HER2 positive survival and recurrence statistics

Hi - so sorry you are dealing with a new breast cancer diagnosis. I write a busy breast cancer blog and have heard from thousands of breast cancer patients.  It is my passion to help others.  My best word of advice is  stay away from statistics involving Her2 positive.  It will eat you alive and scare the heck out of you.  Most of them are old statistics and who knows who even created them!  You will do much better with treatment if you don't pay attention to statistics.  That's all they are.

 I was diagnosed in Oct. 2011 with Stage 3, Er+PR+ Her2+, 9 positive nodes...had chemo - had a heart attack because of chemo and major heart valve damage because of Herceptin and had to stop Herceptin after 3 months.  I was terrified.  My Oncologist sat me down, looked me in the eye, and said, "I don't want you to spend one minute worrying that you didn't have enough Herceptin.  God didn't say you need a year.  I believe you had enough."

I'm 3 years out and doing well.  I cling to those positive words.  Like the words my breast surgeon said to me after leveling all the bad news, "We can cure you."   I had those words painted on my dining room wall in large letters that can be seen from my entire house!  Those words helped heal me. 

Oh I get it being so tempted to read those statistics after diagnosis.  We want to know so desperately if we will survive.  But there will always be negative statistics. 

Sending my best!!

CuriousCarm-My BS, MO, and RO told me that the HER medications level the playing field to the statistics that are quoted for HER2-. 

Chrissie

Hi Curious. I have to tell you that I actually prayed that I would test positive for Her2. My BC was extremely advanced, ducts, lobes, nipple, 12 nodes pos, lymph and vascular involvement, and abit of a dirty surgical margin that could not be resected.It was a really nasty tumor and very invasive. My Onc was disturbed at me being Her2 positive , but remember that was 20 yrs ago, and there were no stats out there for non Stage IV herceptin results. Since I was er/pr neg and taking antihormonals wasn't an option I felt that having Herceptin would give me a chance. At my last Onc Check up. my Onc told me he felt I was in the clear.! (I do receive Zometa every yr to keep my bones healthy as well as daily glucophage prophylactively.

Hi CuriousCarm: After I finished Herceptin in April of 2008, I had no more bc-related medication. I did do a clinical trial for a year of a drug called Neratinib, but I think I was getting the placebo since the drug seemed to cause intense gastrointestinal side effects that I never got. I had a mammogram last Friday (I had a unilateral mastectomy) which was all clear, and I'm on a once-a-year schedule to see the oncologist.

Yep - just living life! Since dx, I've seen both my daughters' weddings, my son's h.s. graduation, had two grandchildren, retired from 36 years of teaching - many, many blessings.

Believe or not this is my first time posting but have been reading since 6/2013 when I received the news of Her2+ER-Pr-.  I was surrounded by my son's, their wives, and my niece with her four girls were visiting at the time.  I would sneak off and try to read about this weird thing and they would all stop me.  Good thing as it all sounded way too scary.

No chemo was not easy but yet doable, radiation was the hard one on me and I was the 1% that did not get their hair back until done with Herceptin.

One thing that helped me was I have a friend that told me to watch the movie Living Proof.  Then told me all about Barbara Bradfield as she is a friend of hers and helped her through a different form of BC.  Then I e mailed her and finally talked to her on the phone when my Herceptin was through in 8/1/2014.  She is still alive, you can Google her for encouragement.  One of the few threads I kept up with on here was Topic ER-,PR,Her2+ Roll Call.  It is a positive thread like most here, written by others who have survived Her2+.

I have some other health issues that have kept me busy, so lately I have finally been able to stop fighting and now I am falling apart.  I had my check up with oncologist the other day and told her it was so hard not to want to read statistics and again was it was the worst thing I could do to myself.

Once you make your informed decisions do not second guess yourself, stay positive and take care of yourself physically.  As a naturopath oncologist told me well over 10 years this might have been a death sentence but now people are living due to Herceptin.  We are fortunate as we have a treatment that has and is working.

I echo your feelings: I was diagnosed recently HER2 +.....March 23

I will have chemo ,radiation and herceptin...like you: it does not seem real...

.I wonder too can I handle it?

curious, we will handle this, now that a few months have passed and I have learned as much as I can,(I am a very curious practical, person) ask till you get it clear in your mind, Ask nurses, Drs, other survivors, find a Gilda's if you can. Read these threads, And if I can tell you 2 things, pray for strength and hydrate, hydrate, hydrate. You. Cannot drink too much fluids. I am into vitamin waters, probiotic fluids and coconut milk to soothe my esophagus cause of the caustic effects it has on me..". Cancer drugs are tough, not any clue it would be this tuff, but I feel stronger today, not real strong, but less fatigued with the fluids, and try to eat to keep your strength up. Hugs to all.

what is the femera in place of? And it's side effects? What part of jersey? I am southern, near Atlantic city area..

Hi! New to the boards but happy to be here. I was dx IDC stage 3, ER/PR-,HER2+ in 2010. I have had about 6 recurrences, mostly in my clavicle and neck, but earlier this year in my brain. I wish I could have gotten the positive results from the HER2 targeted therapies that so many of you have had. I have been on all of them and have always had the cancer return. So, now I am out of options and have been off THP for a year and finished stereotactic rads to the two spots on my brain in April. I know my cancer has returned because I can feel the same old lymph nodes near my collarbone enlarged once again.

I am considering doing nothing because I do not want to go back on chemo for a third time only to find it didn't work but left me with damage from side effects. I am dealing with severe pain in my shoulder blade area and in my implant due to the implant rupturing. I go for an MRI on Tuesday, then meet with the plastic surgeon on 12/7. I am praying he can schedule the removal asap because the pain is intolerable! Pain meds aren't working anymore and I now have a burning sensation on the outer area of my armpit. What this is I have no idea. I can't sleep or get in a comfortable position anywhere.

I was in the hospital last week for shortness of breath and the back pain and kept overnight. The good news is that my heart and blood work were perfect. My chest X-ray and the ct scan of my neck, chest, and abdomen only showed the active node in my collarbone as well as the ruptured implant. At least I am a bit relieved the cancer hasn't spread to my lungs or bones which is what I thought.

I am so happy so many of you have had long term NED from Herceptin or Perjeta. I wish you all a healthy future!

Barb

Curious Carm, be encouraged by the availability of the herceptin option! 

I am stage IV diagnosed 8 years ago in 2007: TCH  6 sessions, lumpectomy, IMRT radiation.  PR 20%, ER 85%, grade 3.  No underarm lymph involvement - though lymph node involvement under breastbone.  Mets to breastbone, ribs, cartilage near shoulder.   I have been NED since the fall of 2008.  I am still on arimidex generic,  Herceptin but infuse the every-three-week dosage every 4 weeks( instead of every 3 weeks) when I get my xgeva shot.  My biggest fear has been brain mets since stage IV folks are at a 30-40% risk of that and Herceptin does not pass blood brain barrier.  In the hope of mitigating that risk I take 3.5 to 4 grams a day of curcumin (Dr's best both C-3 and phytosome) with food & black pepper, and before breakfast 1500 mg. of green tea extract plus quercetin.  Both curcumin and green tea pass the blood brain barrier and have some reports of being anti tumor.  For the green tea extract, empty stomach and quercetin reportedly help absorption.   Per my oncologist, I will be on Herceptin as long as it keeps working, and if it stops working, there are now other alternatives.  I feel lucky to be so responsive to Herceptin.  For chemo side effects, look at the reports about Longo's experiments at USC on fasting and semi fasting.  They came out just as I finished my six chemo/Herceptin sessions. 

Hi MiracleMile,

I'm new at this when compared to you and still have many unanswered questions. How do you know when Herceptin stops working? Any marker in the blood that will indicate this? I'm half through my Herceptin treatment

Thanks for the great reading ladies - I am TP+++ and am new to this journey with only having had one round of chemo and Herceptin so far. When my surgeon told me I was her2+ he let me know that he considered this a good cancer, for treatment wise as there are so many things that can be thrown at it so to speak. I was totally gutted with the quickness of this cancer and the amount of spread that had occurred in such a short time. But I have the big guns out and top shelf all the way. I had a CT scan that showed no spread, two weeks before surgery and a further 5 weeks before chemo started so I am mopping up but still have in the back of my mind that something must have settled in that time......

Take care