Don't want to have MRI - should I?

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Comments

  • beach2beach
    beach2beach Member Posts: 996
    edited January 2019

    When I was told I had BC i knew from the get go I would do a BMX. My surgeon did tell me if I opted for a lumpectomy I would need to have an breast MRI to check on the other breast also. I have no regrets doing a BMX. It's not for everyone to go that route, but was right for me.

    Glad you have taken the time to figure out what's best for you.


  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited January 2019

    BMX isn’t a test. It means bilateral mastectomy. Both breasts taken off.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Well -- I finally did it today --- the MRI is done. When I was first diagnosed (Nov 2) I started reading this board and was convinced that I would have a BMX so saw no need for the MRI. However, after two months of reading and thinking I've decided instead on a Lumpectomy ---therefore I had to have the MRI. The machine was nothing - open MRI and very wide - no fear there. However, I'm older and stiff - the position you have to lay in for 40 minutes was very uncomfortable. I took the 5 mg valium the doctor gave me, but it didn't help much. At least it kept me from being panic stricken, but I was still nervous. After about 5 minutes my friend in the room mistakenly pushed the red button on the wall that turned everything off -- then it took them another 10 minutes or so to get the machine going again. In total that meant about an hour of laying in that position. I almost decided to leave and come back another day, but they convinced me to stay. I am sooooo glad it is over. Now we'll know for sure that I can do the lumpectomy ---- needed to be sure there is no cancer in my other breast. Thanks to everyone for all your input --- it helped me get to this point.

  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    I had a lumpectomy and never had a MRI. In fact my MO never mentioned my needing to have one.

    Diane

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Diane --- probably because you had IDC (I guess). IDC shows up on mammogram and Ultra sound. I have ILD which usually doesn't show up on mammogram -- and sometimes not on ultrasound -- although mine did show on ultrasound. You're lucky you have IDC. I'll probably have the dreaded MRI yearly for the rest of my life.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited January 2019
    Just to be clear, my IDC palpable lump did not show up on mammogram or ultrasound.
  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Oh my gosh -- why not? I've often thought that they should let the public know that ILC usually doesn't show up --- but I didn't know the same thing can happen with an actual IDC lump. Most people think they are fine after the yearly mammogram.

  • SimoneRC
    SimoneRC Member Posts: 419
    edited January 2019

    My IDC did not show up on annual 3D Mammograms and also did not show up on 3D mammogram the day I was diagnosed. It did show on ultrasound. The lump, although palpable was not suspicious to any of the many doctors who felt it before and after diagnosis. Thank goodness my GYN took me seriously and sent me for additional imaging.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    Hi jessie,

    I was diagnosed with a mass in my right breast. My surgeon decided to send me for an MRI to make sure we weren't missing anything on the left side because I had very dense breast tissue. It detected a mass twice the size of the mass on the right side that was undetected by mammogram. When I had my MRI biopsy the doctor who did it told me that the IV dye that they use lights cancer cells up. So it's a very accurate test for detecting cancer cells. I too have degenerative disc disorder in my neck due to a whiplash wreck years ago. It was uncomfortable but not unbearable. It doesn't take that long to perform the test. You just have to breathe through it and go to your happy place. That's what I found with most of the tests & biopsies.

    Good luck!! Keep us updated!! Sending gentle hugs to you!!

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Oceanbum -- mine also may have been from an accident where I was hit from behind -- however, didn't have bad symptoms then. A year or so later I drug a stove hood behind me out from home depot. Well, that ruptured my cervical c5/c6 disc. I was out of work for a month. I did have the MRI last Monday because I want a lumpectomy. Didn't like it at all, but got through it. I guess with Lumpectomy I'll be having them regularly. I'm too afraid of anesthesia to have the BMX. Otherwise, I'd have the BMX in a minute -- with no reconstruction.

    SimonRC --- I still think that I have your kind of cancer. My pathology report said Mammary carcinoma - Lobular Like. That is not straight Lobular carcinoma. Lobular Like doesn't mean Lobular --- I'm so frustrated with my surgeon who insists this is just Lobular. I'm seeing an MO tomorrow --- I'll ask him.

  • SimoneRC
    SimoneRC Member Posts: 419
    edited January 2019

    jessie123,

    Hoping the MO appointment goes well and clarifies everything for you

  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    Thanks Jessie. That explains it. My sister had ILC. She has very dense breast’s. She had multiple scans and a MRI. Ugh.

    Diane

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    Jessie,

    I have to have annual MRI's if understand them correctly. I'm due for the first one in Aug. I've not had one since my BMX so I don't really know what to expect. Should be different than the last one, I'm sure.

    I really didn't have any pain at the time of my accident either. I had it x-rayed and they said it was fine. I didn't know until many years later when I had a frozen shoulder. During the testing and physical therapy for that they found the damage to my neck. I had migraines over the years starting a few years after the wreck. And apparently that was the cause of my migraines. I never put it together because they told me my neck was fine!!

  • pupmom
    pupmom Member Posts: 5,068
    edited January 2019

    Jessie, I'm surprised your friend was allowed to stay in the room.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2019

    I was in the room with two of my children when they had MRI's.

  • MCBaker
    MCBaker Member Posts: 1,555
    edited January 2019

    My mammo and ultrasound and biopsy indicated 3cm of grade 3. It did not matter to me, because I was disgusted with that breast (I was previously irritated with the professionals' concern over nothing) and wanted it cut off. The MRI revealed 10.5cm of dcis, and a perfectly normal lefty. If you know anything about statistics. there has to be invasive somewhere in such a large growth. I am now beginning to wonder if they "found" it based on statistics, rather than actually looking at it through a microscope.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Got my MRI results today -- MCBaker - it kind of sounds like yours. My tumor is 1.5 by 2.5 cm -BUT there is a 7.5 line next to it. My MO (that I just met today) said that the 7.5 cm line is DCIS. He originally came into the office saying I had Lobular -- just like the surgeon insisted I had. However, he listened to me --- my question was "does this hospital pathologist call infiltrating lobular carcinoma Mammary carcinoma with lobular features???? That doesn't sound like lobular to me. The Oncologist took another look and when he saw the DCIS and then noticed the path report specimen did not stain for E-cadien (sp) he changed the diagnosis to Ductal. However, I don't agree with that . I think that I have mixed carcinoma which is a lobular and ductal combo. The lobular is evolving from ductal cells. The most important thing I learned is that he does not recommend I have a lumpectomy -- said they will have a hard time getting clear margins and also would have to take a large chunk out of my breast. So the MRI made my decision for me and I am thankful that I had it.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    jessie, I had a mastectomy which I really, really didn't want. But I was so happy after my DIEP it came out really fabulous, much better than the photos I saw online. I don't have alot of feeling but it keeps improving. It was done 4 months after my mastectomy at a teaching hospital. Also I didn't require any radiation which was good.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    meow13 --- you are right - I am glad that I don't have to have radiation. I'm mad at my breast and don't want anymore breast (-: No really, I am older and a widow. If I could get new breast without anesthesia I would do it, but I'm too afraid of anesthesia. I still wish I could see pictures of what chests look like after a mastectomy. Maybe, this site doesn't have a section like that because they all look different. It would just be nice to have an idea. I need to go to the breast less section and ask them about scars and things like that.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    jessie, my surgury was 10 hours my recovery was very easy. I was told I was one of the best outcomes I really was pretty comfortable not much swelling but the new breast was rock hard for weeks. It healed so nicely. They also did a lift on the real side. I was so afraid I never had any surgery like this in my life. I wanted to look just like my old self. It helped that I was in good physical shape.

    I totally understand not wanting to do reconstruction surgery, I took 2 months off of work. I could have gone back sooner but I wanted the rest after dealing with everything. For me the emotional pain was the worst in this business.

  • MoonGirlJess
    MoonGirlJess Member Posts: 267
    edited January 2019

    I had a mastectomy in June 2018. I can PM you my pic if you want.

    I’m having mastectomy #2 in June of this year.

    Best wishes to you.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Moongirljess Thank you so much for your offer. If you have a picture that will be great. I may not be in so much shock if I know in advance what I should expect. You have really been through it. - has the ILC transferred to your other breast -- is that why you're having a second mastectomy? I have large breasts so having just one breast removed is probably not a good choice " looks wise" for me. However, the surgery will be half as long and I'm hoping recuperation will be easier. I'm so scared of anesthesia. Thanks again.

  • Cin17
    Cin17 Member Posts: 51
    edited February 2019

    jessie123, same for me, I took 5mg of valium and it seemed to do little good. I was terrified and the positioning was very uncomfortable. Additionally my teeth began chattering and I had to clamp my jaw shut to keep them still. My surgeon insisted on an MRI so that she'd know what she was dealing with. I'm thankful I did it too.

  • jessie123
    jessie123 Member Posts: 532
    edited February 2019

    Cin17 --- you made me laugh -- that's an emotion I have lost lately! Did they find anything extra on your MRI? They found a large line of DCIS on mine, but I'm still going for the lumpectomy first. Of course that probably means I'll have to have more MRIs - What a horrible thought (-:

  • Snickersmom
    Snickersmom Member Posts: 926
    edited February 2019

    Oceanbum - why do you have an MRI every year? I had a BMX in May, 2017 and then I had an MRI in July, 2018. But that was only because my MO wanted to make sure that a small "pocket" was tissue. And it was. But I don't think they will do any more MRIs unless he feels something. I do think we all should be able to have an MRI or PET scan every year, but the insurance companies won't pay for them. So I guess we just sit and wait for the other shoe to fall.

    Jessie - I wondered about the MRI before my BMX, too, but didn't question my team. As for what you will look like - I did not have reconstruction, so my chest is flat but my sternum/breastbone is still raised. So the flat areas are just where my breasts used to be. I guess I mostly look like a boy with a Buddha belly! Truthfully, not one person has ever even noticed.

  • jessie123
    jessie123 Member Posts: 532
    edited February 2019

    Snickersmom --- I really considered a BMX - I'm older and a widow so I wasn't concerned about that part. I am so afraid of surgery and since I live alone I was worried about recuperation also. Finally someone on this board said "start small and then go big if need be." I've been reading for almost 4 months and just lately decided on a Lumpectomy which is scheduled for Thursday. I'll be home in a couple of hours, but will continue to need screening. It's so weird because it's like I'm not afraid of the cancer --- just the surgery. Maybe because everyone seems to do fine these days. If I had straight ILC I would consider a BMX because of the tendency of it to move to the other breast. I have two friends who both had lobular and BMX's - neither are screened with MRI or mamo --- just the blood test and doctor exams. Oh, I always question doctors and this breast cancer problem has exhausted me with questions. The reason is my husband at 58 yrs old was diagnosed with Myeloma and our local hospital wanted to do stem cell transplants --- I instead took him to a specialized Myeloma clinic in ArK and they said he did not have Myeloma --- he would have gone through a stem cell transplant for nothing. He died 4 months later with "unknown primary" -- local doctors could not diagnose the cancer. After my surgery I've asked my doctor to send my pathology to an NCI approved facility for a second opinion. They are considering MD Anderson . I am tickled.

  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2019

    I never had a MRI and I am 7 years post DX. My MO never saw the need. I had IDC, Stage 1b, Grade 1. I had a lumpectomy, 33 radiation treatments and Tamoxifen for 5 years. So far, so good

    Diane

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