Mixed Message-Now Even More Confused

Hi Pam,

Hearing you may need chemo is very hard.  But, as someone going through it right now I can tell you that you will get through it.  It will stink, but you will get through it.

If I were you, I would call my oncologist and tell him exactly what you said here and ask if the prognosis is getting worse.  These doctors at times speak "doctor" to you and you don't know what to do.  If my doc says something that goes way over my head, I will flat out ask "IS that good or bad" or "Now, pretend I am 5 and explain it again."  If you do that with a smile they get what you are trying to say, and I think I feel less uncomfortable asserting myself if I can put a little humor into it.  That is a lot easier said than done but your doctor needs to explain things so you can understand them.  We get so many "We don't know yet's" that its very frustrating.  I think that a call to your onc just saying something like "I was thinking about our last appointment, and it sounds like my prognosis isn't as good as we originaly thought.  And frankly, it has me very concerned.  Can you explain what these results mean and what the chemo will do for me?" 

That all I can offer.  Other than this is a great place to come vent because  you get fantastic support here!!

Love

Robyn

in my case, the tumor was extremely small, .8cm, stage 1. i had two nodes removed and both were negative.  but the cancer was grade 3 and triple negative (ER-, PR-, HER2-) (meaning i cannot take tamoxifen or any other post-chemo hormonal treatment). therefore, my med onc recommended a very aggressive treatment of double-dose chemo and 36 treatments of radiation. i'm halfway through chemo now. i opted for a bilateral mastectomy because of the aggressive grade of the cancer, the triple negative component, and this, in addition to the treatment, brings my chance of recurrence down to 2%. chemo is no walk in the park, but if i want to try to beat recurrence, i have to go through with it. the forums here have helped me enormously, especially the group that is going through chemo at the same time. let us know how you are doing.

Pam ~  I just wanted to add my empathetic understanding about what you're going through.  I think next to hearing, "It's bc," and "You need a mastectomy," the most dreaded words out there are, "You need chemo," -- especially when you are totally blindsided by the news.  All I can say is, after you vent about how frustrating and unfair it is, you have to start to look at it as -- thank God someone raised the question and didn't let me walk around with a time bomb still ticking inside of me.

One thing you can always do is get a second opinion from another onc.  And you can also have your pathology reread by a different pathologist.  Often both of these can be accomplished with one appointment at a comprehensive breast center for a second opinion.  You don't necessarily have to stay with those second opinion docs; you can always take the information back to your original onc if you like him.

But, as hard as it is to get the kind of news you have -- and believe me, I know it is, because I went through it, as well -- I'd rather have them err any time in that direction -- finding something relatively quickly that may have been overlooked -- than to overlook something that needed attention and didn't get it.   Take care, and please keep us posted  ~  Deanna

My Ki67 was also very high- around 70% - nad it really didnt change the treatment but I was already going for chemo due to Grade 3 HER2+ and a positive intramammary node

Kristy

I wasn't offered Oncotype testing.  I've read that they usually don't test Her2 positives, since they know they are aggresive and fast growing tumors, and chemo is usually recommended.  For me there was never a question that I would do chemo. I was stage 3, node positive, ER/PRnegative, so it wouldn't have done me any good anyway.

This is from the Oncotype site- The Oncotype DX assay is intended to be used by women with early-stage (Stage I or II), node-negative, estrogen receptor-positive (ER+) invasive breast cancer who will be treated with hormone therapy.

So it's sounds like you are a perfect candidate for the testing.

Wanted to add that I did do chemo and I am glad I did everything I could to give me myself the best shot at never getting it back.

It's wonderful that there is so much information out there, and some of it is very good and useful. But you need a dam medical degree to know for sure what's good and what's not, what's current and what's from 5 years ago and no longer relevant.

Good luck. Think about that second opinion.

I'll give this a bump as I don't know. I didn't have Oncotype dx so I'm not up on the details of what it evaluates.

I'm hoping this will help and not make things worse for you, but here is some information I have found in medical journal articles about Ki-67 with my "best" interpretation/understanding and simplest explanation.  Ki-67 in a protein antigen that is found in growing and dividing cells.  It is absent in cells that are resting.  So therefore when cells are growing and dividing rapidly (as in cancer) - Ki67 will be present - the more rapid the growth and reproduction of the cells - the more Ki-67.  

 A breast tumor that scores high for Ki-67 is made of cells that are rapidly dividing and growing. Ki-67 is thought to be a useful indicator (marker) of cell proliferation (how rapidly cells are growing and multiplying). Therefore if you have a high Ki-67 level, your tumor is growing rapidly and  rapidly growing tumors are considered to be more "aggressive".  On the positive side, chemotherapy drugs target rapidly growing/multiplying cells and can be very effective for aggressive tumors.  And in the article I talk about next, it was found that the higher the Ki-67 level, the better the response to chemotherapy

The prognostic value of Ki-67 appears to be controversial and not well established at this time. A 2005 article in the Journal of Clinical Oncology which analyzed data from 40 studies, involving more than 11,000 patients and concluded the following about the prognostic value of Ki-67: "there is some prognostic significance in node negative women, but its clinical value seems slight to modest"  From what I could gather from reading the article is that by itself, Ki-67 was a pretty good prognostic indicator, but once you added other prognostic factors - it was not as accurate.  Other prognostic factors would include things like ER/PR status, HER-2 status, grade of tumor, micro-invasion, etc.

At the 2003 Annual meeting of the American Association for Cancer Research a study was presented that showed that Tamoxifen reduced Ki-67 levels, I'm wondering if this may be another reason your oncologist prescribed Femera for you - maybe as an estrogen blocker, like Tamoxifen it may have a similar effect on Ki-67 levels???

Onco-Dx is also considered a "prognostic" tool.  Your OncoDx results will indicate whether or not you are likely to benefit from Chemotherapy or not (whether the risks of chemo are worth the benefit)  - for example if Onco-Dx indicates that your tumor has a 3% chance of recurrence then the risks of Chemo outweighs the benefit.  My educated guess is that since your Ki-67 is high - your onco-dx will come back showing that you would benefit from Chemo, 

Please excuse the above caps in the first sentence.....an error that I tried to delete, and that obviously did not work!

Hi:

I don't want to cloud the issue or add any confusion but what I did read recently and you can check this is that people with a high ki-67 score do better on Arimidex than tamoxifen if you have to take a hormone pill in the future.  You can google the study if you like.

I had chemo and recently read another study that said taxotere and cytoxan had better results than AC.  I had 4 rounds of TC and only had a couple of days each month that were difficult.  Good luck.

Peeps