Doctor says BC, Breast is Negative, but the lymph is infected...

Rich, it's clearer now to know that your wife's imaging does show a high suspicious mass - that explains why the breast biopsy was done.  Even though the breast biopsy was negative (and I appreciate that the surgeon feels that she didn't get a good sample), because your wife's lymph node biopsy was positive, there is no question that she has breast cancer. So that does not need to be confirmed - it is unfortunately a known fact because of the lymph node involvement.  At this point all that the surgeon is trying to do is find the source, within the breast, of the cancer that has travelled to the nodes.  Since the imaging shows only this one mass in her breast, and since it appears that the image is highly suspicious (possibly a BIRADs 5 rating on the imaging?), I'm really not sure why the surgeon is doing another needle biopsy rather than a surgical biopsy, along with the removal of lymph nodes.  Usually the next step after a failed needle biopsy is not another needle biopsy, especially if it's already known that the patient has breast cancer.

The fact is that since the mass appears highly suspicious on the imaging, another benign biopsy would still be discordant with the imaging, so whatever happens the mass will have to come out.  And since it's known that at least one node is involved, more testing needs to be done on the nodes.  I might be missing something here, but it seems to me that this MRI guided biopsy is an unnecessary step.  At this point, the surgeon should be trying to hone in on the specifics of the diagnosis so that a treatment plan can be put in place.

I agree with Chickadee about seeing an oncologist.  Sometimes patients don't see an oncologist until after surgery, but with what appears to be a 3.2cm mass and nodal involvement, and with a PET scan planned (which I believe would usually be coordinated by an oncologist) I think it would be good for your wife to get the opinion of an oncologist now, if an oncologist is not already part of the team.

"Should we have all the test info sent to our preferred Oconlogist?  And get thier opinion before the next needle biopsy/MRI?"

Rich, if that can be done without too much of a delay, yes, I think that would be a good idea.  The surgeon seems to be running you in circles (why another MRI if your wife just had one?) so another opinion - and particularly from an oncologist - might be helpful.

Just an FYI - at some cancer centers there is a moment, or moments, where all your docs actually meet together.  For many of us the "team" is a collection of docs that may occasionally talk on the phone, but does not meet together in one location.  They have become our doctors through referral - sometimes by other docs, word of mouth, specialty of reconstruction, etc.  Important for you to understand, the oncologist is usually the longest running relationship you have, the doc you have the most contact with.  It is never too early for them to be involved.  Good luck and hope you can find some answers soon.

Johns Hopkins should advise you what they want. I would definitely call them. They may want you to use a release form of theirs



MDAnderson requests all records and films and provided me with a release form to make copies of. It can be quite a challenge signing releases and making sure different facilities forward the documents, films and media.



Best to check now.

Rich- I went to Hopkins for a 2nd opinion. They required that all of the doctor's visit notes and reports, pathology, mammogram, sonogram and MRI, be forwarded to them prior to my visit. I went to the radiology center and got copies of all of the studies and hand carried those with me. You may want to do that to be sure that they can evaluate the studies themselves. Best of luck coming up with a plan.

And I would presume the "team" would be the my wife, the GP, the Surgeon, an Ocologist, me and who else?

I considered the plastic surgeon part of my "team" (using the term very loosely).  

My radiologist gave me an excellent piece of advice:  makes sure your breast surgeon and plastic surgeon have worked together extensively so that there are no surgical surprises.  WHEN you have selected your breast surgeon (not so sure the one you are dealing with is, ummmm, the best you can find) immediately ask for a list of plastic surgeons to discuss reconstruction options assuming no lumpectomy (do they do lumpectomies on node positive cancers?).  I made the mistake of actually scheduling the mastectomy and then looking for a plastic surgeon which narrows your options to those who are available on the scheduled date.  We were in a tearing hurry to get it all done which was in hindsight stupid.  

Beesie arguably saved my life with her gentle insistence that I wasn't taking my diagnosis -- and, in particular, my HER2+++ status seriously.  I'm glad to see her posting on this thread as I had one of those "duh" moments after reading her first post.  

Unless you are at a center, your medical team will never discuss your case when they are all together.  Your surgeon may talk to your oncologist who may talk to your GP who may talk to your gynocologist, but they don't all meet.  That means you have to be prepared with all of the relevant information for every appointment.  Get a notebook.  On the first page, list the names and phone numbers of each doctor as well as contact information for the nurses -- being able to readily reach the nurses made life MUCH easier for me.  

Make sure you get a copy of every report. They won't automatically give them to you -- in fact, they won't automatically tell you there is a report so you have to ask -- bloodwork, surgical report from port placement, surgical report from mastectomy, etc.  

I had to hand deliver the slides from my biopsy to breast surgeon number across town -- can you believe that?  Bizarre if you ask me.  Try to arrange it such that all your doctors practice out of the same hospital.  

If she is interested in using cold caps to save her hair, ask the oncology department early on whether they allow cold caps.  If she feels strongly and they say no, you can either go elsewhere or appeal the decision.  

Glad to see you here -- these ladies are the BEST.  I shudder to think what I would have done without this wealth of information and support.  

Rich I think it is wonderful how you are taking care.of everything and organizing it. I wish the best for your wife. I was curious that you said you had the biopsy report but unless I missed it I didnt see if you listed what type and grade your wifes breast cancer was. Is it er, pr, or her++? I absolutely agree with the others that the lymph node bx will tell what kind of breast cancer it is and you should get with an oncologist because he/she may want todo treatment before surgery. Prayers are sent to you and your wife.

Rich, I had an area of cancer that was only visible on MRI. They did an MRI after an initial biopsy for an area that could be seen on an ultraound was found to be invasive cancer, and found two additional suspicious areas. They tried to find those areas on both mammograms and ultrasounds and could not find either. So I ended up having two MRI guided biopsies. Very similar to the MRI. Not sure if you want info on the process or not, if not, skip the rest.



They took some images, injected the contrast and took more images, then inserted freezing and then a needle to ensure they had the right spot, more images, then the biopsy (machine for the biopsy sounded like a dental drill, but not sure all technology works the same way - they warned me, which was good). Then they inserted a clip to mark the spot and took some additional images. Lots of in and out of the machine. Finally, I had to have mammograms to have images of the clips in that format as well.



Good luck to you and your wife. I hope you have some answers soon. The initially waiting is very hard.

RichCPAman - it is pretty unusual to get through this process without an insurance hiccup - most of us have something denied, or have to spend some time on the phone with our insurance company.  I have military insurance, with good coverage, but it is a pre-approval co-pay system.  I can't have any procedure that is not approved in advance, except emergency care.  I discovered when I arrived at the plastic surgeon's office for the first time for my consult, less than a week prior to the BMX, that the coordinator in the BS office did not request approval for the plastic surgeon to be in the operating room!  I had to go to the military base, sit outside someone's office, and wait for several hours to get the approval for my civilian provider.  I ended up not seeing the PS until Friday (a surgery day for him) - my surgery was the following Monday afternoon, but he came to his office and made extra time for me.  The same person in the BS office failed to get pre-approval for the Mammaprint testing to be done on my biopsy sample.  It is FDA approved, but my insurance considers it experimental.  They denied, but it was after the fact, so I got a bill for $5,000 in the mail.  I had not signed anything saying I would be financially responsible, and that saved me, my insurance paid the $61 mailing fee, so I asked for an Assignment of Benefits form that particular lab, faxed it back, and the $61 is all they got.  I have no idea if they tried to extract payment from the surgeon's office.  I got very tired of doing this person's job for her - all at a time that I was a bit stressed out by having CANCER!  I also had a colonoscopy denied much later after chemo, that my oncologist specifically requested, because I didn't fit the insurance company's risk profile - I have previous GI surgery for reflux, locally advanced breast cancer and extensive skin cancer, but I don't fit the risk profile?  Geez...  On the upside, if you look at my signature line and see all the surgery and treatment, they did cover that - I am not complaining because I feel fortunate to have really good insurance, just illustrating that all of us have insurance hassles at one point or another.

Rich,

I think this might be the study that TheLadyGrey is referring to:

Axillary Dissection vs No Axillary Dissection in Women With Invasive Breast Cancer and Sentinel Node Metastasis    

This is research that came out in 2011 that suggested that women who've had a positive SNB may be able to skip having an axillary node dissection if they are planning to undergo chemo regardless.  The study showed no difference in survival or disease-free survival between those who'd had a positive SNB and went on to have an axillary node dissection, having more nodes removed, and those who'd had a positive SNB and didn't have any more nodes removed.

"Results  Clinical and tumor characteristics were similar between 445 patients randomized to ALND and 446 randomized to SLND alone. However, the median number of nodes removed was 17 with ALND and 2 with SLND alone. At a median follow-up of 6.3 years (last follow-up, March 4, 2010), 5-year overall survival was 91.8% (95% confidence interval [CI], 89.1%-94.5%) with ALND and 92.5% (95% CI, 90.0%-95.1%) with SLND alone; 5-year disease-free survival was 82.2% (95% CI, 78.3%-86.3%) with ALND and 83.9% (95% CI, 80.2%-87.9%) with SLND alone. The hazard ratio for treatment-related overall survival was 0.79 (90% CI, 0.56-1.11) without adjustment and 0.87 (90% CI, 0.62-1.23) after adjusting for age and adjuvant therapy."

Conclusion  Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival.

So even if one is found to have positive nodes through the SNB, removing more nodes is not necessary and does not appear to impact recurrence or survival rates, provided that the patient has chemo.

Now in your wife's case, she hasn't had the SNB, but it's known from the biopsy that she has at least one positive node. I can see that a surgeon might want to do the SNB but you should certainly ask lots of questions before you agree to an axillary node dissection, with the removal of more nodes. 

As for the insurance issue, what the clerk in the insurance office probably doesn't understand is that although your wife has been confirmed to have breast cancer, the primary source of the cancer within the breast has not yet been identified. I'd guess that the MRI-biopsy request paperwork did in fact state that your wife has been diagnosed with BC; with the positive node, there's no question about that. So the rejection of the MRI-guided biopsy actually makes sense in that context. A diagnosis of breast cancer has been "nailed down"; what's not nailed down is the source of the cancer. The biopsy is needed in order to identify the source of the cancer so that the cancerous area in the breast can be surgically removed.  That's the big unknown here - where is the cancer in the breast? The cancerous area needs to be found and removed and analysed so that a proper and complete diagnosis can be made and an appropriate treatment plan can be put together.  This is the explanation that needs to be provided to the insurance company.

Alternately, the other option is an excisional (surgical) biopsy to remove the suspicious mass that appears on the MRI.  This can be called a "lumpectomy" and would be approved by insurance.  It's possible of course that this mass might not be the source of the cancer, but that's probably quite unlikely. So that's the other way to get around this insurance rejection.

It is important to note that in the study referenced above all the participants had lumpectomy and radiation therapy in addition to systemic therapy (which, if I am reading this study correctly, was at the discretion of the physician).  It also indicates that the SNB(s) were positive, but we don't know which node is positive for RichCPA's wife.  If the positive node can be visualized on imaging and/or palpated it is not likely to be a micrometastasis, but a larger node.  We all have seen folks have neoadjuvent chemo that has not achieved PCR, including in the nodes, so I would personally be reluctant to resist node removal in this instance.  I am not much of a gambler and looking at my particular case in hindsight, not having ALND would have been equivalent to having a stage 1 sized breast lump in my nodes, skipping surgery altogether, and relying on chemo and radiation to eradicate the cancer. Nobody would do that for a lump in the breast. My SNB had 20 IST (isolated tumor cells) but my additional positive node further up the chain, was much larger, and was never seen on any form of imaging.  Just want to add that my situation was fairly unusual, but when making informed decisions about node removal it may be valuable to know about cases like mine.