TRIPLE POSITIVE GROUP

I did BMX with expanders. Had nodes removed on both sides. I do believe I took the bus to do a freelance job at my former employer 3 weeks afterwards. I didn't have any complications with surgery.

Mommato3 - re: this "How long is it going to take before I stop freaking out on an almost daily basis?"

I wish I had an answer to this because I still have periods of daily freak-outs.   

I will tell you this:  I have gone for periods of time where I'm not freaking out about it but it's usually been when some other crisis has hit.  

I'm guessing many of the others here will tell you it just takes time.  

I had a BMX and there was never any discussion of doing chemo first.  In retrospect, maybe I should have found my oncologist first but I was such a babe in the woods at the very beginning that I thought my breast surgeon WAS my oncologist!

Here's one way I looked at it when I was at your point in the so-called journey:  everything that had cancer in it was removed from my body - including the micromet in one node.  I had a PET scan prior to starting chemo and it was okay.  

On May 9th you had a tumor removed from your body.  You divorced it.  It's in a pathology department somewhere, totally separate from your body.  You had 0/4 nodes.  If you have a scan prior to starting chemo you'll be starting with a clean slate.  Even without a scan, you had 0/4 nodes.  Everything you're doing now - going forward - is cleanup work.  That's how I got myself through the part you're at right now.  In some ways,  I felt safest during the chemo/herceptin part - like I was wearing a big, fat toxic blanket that wouldn't allow any cancer to survive. 

Just got back from my onc. Helpful for my DH. No big surprise for me. She feels I am at high risk because of the size of my tumor. She says there are no stats on years out for triple positives who have been treated with Herceptin and they base the stats on anyone who is hormone positive.… and no stats for staying on for just 3 years. She states that they see hormone positive as a chronic disease like diabetes. We could (or in my mind could not) recur at any time. She wants me to continue with something. We are trying the Generic Aromasin first for 3 months. If I still have issues she says that Tamoxifen is better than nothing. She has never been a big fan on Tamoxifen. She also claims that Tamoxifen in triple positive is as effective as in those who are just hormone positive.

And of course she said that she's not so sure the drug is causing me to be depressed. I then turned to my husband and asked if he noticed a change once I got off the drug and he said yes. I explained that I no longer have sleep issues and I am not in tears since I've been off the drug. (BTW depression is listed as a SE.)

I saw this in the New England journal of medicine:

Targeted treatments (medicines that target the HER2 protein) have improved the prognosis for HER2-positive patients. Remissions can also be lengthy, offering another bright spot in prognosis. NEJM reports that remission can last more than 15 years for some patients.

Not all women die of breast cancer. That's what I know as do many of the survivors that I know. I'm hoping for 15+ with no recurrence

My question is what about those women that are still with us who were diagnosed before they even tested for her2?

lago you made my day. I'm having another down day. That's too many in a row. I've been so positive and strong. Now I am scares of tomorrow, afraid to eat!

Here we are going away for a few days and I am back to bring convinced that I won't be around in a year or two

Man I hate this!

I mean cancer of no cancer, I know that there are no guarantees for anybody!  But I'm already planning in spending $ for big trips because I might be gone in 1-2

I know that this is just a phase and mostly happens when I'm alone all day. I think to much and scare myself!

Stupid!!!

Footballnut  I have the same problem when I'm alone.  All these thoughts keep popping up in my head.  My three kids usually keep me so busy that I don't have time to focus on it.  

That 15 years sounds fantastic to me.  I mentioned to my nurse coordinator during my MO appt Monday that I would love to go 20-30 years without ever seeing this thing again.  She said of course, we all want to see our kids grow up.  She told me a story about a woman who had a recurrence (couldn't remember where) that has been getting weekly Herceptin for 10 years.  I know she was trying to help by making me see that even getting mets isn't a death sentence but that really isn't what I would like.  I went online today to find happy endings for people with BC.  I has helped to put me in a better mood.  

I'm in the middle of a move to another state.  My Mo has asked several times if I'm sure I want to start here and transfer.  Is he trying to get rid of me?  I said I wanted this started ASAP.  I think I'll feel better when we do something to start fighting it.  Ugg...I really hate all this.

Footballnut I can't remember where I posted this so I apologize if it was no this thread but we all think about the "what if"s Thing is if is in the middle of "LIFE". If you didn't have "what if"s then you would have LIFE… right?!

Personally I think something is in the air. I'm not having such a great day. Part of it was my onc was really trying to scare me into continuing with hormone treatment. At one point she started talking about not only was my tumor large but ILC too … and then I stopped her. I looked at her and said "What ILC? This was never mentioned to me before. I never saw it in my path report." She stated it must be a typo. Was pissed and freaked at the same time. She seemed to focus on it coming back.

Based on the info she gave me back in 2010: If I just did surgery/chemo and never did any endocrine therapy my recurrence risk would have been 30% (10 years from diagnosis). Granted doing it lowers it to 14% (10 years from diagnosis). I was a bit surprised she didn't pull that info out or run it again. Still surprised there are no numbers for Herceptin included in the formula.

Well my cat puked today. On my bed. And I have thrush again plus absolutely no energy,so this week sucks. But I also have the most incredible husband doing whatever he can to make me feel better! Life's blessings.                                               My biggest fear is not dying, (I'm older and my kids are grown so different perspective), but being sick and unable to work. Its why I have issues with chemo, I feel that in the long run I'm doing more harm to my body than good. But as much as I hate it, I'm doing it, mostly because of the way my bs can't even look me in the eye when we discuss the Her2 aspect of my tumor. Scary, unpredictable shit.

Some days I say it would just be easier to get hit by a truck. Its not always easy to be positive.

debiann you do realize you have a pretty good prognosis! No nodes, small tumor. That's great. HER2+ isn't as bad as it used to because of herceptin. Yeah chemo does some damage but you would be surprised how much your body repairs. Chemo thinned my bones but that would have happened anyway. It messed my my nails but not that bad. Little minor nueropathy in my left heel but  how many times have you heard me complain…  probably never because its so minor. I'm 4 almost years from diagnosis. I don't worry about chemo damage anymore. When you are going through chemo and a bit after you feel like you will never feel good again. You will.

Linda I do believe it was a typo and not one she made. She is very particular. A few years ago everything was switched to digital records. I remember when I was getting prepped to get my port out the nurse was concerned about "my recent stress test/hypertension"… WHAT?! 

Ended up it was a stress test of a 78 year old guy with the same last name as mine. Also another place I go (LE MD) has me using medication I put on my face for Rosacea on my vagina! People make mistakes especially if they just need to click boxes

Thanks for all the support and positive thoughts. I don't spend much time feeling sorry for myself, I think its a combo of steroid crash and God awful taste in my mouth thats getting the better of me. I am the person who takes care of other people, I'm not handling my new role too well.

Rozem when they figure out the stats it is specific to you and your treatments. Age is a factor, Family history, etc. You are younger than me (I believe) so that plays a huge part. Also AIs are a bit better than Tamoxifen. So just age/tamoxifen can change the numbers. I do believe the 10% stage III ladies onc is high

You were 42 and I was 49. Big difference. But DF's number sounds wrong. Actually yours sounds a bit high too.

I don't find it helpful to think about the stats.  If you have a 99% chance of a cure, but you're the 1%, stats were meaningless to you. The facts are some of us will have a recurrance, no way if knowing who, and would you really want to know anyway? Based on stats, I had a very low risk of getting BC in the first place, so stats have let me down once. The doctors don't know, studies contradict each other, they are just doing their best to either reassure us or warn us. Just gotta keep putting one foot in front of the other and enjoy life without endless worry. Easier said than done some days. I was on a predictor tool that said in the next 15 years I have a 10% chance of dying of something other than bc. We all have a risk of dying from something everyday, just have to learn how to not think about it.

Lago

So sad you're having trouble. I am seriously thinking of switching from anastrozole. At least for awhile. Gonna see how my 2 year DEXA is. My MO says he thinks I'm gonna take a hit.