My Introduction

Thanks!

So here is where we are.

1/4/14 "something didn't seem right" so my wife did a self exam and felt a lump. It took a bit of time to see the NP at her OB/GYN but then things moved pretty quickly with mammo's and such.
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1/17/14 Initial Dx
Left Breast
Tumor 1 

2.6 cm tumor, IDC with extracellular mucin production involving ~80%, DCIS, solid type, intermediate nuclear grade, Nottingham score of 6, (tubule=3, nuclear pleomorphism=2, mitotic rate = 1)

Tumor 2
5 mm nodule, IDC, DCIS, same Nottingham score as above

Both Tumors
Er(+), Pr(+), HER2[FISH](-), BRCA1 & BRCA2 (-), Ki-67 27%
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1/29/14 MRI
Tumor 1 is actually 3.2 cm with excrescent nodulations, tumor 2 is actually 6.8 mm spiculated nodule, patchy-clumped enhancement between tumors suspected DCIS. A 4 m left internal mammary LN. Left axillary adenopathy.
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3/13/2014 Surgery (planned)

double (skin saving) mastectomy
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So from my lay reading of the reports.... so far it seems like the cancer is mixed mucinous, IDC and DCIS. Tumor grade is currently 2 and the cancer stage (estimated) is 2, with actual staging after surgery.

Questions for now:
My main technical questions right now are about the cancer growth and the prognostic methods, the factors influencing them, and their accuracy given medical advances since inception.

Cancer Growth
1.) The histologic grade of the mitotic rate is only 1, but the Ki-67 is showing 27%. That seems incongruous; is this unusual?

2.)When the tumor is being graded are multiple mitotic tests on multiple specimens from the biopsies performed? If only 1, which cancer type is tested? Why? What influence does that have on the results?

3.) Is the Ki-67 or the Mitotic rate a "better" predictor of actual growth speed?

4.) Is all of this irrelevant until the surgery is done and the actual tumor(s) are tested?

Prognostics
1.) Is NPI still valid or has it been updated? I saw this paper showing that survival rates of patients between 1990-1999 were far superior to those in the same NPI groups from 1980-1986, which makes sense.  Has something been done similarly showing the most recent NPI survivability statistics, say between 2000 and 2010?

2.) Is the PREDICT method accepted in the USA?  Is it more/less reliable?

General
So here is the big rub. My wife seems happy to place her trust in the doctors and ask few questions.  I understand - she is afraid of the answers and doesn't adhere to the "knowledge is power" adage. We are not of the same mind.  Of course, neither of us is right, and I can't ask her to leave the room so I can ask questions of the doctor(s) and I have not yet tried to see if I can get answers from the doctor or patient assistant to emailed questions.

So far I have tried to do my own research, keep the questionable or
negative knowledge to myself, and share the "good" knowledge that points
to better survivability etc. with her.

1.) So how does one get the information they want when they are not the patient?
2.) Were any of you in a similar situation with your treatment? Your needs come first - how did you and your SO handle it?


Thanks - I hope this wasn't too long or too many different subjects within a thread.

Jim

Thanks juneping. 

I understand grade vs. Ki-67, but the mitotic rate part of the grading and Ki-67 are both measures of growth speed. It is the low mitotic rate (slow growing) with the very high Ki-67(fast growing) that seems odd.

Thank you all for your very helpful responses.

kayb - how awesome that your tumor was so responsive to chemo! Your explanation about the heterogeneity of the tumor being responsible for the Ki-67/mitotic rate difference is quite logical. I will see if I can reach out to the "ask a patholigist" at Johns Hopkins. I'll share the results here.
I was unfamiliar with Adjuvant Online - I will take a look; thanks. At the same time, I agree with farmerlucy that the numbers are simply that and living life is the important part. Especially when statistics are great for groups but are not necessarily predictive of a specific individual's prognosis. I doubt my wife's doc will take individual appts as she is the  but I will try and get info from the PA, she's been very nice and

stenokim - I'm guilty of being an engineer too; so the research and technical reading is also helpful to me. I don't know if it's in search for control vs. helplessness or if it's just a need to understand what's happening and why treatment options are picked. As you know - we engineers are not quite normal people.

farmerlucy - great advice on not living by the numbers.  If I may ask - why do you wish you got a second opinion on the pathology? Thank you for the invitation to talk to your husband. I'm doing ok so far. Unfortunately we have a lot of experience in medical difficulties (several miscarriages, family cancer and Alzheimers Hx, my son was Dx'd with Type I diabetes at age 4, etc.) between all of that and no alcohol for the past 24 years I know a bit about "one day at a time" even when the day stinks. LOL

voraciousre... - thanks for the invitation. I'll pop over.

Thanks Kicks - I will probably break it up into a couple different topics too so the questions and answers are more focused. It helps now and in the future when others use old threads for info.

Here is the exchange from Johns Hopkins "ask an expert" site on the Ki-67 vs. mitotic rate.

My post previewed fine but posted incoherently. Another try.

Here is what I sent to Johns Hopkins ask an expert. Their answers are in brackets.

My question involves some seemingly incongrous pathology results regarding tumor growth rates.

The
report states there is invasive ductal carcinoma with 80% mucin
production and ductal carcinoma in situ. The histologic grade of the
mitotic rate is slow growing and classified as a 1, but the Ki-67 is
showing 27%, which would indicate a much higher growth rate.

Below are my questions.

1.)Are the Ki-67 and mitotic rate tests done on different biopsy samples?
<Yes>
2.)Is it the heterogeneity of the tumor that is most likely responsible for such disparate results?
<Probably>
3.)Is either IDC or mucinous cancer "typically" faster or slower growing than the other?
<Mucinous is usually slower growing>



ziggy - Thanks (btw - I love Ziggy Pop; solo and with The Stooges.)  What you wrote is so very true. There are plenty of doctors that my wife will, or could see, but she only has one husband - and I'll do my best not to lose scope of my role; nor the importance of it.

kicks - Thanks. I should have written my intentions, or pronouns, more clearly at the start. When I wrote:
  "I ask because one of the prime purposes I came here is for help in
finding the best support for her, which is not something specific to BC
types."
I intended to have "here" mean "this topic", not "this website", which is what I think is the basis of your question.  Yes, she signed the form; I'm authorized to receive all medical information. I can't ask all the questions with her there because she and I have different personal preferences on the amount of research and information we want to do or have.

My2-Girls   sorry that I can't help with your answer. Maybe someone else can, or you might get better/faster results if you start another thread with appropriate subject or try the Johns Hopkins "ask and expert".

Holeinone - she doens't seem to be too anxious, at least not unhealthily so; she is sleeping and eating,  she is not irritable, and she is talking more openly. Most of her earlier expressions of fear and anxiety were general, e.g. "I hate all of this". I've been trying to be supportive of the global fear as well as draw her to speak to the more specific fears and concerns and we've discussed survivability, recurrence, body changes, intimacy, etc..   Still, I'll keep your advice in mind.  
Surgery date - we're told it's the concurrent availability of the OR and the doctors.

Today my wife had her surgery. In fact she still undergoing the breast reconstruction but I did receive the call from her breast surgeon. Two of three sentinel nodes removed were positive for cancer. 

She starts chemo in four weeks. So we will be meeting with the medical oncologist and she'll have some bone scans in the meantime. I was concerned before today, now I'm scared as  can be.