What is our prognosis, anyway?

Finally my fever has gone down.  I had to fly cross country with it at about 101.  Used Advil.  Good to know it might not be so bad next time.  

Paul & Sand - I'm sorry for losing your mom.  If you read our thread, many profiles indicate these women have undergone prophyactic mastectomies.  While the doctors don't come right out and say that is beneficial to staving off recurrence, I think it buys us at least some more years. 

Linda & Karen1956 - keep on keeping on !!  You two are inspiring to me. 

Hugzzzz

Ok, I feel better, I found the part where it factors in treatment and my risk went way down!  I was given an extra 13 years! 

Hi.  Where is this online tool?

thats fine, but does not have tch chemo, so it must be rather outdated. also doesnt do more than 10 nodes. is there anyone here that found out whether they were luminal a or luminal b?

Learn more about hormone receptor status (estrogen receptor status and progesterone receptor status).

Learn more about HER2/neu status.

Luminal A

Most breast cancers are luminal tumors. Luminal tumor cells look the most like the cells of breast cancers that start in the inner (luminal) cells lining the mammary ducts. 

Luminal A tumors tend to be:

• Estrogen receptor-positive (ER+) and/or progesterone receptor-positive (PR+)
  
• HER2/neu-negative (HER2-)
  
• Tumor grade 1 or 2

Fewer than 15 percent of luminal A tumors have p53 mutations, a factor linked with a poorer prognosis [30,45]. 

Of the four subtypes, luminal A tumors tend to have the best prognosis, with fairly high survival rates and fairly low recurrence rates [30,43-44,46-47]. Because luminal A tumors tend to be ER+, treatment for these tumors often includes hormone therapy (learn more).

Luminal B

Luminal tumors have cells that look like those of breast cancers that start in the inner (luminal) cells lining the mammary ducts. 

Luminal B tumors tend to be:

• ER+ and/or PR+
  
• Highly positive for Ki67 (have a high number of cancer cells actively dividing) and/or HER2/neu-positive (HER2+)

Women with luminal B tumors are often diagnosed at a younger age than those with luminal A tumors [46,48]. And, compared to luminal A tumors, they tend to have factors that lead to a poorer prognosis including [30,43-46,48-49]:

• Poorer tumor grade  
  
• Larger tumor size
  
• Lymph node-positive
  
• p53 gene mutations (about 30 percent)

In some studies, women with luminal B tumors have fairly high survival rates, although not as high as those with luminal A tumors [30,44,46].

Triple negative/basal-like 

Kathec- above is what I found on Komen.

thanks shelly56, for that info. i did read it the other day, and it left me as confused as when i started. luminal a and b both seem like they can be just about anything. heres the deal: at the place that angelina jolie went to (i went there first!), they did a core needle biopsy. what they found was 99% er+,29% pr, ki-67 antigen 21% (High), p53 <5% (Low expression). but at the top of the path report, it says : likely molecular phenotype: luminal b. And Her2 was 1+, by IHC., which would be negative. And gave me a modified bloom richardson 8/9.  So, for other reasons of my own i went to another treatment place, nationally recognized, where they found: 95%er+,10%pr+, her2 equivocal. (2+) by ihc.  25/30 nodes positive for macro mets. assigned me a bloom scale of 9/9. histologic grade, with "occasionally very large and bizarre forms".!!!! and even though i cant find that piece of paper right now, from the FISH test for her2 positivity, i do believe that what it showed was also equivocal. but i remember reading on it, that they were going to treat me anyway "as if" i was her2 positive, and i did recieve a full course of herceptin. but on that same piece of paper, i also rember they were trying to figure out whether i was indeed luminal b. altho nowhere did i see where they did a p53 , or k1-67. i think they said it wasnt reliable, at least that is what they tell me, and in anycase i would be recieving chemo. but i really want to know. and i know when i go to see my breast surgeon in the middle of the month, we are already probable both dreading to see each other, and she wont want to answer anymore of my questions, becuse my tratment except for endocrine therapy is over. but since i "failed" arimidex, (boy do they need to find a different vocabulary,) and am doing tamoxifen, which i am also rapidly failing, i thought i had read in pubmed somewhere that tamoxifen isnt very effective with luminal b. thats what this is all about. i am trying to find evidence for my next visit with onc and the bitch, i mean surgeon. okey dokity. thanks anyway.

I'm due for my 3rd Zometa on February 15. Previous infusions gave me no SE at all. 

Is everyone doing it every 6 months?

Maggs, I have had one infusion of zometa so far.  I'll be getting it every 6 month for 3 years.  I get a Zoladex injection every 28 days.

ok, so here is what my NCI onc had to say about Zometa and metformin. 

Zometa - only given to women who are post menopausal and/or women who have either had their ovaries removed or have them shut down via lupron. Not useful for someone like me who is pre menopausal and taking tamoxifen. In her opinion, it was all the rage to prescribe Zometa several years ago but they have since determined that it not as useful as once thought. She only knows if a handful of women currently taking zometa as a preventative measure. She gave me some reading material which I will get to later tonight. 

Metformin - Dana Farber (where I am treated) had a clinical trial going using metformin. Trial is currently closed and she prefers to wait for the results before prescribing. Data should be available in about 12 months. 

Now I have some reading to do!  Sorry for the typos....using an iPad mini. 

Thats not a site I'd put any 'belief' in.  Really bogus.

sorry...I should have been more clear. Melissa is right, it's the trial number/name. 

Mardi, my onc said the same thing as your onc.   I believe the ABCSG12 trial and follow suggest that ovarian suppression and tamoxifen may help reduce recurrence ine bone in premenopausal women.  I have not had a period since chemo began and I get Zoladex for ovarian suppression since chemo ended.

I dont believe the AZURE Trial allowed anyone to use ovarian suppression and was not a repeat of the ABCSG12 trial.  

Mardi, mostly hot flashes for me but that could also be the tamoxifen.  I have various aches and pains not sure that I can blame it on one specific thing.  I work full time plus some and miss my daughter's dance performances.

Mardi, I was on Zometa after finishing chemo and rads. I started every 3 months, than 6 months, and when I finished, my onc never discussed it other than that I thought it was worth me doing the infusions.  The only SE's I had were a little flu like feeling the day after and then I was fine accept for severe bone and joint pain, but that was probably the Arimidex I was on at the time.. I honestly don't know how preventive it is for someone like me right now because After the Arimidex, I tried Tomoxifen, and SE's were so intolerable, my Onc asked me to try Aromoasin.  I stayed on that a few months and couldn't handle that either, and so for the last year I've not taken any thing.  It's a quality of life issue for me right now.  I will be seeing my Onc on Thursday of this week, and he will not be happy I went off the Aromasin.  I want to have some serious discussion with him over hormonals, and my prognosis without them.

Oceana