Grading

Eve, I feel a little silly asking, but are you confusing grade & stage?  

High grade DCIS is aka grade 3 DCIS.  However DCIS is always stage 0.  It sounds as if you're concerned with how they will stage your latest diagnosis...and I have no idea.

My very best wishes to you.

LisaAlissa 

eveberry - As I understand it the grade is based on the characteristics of the cells that they get from the biopsy or from the tumor.  They look at how abnormal the cells are and the higher the grade (1, 2, or 3) the more abnormal the cells are.  The stage is based on several things - the size of the tumor, whether it is in the lymph nodes, and other things.  They should be able to tell you the grade from the biopsy but you are right that without nodes it might be harder to do the staging. 

Eve, From what I learned in my case I had no lymph nodes involved, and no lymphatic involvement. My BS felt that indicated the cancer had been caught before leaving the breast. As Omaz said there is always a chance some stray cells might have gotten into out bodies.

The Oncotype test is run to see what the likely hood is that the cancer will spread. Do you know if they are going to do that test? I also read here about another thest not covered by insurance that is out. I will see if I can find the tread for you. If I find it I will post it here for you

Last I know tumor markers are taken of my blood every time I see my Dr. I think there are 3 he monitors. There is a lot of debate how useful they are in early stage cancer.

Hi Evebarry sorry you are going through this. I had bilateral breast cancer one tumour in one breast two in the other. All three tumours were small less than 1 cm, no lymph node involvement one of the pesky little buggers was Her2 positive. The Her2 tumour was Stage 1, Grade 2. With the Her2 the oncologist did recommend chemo. It was extremely disappointing but I felt I need to fight this with all that I can muster. I did four chemo treatments and a year of Herceptin. All of us have to make our decisions on this and we all need to do what sits best with us. Sending you strength and courage Evebarry. Lois

eveberry - Glad the report looks good!  If you do ever want to consider the herceptin, it isn't chemo.  It is an antibody to the HER2 protein.  If any cancer cells are out there in the periphery the herceptin binds to those cells since they have the HER2 on their surface and then helps our own bodies kill or disable those cells.  The side effects vary like everything else but the common ones seem to be runny nose, softer nails and achy joints.  There is a thread about it called HERCEPTIN - QUICK SIDE EFFECTS POLL.  Best wishes!

Eve, I'm with you completely on not wanting to expose yourself to the potentially serious side effects of treatments like chemo or Herceptin, if it's not really necessary.  But you've also said that if you'd known more about the risks of high grade DCIS back when you were first diagnosed with DCIS in 2007, you may have handled things differently then and had a mastectomy at that time - and it's possible that you might not be in the position that you are in today with a 3rd diagnosis, this time, invasive cancer.  So I urge you to get all the information you can now about your current diagnosis, and particularly the fact that your IDC is HER2+, before you make your treatment decisions. A few years from now you don't want to again be in this same position, wishing that you'd known more back when you made your treatment decision.  Make your decisions now based a good understanding of your diagnosis and the risks; do your research and ask your doctors all the questions you need to ask to the facts as they relate to your specific case. Don't make your decisions based on assumptions or what you wish to be true.

Reading your posts, you seem to be saying that if there is no evidence that your cancer has spread, then for you "the MX is preventative enough" and you won't consider other treatments for strictly "preventative" reasons. But here are some things that you should consider and ask your oncologist about:

• No screening test is perfect and no test will pick up microscopic amounts of cancer that have moved outside of the breast.  So even with a clear MRI and PET scan, it could be that a few cells from your cancer have already started to spread, undetected.
• A mastectomy reduces your risk of local recurrence but has no effect on distant recurrence. If any cancer cells have left your breast prior to surgery, a mastectomy will not reduce your risk of mets.   
• Clear nodes and having no signs of vascular invasion or blood supply to the tumor does not mean that the cancer has not already moved outside the breast. Those are good indicators for sure but they are in no way guarantees.

A couple of years ago there was a thread asking whether it was true that 30% of women with negative nodes eventually develop mets.  Fortunately that's not true.  However in looking into this, I found a quote from Dr. Susan Love's Breast Book, where she said that "20% - 30% of those with negative nodes have some spread elsewhere". This isn't a statement about the future risk of mets but it talks about the situation at the time of diagnosis / surgery. Although these women are found to have negative nodes during surgery, prior to surgery cancer cells had already moved into other parts of their bodies, either undetected through their nodes or through the vascular system (bloodstream).  This is why systemic treatments like chemo and Herception (for those who are HER2+) are given even to some women who are node negative. For each woman, it's a question of what the risk level is that some cancer cells may have escaped undetected prior to surgery. The risk for someone with a small, less aggressive cancer might only be 2-3% - and that probably wouldn't warrant chemo - however the risk for someone with a large and/or aggressive cancer (HER2+ or triple negative) could be higher than the 30%.  And that would certainly warrant chemo and Herceptin.  

The simple fact is that on this board we have women who were node negative and who at the time of diagnosis had no signs of any spread of cancer and yet they eventually developed mets. Most of the time, this isn't what happens, thankfully.  But part of the reason why this doesn't happen more often is because women who are higher risk, those with more aggressive cancers, usually are given chemo (and Herceptin if HER2+) as a preventative treatment even if there is no evidence of spread.  For some of these women, this turns out to be a life saving treatment - although they will never know this. What happens is that the small number of cancer cells that escaped the breast undetected prior to surgery are effectively killed off by the chemo and/or Herceptin, and mets never develops.

Eve, I don't know if your oncologist will recommend chemo.  I don't know if the size of your HER2+ tumor warrants Herceptin (HER2+ tumors are sufficiently aggressive that usually Herceptin is recommended for HER2+ tumors that are 5mm in size or greater).  And I certainly don't mean to scare you.  I simply urge you to not make your treatment decisions until you have all the information about your diagnosis and until you've had discussions with your doctors about their recommended treatment plan.  There really is a lot at stake here, even more than with your previous diagnosis of grade 3 DCIS. 

One last comment, about the SNB.  My understanding - although I could be wrong - is that SNBs can be done more than once.  SNB surgery aims to find the first node or nodes that cancer cells travel into as they move from the breast.  Even though you've had an SNB and the nodes that previously were the first nodes (i.e. the "sentinel" or guard node) were removed, if your current cancer were to start to spread to the lymph nodes, the cancer cells would find a new "first" or "sentinel" node.  That's why I thought an SNB could be done again.  I know for me if I had a new invasive cancer, and particularly one that is HER2+, I would want to know if there was any nodal involvement (unless I was certain that I would have chemo and Herceptin regardless, in which case the nodal results wouldn't make any difference).  Does anyone know anything about SNBs being done twice?

Eve - even having a PET is not going to tell you if you have any stray cells outside the breast, there is no test that can tell you that. Also breast cancer can sit there dormant for many years and then mets develop out of the blue. I know you are dead set against having chemo, but please at least try to get herceptin by itself. As Beesie said the side effects are minimal and they do keep a close watch on your heart during treatment.

Sue

Eve - there are many examples on here of women who had neo adjunctive chemo and the cancer shrank to nothing, so chemo does kill cancer especially HER2 cancer. I hope you find some peace with the decision you have to make.

(((((((((((HUGS))))))))))

Sue

Good luck making your decisions Eve. If it were me in your shoes, with your history of recurrences, I wouldn't hesitate to have a bilateral and Herceptin. I get where you're coming from about not liking meds and preferring the natural approach as I was that way 13 months ago....until I was facing cancer and I realized I needed to rethink things. Beesie--I think it is incredible that you have taken the time to write such eloquent and informative replies to this thread. It is obvious you care. What a fabulous group of survivors we have on this Board.