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Refusing a biopsy

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  • minustwo
    minustwo Member Posts: 13,129
    edited January 2020
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    Hotwing - I don't remember where you are. You might try a second opinion with an NCI cancer center.

    Do you have a psychiatrist who can talk to your other docs? Sometimes doc to doc works better.

    You might also talk to someone about what used to be called "laughing gas" that dentists still use for wisdom teeth & some impacted removals. That would mean a mask over your face - as would some other anesthesias.

  • Hotwing7
    Hotwing7 Member Posts: 23
    edited January 2020
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    I am JUST about ok for am IV - still a blubbering wreck requiring ativan but for that I know it's a means to an end, but the doctor has said thats a no go for for the wire guided portion. I feel like I'm asking someone for a million dollars, and I get it that most people sail through this, I just physically cant. Even the thought of having cancer pails into the background when having to have this biopsy done. I'm in Alberta Canada x

  • Hotwing7
    Hotwing7 Member Posts: 23
    edited January 2020
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    Yes I requested laughing gas today they said no. I must be asking for the impossible.

  • HeartShapedBox
    HeartShapedBox Member Posts: 117
    edited January 2020
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    Double or triple up on the ativan as needed, and have someone with you who can drive you there, hold your hand, tell you stories, and basically just distract you the entire time (could be a friend or a good nurse). Ear phones with soothing music or a funny podcast, a sleep mask, anything to distract you and keep you from fixating on the procedure itself!

    I totally understand your fears. Before all of this I had such bad medical procedure anxiety and needle phobia, I'd avoid Dr and dentist visits for years, and cry and/or faint at blood draws- even the tiny finger prick kind! It sounds hard to hear I know, but there's a lot to be said about exposure therapy and desensitization, it works! I encourage you to check out EMDR therapy (Eye movement desensitization and reprocessing therapy) to help with that.

    8 months ago I cried and almost passed out at my fist pre-chemo lab work. Now I don't even need to take an ativan before blood draws or chemo, which I never thought would be possible.

  • godisone
    godisone Member Posts: 30
    edited January 2020
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    HeartShaped… and overcoming your fears is really inspirational. This headphones things i used to apply for my dentist visit where i would use my ipods with a audiobook to distract myself. It's no doubt a great idea.

  • Hotwing7
    Hotwing7 Member Posts: 23
    edited January 2020
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    Yes I tried all of that today and none of it worked - all of the distractions flew out of the window once I felt the doc within 2 ft - i felt like the runaway bride

  • Hotwing7
    Hotwing7 Member Posts: 23
    edited January 2020
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    thanks for that I did ask if there was anything else I could have and they said no, its ativan or nothing. Suffice to say I am on the hunt for somewhere else to have my procedure done though once again I really appreciate everyone's input - I just wish I weren't like this.

    Problem is I get so belligerent and nasty when I'm scared that my personality changes 100% - even I wouldnt want to help me lol

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited January 2020
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    My son had needle phobia as a kid. When he was a sixth-grader he crashed his mountain bike and had to get stitches. It was a big problem, actually--I finally said, "look, I know you're freaked out but there's no choice here and you're too big for me to hold you down. You're going to have to suck it up and get a grip." And he did.

    He's now a radiologist.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited January 2020
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    Clearly it's time to consult someone in the behavioral sciences, probably a psychiatrist. As other have said, having a medical professional to advocate for you AND help you figure out/get past this phobia would be a good step.

    Have you considered hypnosis?

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited January 2020
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    I understand that the radiology department has denied you, but have you asked your breast surgeon about placing the wires while you are under anesthesia? Unlike a radiologist, he or she is accustomed to patients who are anesthetized. Failing that, I believe a psychiatrist or maybe even your primary care can write an order for sedation. Have you talked with either?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,858
    edited January 2020
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    Hotwing,

    I’ve been reading this thread with interest and am trying to understand why your docs can’t offer something just a bit more in terms of sedation. It seems clear to me that you understand the potential risks of deeper levels of sedation. Why isn’t it possible for you to get more sedation if you have been given fully informed consent? Years ago, I walked out on a a needle biopsy that they wanted to do without any numbing. I then found a doctor who prescribed Ativan and numbed the area locally. I hate every minute of needles and poking though not to the same extent as you do but I definitely feel you. I think it’s cruel to deny heavier sedation if the patient is fully informed of the risks and if that higher level of sedation isn’t contraindicated by the procedure

  • djmammo
    djmammo Member Posts: 1,003
    edited January 2020
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    A quick note about sedation and location

    Most of the outpatient facilities I have worked in were not allowed to administer IV sedation since there is no code team (rapid response team) available. Some do not even have nurses. The last location I practiced was attached to the hospital but since that part of the building was considered 'outpatient' we could only use local and have the patient bring oral meds if they wanted. If conscious sedation or other anesthetic method is used that requires an IV plus cardiopulmonary monitoring, it would have had to have been performed in the main xray dept in the hospital where RN's and others were available.

    The only outpatient facilities where I have see IV opioids or propofol given, employed at least one anesthesiologist, something outpatient breast centers do not have.

  • flashlight
    flashlight Member Posts: 311
    edited January 2020
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    Hotwing7, Did they give you a script for Ativan 0.5mg? You would probably need to take 5 to 6mg to feel sedated. Ask your pharmacist. You would probably sleep for 24 hours.

  • flashlight
    flashlight Member Posts: 311
    edited January 2020
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    Also ask your pharmacist when you should take it prior to the procedure. If it is a tablet the peak effect is about 2 hours after taking it and it last about 12 hours before decreasing in concentration. I think that is why some doctors say to take half the night before surgery and the other half in the morning prior to surgery to relax you. Hopefully you can get some help from your pharmacist about the dosage if your doctor didn't provide this information. Good Luck to you!!

  • calfam04
    calfam04 Member Posts: 3
    edited January 2020
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    I noticed a lump 8 months after a clear mammography. Ultrasound reported a 2 cm. tumor, and the radiologist said I needed a biopsy immediately. After much research, I was hesitant to have the tumor disturbed as there is clearly evidence that that can spread the cancer. I have all of the research that proves it. Still, I thought with the best type of vaccum assisted needle, it could be done with just one insertion. The radiologist pressured me till I agreed. I was shocked to find that she did eight insertions that felt like a nail gun! She used a 14 gauge needle. It was extremely invasive to my tissues. I am so sorry to have agreed to it. My sister was also diagnosed 3 years ago, and her tumor was smaller. She did the biopsy, followed 6 weeks later with a lumpectomy and radiation. She now has breast cancer in her spine, lungs, liver, bones, and lymph nodes. I feel certain the biopsy allowed the seeding of her tumor to migrate throughout her body in those first six weeks. I am terrified that I made the same mistake, and will be advised to go through all of what she did for NOTHING!

    Why are they insisting that these tumor-punching biopsies be done? It is outrageous! They say they need to know to prepare for treating your specific cancer, but I'd wait for the tumor to be removed surgically, and then they can analyze what it is. Don't let them pressure you if you feel like I do. I am SO regretting that first step in addressing my breast cancer.


  • minustwo
    minustwo Member Posts: 13,129
    edited January 2020
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    calf - there are any number of variations of BC that need to have chemo BEFORE surgery. Without a biopsy, it would be impossible to plan or stage.

    Yes, it's possible for a micromet to get loose and spread, but not likely in 6 weeks. If your sister's cancer had been critical, they would likely have done chemo immediately. Sorry for her Stage IV diagnosis and that you''re having to join us.

    You don't say where you are located, but since you're concerned it's probably a good idea to go to an NCI certified hospital for a second opinion.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,858
    edited January 2020
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    calf,

    I am so sorry to hear about your sister. As minus two mentioned, it is unlikely that seeding from a biopsy caused such extensive mets only 6 weeks. Seeding has been a point of discussion for many years and evidence is not overwhelming. Here is an article from bco:

    https://community.breastcancer.org/blog/what-my-patients-are-asking-can-getting-a-biopsy-spread-the-cancer/

    I am not saying seeding is impossible, but the jury may still be out.

  • calfam04
    calfam04 Member Posts: 3
    edited January 2020
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    My sister's mets was not diagnosed for three years. From what I understand, a cancer cell can make it to the lymph node and into the blood within just a few days. The cells can lay dormant for any length of time before starting to grow. The post-biopsy seeding is just the start.

    Meanwhile, I am proactively trying to boost my immune system and kill the cells while I WAIT for the biopsy results which are taking TOO LONG! This includes daily aspirin, using heat from the jacuzzi, shower, and heating pad as much as possible, taking immune system supplements I have read may help.

    I feel like this whole battle will not just be with cancer, but also the medical machine.

    Lisa

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2020
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    "The post-biopsy seeding is just the start"

    Nope. Biopsies are done after the cancer has developed. In most cases, cancer has been present in the breast for years before it becomes large enough to be detected. So the biopsy is not done anywhere near the start of the process. However if someone is going to develop mets, the origins of that most likely did happen near the start.

    Lisa, if you do your research, you will learn that even tiny breast cancers in their earliest stage of development can shed cells into the circulation. These breast cancer cells move into the body and can remain dormant and undetectable for years or even decades. This is how mets develops - in most cases, the cells left the breast well before the patient knew she had breast cancer, and well before she had a biopsy. Yes, biopsies can cause seeding, but the research on this suggests that seeding leading to the development of mets is rare. It's certainly not what causes mets in the vast majority of cases.

  • djmammo
    djmammo Member Posts: 1,003
    edited January 2020
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    Here is a nice explanation of the above concepts from: https://oregon.providence.org/forms-and-information/a/ask-an-expert-breast-cancer-growth-rate/

    Here is an excerpt from the above:

    "Like a lot of cancers, breast cancer grows by simple cell division. It begins as one malignant cell, which then divides and becomes two bad cells, which divide again and become four bad cells, and so on. Breast cancer has to divide 30 times before it can be felt. Up to the 28th cell division, neither you nor your doctor can detect it by hand."

    "With most breast cancers, each division takes one to two months, so by the time you can feel a cancerous lump, the cancer has been in your body for two to five years. It can certainly seem like a lump appeared out of nowhere – especially if you or your doctor have recently examined your breasts and not felt anything suspicious – but in reality, the cancer has simply doubled that one last time necessary to be noticeable. By the time you can feel it, a breast tumor is usually a little more than one-half inch in size – about a third the size of a golf ball. It has also been in your body long enough to have had a chance to spread"

  • minustwo
    minustwo Member Posts: 13,129
    edited January 2020
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    djmammo - yes, that is a great explanation. Thanks for posting.

  • Leawoodgal
    Leawoodgal Member Posts: 13
    edited January 2020
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    That quote “you don’t have to be brave you just have to show up” helped me a year ago in fact I have it saved on my messageswhen I was diagnosed and my biggest fear was the being under general anesthesia. Here I am a year later and just had my first mammogram since surgery and all is well!!


    Leawoodgal

  • trishyla
    trishyla Member Posts: 698
    edited January 2020
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    Congratulations, Leawoodgal! That's such a big milestone. Time for a celebration.

    Best wishes for continued good health.

    Trish

  • blah333
    blah333 Member Posts: 68
    edited January 2020
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    calfam04 -- breast cancer is a much worse invasion to your tissues than biopsy, though I know the "needle" definitely feels more violating. It is absolutely normal to take multiple samples. I just had a biopsy today of a bump which I was concerned might be a recurrence. They took 3 samples. That meant going into my skin 4 times (they also put a clip in place). One sample is not enough of a confirmation. They could slightly miss the site or grab muscle tissue, or a part of your lesion/calcifications that doesn't show up as negative. Then you'd have to come in for another biopsy. I'm sorry your sister is Stage IV, that must really be a heavy influence on your worry for yourself as well. It is good to give your body tools to heal and have a strong immune system, and I do also think we need to scrutinze the healthcare system and make sure our doctors are on the ball. But I would not get paranoid about biopsy needle seeding.


    To the OP - I had a biopsy today and while it can feel a little tedious of them trying to get to the proper location, it was surprisingly no pain, and hours later I feel no discomfort whatsoever. (I have had more uncomfortable ones though).. They now think it is just a complex or complicated cyst, but to me the peace of mind is worth it.

  • Leawoodgal
    Leawoodgal Member Posts: 13
    edited January 2020
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    Trishyla


    Thank you!!! I plan on a celebration had surgery on Feb 4 day before my birthday so didn't do much celebrating last year.

    Did extremely well during radiation and have had no side effects from armidex.

    Continued good heath to you!

    Leawoodgal

  • edj3
    edj3 Member Posts: 1,579
    edited January 2020
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    Leawoodgal, any chance that Leawood refers to the one in Kansas? That's where I am!

  • Leawoodgal
    Leawoodgal Member Posts: 13
    edited January 2020
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    edj3

    Yes!!! Go Chiefs!


    Leawoodgal

  • djmammo
    djmammo Member Posts: 1,003
    edited January 2020
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    Lived in Leawood for two years. Kids went to Barstow.

  • edj3
    edj3 Member Posts: 1,579
    edited January 2020
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    More reasons to like you :)