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Frustrated with this process.

msradar
msradar Member Posts: 13
edited January 2022 in Not Diagnosed But Worried

Hello,

I had mammo, then called back from for more pictures. Then told I had calcifications and needed biopsy. No other info other than get it done. I left with a scheduled appnt but I had lots of unanswered questions. I tried to call to get answers and got made fun of. I did show up for the biopsy appnt but the doctor was so rude and condescending that I walked out.

I shared my experience with my hemotolgist and he referred me to different center for repeat diagnostic 3 months later. I had back surgery and the recovery had been slow and painful. I did not want to have any procedures that were not necessary at the time. Considering that my previous mammo was 2 years prior and normal, I did not see any reason to rush.

I went and had this second opinion mammo, with the same outcome....the doctor scream and yelled at me. and she was yelling. and screaming at her staff. I walked out. Got a call a few days later to scheduled appnt for biopsy. Told her I really was not interested in proceeding. She keep pushing, so I scheduled it. In the meantime starting doing research. After the information I read in the medical journals are how useless mammo is and that women like me end up getting very high doses of radiation due to dense breast tissue. I got angry....very angry. I canceled the appnt at the last minute.

They sent me to see a breast surgeon. I pissed her off. because I told her I did not want a biopsy as I did not see any reason to have one. Plus its invasive and they demand that I have the breast clip which I did not want. I have auto immune issues. So I walked out again.

More research, and I had a thermogram done that showed nothing in the left breast that they were flipping out about. My mammo showed a loose ring of micro calcifications. I had back surgery and spent 6 hrs on the OR table face down and I had discolored marks on my face to this day. When I woke from surgery my chest, breasts were sore and bruised. I was told no by 3 different radiologist, hemotolgist and breast surgeon.


I have thermogram down that shows the left breast with calcifications is fine, but there is a something in the right breast, I sent that to the surgeon and she finally orders ultrasound. While waiting for Ultrasound appnt I get a letter from the breast surgeon's office saying they are trying to contact me and how important is it to follow up and contact them now. Its signed by the office manager. I call and I am told by the office manager that the PA for doctor was not happy with me and she had her send the letter. She did not read the notes so she didn't know what the plan is. I told her off in a nice way and followed up with a very strongly worded letter.

I get the ultrasound and they say its a cyst with debris in it that needs to be scanned in six months. They see nothing in the left breast but push for biopsy. I get tit scheduled and go in a few days later. But they still demand that I get the marker. So I went through with the horrid experience. The next they call me and tell me its a fibro adenoma which is benign. So I was totally right and and now I am really enraged with whole process. I want this clip/marker OUT and now.

To make it even worst. When I was tried to take the bandage off the stupid girl that put it on taped it to the steristrips. So I pulled the whole thing off. I have been using heat and massage because it has a goofball inside it. It burns and has stabbing pains. they refused to listen to me that my body does not do well with foreign objects. I eject them and push them out of the skin. I tried to call them to ask about the breast is feeling and left a message. I never got a call. they got my money and what they wanted I guess I am not worth a call.

This is my LAST mammogram. I am never going back after this mess. My goal now is to get this clip out of my body and get it to heal. the wound is seeping and leaking so I know its open and trying to push it out. I am not going back to see the surgeon. She can go kick rocks. I will keep my thermogram and ultrasound appnts.

I should have listened to MY instincts. They are NEVER wrong. Sorry for the typos and grammar errors. I am beyond angry. I guess its a good thing the office is closed because I really want to stab the whole lot of them with a 9 gauge biopsy needle with less than enough numbing meds and cut out a few chucks of their body!!


Update Day 4 post biopsy: The area they biopsied has been swelling up like a golfball, then draining. It was clear and blood at first. This morning it was yellow and green. None of the numbers they gave me work. No answer just voicemail. The breast surgeon is on vacation until after the New Year. I did reach someone in the office who claim they will call back. I finally called the mammo center who said call the breast surgeon. I'm at that point time to take matters into my own hands. This swelling and drainage will not stop until this marker is OUT!!!

Update Day 5: Spent all day yesterday getting calls back and forth from the breast surgeon and the mammo center. Everyone is passing the buck. They told me they would see me at 2pm today. Then called me back and said I had to see my surgeon who would not be in until Tuesday. So they say 4pm Tuesday. Now they are calling asking me to come earlier which I can't have a dental appt. I finally told the lady I can come now if you want and wait. She tells me the surgeon is in surgery all morning. I told her if you can tell me if she is going to remove this clip today I will change my dental appnt. If you can not confirm that then we are leaving it as is.

I called the taeching hospital where I get all my care normally. I left there cause the mammo was so rude. She got me an appointment for ultrasound for Thursday and to see their breast surgeon on Monday Jan 3rd. She said if its infected that I will not be able to get the clip out now. I have to wait until the infection is cleared. UGH!!!!!!! All this over a stupid doctors not listening to me who is the patient and I know my body.

I also saw my breast surgeon. She claims its all healing ok. pulling off the bandage I pulling the plug that was keeping a hematoma in so I drained it. So now it's draining on its own whenever it feels like it. She claims its already sealed over but its drained a few times since I left the surgeon. Probably related to me doing physical therapy and moving around like normal. That seems to make it swell up and form a goofball and then drain. She wants me to wait a month and basically let this thing heal and settle in to see if I change my mind about wanting it out. She did schedule a removal for January 17th. I have to have another mammogram with wire placement to have it removed. She tried to explain it to make it distasteful in the hope I would change my mind. Then I told her I went with a friend for that and lumpectomy done under local. So she could chill on trying to scare me. We did talk about what triggers me to reject stuff and she agreed that surgery is going to ramp up my immune system even more than it is with the marker in. We agreed to disagree that its already. causing issues so out would be better. I asked about removing with stereotactic and she said nope. If she does she will also take out the fibroadenoma so I don't have to deal with it in future mammograms.




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Comments

  • alicebastable
    alicebastable Member Posts: 1,932

    I'm sorry that you find the best care practices so frustrating, and that every person you've encountered has screamed at you. What an odd situation.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,626

    msradar,

    I am sorry you find yourself in this situation. TBH, I am quite surprised that you have been yelled and screamed at by different medical professionals. I know you are happier with the thermogram but as a screening tool they are not considered reliable.

    I am not sure I have any words of comfort as what you went through, minus the screaming and yelling, seems well within bounds of standard of care, including the tiny marker. Take care

  • wondering44
    wondering44 Member Posts: 247

    msradar,


    How lucky that you got a clean bill of health and not a callback with a diagnosis of DCIS or Breast cancer. Congratulations!

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Sounds like you need to find a new place to get mammograms done. Skipping them is not worth the risk. A previous mammogram being clear is nice but meaningless in the future. Cancer doesn't care if your last mammogram was good.

    You may not want to do all the things they recommend and that's okay, but they are not trying to be jerks. They're trying to save your life.

  • sarah_78
    sarah_78 Member Posts: 119

    Dear msradar,

    I am not screamed and yelled (yet) but stared at funny, pushed aside, waited hours, wrote numerous unanswered e-mails and been treated very unpleasantly during the whole process of diagnosis and now treatment. One of the reasons I found is that not many people ask questions and they have 100% trust in medical personal and when someone challenges with questions, they are being perceived as unreasonable. I have such experience especially from nurses, doctors I met were a little more polite, yet still get annoyed if you challenge their decision.

    I am glad your condition is benign so you don't have to deal with the nightmare anymore. For me being my own advocate and trying to stay on top of my medical decisions had been really challenging so far. I sometimes lose hope and think I won't be able to make it out in one piece. It gets so dense at times, I lose the outlook, the goal should be taking care of myself and not stress about little issues but it seems to be impossible when no one seem to care about me.

    It feels like a battle on two fronts, one my body fighting with cancer and another one I am fighting with the medical system.

    In the hospital I am being treated the nurses painted me as some form of witch, so much so when I went to talk to a few friends in the other chemo room and teased a friend, I heard the nurses gossiped as if I was being rude to other patients. I am a researcher in real life, usually very polite to everyone but I need facts and answers and need to be convinced. Does this make me a bad person?

    Either way, i'd rather be perceived as a bitch and be in control then let it go and feel clueless.

    And you can just rant to us but you should also relax and celebrate it turned out to be nothing after all. I am happy for you.

  • msradar
    msradar Member Posts: 13

    yes I was screamed and yelled at. The first doctor when I had the diagnostic mammogram. I was told to go to the dressing room. I turned around and her curtain flew open he walked in with the tech and told me You need a biopsy you have calcifications that maybe cancer. Questions and walked about. He was in a big huff. The girl really didn't say much more and came back with an appnt. I was in shock and walked out. I tried call back to get answers to some questions. The girl on the phone asked me why didn't I ask questions at the appnt. and before I could respond to that she laughed and said " oh did you get deer in the headlights and I got slammed on hold. Another lady came on the line and I told her I had a lot of questions. She could not answer any of them and begged me to keep the appnt. I told her I was going to cancel. she said keep the appnt. So I assumed the doctor would answer my questions at the the appnt before any procedure was done. I walked in for my appnt and she was running me through and was all in a rush. When I told her I had questions and would the doctor be speaking with me before the procedure, she yell and me and told me that she called me and told me to come extra early, that they had a scheduling conflict. I told her she could have canceled my appnt that would have been fine. I also told that an emergency on her part was not an emergency on my part. I arrived at the scheduled time. I am not a piece of meat or cattle to slaughter and until my questions were answer NOTHING was going to happen. She told she would go get the resident. I told her no, you go get the doctor that will be doing this procedure. I don't want no lacky....because so far your doctors have not taken the time to speak with me. She got the doctor and he flopped in the chair very annoyed and said what questions do you have. I told him I want you to explain from the being why I am here and why I need this procedure. You need to show me what you are seeing on my films. I will not consent to anything until I can make an informed decision. He got all snarky. I again walked out.


    Next, I report both those doctors and spoke with their female supervisor. She was just as nasty. I told her I wanted more information and to show was they were seeing. This happened because I filed a formal complaint and blasted them on social media. This is a large teaching university medical system. They are known to have crappy customer service which means privately insured patients will not go there unless it's some specialty. they are trying to change their reputation. So social media negatives get their attention.

    The supervisor was just as nasty, She did not tell me anything. When I told her I was going to get a second opinion. She said "good luck, we do them for most of the southeast coast, no one will touch it!" I have that conversation recorded. I started recording all conversations after the first encounter. You have had two doctors here and I reviewed your results. You have had 3 opinions. After that my primary doctor wanted to send me to see their breast specialist I told her I was not interesting in going any further with the issue and to drop it. Over the course of 6 months at every follow-up appnt she would ask. I finally;y had to tell her to drop it I'm not changing my mind and you can document that I am not interested in the chart.

    This is when I got sent to a different medical center for diagnostic mammo 3 months later. While waiting for my scan, the radiologist a Dr Gough came down the hall yelling for all the techs to come out of their rooms she needed to speak with them. She was sick and tired of them not closing their studies and it was slowing her down. The tech standing outside my room said I have been closing mine all moving. She screamed back obviously you have not or I would not be our here. Get your stuff together I am tired of them and stomped off. I had my study and my tech was very nice. When the Dr gave me the results she looked at the wrong study to compare with. She was supposed to compare with 2021 June to current. She was looking at some studies from 2015. Then started the biopsy talk and I told her I would only consider biopsy if it was last resort and absolutely had to be done and no clip placement. She jumped up out of her chair and stood over me seated and screamed no one would do that. no one....and started walking out the door. I asked for a copy of my study and she scream no like I was some child and walked out. I filed a formal report and saved my recording of the day.

    So yes I have been screamed at and mistreated on more than one occasion and I audio recordings to prove it.

    As far as why I went for mammo? this was my last mammo after this I will never go back. Its a waste of time anyway. They dismissed the issue with the right breast because it did not show up on their mammo, but it does show on ultrasound and thermogram....but they do not believe in thermogram. So as far as I am concerned they are all money grubbing pigs. and will not get any more of my money. I do not trust them. Its all a racket to get money by using fear of what if? When I told them upfront I don't care what it is I do not want it biopsy. and even if it is cancer I will not have surgery or take chemo, radiation or pills. So based on that why do I need to have the biopsy. They were like so you will know. 80% of these biopsies are benign. You will have peace of mind. I told them based on those statistics you are going to torture me and put something in my body I don't want to say to me "hey you don't have cancer! Isn't that great happy news!!!" When I keep saying I don't care and I don't want to know and I don't want biopsy because I do not want your clip and I don't believe there is anything wrong that needs this approach. leave it and me alone!


    This clip I have told them I want it out NOW as soon as I can. It would be tomorrow if I had my way. and if they give me grief I let them know I will dig it out myself. It's already created a big golfball. Which will gradually move to the surface and push it out in time. That is usually what happens to stitches, splinters, and glass shards. The way it feels right now. I will be massaging and putting heat on it and seeing if I can get it out over the next few days. Its started leaking and draining. Which is also a sign of my body pushing out the foreign object. I told the techs at the end of the procedure when they showed me a picture of it in my body. See you in a week with my clip. They were like you better come with the clip framed. I was like BET! I know my own body.

    When I had major back surgery the stitches were on my bed 4 days after surgery. My neurosurgeon was shocked. When I returned for my 2 weeks follow up there was one still hanging on that she pulled. She was like they should not come out this fast.

    Bottom line I'm pissed off and not happy with any of this and someone is going to pay. i am so glad I recorded all my interactions. I will get this darn clip out of my body. I have no plans to EVER have another mammogram done. Even the doctor that did the biopsy admitted that mammogram is not perfect and not the best but its its the "standard of care". At least he was honest.

  • msradar
    msradar Member Posts: 13

    I agree with you. I have a daughter born with a genetically inherited blood disorder, called sickle cell anemia. While most people associate it with black people there are different types of it that does not affect only black people. I have battled the health community since she was born. I get tired of talked down and assumed I can not understand what is being said. I should be a good little parent or patient and do as I am told. Don't ask any questions.

    At first when this all started I was like WTF is wrong with this people. Did Covid really mess them up and make them cranky trying to jam as many patients through the system as they can? I told a good friend what happened the first time. The first thing she said to me was I think you were mistreated because you are black. I was shocked considering she is white and we have been friends all our lives. I had not been thinking that way. But when I say how they treated a young Hispanic women and left her in tears who was waiting behind me I had my answer. Then when it happened a second and a third time, when I was calm quiet and asking questions which I had written down...I knew it was very possible that race and sex was a part of this.

    the screaming doctor, I say she was having a bad day..and I just pushed her over the edge.

    I will fight for and deal with this in my way. but I will not be having any more mammograms. Because I am also dense, they have to crank up the radiation...and now that had this biopsy they want me to have scans more frequently...which I say no....I don't need you making me a cancer patient by radiating me. Considering I have had 6 + mammos this year alone. Plus a bunch of MRIs, CT scans, and general xrays dealing with my health issues that do need attention.

  • msradar
    msradar Member Posts: 13

    I'll celebrate when this clip is out so this wound can heal. ugh!!! 9 gauge needle.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    No medical scan or screening is perfect! And neither are the standards of care. But they are the best we have right now based on available research. No doctor in their right mind is going to say they are 100% perfect, because they aren't. Him saying they weren't perfect wasn't some big revelation, it's a well-known fact. Other scans are more accurate at identifying cancer in the body but those scans also bombard your body with a lot more dangerous radiation. So mammograms are a compromise: they catch a lot of cancer (but not all) using a lot less radiation than MRI, CT, or PET scans.

    If your plan is to decline all treatment for cancer, then avoiding mammograms makes sense since it won't matter if you do develop cancer.

  • sarah_78
    sarah_78 Member Posts: 119

    Now about Mammogram, they aren't too bad. CT is much worse, some data...

    image

    copied from here

    Of course they still add up, 6 in a year is a lot. I'd say try to find a doctor you trust and settle on a yearly screening plan you feel good with.

    I am sorry you feel discriminated, as someone who had been in "discrimination pool" all my life, I can understand the frustration. Would you feel more understood with a black doctor perhaps?

  • harley07
    harley07 Member Posts: 247

    @msradar - I'm sorry you have had such a rough time with the mammograms and biopsy and were treated disrespectfully. I'm a bit surprised the doctors have been so pushy about follow up. IME the medical professionals are typically so busy that they make a recommendation and if the patient chooses not to proceed or follow up, so be it. They usually have so many patients that they are not aware if you do not keep a follow up appointment.

    One thing I have found is that as the pandemic has dragged on, the healthcare workers are burned out,have little patience for questions and even less empathy. Perhaps for now you can focus on getting care for the other health issues and revisit the need for breast imaging in 6 or 12 months. Best wishes.

  • gb2115
    gb2115 Member Posts: 551

    So glad it wasn't cancer, that is reason to celebrate!!!

  • msradar
    msradar Member Posts: 13

    @ Sarah_78 We are kindred souls. I need facts and stats. I don't want your emotional dribble. I agree with you. People like us tend to annoy a good bit of the medical community. Though I have met some good female doctors who were very impressed and happy that I was taking part in my care and asking questions. My vascular surgeon, neurosurgeon and physical therapist are all happy that I want to be a part of my care. I've only met with issues with pain management, breast and mammogram seem to have issues with answering questions.

    I can say that its definitely left me with far less trust in the healthcare system in various areas. I will be so glad when I can get past this issue and get this healed up.

    I told the girl at the office that they have to get this out or I will dig it out with a rusty spoon!! At first she was like no!!! Then she realized I was joking. Then I told her...I'm not kidding. I will get rid it myself if I have to. You can find anything you want if you know where to look! I'm tired of this now and its only been 5 days. I didn't want it to begin with and allowed myself to be manipulated into this when I should have followed my instincts and said no.

  • moth
    moth Member Posts: 3,293

    OP, So glad it wasn't cancer.

    Keep getting your mammograms. Also I suggest you arrange access to the online pt portals and get all your imaging reports, which will list things like a BIRADS score, possibly an assessment of breast density etc. Then you can read for yourself why radiologists are recommending a biopsy and other follow up.

    Medical.staff are eager to diagnose and treat cancer, they do not want to make you upset so this is very strange happenings


  • msradar, I'm a research geek, as analytic and fact based as anyone can be. I certainly understand the need to have all the fact and stats - I'm the same way. Therefore, to moth's post, I would suggest that you read up on breast cancer imaging and the diagnostic process. I can't comment on the behaviour of the individuals that you dealt with but the process you went through was normal and appropriate. Perhaps with a better understanding of why and in what circumstances certain procedures and follow-ups are recommended, you might frame your questions differently which could lead to more favorable and informative responses from the medical staff you are dealing with.

    The breast cancer diagnostic process is far from perfect, but all of us here have been through the process and have been diagnosed with breast cancer, in many cases thanks to the diligence of techs and radiologists and other doctors. Perhaps this is why many of us don't see the same issues that you see as you describe your experience (except for the issues with individuals screaming, of course).

  • Karen1950
    Karen1950 Member Posts: 1

    I had a mammogram last week.. they calld today and I was told that there was something abnormal and I need to come back for an advanced mammogram and an ultrasound. The closest appointment I could get is 2 months!!

    I would like to get it done right away since I have breast cancer history in my family and I'm GETTING MARRIED in April.

    I need to know!

    I don't mind paying out of pocket for the tests and I don't care where they are going to be done. I'm in Southern California but we'll go ANYWHERE I can find the test available NOW. Any help/ideas will be very much appreciated!

    Thanks!

  • parakeetsrule
    parakeetsrule Member Posts: 605

    If they are comfortable with you waiting for two months, maybe that's a good sign? When my mammogram showed cancer, they rushed me into an ultrasound and then a biopsy the same day, even though I didn't have an appointment for either one.

    If you don't want to wait, start calling around to see who has appointments. And check back regularly with your existing appointment office for cancellations. But keep in mind that lots and lots of people are being seen and screened now, because so many didn't go during 2020. It might be hard to find an immediate opening.

  • msradar
    msradar Member Posts: 13

    I'm back from the surgeon. This is the first time I saw her. She is a straight shooter.

    She will remove the clip along with the fibroadenoma next month. They will call tomorrow with the dates available. She asked me to give it time to see if it heals and is ok. If not I will be scheduled and ready to go. I'm not happy that the only way to remove it is to place a wire, remove in the OR under general anesthesia with an open incision.

    If they had only listened and not put i the damn clip all would be fine. She said its not infected. That I had a hematoma. When I pulled the bandage and steristrips I pulled the scab covering the opening and the hematoma drained. So I spend up the healing process.

    She said its not infected. That I had a hematoma. When I pulled the bandage and steristrips I pulled the scab covering the opening and the hematoma drained. So I spend up the healing process.

    We shall see. I scheduled an appnt at our large teaching hospital breast center to see what they say. I have an ultrasound on Thursday and meet with the Breast specialist next week. They were happy to take it out and told me that they do not require clips for biopsy. So whoever is the faster I will go with. I want this OUT!!!!

    She wants me back for a follow-up and another mammogram and ultrasound in June. I told her I'm ok with ultrasound and thermogram but there will be no more mammograms for me. She asked me to reconsider and give it some time. She will provide me with more info on the "value" of mammograms and again game me the "standard of care" speak that thermogram is junk. I stopped her there and told her that there were issues that I did not share within my screening information and the thermographer who read my study found each one. So I disagree with her opinion and attitude toward thermography used in conjunction with other screening methods.

  • sbelizabeth
    sbelizabeth Member Posts: 955

    While in no way would I argue or make light of your experience, msradar, I would urge you to consider a couple of things.

    I've been a nurse for forty-five years. I've been around a lot of other healthcare professionals and a lot of patients. Doctors, nurses, technicians, are all human beings first, with all the failings of human beings. We have lousy days, feel stressed and rushed (especially in this COVID chaos), and sometimes develop a working environment in which patients aren't necessarily treated with kindness and respect. I've found that when I treat my own healthcare professionals with kindness and respect, it's usually reciprocated. Sometimes I can turn someone's lousy day around.

    As a cancer patient, fighting for my life, when I'm at my worst--scared to death, hyperaware of every tiny detail and nuance of someone's language and facial expression--it's hard for me to not overreact. A physician's plain language becomes insulting in my mind. I interpret a nurse's abruptness as being hurtfully directed at me. Later, when I'm calmer and can look back on an interaction, sometimes I can see the experience was colored by my fear and hypersensitivity.

    Please don't cut yourself off from diagnostic care that could save your life someday. Find another mammography center and another physician, if necessary. Just give it some thought and some time to settle.

  • Hi Radar,

    That super sucks! I feel your pain I hated the f*****ing clip. I am allergic to metals, or at least, I was a little, now I am a lot.

    It's all about consent.

    But........Don't be afraid of breast scans. Talk consent in every conversation and they will back off, and change hospitals if possible to get a better managed and staffed radiology department is my recommendation but DO YOUR SCANS!

    I can't wear earrings anymore unless they are really lightweight and pure silver and gold. That's because of this f**** clip. I mean if you have a metal allergy that's never been a big deal because you don't generally shove metal into your wounds., then the idiot radiologists shove metal in you without asking hey are you or anyone in your family sensitive to metals? Like earrings? They could offer say, plastic as an alternative, they have things for people allergic to rubber. Anyway, my metal allergy went through the roof!

    So, the most painful part of my metaplastic triple-negative breast cancer to this point other than when they wired me in the mammogram machine before surgery (but that was temporary pain) was the f**** clip. And...I think that's why I still have a big ball of scar tissue inside my breast around where the tumor and clip were that persists. That f***** clip in there for 3 weeks. I had that clip for 3 weeks! They don't take it out until surgery. You are right it's an asshole move doing that to a patient. And they scare you into it, which should be illegal. What they were just going to leave it there? I mean, how do they get it out if you don't end up needing surgery? A***holes. They're thinking, like oh well she's just a woman who cares? It's a fracking assembly-line mentality. They need to be sanctioned. You want a piece of my tumor take a piece. Don't leave a metal tag in there so you can find it again without a scanner. Losers.

    For next time, you INSIST on 3-D mammograms or MRIs or CATS due to your

    • dense breast tissue
    • history of irregular mammograms
    • metal allergy, or auto immune disorder, whatever it is, that makes biopsies troublesoem
    • post-traumatic stress from this experience
    • willingness to sue their asses for emotional distress


    3-d MAMMOS can mostly avoid the need for BIOPSIES. So fewer false alarms, A 3-d MAMMO is like a CAT and a MAMMO combined. It's a little extra radiation, but don't worry about the radiation, it's an acceptable dose. It's way better than cancer. You get cancer that you let grow you will then get so much radiation your skin will peel off and ...well it's a bad sunburn really But it doesn't GIVE you cancer even when they are shooting it at you on purpose to purposefully kill cells. But anyway, don't stress the extra radiation. That's not how we all got cancer on this site. I mean does anyone here think their cancer was from exposure to radiation from a mammogram or other medical scanning equipment? Anyone? I'm guessing the answer is no. I mean it's highly unlikely you'd be around such a poorly shielded source of radiation to give you cancer or other health concerns. The benefits far outweigh the risks, I'm a physicist you can trust me on this. And please nobody responds with a bunch of tables you found on Reddit or Facebook or even well-researched peer-reviewed stuff. I don't care that much I'm trying to help by making suggestions. You can do whatever you want.

    Remember that MAMMOS although archaic and stupidly painful enough to make women avoid them like the plague, are still the best way doctors have right now of doing assembly line personal MAPPING of womens' breasts. So they give a history of change of YOUR breast. So they save lives. You have earned yourself 3-D MAMMOS for life for free though I'd say after all this. So partake! Also, you can email that surgeon maybe and she can schedule them for you in the future. That's what my surgeon does. There's this idiot "survivorship" nurse coordinator who works in the ONCO where I did my surgery, who thinks all breast cancers and patients are the same and basically just there waiting to die so dont need quality care. She's an a**hole. I can barely say her name without saying a**hole afterward. She's condescending, controlling and she gaslights you if you disagree with her. She gaslights cancer patients when they are at their most vulnerable. She's awful. A real nurse Ratchet. So I go through my surgeon. Be sure to request any nurse Ratchett's you might have be immediately and forever removed from your care team though! Or technician ratchets, etc. If it's a doctor Ratchett just change, doctors. It's surprisingly easy to get rid of doctors but surprisingly difficult to get rid of nurses from your care team. My nurse Ratchett, somehow persisted on my team for 6 months after pissing me off, like the leech she is. Also if you live near a second hospital as I live near 5 different Kaisers, consider moving your MAMMOS to a different site, with better people, or to the more highly skilled MAMMO site which is usually where you have to go for the 3-Ds anyway.

    With my primary breast tumor. They could all tell it was cancer from the MAMMO. You could see it on their faces. They wouldn't say it but they knew. Then when they got to the ultrasound as they were doing the biopsy, it was just a formality, the biopsy. I mean, they could tell it was cancer and aggressive. They had to get it out surgically to fully biopsy it anyway. I owe my life to my surgeon. I will never be able to repay her, I bring her small gifts every time I see her. Photographs of me and my kids, stickers from the university I work at, etc. But I will never let a radiologist or anyone else, put a clip in me again. I mean if they are so concerned get a knife and take a look. Or if you are not sure use an MRI or a CAT. Wire it. Whatever. No more f**** clips. Not on my watch. Not with my consent, you do not have it!

    My surgeon is awesome and so is her whole TEAM every nurse on it! It only takes one bad medical or imaging ONCO nurse to ruin the place because the BAD ones NEVER seem to leave. ONCO isn't a fun place to work necessarily, and people who are good have more choices than people who suck. So sometimes you get the sucky people because no one else wants them and sometimes you get sucky people because no one else wants to stay in a depressing place like ONCO. Which makes it ripe as a dumping ground for nurse Ratchett's. I just started saying, are you a doctor? No? So then please get me someone who went to med school and has an MD after their name. You know someone who actually fears getting sued so would never act the way you are acting toward me right now. Or start bringing your phone and say you have chemo brain so you need to record the whole appointment so you don't forget. Anyone who objects, you should have them OFF your team. I read on the American Cancer Society's Chemo Brain info page that you can actually have chemo brain without ever having had chemo. (Gotta love the ACS!) So horrifying to find people like that working around vulnerable cancer patients. But like I said I love care providers and my surgeon and her WHOLE team, and my retired ONCO MD and the whole ONCO department at my other KAISER hospital are all great! I kept my Surgeon from my old Kaiser (always in person she has the magic hands) and my Breast Physical Therapist (we ZOOM its all tips and tricks and training) from my old Kaiser and everyone else is at the other Kaiser. Except Radiology which I now do at a 3rd Kaiser in the city of SF for their 3d MAMMOS.

    So sorry you went through all this. You have every right to be PISSED off. I hope you get it out soon. How dare they? Can you imagine? For me they were similarly insistent that I get something called a port. Not an issue for you because well you are all clear! Its for people who are going to do some or a lot of strong chemo that could burn the skin on your arms. But this is another procedure that's fine for most but not everyone. So, when they were like how about a port for chemo sure would make our lives easier, and better for you too! I was like uh-huh. Sure and when I want it out? Is this going to be the clip again? Do you do that same day or a three-week wait? And when it gets infected? And what if I don't tolerate chemo or my tumor type ends up being chemo-resistant? Both of which research suggested could happen especially the second one. My rare tumor cell type is an evolving field of medical research ya know? No, they didn't know. Will I just have to suck up the trauma of another procedure when I am at my maximum? because it's a box you check on your list? They are like that's not going to happen. Something was off. I couldn't quite put my finger on it, so I said no. I finally just said "Hey you listen to me...I am all procedured out at this time." " I do not consent at this time." And "I will let you know". what I wanted to say was no means no assholes. What I did say in the end repeatedly because they KEPT asking was "Let's start chemo the old-fashioned way, needle arm tube. ok?" "We can always put a port in later." We did start without. a port and in no time, my blood work came back bad, I couldn't walk and they halted it and we moved on to radiation. My cell type MpBC has STILL never been proven to respond to chemo, still, unlike most TNs. But they throw the full dose dense ACT at us anyway, just in case... I for one think that's folly. So, did not get the port, which may or not be metal too. .....Does anyone know? A***holes. Yay, I mean radiologists can absolutely be douchebags. It's pretty hit and miss down there. Some are cool. Alot of what they do can hurt, or be scary, so its natural to not like them. But some are also good and some are bad.

    I actually am not afraid of scans, I detest them but the pain fades quickly, and I think it's maybe because I found my tumor with my hands in the shower. Because of this though I am now afraid of touching my breasts very much in the shower or anywhere else. Mostly just the one that had the tumor though. Is it maybe possible that people who found their tumors through scans are similarly more fearful of scans? I'm just wondering.

    Happy Holidays everyone! Thanks again for sharing your story RADAR. A wise woman once said....... the stories we want to hear the least are the stories we need to hear the most.

    I wish you and yours and all the best and bravo for your courage, which is what it took to tell us all your story! Speaking out, the song of champions!

    - frak out

  • msradar
    msradar Member Posts: 13

    FrackingHateCancerMPBC Thank you for posting. I already get 3D mammos, I have been since the second mammo. I was in Atlanta and they called me all in a panic telling me they need to see me immediately for another set of mammos and ultrasound. But. it took 2 weeks to get an appnt. Tugging pulling, skin tears later and the ultrasound, then I had to wait another 3 days to be told all is ok. Get your annual exam. They never told me what was concerning.

    I moved to a different state. All was good they have done 3D since then. I a year or two years went by. Then this one that they have driven me crazy over.

    I will get my thermograms and ultrasounds...but nope on the mammos. I already told my surgeon I will never consent to chemo or radiation or surgery if its cancer. I don't want that. I buried a good friend from cancer who was 2 years younger than me. She left behind a son who was 7 years old when she died. Sad to say most of his memories of his mother are of her sick as a dog from chemo. She got a "cure" and less than a year later cancer came back and it was everywhere. She went on hospice and was dead 6 months later right before Thanksgiving a year ago.

    I watch two family members with cancer that they died. The treatment and the surgery were far worst than cancer. I have other health issues that I am battling with my immune system. The combo of this and my immune system is why I have decided no treatment. Not interested, no more mammos. The thermograms do tell me if my treatment for my immune issues is working.

    The surgeon is like talking to a good used car salesman. She knows the clip is. trigger for my immune system, but if she removes it, the surgery itself can also be a trigger. So either way I am screwed. She is trying to convince me to wait and see if it will coexist in my body. I told her well if they had not put it in there like I asked then we would all good.

    I'm working to get it out of my body so it can heal. then I will look at my options and decide how to move forward. There are 3 choices here for mammos, They are all about the same.

  • moth
    moth Member Posts: 3,293

    just as a point of information, 5 yr survival rates for localized breast cancer are currently in the high 90s % - assuming all prescribed treatments, which might include chemo rads and hormone therapy. (Of course some of us (like me) find ourselves on the shitty side of the odds. )

    When dying from cancer, one is also "sick as a dog" so if she had not had chemo she would likely have relapsed earlier and her son would still remember her being sick. Or he wouldn't remember as much as he'd have lost her earlier.

    Let's be careful to not downplay "letting nature take its course" with cancer.

    Everyone can refuse treatment of course but let's be clear that death from metastatic cancer or fungating tumors is not necessarily quick or peaceful or painless - though hospice and right to die legislation can make a huge difference.

  • alicebastable
    alicebastable Member Posts: 1,932

    When I had my biopsy, I mentioned that I was sensitive to metal and the radiologist did not use the clip. Same thing when I had a hip replacement, the surgeon used a non-metal replacement joint. All I had to do was bring it up and it's never been an issue.

    My sister howled about getting a mammogram and complained bitterly about the discomfort. I told her that since I'd had breast cancer, perhaps I was the wrong audience for her complaints.

    msradar, have you ever known anyone who died in a car accident? Then you'd refuse to drive a car after that, correct? I'd bet nearly every member of this forum knows people who have died from cancer. It makes most people MORE willing to be vigilant about testing, and getting the necessary treatment if cancer is found. Please don't blame the treatment for what the disease does.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    I've gone through chemo, radiation, and surgery. I have yet to be “sick as a dog". I haven’t had to be hospitalized overnight either. I’m sure I’m not the only one.

    The most pain I've had to endure so far was not from cancer. It was from severe sciatica. I refused back surgery and healed completely without it. So I do consider carefully any treatment I’m offered.

    I'm not certain I'd be alive now without the cancer treatment.


  • msradar
    msradar Member Posts: 13

    AliceBastable To answer your question yes. I was nearly killed in a car accident in 1984. I spend time in the trauma unit recovering. At the same time, there were friends of my mother whose only two children were severely injured in a car accident. The Son died and the daughter did survive but was severely affected.

    I was lucky, though I had a traumatic brain injury, facial injuries, broken pelvis, hip, flail chest, collapsed lung, and a ton of cuts bruises, and embedded glass that came out of my skin for the next 10 years. Then there was a year of plastic surgery to reconstruct the face. So yes I have had someone I know die in a car accident. I was a paramedic and confined space extraction specialist for 10 years. I had seen people die many times over. I worked in a burn unit, pediatric cardiac step-down unit and I have a disabled child. I had seen many people suffer and die. I have held many hands.

    I'm just pissed that you get put through all this for 80% benign rate. There needs to be a better way!! A better test that targets those that need it and leaves the rest of us alone.

    So now I have to have surgery to get this darn thing removed. But as a consolation prize, she will completely remove the benign fibroadenoma. But of curse now I have to have a wire placement to get all this done. Which when I questioned her she tells me wire placement has to be done before all surgeries. So why in the heck did I have to have this darn clip if you need to wire place anyway. UGH!!! The whole thing makes no sense and equates to a lot of pain and suffering for NOTHING!!!

    At the rate this is all moving the clip will force itself out the skin before the surgery even happens on the 17 January. Then I have to figure out the logistics to get home from the hospital. I hate this hospital and it far away, plus she only has afternoon OR time. which means driving back in the dark or at dusk I don't drive during this time of day to an eyesight issue. I am playing nice with her and playing the game as they say until I get what I want. Then after that, she can go kick rocks.

    I have an ultrasound tomorrow at our teaching hospital. they need to see where the clip in and such. they are happy to remove it. Its 20 mins walking time to the hospital. 10 mins or so driving. Depending on how fast this all moves I want this thing out NOW.

  • msradar
    msradar Member Posts: 13

    When I had my diagnostic mammo they tried to rush me in the same day for biopsy. Told them asked why and when they could not explain themselves other than " I needed it now". I refused and walked away. They scheduled another appnt 2 weeks later, I tried to cancel and they refused to allow me to cancel. I told them I was not doing it. They were begging me to show up. So I did. but I walked out again.

    Many times there is not rush for all this...no need for all this drama. But than again...there are some that are so anxious that they need to have the issue resolved now and now if its "CANCER".

    I took my time it took me 6 months to finally get my unwanted and unnecessary and needed biopsy and clip.



    20 hours ago - edited 13 hours ago by ParakeetsRule

    "If they are comfortable with you waiting for two months, maybe that's a good sign? When my mammogram showed cancer, they rushed me into an ultrasound and then a biopsy the same day, even though I didn't have an appointment for either one.

    If you don't want to wait, start calling around to see who has appointments. And check back regularly with your existing appointment office for cancellations. But keep in mind that lots and lots of people are being seen and screened now, because so many didn't go during 2020. It might be hard to find an immediate opening."

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Yes, we're anxious to find out for sure if we have cancer so we can start treatment and don't die young and unnecessarily. I don't appreciate your assumption that wanting answers quickly just means we're anxious and full of drama. It's easy for you to say when you are the lucky one here who doesn't have cancer.

    And I wasn't responding to you anyway. I was responding to Karen.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    Radar - You're posting on a breast cancer forum. We have cancer and don't need anymore of your non-cancer drama. You don't get to dismiss any of us as being too anxious.

  • serendipity09
    serendipity09 Member Posts: 769

    msradar - I guess I'm not understanding. If you've already made the decision that you are not going to go through any the of treatment, why are you frustrating yourself with the medical processes other than getting the clip removed? Have you been diagnosed? If not, do you want to know? Are you here to vent? Are you you looking for others that share the same experience? I'm not downplaying your reason for being here.

    I have many other health issues prior to having been diagnosed and I've been through chemo and radiation and several surgeries and a few more to come. I was diagnosed with a recurrence 10 months after my initial treatment ended. I'm currently in active treatment and I don't like it. The risk of complications were/are high, but the benefit of being alive outweighed the risks and the side effects, for me. Sure I have my bad days and good days, but, for me, and many of us on here, being alive and staying alive is the goal.

    You haven't been through treatment to say that you will suffer. You don't know what could happen and yes everyone reacts differently. We've (bco members) all "suffered" on different levels, some with severe ailments other than bc, but we've endured.

    I have had medical staff be short with me, but I've also had very positive experiences with medical providers. I know that right now in my state the medical professionals are over-worked due to staff shortages because of the pandemic. So I make it a point of asking my questions and getting my concerns across in a way where I'm not coming across as rude. I shoot straight from hip, but in a way where I don't appear demanding or rude, as they're doing the best the can. And I'm not saying that you have been rude.

    You've already made up your mind and that's ok. I wish you nothing but good luck and I hope that everything works out for you.


    edit: I just saw that you are not diagnosed, my bad for not seeing it earlier. I'm happy for you, but you are posting on a group with people who do have breast cancer and we are fighting and throwing everything at this beast so we can stay alive. Do what you have to do, but don't assume to know what we are feeling or experiencing. Again, good luck.

  • B-A-P
    B-A-P Member Posts: 409

    Yeah I gotta agree with many here. You’re in a forum of all women who have been diagnosed. Coming to vent about the medical system and how you despise mammos and clips and the the people treating you, is inappropriate. I WISH my medical providers would have been that pushy to get me seen because it was a lack of imaging for me that caused a huge delay in diagnosis for me. Had they even given me a mammo ti begin with , the ball would have been rolling a lot faster. Maybe I wouldn’t have been de novo stage four.

    It sounds like even if you did have breast cancer, you wouldn’t even do treatment (maybe I’m wrong it’s just the feeling I’m getting from you) because you witnessed your friend sick as a dog.

    I’ve been treated not so well by the medical team during diagnosis because I was 28 when I started the process and 30 when I got the diagnosis. But instead of writing everyone off , I asked for a different doctor. It almost sounds like maybe they were reciprocating the same attitude you were giving them ? I can’t tell for sure , but your post seems aggressive and I know that I don’t respond well to those who are aggressive with me and respond so much better when the experience is cordial on both sides. It’s hard to comment and I apologize sincerely if I have it all wrong , it’s just hard to fully get since most of us are not exactly sure what you were hoping to get out of posting ?

    Hopefully your problems are solved quickly and the clip removed soon so you can move on cancer free. Good luc