1 super simple question

Pure

I heard that with er pos our reoccuerence rates go up significatly year 5-8. Anyone here this and know how high it goes up? My er was 98 so I am pretty estrogen driven.

weesa

Hey PureE, yes we hormone positive breast cancer crusaders have a higher risk relative to other types of bc, especially for the first 12 years. I have heard varying statistics of how high. Nearly half of recurrences occur after five years. IBC breast cancer and triple negative don't have much of a chance after 3 to 5 years. The reason, I have been told, is because the cancer cells hide out in the bone marrow when they are er pr receptive and something activates them years later. You will see some reports here of recurrence after 13-19 years.This is one reason why many oncs are advocating Aromatase Inhibitors for ten rather than five years.

BTW it is snowing here--really glorious! Think it will hit you soon. We should have snow all today and tonight.

Pure

so if your GOING to reoccure 50% ake place in year 1-5? My doc told me 1-3. So confusing....

Yes-it is snowing here-it is sooo pretty!!!

weesa

PureE, Yes it is confusing and maybe some other girls here will know more than I do--don't heed the statistics much, myself. And I think the Ai'S being relatively new, we don't know what ten years and fiften years out looks like for er and pr positives who have taken them a long time.

It is scary, but you get used to the fear.

Still snowing hard here--looks like we have between 4 and 5 inches with no letting up yet!

Husband11

There's no point comparing the peak of recurrance of hormone receptor positive breast cancer with other types of breast cancer, as that ignores the most important question, rate of recurrance.  Hormone receptor positive breast cancer is one of the more treatable forms of breast cancer, and as much as I hate to say something negative about other forms prognosis, you may not find a lot of recurrance in some forms, say 10 years down the road, because either the patient died within 5 years of diagnosis, or they had no spread from which recurrance could sprout.  Hormone receptor positive is typically slower progressing, and that's a good thing, and explains why recurrance can take a long time to be apparent.  Bev's oncologist said recurrance peaks around 2 years from initial treatment, but that might be somewhat an opinion, and also has got to vary greatly depending on the stage it was at when diagnosed.  I believe once you make it to a certain point in time, say 5 years, the risk of recurrance gets lower every year thereafter.  Actual rates can only be speculation, as treatment keeps evolving.

dsub

Does this mean that if your are 98% er + and 97% pr  and your cancer was a grade III, your recurrance will be after the ten year aniversary date? Mine has created it's own blood vessel and was wrapped around a nerve. So far all scans are clear except bone scan which they say is arthritis.

Anonymous

I'm ER+ 100% and PR+ 99%  All these numbers really get confusing to me because I've heard different things.  I'm Grade 1 Her2- So my recurrence rate is what?  I haven't really discussed this with my onc since the first visit when he told me I had a 50 to 70% chance of recurrance without chemo and treatment.  So now I don't know and am not sure I want to know all these details

Pure

Shana-your rate of reoccurence is really low. Your bc is considered early stage. My guess is yours is less then 10%.

I had a smaller tumour then you but I had 12 out of 19 nodes.

I had super big margins and they were clean, no nipple or skin etc  involvement.

I am er/pr pos and her neg but again lots of little nodes. When I got diagnosed I felt great so I am hoping that is a good sign and I still feel really healthy-except in my mind.

Husband11

The higher percentage ER+ and PR+ seems to be associated with a more favorable prognosis, and better response to SERMS like tamoxifen, and aromatase inhibitors.  So its a good thing.

barbe1958

Timothy, your first post was terrific and made a lot of sense until the last line. The risk of recurrence gets HIGHER after 5 years for the very reasons you quoted. Also, if you consider that most women get Tamoxifen for 5 years, the recurrence rate after the five years makes sense. I think that's why a lot of oncs are saying to take it as long as you can stand the SEs.

I, unfortunately, got nothing but the surgery. I have mixed emotions about that....

Pure

barbe-can you go back and get an AL or is thre a reason you only did surgery. The reason I say is the bc advocate I work with says that is you didn't get the right treatment upfront but haven't had a relapse it's not to late to go back and get the further treatment.You might have personal reasons so sorry if I overstepped there:)

Husband11

At some point in time the rate of recurrance must start to drop off, because if the cancer hasn't resurfaced, it must have been cured.

 On the subject of tamoxifen, the benefits show up 15 years down the line.  When they compare women who took tamoxifen for 2-5 years vs those who didn't, the benefit lasts far longer than just the treatment period.

Diana63

Timothy, thank you for your last post, I have been rethinking Tamoxifen but now the only way to get it from me is to prey it from my cold dead hand

sushanna1

Timothy,

It is my understanding that breast cancer is never "cured," at least not ER positive.  The risk declines after 5 years, but at some point starts to rise again.  Perhaps a real scientist will log on and explain the statistics.

Pure

well my mom is considered cured- er post stage 1 and no reoccurence after 23 years. I know they don't like to use the word cured but what else do you call it when 85% of women go on from bc and die of something else?

theresamini

Thank you Pure E for your last response. I am stage III Her2 estrogen pos progrestron pos and what ever the 3rd one was neg but never knew my numbers. I read something tonite that just ditched my confidence after left mast and 2 rounds of chemo. No one believed nor could they find my bc till my lymphs turned into small rocks. I have found I cannot deal with too much information and there is too much out there on Her2 and it took me 4 months to  ask my doc to repeat what he said in july. I didnt know there was a "good" or "bad" bc. Anyways thanks for the ray of hope from you all. Praying for ten years plus....

Husband11

It really is one of the worst aspects of breast cancer that they can never really say "cured", except in retrospect when women live out their full lives and die of something else.  My wife likens it to a nightmare of a killer, that continues to pursue you, remains at large.  My mom has a friend that had a mastectomy, the old kind that included pectoral muscle, back a good 25 or more years ago.  I don't know enough about back then to know whether they did hormone receptor testing or not.  Anyhow, she is doing fine, in her late 70's now.  I would have to conclude that she was cured.  My wife's oncology surgeon (if that's the right term) to us that they could cure 60% of patients, but of course that leaves you forever wondering which group you fall into.  All we can do is pray, pray for a cure for all.  I believe its not far off.  There are so many hopeful ideas being explored right now.  More than we've heard of.

barbe1958

I think why they say so many women die "of something else" is that traditionally breast cancer used to be diagnosed in older women. So...that alone can add in a bunch of other issues like heart, etc.

With the advent of Herceptin, it is the HER+ women that have the miracle breakthrough in research! It's been the biggest leap in treatment in the last 5-10 years if I've read correctly on the board.

As for future treatment, my surgeon said "let's save the big guns until next time". I'm considering getting a second opinion but hey, I've lasted a year and believe it or not, that's more than I expected!

Pure

I believe Zometa will be the next breakthrough and well my foolish self believes in a cure:)

I to choose tbelieve my mom is cured.

I am going for a non reoccurenece (aka a cure:)

KerryMac

From what I understand, your risk of reoccurance is highest in the first two years. The risk for ER+ doesn't rise (ie get higher) but stays higher relative to other types.

I believe for Stage 3, your risk of reoccurance is about 10% after 5 years. So, for those who make it 5 years, 90% will not reoccur after that time.

Pure

only 4 and half years to go:))  Thats 9 or 10 people wont reoccur.... I like that odd.

KerryMac

And, remember, you only hear of the ones that DO.

Of my Chemo group, a good number of which were Stage 3, only a couple of us still post (hi apple!!) I will probably never hear from any of the others again on these boards, unless it is with bad news.

I was just browsing around here the other day, saw a post by a woman diagnosed in 1990, with 6 positive nodes. I've never even seen hr on the Stage 3 board. There are tons of others like her I am sure out there, just living their lives.

Beverly11

Quite the discussion.  I like your conclusion Kerry.  We really can't compare ourselves to others as they have had a different chemo treatment.  We have all had better treatments.  We don't even know the details of other individuals pathology report often.  Did they have lymph node involvement?  My dad brings up a lady who has done very well and of course I never correct him.  But, I have no idea what stage, grade she was or if any lymph node involvement. 

 Everyday, all I can do is my best.  Eat well, exercise, take my tamoxifen and nutritional supplements and pray.  Live in the moment.  

Off to make a veggie smoothie...

Take care everyone.

Bev

barbe1958

I am always optimistic...there is a daughter-in-law of someone at work here who got the whole gauntlet; chemo, rads and surgery. I got nothing but surgery. It'll be interesting to see what happens to each of us.

Let-It-Be

Thanks for your positive spin Kerry!

Beverly, you're right, we just have to do the best we can.  AND, we just don't know!  That's all there is to it. 

I saw my oncologist on Thursday and it was a really unfulfilling appointment.  I left there again thinking, they don't know, I don't know.  I can't control an outcome, I cannot attach to being cured, I can only do my best and live right now.  With that being said, now off to make a veggie/fruit smoothie too!  I'll drink it to all our health!

KerryMac

You know, it was huge for me when I understood that noone knows. No-one. So, you have to sort of let it go a bit, and just move forward the best you can.

apple

exactly Kerry.

Pure

I look forward to getting to the point of letting go. I am 4 months into this and well I never thought emotionally I would get to the place I am now. I am so thankful chemo didn't make me ill b--c omg I would be an emotional wreck. What holds me together is how good I feel despite being pregnant. I look forward to each day and I count it off towards my 3 years:) (I know I am nuts) but I am very type A so each day in my pocket is 1 day I beat the crap out of this disease.

weesa

PureE, when you first started here, I couldn't have guessed you would be where you are today, emotionally, either!  I'm delighted to see you so strong. You must be a tough, resilient gutsy woman. Looking after three little kids everyday, being pregnant, and doing chemo...I think I could do these too, one at a time.

Pure

Thanks Weesa:)

apple

4 months is not long PureE 

where was I ..  in the middle of chemos.. bald as an egg.  balding sucks.. what an odd thing we must live with to be healthy.