with self-image and sense of femininity, but I hadn't considered there might be even some kind of chemical reaction too.
As the scripture says, we are fearfully and wonderfully made, and there's probably a lot of wiring in there that we're not aware of.
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RE: Biopsy Experience - 3/6/2010 7:55:13 PM
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trinigirl722
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Wow, Sunshine! I am so sorry. Hope your time with your mom goes well this weekend!
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RE: Biopsy Experience - 3/15/2010 3:51:17 PM
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fluffmonkey
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I know I am posting this a little bit late... but I had a breast biopsy and it was benign too.. I went for my first pap smear and my doctor discovered the lump I had.. I was shocked that I never had noticed it... the lump was close to top part almost near the surface... and breast cancer and cancer run in the family.. so I went to have the biopsy to just check it out... they had me wait in dim room... and the lady was friendly but while doing the procedure she was quite and serious about her job... I found the lay still part very hard too... the lady told me I could move up until she counted to 3 and then she wanted me to perfectly still then.. and she even let me hear what the needle sounded like when it took the sample.. I think she did it about 5 times... but it came out benign.. so it was relieved... I am still paying my doctor bill... for that ... I know sometimes your like wow that is alot to pay for nothing happening but I think its worth it to know its not... and its been year or so .. my lump is still there.. and I think eventually I may get it removed... sometimes I have pain there... but the scar is soo tiny it looks like a freckle...in away lol
I think sometimes when you deal with something on a day to day baisis its easy to get disenstized to the emotions of what someone is dealing with or going through... to them a beginin tumor is a good thing and they don't think someone having hard time with that...they think the people should be rejoicing.. ya know..
Anyways I hope things are going better now :)
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RE: Biopsy Experience - 3/16/2010 12:42:06 AM
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trinigirl722
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Hey, thanks, Fluffmonkey! Glad to hear it was benign. It's good to hear your story.
Things are better now as far as emotions go. In researching this on the Web, I saw one hospital cautioned surgical breast biopsy patients against making any major decisions within 24-48 hours after surgery because the anesthesia would play havoc with their moods and emotions. So I think that probably would explain my crying spells for the first two days post-surgery. Apparently they were not all related to the biopsy itself but also to the anesthesia. A friend who works with surgeons told me anesthesia actually changes your brain chemistry. Brrrr! 
And I agree -- I bet medical personnel working in that area often deal with breaking bad news to people to tell them they have cancer, so I can understand how they would expect those of us who get the good news to be happy.
For my story, it's actually gotten worse since I last posted. I ended up developing an extremely painful inflammation, until one night it took me two hours to get to sleep with an ice pack and the hospital tube top on because it was so painful. I had the doctor paged Saturday because her post-op instructions said to call her immediately in the case of persistent or increasing pain. She sounded a little annoyed at first, like she couldn't figure out why I was calling. Finally she said, "Well, the height of inflammation is at 2 1/2 to 3 weeks after surgery," and told me to take Ibuprofen 3 times a day and make an appointment on Monday to see her. The Ibuprofen worked so well I didn't make the appointment, but I couldn't figure out why she hadn't told me to be prepared for this when I had my post-op appointment two days after surgery.
Then, when the pain finally wore off, for the first time I was able to feel that area, and I was shocked at how much had been removed. The pathology report said more was removed than originally discussed, but the doctor didn't mention this at my post-op. Anyway, I'm really going through a hard time now, since I know it was benign. I keep asking myself why I've lost part of my breast when nothing was really wrong with me? I've made an appointment next week for a consultation to ask her about this.
Also, when I first met with this doctor to discuss surgery, she said she thought she'd be able to do the needle biopsy, and she offered to. I was still rattled from the first attempt, so I told her I had a hard time staying still during the stereotactic biopsy, had started to tremble and couldn't stop shaking after I sat up, so I asked if I could have surgery instead so I could be sedated. At that time, I did not realize surgery would mean removing a larger area. She agreed and said, "Sure, sounds like you need a little sedation." I've since heard that some women take something to help them relax before a stereotactic needle biopsy, and now I wonder why she didn't suggest that to me so I could avoid the more invasive procedure? I'm going to ask her about this also. It won't help me replace what's been lost, but if I can know there were sound medical reasons for what's been done, at least it will help.
All I can say is for anyone reading this, if you can at all avoid a surgical biopsy, please do. Surgery is irreversible, so go with the less invasive procedures if you can.
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RE: Biopsy Experience - 3/16/2010 1:35:55 PM
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flowerz
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I had a core needle biopsy about a year ago. I wasn't upset at all, just so very relieved not to have cancer. I live in Canada, so there were no expenses and my scar is very small. I had to wait with the threat of having cancer for a long time, though, more than 6 months, and that was hard.
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RE: Biopsy Experience - 3/18/2010 11:18:14 PM
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trinigirl722
Posts: 1108
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I had never thought of a long wait being a factor in socialized medicine. Here in the States I think that would be unheard of. I can imagine how relieved you were.
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RE: Biopsy Experience - 3/23/2010 12:33:43 AM
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kygal
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I am really nervous. I am having to have my yearly but I am also going to have a place checked out. I am hoping they wont have to do a biopsy(I have no insurance). I am scared. I am just hoping she will say its just a fibroid. Oh my...
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RE: Biopsy Experience - 3/23/2010 11:27:35 AM
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flowerz
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Most lumps are benign, so try not to worry. I know that can be hard. In my case, they did an ultrasound before doing an biopsy.
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RE: Biopsy Experience - 3/24/2010 12:17:36 AM
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trinigirl722
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I'm sorry you're nervous, Kygal, and will be praying for you. Hopefully a biopsy won't be necessary.
Also, to update my story, I went to see the doctor today to clear up some questions. I'm so embarrassed, because some of the things I put in my previous post are not accurate. First, she said the area was still healing, and that's why it feels so small. Second, the specimen dimensions in the pathology report were larger because the tissue spreads out once it gets out of the body and is put into the lab dish. Last, she did give me the option to take something to relax for the stereotactic needle biopsy, but at the time I was so shaken up that I refused.
So, I apologize for my misleading post. The doctor was very nice and thoroughly explained everything. She was also very concerned and said she was sorry it had been such a bad experience for me.
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