What is our prognosis, anyway?

mary625

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.  

Tomboy

YAAAY!!!

Anonymous

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

geocachelinda

I guess I have really been in denial.  I just did the Cancer math and it is not pretty.  I am a Stage 3C with 10 lymph node.  I have had chemo, rads and a double mastectomy.  I am not sure if the cancer calculator takes treatment into consideration.  It said it is the outcomes in a certain time period, regardless of treatment.  I have a 65% chance of dying in the next 15 years.  My mortality rate is cut by 20 years.  I am 47 now and was diagnosed at 45.  People in my family rarely live past the age of 75.  Both my grandparent's died of heart attacks, surprisingly.  No cancer except my cousin.  I feel like I was just told that I will probably die by the time I'm 55. 

geocachelinda

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! 

ziggypop

geocachelinda - Remember too that cancer math (and any other prognostic program are out of date as they are not 'up' on current treatments - nor can they add intreatments developed between mow and the 25 years that it predicts that you have to live. : ) 

We'll all be old women rockin' on a porch somewhere laughing about how they used to do these horrible but wonderful things to keep people alive when they had BC. 

lindacam

Hi.  Where is this online tool?

ziggypop

hey linda - try this link : http://lifemath.net/cancer/breastcancer/therapy/index.php

but be careful not to scare yourself like geocachelinda did. 

Tomboy

thats fine, but does not have tch chemo, so it must be rather outdated.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?

Anonymous

Kathec:  Yes, I asked and onc said I was luminal A.  You can look it up but what I took from it was that it deals more with being ER/PR pos or neg. 

Shelly

Anonymous

Subtype	These tumors tend to be*	Prevalence (approximate)
Luminal A	ER+ and/or PR+, HER2-, low Ki67	40%
Luminal B	ER+ and/or PR+, HER2+ (or HER2- with high Ki67)	20%
Triple negative/basal-like	ER-, PR-, HER2-	15-20%
HER2 type	ER-, PR-, HER2+	10-15%
*These are the most common profiles for each subtype. However, not all tumors within each subtype will have all these features. ER+ = estrogen receptor-positive ER- = estrogen receptor-negative PR+ = progesterone receptor-positive PR- = progesterone receptor-negative HER2+ = HER2/neu receptor-positive HER2- = HER2/neu receptor-negative
Adapted from selected sources [30,40-44].

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.

Anonymous

I've been trying to research the toxicity SE's of the Aromotase Inhibitors, especially because I'm seeing my Onc next week for a regular follow up and I want to get all my questions down to discuss with him as to why I don't want to go back on my Aromosin.  I've been off it for almost a year and just can't bring myself to get back to my adjuvent hormonal therapy.  Here is an article I found that makes me feel even more strongly why I don't want to go back on them as a postmenopausal woman.

Click here: Aromatase
Inhibitors Toxicity Affects Overall Survival

Oceana

Tomboy

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.

Tomboy

o, and the B(ull) S(hitter) also said my tumor was probably there for eight years, making me 44. i will be 54 this year. hers to more stupid birthdays surrounded by more doctors.

Maggs09

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?

Mardibra

I have an onc appt this afternoon where I will be inquiring about Zometa and Metformin. I will update later!

dutchiris

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.

kim40

Hi ladies  I have been getting Zometa now for almost 5 years .  The only SE that I had was after the first one where I felt like I was ran over by a truck  I drink a lot of water the day before and it helps.   I pushed hard for the Zometa before he finally gave in.  I asked aboug metformin and was denied the last gime.   I have an appt with him the end of this month so I will be pushing for it.  

Mardibra

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. 

Mardibra

if anyone wants to get a jump in the zometa reading, she told me to google the trial and it's follow up info.  Google ABCSG12 follow up. 

Kicks

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

MelissaDallas

Kicks, that is not a site, it is the study number. You will get results for reliable sources such as Pubmed & The Lancet.

Mardibra

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

Momine

Mardi, that is exactly what my doc said about zometa too, and the point about menopause actually pertains to menopausal state at DX, not by end of treatment. He said he would only start giving it to me if I became osteoporotic (which I may well be already, I am overdue for a DEXA). Otherwise, he feels it is needless risk of SEs etc.

dutchiris

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.  

Mardibra

I have also not had a period since chemo began. I had an ovarian cyst removed several years ago so I only have one ovary. I think I need to start reading up on the ovary suppression drugs and see if that might be another gun in my arsenal. Do you have any SE's with the Zoladex?

dutchiris

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.

Mardibra

hmmmm. Thinking. 

Anonymous

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

Denise-G

Just wanted to throw some more hope into the mix --

Today my sister ran into a gal she used to work with years ago.

This gal had BC and was Stage 3C - 10 cm huge tumor and LOTS of nodes (close to 20 or more)

She is 8 years out and doing well...

Makes all of us feel better, doesn't it?