Just diagnosed and am very worried that it has already spread

The MRI might show whether your cancer has spread to your lymph nodes, but if you want to see whether or not it has spread elsewhere, you might ask for a PET scan. In fact, if the MRI shows any nodal involvement, your doctor might then order a PET scan to see whether its found a home elsewhere. Good luck!

Dear CKC1969, Welcome to the BCO community. We are so glad that you reached out to us. There is much support and information shared here among those who truly understand what it means to be diagnosed and treated for breast cancer. You may want to check out information about tests, etc on our site at testing. Keep us posted. The Mods

CKC - I would push for a PET scan prior to starting chemo.  Because you are doing neoadjuvent chemo you may never know your true stage because surgery (which is when staging is done) will come after systemic treatment.  I would actually go a step farther and ask for a sentinel node biopsy (SNB) when your port is placed so that you have a better determination of your nodal status prior to chemo.

Talk to your DRs - they are the ones who can give you answers as to what you at possibly dealing with. No one here can give you any info on your prognosis

Full body CT/MRI and PET will show if any metastis. Even IF anything 'lits up' that does not automatically be an that there is cancer in the area. My PET 'lit up' along my lower jaw - biopsy showed nothing there - that was 5+ yrs ago and I'm still NED.

Why have you decided that your ovaries will be automatically be removed? Do you have any issues now?

Write down all your questions/concerns and talk to your Drs about them. Hand them a copy of all questions and be sure they answer your concerns. If you don't understand, keep asking until you do! (Taking a tape recorder/smart phone and recording what you are told can be very helpful.)

Again - I will say talk to your Drs about your concerns/worries. Perhaps talking with a Counselor/Dr (or someone within your Faith/beliefsif you have any) for support/guidance.

Right now the waiting is gruesome. Found a lump first of November ( normal mammo in July) had to schedule with multiple MD's till I had biopsy on 16th ( positive) and MRI on 22th (just to be sure no where else) and now another biopsy on the 30th, same breast (have to wait due to holidays and all the end of year people trying to take advantage of meeting their yearly deductible). (okay...maybe a little anger) then wait some more for results and than God I hope to be able to have a plan in place on Jan 5th. Everyone says, no problem you have always been so strong with all the challenges you have faced in life (a few) but not feeling so strong now.

Hi buna and ckc. I'm really sorry that you had to join this club but you've come to the right place for support. Everyone here wants to help and is more than willing to answer your questions. The beginning is REALLY HARD! But you will get through it. I promise. The advice here is invaluable. Once you have a plan in place things will move faster. Stay strong but remember you're human (you're more than entitled to a pity party once in a while). 

CKC ~ I just wanted to add that what you're going through -- feeling your bc has already spread -- is very normal. I think most, if not all, of us have that fear when first dx'd. But beyond that, I agree with SpecialK, especially since there may be a genetic component to your bc. And that's something that should also be addressed, if it hasn't already -- the possible need for genetic counseling, to see if you carry a BRCA 1 or BRCA 2 mutation, since your Mother must have been quite young when she was dx'd.

I also want to add -- if your doctor isn't receptive to doing a PET or CT Scan for any reason, I would consider at least getting a second opinion. For now, I don't see any red flags, so to speak, about your tx plan. But I would certainly ask for a PET or CT Scan, if only for the peace of mind it will give you going forward.

So sorry about your dx. Sending you hugs & prayers for good results from your upcoming MRI and with chemo! Please keep us posted on what you find out. Deanna

hi CKC, I'm feeling very much like you. I've been diagnosed with idc but I don't know a lot more. My mass is just under 2cm on the ultrasound. I'm so scared. I'm 47. I go back to the surgeon on the 7th of January. I wish both of us along with everyone else in this club the best of health in 2015. Please let me know how you go.

PET CT is the most accurate test to look for distant metastasis, which must be at least 1cm in size to be seen most of the time. But the issue may come to whether or not it will change management at this point. If you are being treated with chemotherapy first and that would not change either way, for one, your insurance may balk at paying for the test. But also I would not subject myself to a radiation based imaging study unless the results would make a difference in how I was to be treated. I would speak with your MO, because the plan may be to do PET CT after chemo and prior to surgery to ensure that there are no distant metastasis at that point.

Its terrifying, no question. I waited about 6 weeks between diagnosis and surgery and every night I started feeling pains in my breast and worried that it was growing and spreading. And even though I was determined to be stage 1, after surgery when you face decisions about adjuvant chemo, there is the unfortunate reality that any of us could have some cells that escaped somewhere and are too small to be seen with any imaging. That's the reality of breast cancer; once you have it, even after every therapy is done, there's no way to know if you are cured or not. And staging is only one part of the story, because some big tumors are less aggressive, and some small ones are more aggressive. So don't get bogged down in statistics. Every story is unique. However, all of us are in the same boat unfortunately, and having kids makes its very hard (I have an almost 4 year old). I found it helped to stay present when I was with him and let his natural positivity lift us both up. Its totally normal to feel anxious and terrified, but try to balance that energy out with some joy and gratitude during each day when you can.

CKC, sorry to hear your news. This is a very scary time for you. A lot of us have walked in your shoes. It doesn't make the fear go away, but knowing others have gone thru this journey before you and have come out on the other side, may hopefully bring you some comfort. I remember how much better I felt when I found this board. I didn't post much, but I read a lot and didn't feel so alone when I saw so many people who had been thru or were currently going thru the same things I was.

Also, if you feel overwhelmed, don't hesitate to ask your Drs for some medication to help you get thru this tough time. A lot of us, who have been where you are, needed a little help.

Hoping the best for you on Friday

When I was diagnosed in 2011, they scanned me from head to toe (well, thigh), including brain. Some MRI's and some Pet/Ct scans. I'm guess my insurance company did not put up a fuss to all those scans. The advantage to all that is that I knew where I had cancer and where I didn't and it was very specific. I had five spots in my spine, none anywhere else but the breast. After chemo, they scanned everything again (not brain) and everything was virtually gone. At least I know how well chemo worked and the extent of the cancer.

CKC, I did chemo first and the reason was to stop everything in its tracks ASAP, and also to make surgery more successful. We knew I had one lymph node involved. If I'd done surgery first, I'd have had to wait to start chemo, and if they'd missed anything that would have been that many more weeks for cells to escape out into my body, away from the breast involved. So for me, that was why chemo first made sense. I see others with similar diagnoses going through a similar treatment protocol. I wish you all the best. There's no two ways around it - this is all scary and difficult.

CKC, it's very common for things to change, especially when you're first dx'd, as more information becomes available from biopsies and other tests. I don't think it's as much "smoke & mirrors" as it is just a fluid, changing situation -- like finding something on an MRI or in bloodwork that changes their assumed course. This is also a difficult week to get things scheduled due to the holidays and many docs taking off. But, that said, I personally think when things start to get the least bit confusing or complicated, that's the time to head to an NCI-designated cancer center, where they will have all the necessary breast cancer specialists under one roof (or on one campus), and the most experience. Here's a list of them should you decide to look beyond your local docs, which is what it sounds like you may be dealing with right now. http://cancercenters.cancer.gov/cancer_centers/map...

Hope this helps. And keep in mind, what you're going through is one of the worst times. It gets much easier once you have a complete dx and a treatment plan in place. (((Hugs))) Deanna