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-   -   Recurrence rate after 5 years for ER+/PR-/HER-2+? (https://her2support.org/vbulletin/showthread.php?t=62327)

bejuce 12-09-2014 03:41 PM

Recurrence rate after 5 years for ER+/PR-/HER-2+?
 
Hi HER-2ers,

Last Friday I learned of a fellow BC survivor who just found out her cancer recurred in her bones and liver at full speed. She was diagnosed shortly after me while and is 5 years out. Her tumor was ER+/PR+/HER-2-. I know estrogen fueled tumors can recur between years 5-10 at a higher likelihood than us HEr-2+ folks. But how about when your tumor is mostly HER-2, PR- and only 30% ER+? Does the recurrence pattern follow that of ER+/HER-2- tumors or is more aligned with the HER-2+/ER- ones? That is, how anxious should I be now that I am 5 years out? My friend's news has left me sad for her and her family and worried about me. Can anyone comment on the latest and greatest HER-2 recurrence rate knowledge?

Thanks!!!

Bejuce

Lucy 12-09-2014 08:42 PM

Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?
 
I can't speak to the 5 year recurrence rates but I did want to say something. First, I totally get being concerned about the situation but the fact is, you can't (or at least shouldn't) compare your situation with your friend's because everyone's experience with cancer is unique. For me, I'm aware of the things that could happen but I don't dwell on them because I figure if they do happen, I'll need my strength to deal with them then and I don't want to waste the energy now waiting for them to happen. I figure I can cross that bridge if I ever come to it and I try to stay optimistic that I won't ever come to that bridge. That's all I can do because I have no control over whether or not it comes back or spreads. But I do understand your concerns and I know it's easier said than done but try not to stress about it and maybe talk to your doctor about your concerns - s/he could more directly speak to your specific situation. (sending you cyber hugs because I feel like you could use a hug)

P.S. love your picture. :)

JennyB 12-10-2014 02:17 AM

Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?
 
Bejuice I too have often wondered this too as my tumour was 50% ER but that was weak and patchy. I use this information to talk myself down when I do start thinking of it persuading me that it is more favourable helps a lot!!

Becky 12-10-2014 09:08 PM

Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?
 
I am over 10 years out and I was Her2+ (strongly), Er 50% and PR neg. I am still here and so will you

Jackie07 12-10-2014 10:10 PM

Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?
 
Can't believe it's been 11 years and 4 months since the first diagnosis of my breast cancer.

Statistics is just statistics. It paints an overall picture, but can't guarantee each individual case will be the same.

My recurrence was found in the fourth year after my initial diagnosis in 2003. Herceptin wasn't available back then so I did six rounds of FEC plus standard radiation treatment. I'd read about the high recurrence rate of and Herceptin for Her2, and asked (the surgeon) for a mastectomy and (the oncologist) Herceptin. The lady surgeon persuaded me otherwise and I underwent a lumpectomy plus radiation plus chemo (Herceptin wasn't approved for early stage yet and the medical oncologist told me FEC was just as good.)

The following three years I continued to have very painful mammograms. But because the report had been 'clear', I thought I belonged to the group of women who'd always have painful mammograms. Until I'd become so weak/tired/ill and had to take off from work. Went to a weekend clinic just in case my employer needed a doctor's note, and that's when I (and the weekend clinic physician) realized my physical problems might have been related to the breast cancer. Because at 2.5 cm (about an inch in diameter) it had become 'palpable'.

The previous mammograms did not missed the tumor. It was the doctors who read pictures had missed it. They had misinterpreted it as 'scar tissue'! I doubt this day and age anyone would make the same kind of mistakes as Her2 is now a well-known subset. But you never know.

Guess what I was trying to say is, don't worry about the statistics. Don't let down your guard because of the statistics. Be your own best advocate. Know our body well. And when in doubt, go to the doctor. When in doubt of the doctor, go get a second, even third opinion. Hopefully the technology now is so good (digital and all) that no 'hard to interpret' excuses will ever be given for any mis/delayed diagnosis.

By the way, the lab work usually will shed some light as well. I can't count on mine because I also have five slow-growing brain tumors (unrelated to bc) in the center my brain. The official classification of this rare type of brain tumor has been changed from Grade I to Grade II, so my 'rap sheet' has now listed it as 'brain cancer'. Guess I've had brain cancer since I was born ... (yet still here - what a miracle! :)

Jackie07 12-10-2014 10:58 PM

Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?
 
Statistics is just statistics. It paints an overall picture, but can't guarantee each individual case will be the same.

My recurrence was found in the fourth year after my initial diagnosis in 2003. Herceptin wasn't available back then so I did six rounds of FEC plus standard radiation. I'd read the high recurrence rate and high proliferation rate of Her2 upon the diagnosis in 2003, and asked for a mastectomy. The lady surgeon persuaded me otherwise and I underwent a lumpectomy plus radiation plus chemo (Herceptin wasn't approved for early stage yet)

The following three years I continued to have very painful mammograms. But because the report had been 'clear', I thought I belonged to the group of women who'd always have painful mammograms. Until I'd become so weak/tired/ill and had to take off from work. Went to a weekend clinic just in case my employer needed a doctor's note, and that's when I (and the weekend clinic physician) realized my physical problems might have been related to the breast cancer. Because at 2.5 cm (about an inch in diameter) it had become palpable.

The previous mammograms did not missed the tumor. It was the doctors who read pictures had missed it. They had misinterpreted it as 'scar tissue'! I doubt in this day and age anyone would make the same kind of mistakes as Her2 is now a well-known subset. But you never know.

Guess what I was trying to say is, don't worry about the statistics. Don't let down your guard because of the statistics. Be your own best advocate. Know our body well. And when in doubt, go to the doctor. When in doubt of the doctor, go get a second, even third opinion. Hopefully the technology now is so good (digital and all) that no 'hard to interpret' will ever be used again as an excuse for any mis/delayed dianosis.

Your lab work usually will say a lot of about your physical condition. I can not depend on mine because I've always had the brain tumor present (now 5 in the center space that's been stretched out by the original one). But as long as I am maintaining a good weight without skin problems (not counting the type caused by accidents like being scratched by the feral cats - taking antibiotics right now:) or pain and having good appetite, I know I'm alright.

Jean 12-13-2014 06:16 PM

Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?
 
I was 90% estrogen positive...pr- will be celebrating 10 years this Spring (right behind Becky). Arminidex has changed the landscape of this disease for us. My onc.
was very encouraging and at 5yrs. wanted me to stay on another 5 yrs.

Best Wishes to All.
Jean


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