Breast Biopsy Marker Clip Allergy
Hello Everyone,
I hope this day finds you well and I appreciate the existence of this board! It is such a nice resource for people to talk to one another. I am hoping maybe someone here might have some information on my weird health issue. It sounds outrageous, so please keep an open mind.
I have a breast biopsy clip marker that has been causing me to have horrible allergic symptoms for the last two years. Before it, I was fine; Now, I have lost my voice, gained weight, can't tolerate direct sunlight, have severe Raynaud's with capillary dropout, have more-frequent migraines, and have daily symptoms of shock (orthostatic hypotension, vision going blank, vasodilation). I know the marker is either stainless steel or titanium. I think the doctor said it was stainless steel.
Unfortunately, the office that put it in will not give me the serial number. The lady there claims they don't keep a record of it which I believe is a lie. The maker has not either and they will not give me the e-numbers of their stainless steel or titanium. The lady there says, "I don't think our titanium has an e-number" (Probably the tenth lie I've heard about this - all alloys have e-numbers). I am thinking of placing a Freedom of Information Act request about it. I have been to the hospital that placed it now four times and also called many times with not one returned call. So, the saga of the mystery clip continues...(today's forecast - cloudy with a 100% chance of lies and disregard).
I am furious with the doctor's office and the marker-producing company. It just seems like they should want patients to be better - not just try to save themselves and hide their mistakes. By way of ignoring me and getting in the way of my progress towards its removal, they are prolonging my suffering. The doc I found might take it out but only if he has the serial number and a positive allergy test. The allergy test will cost me 400.00 out of pocket and all of my other medical testing trying to figure out if something else is wrong is well over 10,000 so far - at this rate I will never own a home.
Hopefully, this doctor doesn't change his mind about taking it out after I have the test. I just can't afford any more consults. Too bad for me there is no allergy test solution for titanium (that I know of - not that I could afford it anyway). Hopefully, the doc will accept the fact that most all titanium contains nickel if he won't take my word that it is stainless and I never get that answer. Alloys are mixtures. The marker company secretary said they thought they usually sell the titanium to the doctor who put it in. I think that was a lie to try to brush this nightmare under the carpet. Titanium is supposed to be safer for people with nickel allergies. It is not supposed to slough off as much. I am fairly certain the doctor said it was stainless steel. But, having just had a drill going into my breast, I was pretty woozy.
At any rate, I am VERY allergic to stainless steel and nickel. Zippers give me hives and boils, I can't wear bras because of the metals - they excoriate my skin. I don't know about titanium (It likely has nickel), but I also react to silver and gold. Since the marker was placed, I have had nothing but mast cell degranuation, vasodilation, allergy attacks, dermatographism, hives, asthma, signs of anaphylaxis, and increasing food sensitivities. I have also gained 15 lbs and my hair started turning grey the month it was placed. I can no longer go into the sun without vasodilating, becoming hypotensive, and getting such brain fog, and I could swear, as a healthcare worker, that I am having symptoms of encephalopathy (probably due to nickel causing an increase in my Reactive Oxygen Species (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172618/). This also often happens when I exercise or am around any type of latex. Some doctors don't believe me (AKA have no idea how to treat me) but the shock symptoms are most definitely from mast cell degranulation. I am on claritin, zantac, cromolyn, zatiden, benadryl, nasal & broncho-steroids, and I carry 3 epipens everywhere. The histamine literally irritates me from the edge of my skin to the core of my bones.
I am and always have been a very allergic person (I almost died from Ceclor). In addition to this, I have HLA-DQ8 and am sensitive to gluten and latex. Many people I know with latex allergy are also horribly allergic to nickel. I think there should have been more warning about the clip from that standpoint. There should be a MANDATE for metal testing in people with a history of atopy (allergies, bronchitis, eczema, latex allergy, metal allergies) before any type of metal implant. The worst thing is, the clip was inserted right next to my skin (it was very easy to find/see this lump). In other words, it was a useless moneygrab. My quality of life is so poor compared to how it used to be. Now, I constantly wonder if I will die of anaphylaxis before I can even start a family.
To make matters worse, according to a mammogram this week (100+ miles away from home where they actually accept my insurance), the clip has migrated to near my chest wall. A 2011 paper about this particular type of clip indicates that is a frequent migrator. So, when I do get it out, I am looking at general anesthesia according to most recent opinion. I am praying so hard this doctor doesn't change his mind or back out on a technicality (i.e. saying nickel isn't stainless steel or titanium). Here's hoping the Hippocratic Oath wins in this case.
This horrendous experience has led me to believe there should be a couple of fail safes for us women going through these burden of proof/medical record nightmares when dealing with difficult health issues. I think there should be a online database of all medical devices ever placed (down to markers/clips - everything!) so that patients can get that information from any doctor to ensure patient safety (in the event that an office decides to conceal that info or ceases to exist). It might also be nice if there were a database dedicated to women's breast issues so that we don't have to go INSANE when we try to go to a different doctor to consult. The red tape with that is outrageous. Women die as a result of this - especially when they are dealing with offices that have poor communication who will not release pertinent information. It makes me so sad. Sometimes, it seems like the design it so you can't transfer the information elsewhere.
I don't want to scare anyone here. I am pretty sure this allergy is an EXTREMELY RARE OCCURRENCE. I am not suggesting that clips are bad or should be removed. I think they can be very good and that most types of clips probably stay where they are placed. I can't reiterate enough, in people with a history of atopy, there needs to be allergy testing first. I question all the time if this will be the death of me.
I would like to know if anyone else here has had to get a clip removed as a result of an allergy. If so, how did you convince the doctor to remove it? Was it done under a local or under general anesthesia? Were you diagnosed with systemic nickel allergy syndrome? Did you have chelation therapy afterwards?
If anyone has any ideas for ways for me to go forward and pursue removal, please share them.
I don't want to hear that it is not possible that I am allergic to it - I AM! On a similar board, I saw lots of posts to the effect of titanium/stainless steel is 'inert.' I wish that were true but basic chemistry tells us that metals are catalysts. Enzymes and proteins pick them up and carry them around and sometimes use them for bad deeds as far as chromosomes and other proteins are concerned. There is an innumerable amount of medical research (sometimes German, Japanese, or Norwegian) which has found that metals from implants wind up other places in blood, albumin, and connective tissue. My clip is very proximate to a lymph node. (If I could go back, I would not get the marker since mine was close to the skin. If I had a deeper tumor, I would demand a pure titanium clip but this is from my vantage point of extreme stainless steel and nickel allergy).
Any positive advice would be greatly appreciated. Feel free to PM me. I will go anywhere in the continental US (or maybe Canada or Mexico) for this procedure if I can just find someone who will do it soon (I am sick of paying consultation fees out of pocket only to be told no - I could probably spend over 10,000 more that way alone). It would also be nice to find someone with experience in it too.
If you got this far, thanks for reading.
Best,
ItchyWoman
Comments
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Im not sure any one here will have the knowledge you may be needing?
I know that my clip is made of titanium (which is a completely different metal than stainless steel and nickel) and it's so tiny I could barely see it when they showed me a sample. smaller than a grain of rice.
I can tell that you are very bothered by this and I hope you find the answers you are looking for.
Good luck.0 -
I'm sorry that you are going through this. My clip was titanium as well and also tiny as a rice grain. It was, of course, removed during my bmx. Hope you find some resolution and feel better soon.0 -
Thank you ladies for the kind words!
My first mammogram was suspicious so that is why they put it in. But, the pathology on the biopsy came back normal so I still have it.
Hopefully, most people have the pure titanium grade 1 markers. We should demand that - especially as far as breast markers are concerned since they don't require weight bearing. I am pessimistic about my marker (if it is titanium but I think it is ss) because of a news article about the company and the fact that lots of places use titanium alloys in medical devices.
link to Handbook of Materials for Medical Devices
Titanium is around 600.00 for 100 grams (less than a quarter ounce). Whereas metals like nickel are 7.00 for that amount. There might also be an issue with pure titanium being jagged when shaped and the pictures of the clip I have show it as being smooth.
I am combing through government documents to try and see whether or not there is a requirement for manufacturers to list the absolute ingredients of their product (for instance, in clothing, if something is >1%, it doesn't have to be listed).
I guess this stuff might not matter if one isn't sensitive to metals like me. I feel a duty to warn others because I don't want this to happen to anyone else who is sensitive to metals.
Thanks for reading!
ItchyWoman0 -
Very long post to read thur but will try to respond. I had a biopsy just over a year ago in my left breast. I have already been thru BC treatment for right breast several years ago. I freaked out when the doctor doing the needle biopsy said I had to have the titanium marker inserted. They almost refused to do it as I told them I did want any metal left inside me. ( I am also very allergic and past 7 years one thing after) This left side had always been described as a " cyst". Anyway she agreed to remove the fluid and if it looked clear would not send it to the lab and NOT place a marker, Which is what she did.
I was mostly concerned about irritation -inflammation a metal tip could react inside my breast. I am a retired RN and my experience w/titanium was it is the strongest metal there is. I am still bothered that she never sent the fluid off for pathology.
Your marker should be viewable on xray and they could remove it. Question would be who would do it and who would pay for it. Could be done but costly.
I might add that I have several surgical clips in my chest and under arm from my mastectomy that almost got identified as ca spread.0 -
Itchy Woman,
Were you able to get the clip removed? If so, did your symptoms subside? It too developed an autoimmune response from the clip. The past year has been a complete nightmare. I noticed changes in my body immediately after the clip was put in.
For 9 months I saw at least 12 different specialists and no one could tell me what was going on. I started to lose pigment in my face, my extremities were turning bright red for no apparent reason, rashes on my face, sinus problems, allergy problems, lips and tongue burning and on and on. Finally my dermatologist have me a metal patch test and I had a response to titanium and cobalt.
I know that doctors are adamant that the clip does not cause any problems, but I am a true testament to the fact that it does. I had the clip removed on Wednesday and am now waiting for my body to rid itself of the things that marker caused. My skin has started going back to its normal color since the removal of the clip.
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Hi Clipremoved,
I hope it gets better. Mine hasn't been removed yet. I think it would take a while for the immune system to forget it.
I am taking food grade diatomaceous earth to try and rid my body of the extra metals. I realize it could be dangerous but it couldn't possibly be as dangerous as the anaphylactic episodes I have been having. I just make sure that I don't accidentally inhale it when I prepare it. It seems to be strengthening my fingernails.
I too have had acrodynia (red hands) since the clip and other symptoms of heavy metal poisoning (sun intolerance). I haven't had a test for porphyrins done but I would be shocked if it weren't elevated. Two weeks before the clip I was gardening and having a nice time in the sun without symptoms of sun stroke; Now, I completely melt and become dizzy, aphasic, and confused when I am in the sun.
I also have a cavernous angioma now in my brain. Nickel causes increased angiogenesis...
If you don't mind my asking - Was yours a HydroMark? Where did you get it out? Did they require you prove it was needed out for certain first or do it based on a pain scale? PM me if you want.
I am so desperate to get this out for the chance of a normal life. If one more doctor refuses to take it out, I plan on getting a geiger counter and doing it myself.
Best,
Emily
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I am so sorry to hear of the trouble you ladies are having. I too have terrible skin allergies to Nickel, but my clip, which was the size of a sesame seed was made of medical grade Titanium and although it was removed with my breast when I had my Mx, it didn't give me any trouble in the couple of months beforehand.
I know you are convinced that this clip is the reason for your symptoms and I am not here to try to dissuade you, but I wonder if you are also aware of all the other things that have Nickel in them which could be adding to your load of Nickel, if in fact there is any Nickel, in your marker.
Jewelery is just one thing, money, zips, studs, cooking utensils, cell phones, bra hooks, eye glass frames, brass items, pens, are just some of the everyday items containing Nickel. Then there are all the foods that contain nickel which include chocolate, beans, lentils, peas, asparagus, cabbage, corn, mushrooms even dairy products and tea, just to name a few.
The list of foods is very extensive, but having had allergy problems in the past, I know, if you can lighten your allergy load, things can change quite dramatically and quickly. I would suggest, if you haven't already tried to reduce your load, give it a try and see if your symptoms diminish. You may find that you can control your symptoms with that alone and won't need to worry about removing the clip.
Take care!
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Well, I may have finally found the source of my horrendous allergy problem!! Thanks to your blog, I am going to have Metal Sensitivity Testing. I had a breast biopsy in Oct 2013 and the marker was placed. Three weeks later I began breaking out in hives and had severe angioedema. I had to get a steroid injection prior to my major back surgery 12-19-2013 because the hives were everywhere. After surgery, I began to break out more often and by Jan 2014, I had hives head to toe!! The swelling is severe enough I can not bend my legs on severe days. Now my mid-section and face are being effected. I have been anaphylactic twice and had to use my Epi-pen twice. I have seen two allergy docs and a dermatologist. Skin biopsies are negative and lab work is negative. They have me on so may meds (anti-histamines, prednisone, rescue inhalers for wheezing, singulair, pepcid, benedryl, monthly Xolair injections, YIKES), I can no longer taste the food I eat. Everything tastes like metal. My life has sucked since December 2013. I went from 155 to over 190 lbs in less than 4 months and can not tell you how fed up I am. I am a nurse by trade which makes all of this much worse. So thank you soooo very much for your story. I would have never guess that BB would cause so much HELL! It may not be the cause but it is worth looking into. I am allergic to many medications and metals, Nickel, Mercury, and maybe Titanium. I will let you know what I find out and once there is a decision made I will post it for all to read. Again, thank you so very much!
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jennshelton- good for you. Wow- medicine is far from a perfect thing. Metal toxicity can not only cause local redness- itching- rash but other neurological symptoms. The main reason for these titanium markers is to make it "easier " for breast surgeon. It does nothing for us so why are we letting them run the show. Hugs coming to you now.
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Grammy, you are incorrect that it does nothing for us.
a. There is often no visible mass for the surgeon to find so a marker is necessary. "Bad"tissue looks just like healthy tissue. The cancer can often only be seen under a microscope, so how else is the surgeon supposed to find it, or at least find it without lopping off half your breast?
b. Biopsies create scarring which can be read as a mass on a mammogram, so that marker identifies areas that have previously been biopsied. They also identify the very specific area so it can be watched in the future. for more problems.
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MelissaDall- as I said it helps the surgeon know where to cut. What I meant was that it has no medicinal value. I had a full mastectomy and lymph nodes surgically removed 2006. They did not use this marker back then but the day of surgery I wss injected into my breast multiple times with a type of blue dye. This apparently "lit up " the cancerous cells. There happened to be more than he had initially thought. It was not until 6 years later that my other breast got a biopsy done. That is when I refused the titanium marker. I might add that I have suffered w/crippling neuropathy and foot drop since getting Taxol chemo in 2006 and even had to wear leg braces (still do) So please folks make them explain fully any and all SE of anything that will go in or on your body an allergic reaction only takes a second to cause anaphalaxis or a lifetime of SE.
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I thought the blue dye was for the SNB, not the area of cancer in the breast.
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Not to mention, blue dye doesn't keep them from thinking they need to biopsy you again for what turns out to be scar tissue from the last biopsy...t
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For me, the blue dye was administered in Surgery, after the tracer was injected into the nipple area and the scans had located the Sentinel node, earlier in the day. The blue dye is to locate that node, or nodes and facilitate the removal by the Surgeon. My marker was removed with my breast.
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Exbrxgrl- No I am not suggesting the dye injection as an alternative. The morning of surgery for the mastectomy I was sent down to radiology. I lay for an hour undressed while I waited to get these " dye injections " . I had no idea what for and it hurt like hell. My surgeon had told me he doubted I would need ANY nodes removed. Not sure if they still do it that way but cells were sent down to pathology while I was still on the op table.. It was over 5 hours. My poor fiancé was the last person still in the post op waiting room at the end of the day. Turned out a bunch of nodes removed and only the sentinel one was positive. The cyst on the other breast was also there back then and they assured me it was only a cyst. I am not really looking forward to another mammo this year.
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Dear Grammy R, Mellisa Dallas and ItchyWoman
Posting here the same thing I posted in another thread.
I had biopsy markers inserted in June 2014. Ever since then I have had mysterious symptoms,
1) new and difficult to control asthma,
2) fatigue,
3) pain (stabbing and burning at biopsy sites),
4) heightened immune reactions resulting in several ER visits and lots of steroids
5) a dangerous allergic reaction to a titanium metal patch test (which was deemed inconclusive).
A number of doctors have dismissed me and told me this is in my head. I would like to believe that but my immune system is now so out of control I cannot work, sleep, eat. In recent days I have found these links that I found helpful.
1) reactions to titanium dental implants:http://www.robertgammal.com/OtherPages/Implants.html
2) case study on titanium staples: http://primeinc.org/casestudies/pa_np/study
/912/Adverse_Reactions_to_Titanium_Staples_in_a_Patient_Following_Cholecystectomy
3) adverse event with titanium breast markers:http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfMAUDE/detail.cfm?mdrfoi__id=752665I am not a doctor - but I want to share my experience as fully and honestly as possible in case other people may be experiencing this rare reaction.
Sincerely,
Foreign Body
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Hello foreignbody, this thread has not been active for almost a year. There has been some discussion before about the possibility of the marker causing allergic reactions, but it seems to be extremely rare. The titanium used in this tiny marker, which is about the size of a sesame seed, is also used in the massive rods, screws and appliances used in surgery all the time.
I don't mean to minimize your symptoms in any way, I am sure they are very real, but whether they are caused by the tiny marker is the question. You say you had a "dangerous allergic reaction" to a titanium metal patch test, but it was deemed inconclusive, I don't understand how that could be.
I can see you are really suffering and feeling terrible stress over this which is obviously fueling the symptoms. I do hope you can find some resolution soon.
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Ariom, I would just like to say that I too have exactly all the same symptoms as itchy woman. For two years I went from doctor to doctor trying to get help. I am extremely sensitive to the sun ... instantly body swells, sensitive to multiple medications, sensitive to multiple foods, constant asthma attacks. Within 10 minutes of entering Doctor offices, clothing and grocery stores my body would swell and I would have difficulty breathing. I have been living in the dark for two years now and cannot work ... I even have problems watching the television ... I seem to be sensitive to visible light ... I cannot watch tv for more than 30 minutes without swelling and coughing. Finally, my second immunologist diagnosed me with angio-edema ... my most obvious swelling was in my hands, feet and groin, but my chest swelled and hurt the most and then my legs. Once I received the diagnosis I started trying to find what I was allergic to I suspected some inert ingredient in my medicine but food also caused me great difficulty. Thankfully reviewing some of my medical records I found out about the titanium clips used by my surgeons. In reconstruction diep flap they used at least 30 to 40 clips to support the blood vessel that will keep the flaps nourished. I asked my allergist to please test me for metal allergies. I was floored when the test results came back .. I was severely allergic to nickel, titanium, colbalt, and chromium and mildy allergic to aluminum. I immediately stopped all medicines with titanium, went on a low nickel diet. I could tell that his was definitely my problem my asthma symptoms eased up considerably, but I still had burning mouth, sun sensitivity and swelling. I used the testing to request the removel of the metal from my body. This was not going to be an easy surgery in fact it was a five hour surgery and the surgeon had to leave in a few clips but ultimately removed more than 30 clips from my body. Pre surgical testing revealed damage to my lungs and even more shocking damage to my mid-spine only (a most unusual place for damage) exactly where all the clips were in my body. I did not have that damage 2 years ago before mastectomy and reconstruction. I am currently a little more than two weeks from removal surgery right now and the swelling in my feet, legs, and groin have disappeared. I still have swelling in my chest of course I need more time to recover from the surgery but the severe pain I constantly had in my armpit where the majority of the clips resided is gone, the horrific muscle spasms around the armpit area gone too. My mouth burning gone except when I eat food with too much nickel which is really hard to avoid. I am still sun sensitive but I'm hoping with time that this will get better. Yes, this is somewhat rare but I believe there are many people out there suffering as I did not able to contribute their symptoms to metal implants because the type IV allergy reactions are delayed and usually occur six months or later after implantation.
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Wow! This thread is a real eye opener.Keep advocating for yourselves so that you can be treated. Go to different doctors if the original doctor does not believe you. Empathetic, caring, and knowledgeable doctors are out there. Unfortunately, many times, doctors may "belittle" patients if the doctor cannot diagnose the condition, especially if the condition is uncommon.
Good luck to all of you. I will pray for recovery for all of you.
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Hello Ladies,
Please visit my new blog to find out why I am writing this. I've written about pain and cancer, but I haven't yet written specifically about the Metal Biopsy Marker that was the source of sooooooooooooooo much pain that I was bedridden just from pain for nearly a year. I haven't explored it, mostly because I am not far enough along in the writing process yet to do the subject justice. I have recorded the positives I derived from living in pain.
After months of suffering with no end in sight, as I had expected, I finally called the doctor. We looked for MS, I had a full body CT Scan, brain CT, bone MRI, all to supposedly find the new cancer that was the source of such excruciating pain. I had to be taken out of the MRI and given double pain medications just to be able to lie flat and in one position for the scan. I was nearly out of my mind with pain.
I wrote a short piece on pain but without broaching the subject of the metal clip because of the complexity of the issue. I haven't written about this extensively in the blog, but it was the metal biopsy clip causing the pain I write about. Once my research led me to the marker as being a possible culprit of the pain, I "tricked" them into removing it by finally being willing to get the little bit that was left of the original tumor taken out in an 8mm lumpectomy, a tumor that at one point was 14cms.
Rather than retell details here, read what I've written. http://healingwithcate.tumblr.com
I have only just begun writing, but there are a few important breadcrumbs here about this topic of pain. The pain I have written about was immediately gone after surgery. No more pain after the marker was removed and I moved onto a recovery process that I have just finally completed.
Please let me know where you have questions. It will be my life's work to share what I learned. I saved my breasts and most likely saved my life. It wasn't easy but I did it.
hugs, blubelle
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Although you'll hear that titanium allergy is rare, people who have a history of metal allergies should be evaluated prior to having any type of metal implanted, no matter how small! Below is one of many articles I read months ago because I am having a reaction that can only be attributed to titanium breast clips. I've had several tests; allergy patch testing, blood tests and biopsies, but the proper test is really something that looks at your immunological response to what's already inside of you. Melisa Testing is performed for that! I've just had that and am awaiting results!
A case of allergic reaction to surgical metal clips inserted for postoperative boost irradiation in a patient undergoing breast-conserving therapy.
Tamai K, et al. Breast Cancer. 2001.
Abstract
We report a case of a 28-year-old woman with right-sided breast cancer. The patient had been treated for atopic dermatitis since her infancy. She underwent breast-conserving surgery (BCS) in July 1998, and three titanium clips were placed at the margin of the excision cavity at the time of surgery. Two months after surgery, the patient exhibited a rapid exacerbation of atopic dermatitis. Various drugs were suspected to be the cause of the allergic reaction, but the results of a bi-digital O-ring test (BDORT) suggested an allergic reaction to titanium clips. In August 1999, the patient underwent a second operation to remove the titanium clips under local anesthesia. Allergy to surgical titanium clips is a rare complication, but in patients with a history of severe allergic diseases, a preoperative immunologic examination should be performed and the patient's history of metal allergy should be investigated.
PMID
11180773 [PubMed - indexed for MEDLINE]
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They didn't say people with a history of metal allergies. What they actually said is " patients with a history of severe allergic diseases" should have a preop immunologic exam and their hx of metal allergy should be investigated. Sorry you are having such difficulty and good luck with your results!
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Just saw this thread. The linked thread was started by jdp in June 2017. When I wrote my response to him, I tried to get the Mods to contact him, but they wouldn't. So, I have no clue of what happened to his wife.
I'm adding his thread here and this thread on his thread.
Obviously, anyone who has had the metal testing done with positive reaction YAY. Improvement of symptoms post removal YAY.
IMPORTANT: next step in the process is that the FDA reporting paperwork for "Adverse Event" Should be sent in by the provider. It's a requirement, but how compliant docs are who knows. Reporting of adverse events with drugs and medical devices is under the oversight by the FDA.
Once a threshold level of reports are received by the FDA, they send out a warning and or add a warning to the paperwork related to the device or drug.
https://community.breastcancer.org/forum/91/topics/855809?page=1#idx_15
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A question was raised in one of Gramma's posts " Your marker should be viewable on xray and they could remove it. Question would be who would do it and who would pay for it. Could be done but costly."
If metal testing would be done and the answer was that the patient had an allergy response to any implanted device, it would be determined that it was "Medically Necessary" and insurance would cover it.
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