Don't want to have MRI - should I?

jessie123

I've had the bone scan, blood work, and biopsy -- the cancer was found with ultrasound. Today I'm supposed to have the MRI, but I don't want it. I've basically decided on a BMX so why do I need the MRI and that contrast agent that is so controversial. It seems we should do the ultrasound on the other half of my left breast and my whole right breast first --- if it shows up then my need for a BMX is verified, If it doesn't show up and I decide to consider a lumpectomy then we can do the MRI. What do you think? Do I really need an MRI if I'm going to have both breast removed anyway?? This is all such a bad dream.

ksusan

You get to decide, of course. MRI found my positive lymph node, which didn't appear on any other imaging.

Shellsatthebeach

You could always wait to see what they stage you after surgery to make that decision. The only need would be to see if it spread any place else. For instance, I was staged a late stage 3 so they really needed to do more testing to make sure it didn't spread. If you are caught early, you probably have not much to be worried about as far as spread.

pupmom

Won't the docs do a sentinel node test? This identifies positive nodes. I had MRI and ultrasound before surgery. Neither found my two nodes with micromets. So, even with an MRI one can't be sure about the nodes until surgery.

That said, I am one who usually follows doctors' orders. If I don't agree I get a second opinion. Good luck jessie123!

farmerlucy

Your thought process sounds reasonable but I would want to go over it with my doctor to discover their reasoning, You are very wise to be your own best advocate.

jessie123

Yes, my appointment with her is next Friday and if she gives me a good reason to have the MRI I will have it. The MRI is just one of a group of tests she ordered at my first appointment. I'm sure the MRI would need to be done if I wanted a lumpectomy, but after being on this board for the last month or so I've learned enough to know that I want the BMX. Actually I don't want anything, but I know that I want this over and NO MORE testing which would be necessary with a lumpectomy.

When I said MRI - I meant breast MRI not general MRI. I wouldn't think the breast MRI would show metastasis --- would it? She did the bone scan for that.

Shellsatthebeach

You are correct.  A breast MRI would not show metastasis.  I misunderstood and thought you meant a full body MRI.

Luckynumber47

If an MRI of the healthy breast found more cancer the dr would know to do a sentinel node biopsy on that side as well. If they assume no cancer on that side but then find something in the pathology after surgery it’s too late to go back and check the sentinel nodes

Dani444

Jessie- what type of cancer were you diagnosed with? With mine being lobular they wanted the MRI to confirm the size of my cancer and confirm the other breast was disease free. Lobular is a little more tricky to find on mammo and US. It really does suck that we have to make any of these decisions, especially in such a stressful time! Do you have a nurse navigator you could call or email with questions?

jessie123

First I was diagnosed with Lobular --- found via ultrasound. Then I got a second opinion at a teaching hospital and the diagnosis changed to mammary which is lobular LIKE , but not straight lobular. It's supposed to have a pretty good prognosis -- accounts for only 3 to 5 percent of breast cancers. Of course I can find almost no information on it. I though straight Lobular was difficult to research -- this is even worse. I'm thinking they should at least do an ultrasound on the other half left breast and my right breast first. Then if the doctor insists I can have the MRI> I don't think there is any hurry since the Ki-67 was low. I'm so tired of thinking and learning about cancer, but I have to keep going until this is all settled.

pupmom

Jessie, I was first diagnosed with lobular through biopsy. After surgery it changed to IDC, with lobular features. Anyway, because lobular tends to move to the other breast, I had an MRI after biopsy to rule that out. Maybe that's why they're suggesting an MRI.

MDRR

Agreed - be your own advocate. I think it's a reasonable thing to ask why certain tests are needed. It may be that the surgeon gains information from this test to inform her/him before surgery. I know my surgeon had a breast MRI done; just more information to consider during our pre-surgery discussion.

Good luck to you!

Veeder14

I've had several breast MRI's~while it wasn't pleasant at least the test is very accurate. The surgeon may want to confirm that it's all ok on the other breast or not and direct how the surgery is done. I hope you don't have cancer on the other side.

jessie123

I need to be honest -- it's not really that I am afraid of the MRI. The problem I guess is my pride. I'm afraid that I will be a problem patient and may not even be able to finish it because I'll have to lay on my stomach. I ruptured a disc in my cervical spine when I was in my 40's. As I've aged I've probably developed arthritis there or maybe more degeneration and I haven't been able to lay on my stomach since then. When I did the quick bone scan that only lasted 15 minutes on my back my neck started to spasm and shake. I've had two MRI's in my life and although not fun I got through them fine. I think I'm just embarrassed that I will fail. Luckily I've never really been sick and when I've had a problem I have always been able to figure out how to fix the problem. It doesn't look like I'll be able to fix this cancer problem without going through a number of scary medical treatments. I'll probably end up having the MRI-- maybe they will let me stop by and practice first without an appointment. (-: SOOO embarrassing!!

MDRR

jessie123

they are very experienced and many people have difficulty with MRIs (not just breast MRIs). It might be a good idea to talk to them via phone call or stopping in to let the technicians know what's up and I suspect they could give you some helpful advice prior to the procedure. It would also let them know what your issues are ahead of time. Don't be embarrassed -- they will get you through the MRI!

DiagnosisDisruption

I hung up on the nurse navigator when she told me I needed an MRI. Literally. Like a petulant child, hung up on her. I was mammogrammed, mammogrammed again, ultrasounded, MRI, ultrasound again (my breast is not THAT big) and MRI biopsy. Seemed like they wanted to do something every other day, and only the mammograms and first ultrasound caught anything real. The MRI just gave them more "stuff" to look for that turned out to be nothing.

Get a Valium. Had the nurse not mentioned that, I never would have gone in. Besides, for a breast MRI, you are on your stomach and you don't know you are in a tube. It's (only) about 45 minutes. My lumbar/cervical was 2.5 hours - on my back. Ugg.

Oh, and from a complete control freak's point of view, my cancer is not my problem. It's for the doctors and oncologist and surgeons and radiation oncologist to fix. I just need to show up and take care of my body. I can't fix this. Therefore I decided it wasn't my problem to fix. It took my controllness out of the equation.

Veeder14

Jessie123

I've got herniated discs in my back and neck and never go on my stomach except for the MRI's I've had to get during the last two years with cancer treatment. It's definitely not a good position being on my stomach. However, I did take some muscle relaxant which helped the pain and to lay still. I think you will do fine. Before I had my PET/Ct scan I set up a time to go see the machine. I wanted to see how much space there was, etc., that helped ease my mind. Call ahead and let the radiology staff know you have concerns so they can talk with you about it.

gb2115

I was prescribed Ativan for my MRIs. It really helped. Maybe something like that would make you sleepy and help it be bearable!

AliceBastable

I've got arthritis in my back, my neck, shoulders, knees, you name it. I managed the MRI, but it was a pretty miserable experience. The closed tube doesn't bother me, but that face-down position for such a long time did. If I ever need another one, I will request a tranquilizer first, and/or take a prescription pain pill. And make sure the technician gives me enough time to wiggle into a comfortable (or least uncomfortable) position - I think I was off an inch or two. Getting off the damn thing was hardest for me since I can't get on to my knees - I just wanted to roll over and fall off, and let them squeegee me off the floor. But I survived it, and so will you.

jessie123

Alice - you made me laugh so hard --- that is EXACTLY how I imagined it would be. Nope, I'm not doing it unless they make me.

FarAwayToo

MRI caught DCIS in my "good" breast. Mammo didn't show it. I needed to have MRI guided biopsy to that breast. I ended up having quite a few MRIs, because I was on the study, and had them as part of monitoring my progress while on neoadjuvant chemo. Regular MRIs were no big deal, but the with biopsy was awful. Lying for 35 minutes with a bad neck is no joke, so I totally understand your hesitation. But the techs at my facility were wonderful, and always made me as comfortable as possible.

As Luckynumber said, since DCIS was confirmed, I ended up having sentinel lymph node biopsy on both sides, even though surgeon told me she wasn't expecting to find any cancerous ones (the DCIS was low grade, but there is always a chance that there could be some invasive cancer mixed in).

Since you've already decided on BMX, I think the only reason to have MRI is for that off-chance there is something in the other breast, so that they can do SLB. For me, knowing that my "good" breast wasn't so good after all, immediately solidified my decision to have BMX.

Peregrinelady

I told the techs beforehand about my claustrophobia and they gave me drugs that made it bearable. I hardly remembered it.

Skwashie

Hi jessie123, the sense of being poked, prodded and screened persists a bit at the start of this journey. At the same time you should assess all risks you are prepared to take and think these through; through time. We have all said yes and no at different stages and being accountable for our decisions is often the hardest thing we will do. I have declined the bone density test as I don't feel this is helpful to my recovery. Also, I got very paranoid about my healthy breast and requested lots of additional tests including a core-biopsy on a perceived lump. I wanted to be absolutely certain.

From my reading of other women (and some men) with BC the MRI also provides additional information on the size of the tumour. Ultrasound and MRI result in quite different sizings and this will ultimately provide your surgeon with information on how wide an excision should be made; in the case of a lumpectomy.

Also, BC surgeons are reluctant to remove a healthy breast, well in Australia, that is.

jessie123

I'm going to see what the doctor recommends next week. If she recommends a lumpectomy then I know I will have to do the MRI, but I don't understand why I need it if I decide on both breast being removed. Can't she go ahead at that time and do the sentinel node biopsy on the good side?? When I told her on the phone last week that I wasn't sure I could do the MRI she said "don't worry - we'll work around that" She gave me 5mg Valium, but the morning of the MRI I was so nervous I knew I wouldn't be going so saved the drug for another time. In the U.S. surgeons remove good breast all the time - I think the patient makes that call. You mentioned bone density testing. My surgeon didn't order it, but I am going to request it. If you will be taking the drug that starts with an "A" instead of tamoxifen then there is a risk of Osteoporosis. I was given 3 months of a estrogen lowering drug when I was in my 30's due to fibroid tumors. In my early 40's I read the side effects of that drug -- bone loss - so had an early bone density. My hip was minus 2.7 which was osteoporosis and unheard of in a woman my age. It took until I was in my 50's before the bone recovered - but I was still in the osteopenia range. So, since I will be on the "A" drug I want a baseline to monitor that closely. The bone density test is real fast and easy.

bella2013

Jesse123, the breast MRI provides a wealth of information on both breasts. It’s possible another tumor is hiding in your infected breast and the mammo and US didn’t find it. Your surgeon wants to know exactly the size and location of your tumor before surgery.

My gyno measured my lump at 5 cm when he found it. The diagnostic mammo, us, and biopsy measured it at 1.2 cm. The breast mri measured it at 5 cm. That was important information because i had to prepare myself for the end result of my lumpectomy having such a large portion of my breast removed.

Jesse, of all the tests and diagnostics you have endured, the breast mri is painless. Laying on the table is uncomfortable but ask your doctor to prescribe a Valium. You will have a nice nap and not remember the procedure. Then you can go home and sleep it off. The techs are wonderful about positioning you on the table and assisting you off the table. No need to be embarrassed.

You can do this 👍💪🏻

Legomaster225

If you can get the BS and your insurance to cover a Sentinel node testing on the clean breast I highly recommend doing so. I did not and I wish that I had. Pathologist found a 9mm tumor after my BMX that did not show up on mammogram/ultrasounds/MRI. Now my only option is full auxiliary lymph node removal to determine any lymph node involvement. We have decided the risks outweigh the benefits at this point but I am getting auxiliary ultrasound in that side annually. Decided on no radiation on that side either. If I had to do it over again I would insist on sentinel node testing on both sides. Hope my experience helps someone.

Meow13

lobular cancer does NOT tend to move to the other breast. The only information I have seen is roughly 1/3rd of the lobular cancer diagnosed show cancer in both breasts.

Skwashie

Hi jessie123. The bone density test is for, as you say, a baseline before taking aromatase inhibitors. Even though I am on Tamoxifen I went into menopause during radiotherapy (in fact I went from pre to post in a 6 week period with blood tests confirming this).

As I had experienced so much prodding I couldn't take a bone density test at this time. I will also change out Tamoxifen for an AI in April as I also didn't want my body having so many different invasions in such a short period of time. It seems like a bone density test is an absolute must for you and that's a good call. It's also important to highlight that you are in fact taking responsibility for your body by making these decisions. We all know what is best for us and the more information we have the better we feel about any risks we do or don't take.

Having an open relationship with your medical team is critical. Staying informed and being able to discuss your treatment is optimum for your recovery; also, clinicians like it when we can have a more in-depth conversation as they have spent their professional lives thinking about it. Each case teaches them something new. We need to help their practice too

Good luck with your conversations with your medical team and what you will eventually decide for yourself. We each have our own nuanced journey and where one thing feels right for one of us it may be completely wrong for another. Wishing you good healing and gentleness.

Toyamjj

Hi! Very new here, diagnosed yesterday but still waiting for entire pathology report to come in. I have a MRI scheduled but I just saw where you said you didn’t want one and instead want a BMX test? What is that and I’m wondering why it wasn’t offered to me

WC3

In my case an MRI would have caught my cancer when it was missed by thr ultrasound the first time. After I was diagnosed, I had neoadjuvant chemotherapy and MRIs were used to monitor any progress.

jessie123

Toyamjj

I don't remember talking about a BMX test. Can you write what I said so that I can explain what I meant . Deciding between a BMX and lumpectomy has been so very hard. One thing I have learned is not to let your doctors rush you into anything unless they consider your case an emergency. It's been two months since I was diagnosed and I'm glad I've had the time to think about what I want. Also, don't forget to get a second opinion.