Staging IDC

buccaneersdj

Hi, I am a new member to this site, I just had a Lumpectomy a week ago and received pathology report. The pathology classification is pTX pNO and pMX. I know the tumor grade is 3 sentinal and axillary node negative, clean margins. Tumor was 2.5cm at the largest diameter, which I believe would make it a T2. I am thinking I am stage 2? I still am going to get a PET scan on July 10th. What are the chances of metastisis when your lymph nodes are negative? I hate waiting 2 weeks in between testing it's driving me crazy!!! After PET I am told by my Onc. I will start chemo followed by rad., chemo because my tumor is aggressive and I am young.

hollyann

Hugs buccaneer........I think it is stage 2 but that does not mean mets.........When nodes are negative the chances are good that you won't have mets......My sister was stage 3 with 2 nodes positive and is still NED!...She was dx Aug of 2006 so she is almost 3 years out.....I had stage 1b with no nodes and am 2 1/2 years out (yes we were dx within months of each other and also in between us we lost a sister to bc).........I wish you wonderful results and many many years NED.......Gentle hugs, dear sister.........

mmm5

I asked my Onc this very question after my Mast and finding my lymph nodes clean. He stated that METS can happen 2% of the time when nodes are cleanl. This is to say that prior to staging a sneaky cell could have gone out and started METS without a node being invaded. You have very high odds that there are no METS.

However on another node down the line nodes clear do not mean no METS there is much debate on the percentages for FUTURE METS but somewhere between 10-30% is what I have been quoted. This is of course is based on past cases different treatments etc.

nelia48

Hi,, bucaneer!  Sorry you had to join this group, but it's a great place to be when you need it, believe me!  I'm a stage 3b, but no metastisis.  I had 5 out of 15 nodes positive, but PET, MRI, bone scans, etc., showed no spread anywhere else. 

There is a page here on this site that spells out the stages of breast cancer. 

http://www.breastcancer.org/symptoms/diagnosis/staging.jsp

This will help you understand better how staging is determined.

reen

I'm confused about this node stuff.  I've seen many women with stage 1V BC and still have no nodes involved, but have METS.  How else does the cancer spread to other areas if there are no nodes involved.  I thought the cancerous nodes is what travels through your system.   

hollyann

reen it can travel through the vascular system too, not just the nodes.........

reen

Thanks hollyann.

buccaneersdj

 I was supposed to get my PET scan last Friday and now my insurance company is farting around with approving it. I am going to see my Oncologist on Wednesday for my PET results (the PET I never received) and to discuss what and when for treatment to start. Can I still be staged without this PET scan? I am new to this and already frustrated with the insurance company playing doctor!

buccaneersdj

Ok nobody is responding yet, so I will continue to rant and rave since I am now beyond frustration. My Oncologists office just called me to tell me that my insurance company has denied my PET scan, their excuse, no evidence of mets. Apparently since I am negative lymph nodes they think I don't need a PET even when it's for staging? I have been told by the coordinator at my Onc. office she will go to bat for me today and spend the entire day battling with the ins. company to get this done. I will now have to cancel my long awaited Onc. appt. since they cannot write up a treatment plan without knowing my stage!

jillyG

That is so frustrating.  I am constantly shocked at how the US insurance agencies can deny you something you should be having.  I'm in Canada, so everything is covered, there is no questions asked, and you can never be denied treatment.  It's just not right, people are literally DYING over insurance issues.   It makes me sick.....o.k. that was my little rant, I just feel so horrible for my US sisters when it comes to issues of being denied tests you need.   

You are currently stage 2 based on your information.  It's true that even if your lymph nodes are clear, cancer cells can get into your blood system and be carried to other parts of your body via that route (bone mets, for example), so there is always a chance for mets whether the nodes are clear or not.   BUT, your chances are VERY GOOD that there hasn't been any spread beyond the breast.   I wish you well, and I hope you can get that PET scan! 

buccaneersdj

Thank u2, 2tzus, I thought they have to see if there are mets isn't this part of the staging process? Tumor, nodes and mets? I thought they have to look for mets before they can say you have none and call it early stage BC?

KerryMac

I am from Canada too, and it is standard here for "baseline" scanning at the time of Dx, even if mets aren't suspected. That means they can tell if there have been changes if you have a problem later on. Maybe you could get at least a Bone scan, Abdominal Ultrasound and Chest X-ray if they won't give you a PET scan?? I am not sure how your system works - here if your Dr orders a test, you get it.

stephanie1

I am stage 2B - I had multiple biopsies of my nodes before I had surgery (all negative) but not until the SNB and Aux node removal did they find that cancer.

So before going in to surgery I was going to be listed as stage 1 or stage 2A at the latest. My oncologist ordered an MRI of the breasts and nodes, CT Scan of the brain and abdomen, and a bone scan prior to surgery. All of these came out negative btw so the staging wasn't even completed until I had surgery.

You should ask your doctor if he can order these tests as opposed to the PET as my insurance had no issue with these tests even with having negative biopsies of the nodes several times.

jillyG

Between my diagnosis and my surgery I was sent for Chest Xray, lab tests, full body Bone Scan, liver ultrasound, pelvic ultrasound.....the works.  I only had a tumour that was 0.7cm and the assumption was that it hadn't spread, but until you have those tests, you would not know.   At the very least, I believe you should be having a bone scan.

LuvJesus4Ever

Hey there!  I am 29 years old and was diagnosed with IDC in June 2009. I just had a lumpectomy (however you spell it) this last friday and had 3 nodes removed and they were negative.  I had a 2.1 cm mass and I'm still waiting to talk to an oncologist.  I have had a bone scan, liver, brain and chest MRI's done and everything came back clear.  So I am here to encourage you that you can get through this.  Put your trust in God and use his word against this awful curse of cancer.  I know it's overwhelming at first but we can get through this together!

LRM216

My insurance company denied my pet scan as well, as they permitted a breast MRI prior to my lumpectomy.  They did approve me for a CT scan and a Bone scan.  Staging is done (temporarily, through the biopsy) and definitively through the pathology report on your lumpectomy or mastectomy.  Staging is not done through a Pet scan.  My CT scan and Bone scan were used for my baseline and to determine if there had been any spread.  You do not need a PET scan as the only means to determine this. Hope this helps.

adenacb

If your sentinal node biopsy is clear, there assumption is there are no mets. But, as you know, anything could happen in the future. However, I don't think additional scans are typical in a case like yours. I didn't have any.

What's important now is therapy to make sure any microscopic cancer cells don't grow. For you, that will be chemo, radiation, and Herceptin.

Good luck!

nelia48

I did not have a PET scan when diagnosed, but did have a MRI and a bone scan.  I was staged at 3b.  I was so dumb and stupid at the time of the biopsy, so I don't even know if they did biopsy the nodes.  I was put out for it because they already knew it was cancer, that I would need chemo, and they put the port in at the same time. It seemed that the oncologist could feel the lymph nodes under my arm at the initial visit.  I had let mine go for 8 years, it had fully involved my breast, and had broken through the skin already.  So there wasn't much question as to  what I had. 

I didn't hve my first PET scan until after chemo and surgery.  Second one was just two weeks ago.

buccaneersdj

Ok my latest update is that my insurance company is refusing the PET scan because I have no positive nodes at surgery. My oncologist is now trying to get a head, chest and pelvic CT scan and a bone scan. This request went to the insurance company yesterday, still haven't heard an answer. I guess more than anything people keep telling me they can stage me without a PET what if they don't approve any of these scans. I feel like my oncologist is waiting for these scans to start treatment. She already knew that she was going to give me chemo regardless of the node involement, because of the tumor grade. How long should I have to wait for treatment. I am now 1 month out of surgery and getting very impatient. Thanks, Donna

simmonba

Hey there - you have had the surgery and your nodes are clean, so you have time to breathe a little (although it totally sucks to wait!)  I also had a chest xray, abdominal/liver ultrasound, and full-body bone scan, no PET or CT scan, and these were to establish a baseline for future monitoring as well as to double-check no mets (my nodes were also clear).  So they can do a good check without the top-line tests; and, you have already done the big thing to fight the beast,which is the surgery.  My onc kept saying "months not weeks could make a difference" when I fretted over delays, before my full diagnosis and surgery had even happened.  I would assume your onc is wanting all the information she can get to make sure she lays out the best plan, and I woudl assume that if these delays were going to affect your treatment outcomes, she would have started treatment already.  It's so hard to wait, hang in there! Hugs. 

Sassa

Hi Buccaneer!!

I am down the road from you in Homosassa.

I have a similar diagnosis to you (tumor was smaller so I am stage 1).  My oncologist did a CT/PET scan on me a week before I started chemo.  I know the scan was originally turned down but she somehow talked them into it (I never wanted to know what she told them).

Because you referred to your oncologist as she, I wonder if you are using the same onc as I am, Dr. Mary Li?  If it is Dr. Li, she is like a pit bull and won't stop until she gets the tests she wants from the insurance company. 

kellyless

I had involvement with my sentinal node, and I never had a PET scan.  I had a CT, Bone Scan, Pelvic ultrasound, chest x-ray, MUGA (heart test for chemo) - pre-chemo.  I had a follow up CT after chemo #7 (of 8) that showed "no sign of mets".  I was staged right away, based on size of tumor & lymph node involvement, had all the above tests in the few weeks that I healed from lumpectomy & dissection, then onward with chemo 6 weeks after surgery. 

buccaneersdj

Hi Sassa, yes I am more in Homosassa at the end of Cardinal and 491, with a Lecanto address. Yes my Onc. is Dr. Li and I have heard she is very good at what she does! I am glad to talk to someone who knows her as I have only met her once right before surgery. I was supposed to see her Wednesday for my PET results and to set up treatment  but we all know how that went. Still waiting...

swimangel72

Hope you can try to relax - it's such a stressful time! I do believe your insurance company will approve the cat scans and bone scans - this is what I had prior to my surgery. Do you know if your tumor was sent out for a FISH test? To double-check that it is truly her2+? The FISH test is more reliable than the original tests they perform.........my surgeon sent my tumor tissue out to an independent lab for a second pathology reading. He said he always does this because he's seen errors made by Pathology departments. If your tumor is indeed Her2+ has your onc already told you that you'll need a years' worth of Herceptin? The chemo part usually only lasts about 4 months or so........but the Herceptin needs to continue for an entire year. Good luck with all your tests - try not to worry - I'll be thinking about you!

buccaneersdj

I don't know about the FISH test so that probably means no. I am not even sure on the her2+ because on the original path report it was borderline with no mention on the surgical path report that I have so I'm her2+ or TN. I hope the surgeon has not messed up by not ordering these scans before surgery. Now the insurance says there are no +nodes therefore there are no mets. I did not get to talk to the Onc. until 2 days before surgery and she didn't understand why the surgeon had not ordered a breast MRI and PET scan. Given only 2 days she could only get the breast MRI done before surgery because she thought it more important to look for satilite lesions before going under the knife.

swimangel72

If your original path report says that Her2 results were "borderline" then the pathologist was supposed to send it out to a lab for a FISH test - be sure to ask about it, it's very important. More than any scans, the results of your FISH test will determine your chemo treatment. Also - your insurance company isn't the expert who determines whether or not you have mets.........many women have mets upon initial dx - mets can occur through the bloodstream, not just your axillary lymph nodes. OR........the breast fluid could have passed through your mediastinal lymph nodes in the center of your chest - there are recent studies showing that oftentimes, depending on the location of your tumor, the sentinel lymph node is NOT under the arm, but in the chest which rarely gets examined - except by cat scan for initial staging. Your oncologist should have no trouble at all fighting your insurance company on this one.........at least you DID speak to an oncologist before your surgery. I didn't see an oncologist until after my mx with recon........a BIG mistake on the part of my breast surgeon (who thought he was God).

ANYWAY - please don't let up about finding out the definitive results on your Her2 status through a FISH test. Here's a link with more info:

http://www.breastcancer.org/treatment/targeted_therapies/herceptin/for_you.jsp

Sassa

Buccaneer,

I am trying to private message you but the @##$ screen will not let me enter a recipient's name.  I will keep trying.

Yes, Dr Li is the best.  In the 2 1/2 years since I was diagnosed, I have become more educated about my diagnosis and have found that she has been up to date (and in one case, cutting edge) in my treatment.  Anything she suggests as treatment, I recommend you do it.

AnneN

Buccaneer,

I know I'm a little late, but I just wanted to chime in that sometimes a PET is used to stage, but it seems to be used when there's evidence that the cancer is very advanced. I was diagnosed with a nearly 7 cm primary tumor, a smaller tumor in the same breast, and at least three involved lymph nodes visible on the MRI. Knowing that much, my onc ordered a PET/CT on my first visit. The PET/CT found small mets, and that's how she staged me at stage IV instead of III.

My understanding is that one PET/CT costs thousands of dollars (I've heard 6000-8000), and that is why insurers balk at paying for them.

If they can stage you pretty well with the less expensive tests, it's probably better anyway to save the PET/CT for when you really need to know whether some suspicious spot is cancer or not. (The PET technique makes cancer "light up" on the scan so it is very clear.) Especially if it won't change the course of your treatment.

Good luck to you! 

buccaneersdj

Ok Update: Since my insurance company said "NO" to the PET scan because it was not needed they felt for some reason that a chest, abdomen and pelvis CT were needed, and a bone scan, my guess is that these scans cost significantly less than the PET. I had the CT yesterday and will have the bone scan today. Back to the doctor on Thursday and then hopefully we will have a stage and a plan of attack. Oh, by the way to add to my stress my new insurance company is trying to call my BC pre-existing! Can you believe the run around.

cp418

Every patient's breast cancer is a pre-existing condition until it is found and diagnosed!!!!!  Out rageous!!!  Don't take this manipulation and evasive sabotage by these insurance companies.  Basically they want to stress and ignore the patients so that we give up and they do not have to pay.  Maybe mention you will  contact a lawyer to discuss your rights.

Can you check with your state? BCBS is the worse with insurance denial. Recently in the news, a woman in Texas sued BCBS for denial to get treatment for breast cancer. They claim she did not tell them of a history of a 'wart' when she was diagnosed with breast cancer they refused to cover her surgery, chemo and followup treatments. She sued BCBS and won. Time was not on her side dealing with this B*S*. Patients should not have to go through this nonsense considering the high rates we pay for health insurance. BTW - those insurance people turning down people and procedures actually get rewarded for denying patients. This is morally wrong......

http://cbs11tv.com/watercooler/blue.cross.shield.2.1049292.html

http://www.americanhealthcarereform.org/bad-company.html

swimangel72

Thanks for the update - I'm glad you'll be getting the cat and bone scans (I had those prior to my treatment). Did you ask your onc what your Her2 status is - did he send your tumor out for the FISH test?