MRI RESULTS ZERO

SavedbyGrace1972

Hello Everyone

Hoping you all had a wonderful Christmas. Well on Christmas morning my MRI bilateral breast results were put into my chart. Yep I read them. The score/result is zero. That's like a score radiologist try not to give at all cost from what I've read. Anyway, it also said that a mass is now present in my right breast that was not seen on my mammogram back in May 2017.

The recommendation is to biopsy/us and MRI guided biopsy the right breast and continue plan of care for the known cancer in the left breast which has invaded health tissue.

My appointment with my surgical oncologist isn't until 1/8/18 which by the way, someone I'm completely not comfortable with at all! But I figured I would get the ball rolling with her then get another opinion and search for someone o felt like I could trust.

Is it normal for results to appear in your electronic chart and the doctor not even attempt to reach you to go over the results?? Modern day technology and medicine huh.

BTW the results didn't say anything about lymph node involvement or staging, etc. I need to regain control over my life and this makes it extremely hard!

My husband is driving me and the kids to WDW for a few days. He thinks I need a break and hoping the mouse can work his magic. We shall see.

Any thoughts on my MRI results?

ToughCookie101

Hello! I’m not sure what the 0 rating is, except for an incomplete BIRADS score. Maybe they want a better view?

I have a similar story. Diagnosed at 33 recently with IDC on the left side. MRI showed a lesion in the right breast. Went for a biopsy and it was benign (PASH tumor). Keeping my fingers crossed that the same holds true for you. There are so many benign things it could be, bilateral breast cancer would be very unlikely.

SavedbyGrace1972

toughcookie

Thanks so much for responding. Yes zero/incomplete birads score. I'm so irritated because I feel that my surgeon isn't aggressive enough. The results were in my chart 12/25 and yet I had to call her today to inquire about the results. Completely irritated!

So glad your results were good. Apparently this mass in my right breast is bigger than the one in the left breast and the left breast is the one with the cancer! BTW, I was just diagnosed 12/11/17 and still as clueless as I was 11 months ago before having my annual Mammogram.

Do you know your treatment plan yet? This is definitely a lesson in patience

Georgia1

Hi SavedbyGrace. I completely understand your irritation! Yet the timetable you are on is not unusual. After my diagnosis I had to find a surgeon myself, then scheduled a second opinion with someone so busy I could only get an appointment a month out. Nonetheless, since the first surgeon wanted an MRI, then an MRI-guided biopsy of a second spot they found, it still took a month to kinda settle on lumpectomy + radiation. So the second opinion was valuable as I was still pre-surgery one month from diagnosis.

On staging, those results should be available by now. So you should ask for copies of all of the available reports from mammogram, etc. in addition to the MRI. Modern medicine is very hit or miss on how you learn what.

On lymph node involvement, I got nothing in writing until after the surgery - just my surgeon saying the lack of inflammation was a good sign.

Best of luck to you.

SavedbyGrace1972

Georgia1

Thanks for responding. I honestly have no idea when staging would have been done. I've read the complete pathology report upwards, backwards, from front to back and back to front, side to side and see nothing about staging. The grade is there and it's grade 3.

The MRI reports were inconclusive. Today I called and left a message for the nurse at the surgeons office anddif not get a return phone call. I'm so irritated right now and seriously need to try and enjoy my vacation but my thoughts are consumed by this. Ugh!!!

Modern medicine stinks. They treat you according to today's technology but want ancient money. Do these people have no compassion or empathy? Are they burned out and treat everyone as just another hysterical patient?

One would think that since I need additional tests which is what the MRI suggest, why won't this surgeon get off her tush and do her job? Ok do I get to vent?

ps0705

The waiting is the worst. I had a Birads score of zero on my 3d mammogram. It drove me crazy. My Ob/gyn is the one who then ordered the stereotactic core biopsy. He called me with the results which were then released online to my patient portal. He mentioned me needing a MRI and genetic testing simce my cells were grade 3. A week went by and I was having trouble getting an appointment since every office was closed for Thanksgiving Weds-Mon and then already booked up because of being closed for so long. So I called his office and they ordered everything for me so by the time I got into a breast surgeon everything was moving along.

If this is all following up on your ob/gyn's original order, call them to help you get the ball rolling. The breast surgeon probably won't/cant order any tests until they see you physically and do an exam and thorough chart review.

Hugs to you

Edited to add: I still don't have my final staging and am waiting on the final surgical path report from breast surgery 12/21. That is whe they do the official staging. Anything before that is an estimate.

HollyDollyD

Ah yes. The waiting game. It sucks.

These days with electronic charts, yes, it is totally possible for you to get the results before your healthcare team. I worked hard to put together a team I am comfortable with - because at some stage I will have to trust their opinion. If you aren't comfortable with the surgeon, maybe you can get a recommendation for someone who would work with you better and give you some degree of comfort. I've also learned to lean very heavily on my drs. medical assistants and nurses. They truly are gold. They let me know when I can just "walk in" and catch the dr. and they help push me through the system quickly.

As for the results, my understanding is that everything is preliminary until the final pathology labs are in.

I'll be keeping you in my thoughts & prayers, SavedByGrace1972.

Holly

SavedbyGrace1972

ps0705

Tracks for chiming in, I've already seen a breast surgeon and that is who ordered the MRI. All this is truly complicated. Wish there was an easier, simplified process. It's funny you mentioned ob/gyn because I haven't seen that doctor at all. All this happened during my routine mammogram and my general practitioner has been ordering my tests with the exception of the MRI.

Only time will tell.

SavedbyGrace1972

HollyDollyD

Thanks for your prayers and support. The diagnosis is paralyzing to some degree but I guess I've got to kick it into full gear and get the ball rolling!!! As one member put it this is an "emotional emergency" not medical emergency.

So I will just keep pushing and praying until things start happening. There is good and bad knowing the results before your healthcare team does. Oh well that's just how it is I guess.

ps0705

Saved by Grace- wouldn't a flow chart be a great resource?

It could begin with different start points; based on your pathology or start point.....general practitioner, ob/Gyn,mammogram call back, 3D mammogram call back, needle biopsy, stereotactic biopsy under mammogram, MRI guided biopsy, MRI, and then have different paths patients typically end up following ( Dr referral to breast surgeon, finding your own breast surgeon, second opinions, medical oncologist, radiation oncologist, then branch off to lumpectomy & radiation, mastectomy, recovery, understanding path reports, hormone receptor status and what that means, then exercise and healthy eating, limitations - both temporary and possible life long, follow up expectations 1-5 years out) for breast surgeons/plastic surgeons/oncologists, Possible complications and when and who to contact....

What else? As you can see I'm a planner and find comfort in knowing EVERYTHING. LO

SavedbyGrace1972

ps0705

That sounds like a wonderful idea. You should do it and I'll help!!!! It could just be a model sorta like a bridal planning book. We really do need lots more information so it doesn't feel as if everyone is loss and scrambling to put the pieces together.

Life throws us a curve ball called cancer and we are trying to hit a grand slam home run but then a new pitcher takes the mound and we are back striking out again!!!

So frustrating but I'm trying to stay positive through it all. Now I am just trying to figure out if I need to see my surgeon prior to making an appointment for my MRI guided biopsy. Gee wiz and to think I'm in WDW on a family vacation trying to deal with cancer!

ps0705

Not sure what the other ladies on the forum suggest but I would go ahead and schedule your MRI guided biopsy. When you get our surgeons' appointment set, let them you know you are having the biopsy on whatever day and where so that they can access the results for you and hopefully have them ready to review with you when you see the surgeron.

When I had my stereotactic core biopsy under mammogram, it was a specific hospital Dr. who did those, so it didn't matter who I was seeing for breast surgery. They never even asked. Just set up the appointment for me. I like that the dr performing it was experienced in doing those.

Try to have fun at WDW and have "a magical day" This will all get done. It's just frustrating because the 1st part (mammo or mri to biopsy) went so fast and then it was hurry up and wait month(s) for surgery.

Hang in there!!!!

SavedbyGrace1972

ps0705

How did you deal with your family while waiting for results? According to my famil who all live in Chicago, I'm in Georgia, the doctors here aren't doing enough and they move too slow. It shouldn't take this long to start treatment! I've tried explaining to me next if my ability that it's a process and they are trying to learn as much as about the cancer, so they can come up with a successful treatment plan. Do they want to hear that? No!!! Nada! Now I'm having to worry about hurting their feelings while dealing with the possibility of having bilateral breast cancer.

All in all this feels like a very long nightmare that I should have long awaken from by now. Goodness sakes!

houmom

My MRI report also showed a larger mass in the other breast that wasn't seen on the CT or any of the mammograms and recommended a MRI guided biopsy but since I'm having a bilateral mastectomy and new testing would delay the surgery, I opted to not have it tested. They still did a sentinel lymph node biopsy on that side though just to be sure. Remember that mass does not automatically mean tumor.

As for staging, it's determined by size, grade and whether it's spread, so you can stage it yourself if you have that info from your path report.

Do you have a medical oncologist yet? That is who I have been mainly dealing with to co-ordinate testing and procedures.

SavedbyGrace1972

Houmom

I have been dealing with a breast surgeon no medical oncologist yet. Don't even have one on board. My MRI has shown a larger mass in my right breast and I wasn't given the option to opt out of the testing. Did you have your surgery already? It seems to be like ikr a mother month or morw before surgery isscheduled.

houmom

I found my lump Nov 12, got th official diagnosis Nov 20, and I’m having surgery Jan 8. My breast surgeon wouldn’t even schedule surgery until I had met with every other person on my team. It’s important that they know exactly what they are dealing with before they go in. The MO is who will be getting you on either hormone therapy and/or chemo, depending on what your situation is. I’m in Houston so it was natural for me to go to MD Anderson, I don’t know what the place to go is where you are but I would perhaps ask your PCP if they have a recommendation. The MO has probably been the most helpful for me since she understands the whole picture, whereas the surgeons are only looking at it from their point of view.

SavedbyGrace1972

Houmom

It looks like things are progressing well with you. I was diagnosed 12/11 but they did monitor it for 6 months prior. Wishing I could get the ball rolling sooner than later. Hoping 2018 brings forth answers!

ps0705

Saved By Grace,

You asked how I dealt with my family. My MIL was diagnosed with BC at 78 so chose lumpectomy and radiation. She really pushed me to do the same and couldn't understand why I would choose mastectomy instead. Well, I used to work in the hospital and was on Head and Neck Oncology rounds as a speech and language pathologist. Being only 50 I wanted to avoid radiating my skin at all costs, I've also had pre-cancer cells (skin cancer) on my skin in several biopsies (nose, chest, back). Once she accepted that she couldn't change my mind and that I had legitimate reasons, she let me be. Everyone else was just super supportive.

It never does seem to go quickly enough though. There seemed to be such a rush to diagnosis from mammogram to biopsy, then......the big wait to get into surgeons and specialists, then another wait to actually get a surgical date. All in all, my 3D mammogram was 11/9, diagnostic mammogram 11/17, stereotactic core biopsy under mammogram 11/21, and then mastectomy on 12/21. I got second opinions but they all couldn't get me boarded until January. My tumor grade was nuclear 3 with necrosis and cribiform, ER-/PR- I didn't want to wait an extra day and already felt that it was too long. Just got my pathology from my mastectomy on 12/21 today at 7 tonight.

Hang in there ((((hugs))))

SavedbyGrace1972

ps0705

It sounds as if you moved right along within a reasonable timeframe. Well I had annual mammogram 5/14, repeat mammogram a few day later. Return in 6 months on 11/13 had ultrasound same day. Then biopsy 12/6 diagnosed 12/11 surgical consult 12/14

MRI 12/21 genetic test 12/22

MRI results 12/25 more test needed. So now I'm waiting to get a MRI guided bilateral biopsy scheduled.

My tumor is grade 3 and ki67 index is very aggressive. I want to get treatments started.

ps0705

Saved by Grace,

Do you have a surgical date? I asked around (my Dr. and friends) and got the names of reputable BS and called them myself. One of the first things I told them was, I was diagnosed with a nuclear grade 3 cells, PR-/ER- and that I'm looking for the soonest surgery possible. The office secretaries were very forthcoming and if they had something soon, they let me know so i scheduled my appt. The ones who didn't have anything soon, also let me know right away so I didn't waste their or my time. Everyone was very cordial about it. It was just the facts. One of the offices who didn't have anything available until FEB (yes Feb) referred me to another one who could get me in.

I'm lucky in that living in a metro Detroit area there are many leaders in this field so I was still able to get in with a top Dr. who was listed in US News & World reports as a top BS. University of Michigan couldn't get me in until Feb. but they were helpful finding me someone else.

It felt weird shopping Dr's but I couldn't/wouldn't sit back and wait.That is just not me. I'm also the crazy that went and picked up each of my mammogram and path reports to review myself. At least I know and am comfortable with my crazy

SavedbyGrace1972

ps0705

No I don't have a surgical date yet! Wish I did but no I don't. You are smart by shopping around and doing what is best for you!!! Knowing your rights and getting what you want for your well being! The surgeon I consulted with is wanting all her ducks in a row prior to doing any cutting! She wants to know as much about the cancer as possible before going in. That's good and bad because I feel it could be spreading while we are waiting test results! But I guess in the long run if it saves me the headache of having to have multiple surgeries I'm ok with it.

Had you had lots of diagnostic tests prior to your surgery?

ps0705

Yes the diagnostic test were in process as I was meeting with surgeons and by the time of surgery all of the results were in for a couple of weeks. We set the surgery date and then the results trickled in.

Anonymous

Some general suggestions: You can and probably should get a second opinion for both surgeon and oncologist, when you get an oncologist, if you have any uncertainty from any person that wants to be on your medical team. I've gotten more second opinions during my treatment journey than I ever had before.

Second: you are your own best health advocate. Period. No one else cares more about your health than you (don't expect the doctors to care as much as you do, but it's simply human), so demanding the best treatment isn't wrong.

Third: you have to be proactive in protecting your health. Being pushy with repeated calls, etc isn't bad or wrong. You can ask every doctor that you need a phone call with the complete results asap and see what happens.

Fourth: we hire THEM as medical experts to treat us, but they still work for us. Rather like hiring a contractor to put in a new bathroom floor. We don't know how to do it properly, but we are paying them, choosing the flooring pattern and design, etc. They have the knowledge, but they still work for us: we are the clients in all of this.

Hugs,

Claire in AZ

Georgia1

Good morning Saved. I had the same type of surgeon, so had three mammograms, an US, an US guided biopsy, an MRI (which found a second small tumor) and then an MRI guided biopsy. All before surgery over a five-week period. But I was so happy about it when the lumpectomy got it all with clean margins and a good cosmetic result.

Nonetheless I got referrals and interviewed a second surgeon for peace of mind. You might do that. Best wishes.

SavedbyGrace1972

Georgia1

That is so comforting.Yes I am having several tests prior to even discussing surgery! It's funny because I really want this cancer out my body, but I also want to make the best decisions regarding my overall health, recovery and decrease my chances of it reoccurrences.

SavedbyGrace1972

Thank you Claire. I am going to get a second opinion but I certainly don't want to delay treatment at all.