TRIPLE POSITIVE GROUP

writer - excellent! Dealing with some skin cancer removal right now - I am a California native, so I am paying for all that sun I got as a youngster!

goutlaw You're done:

Writer Congratulations on 4 years. I'm right behind you at 3+ years. I too am node negative but with a huge tumor (5.5cm IDC plus 1cm DCIS). Being node negative is of course a positive. I believe that the HER2+ part is more likely to recur in the first 2-5 years. I think now they just base it on the ER/PR status. What does your onc say? My gut says your in a great position to not see a recurrence from this diagnosis but I'm not oncologist and I don't have a crystal ball

Do note that 91% chance over the ten years is more on a slope. You had a higher chance of recurrence in the first 2-3 years. Less now. As you continue to be disease free that 91% chance actually goes up. So your chances right now of staying NED is actually higher than 91%. Hope that makes sense.

LeanneF you won't know till the day you get there. I think it was so early in the morning that I was still numb. My blood pressure has yet to get as low as it was that morning… granted I was in amazing shape back then. And here's a video for you for your rebellious celebration Remember to say "cancer" at the very end: linky

LizA17 I was in a grey area for Rads too. Typically for tumors 5cm and above they do radiation. I think because of the location of my tumor they were worried about my heart/lungs etc damage from radiation. My rad onc said I was getting so much treatment (chemo, Herceptin, BMX with nodes, Anastrozole) that she was giving me a pass. Granted you have nodes but your tumor is smaller. You got the same treatment as I did.

Hair grows slower on Herceptin.

Happy dance to all the chemo completers!

On the bra front, I went a lot smaller than I was originally. I wear a bra most of the time, but occasionally go without. I wear both wire and underwire. I guess I should qualify the smaller part. I am a lot smaller physically, but my bra cup size is much bigger! DD. I think it is because they are so much wider. A double d feels the most comfortable also.

I was also given a pass on rads, since I chose to have the mastectomy.

Oh....and I was scared out of my mind for the surgery. It takes a long time! That and I was still working on the whole anxiety thing. A friend who is a surgical nurse at the hospital I went to asked if it would be helpful if she was there during surgery. She works with my ps a fair amount. I said absolutely. So, after I was wheeled in, as they got ready to put me out, she held my hand and said she wanted someone who loved me to be the last person I saw before I went to sleep. It was so comforting. I also wrote personalized letters to each of the doctors and gave it to them before surgery. It had a picture of my family with a note that said I wanted them to make sure I came back to them and then personalized the rest. The PS, I added that I wanted to be number 1 on his reconstruction page, the anesthesiologist, I added that I did not want him reading magazines while I was under and to stay focused, and the BS, I just added a note that thanked her for being such a pitbull in finally finding the tumor.

I just felt it made me a person to them and not just another surgery. They actually all thanked me,saying it did exactly what I had hoped.

Moon and Lago were right...very little pain. I had a pain pump that lasted four days, so I was stoned the whole time, lol. Make sure you get one! I rarely took a pain pill after the first 24 hours.

I only lasted a couple nights in the lounger too. I just couldn't sleep. Did the same thing as Lago. I had a medical wedge pillow and then a million other smaller microbead ones. I did use the lounger during the day a fair amount as it was easier just to lay back and nap.

Had my rib X-ray. He did a lung one also. Both negative. Good to hear, but I would like to know what is causing the tenderness at the bottom of my ribs on the right side.

Several pages back, I posted a link to mammo-Graham's. I made them Tuesday night and dropped some by my docs' offices. Huge hit! And they are delish.

Hello all,

I found out officially today after all pahtology was sent for reexam from biopsies and surgery that my breast tumor was ER+PR+HER2- and my node micromet was ER+PR+HER2+ . The explanation was Heterogenous vs Homogenous tumors. I am told it is rare. I still really don't understand.... How can something in my breast, travel to my node and change? Could it be 2 separate tumors and not a met to the node? My treatment will continue as a triple positive with herceptin. Does any one have any experience with this and might help my confused brain. Tried google, not much luck.

Vivian

Pbrain,

Thanks. I have the report from the micromet in node. It's 3+ with 100% of cells being HER2+ by both tests. I don't have report of the breast yet. I will ask Onc for it. It was my Onc who gave me the explanation.

Vivian

Welcome JK and BeBe-and sorry you have to join. But you will gain so much for this group. As Moon said-find the group starting chemo the same month as you or surgery your month. My July 2012 chemo group are now some of my dearest friends. I also am taking the scenic route with many detours along the way. Still looking for the end of the trip.

Take a list of questions to your appointments. I took my iPad with a list in my notes and would do google searches in the office to look for answers if I needed to.

Check out this shopping site for women living through breast cancer. Fancy site high end shopping but not too bad: curediva.com

It loads slowly. I'm thinking it's a fairly new site.

Lago:  thanks for the website info.  I have already taken a peek and the clothes look pretty good

Ashla:  great info to know.  Looks like long term cardio check up is in order for us gals. 

I had a MUGA before chemo/herceptin an that's it. Granted every time my onc/NP sees me one of the questions they ask is if I have any shortness of breath. Also I guess when I tell them I powerwalk 3-4 miles daily they probably think I'm OK. Granted I do wish I got a MUGA when I finished Herceptin but my gut says I'm fine.

My Oncologist called today. I have 2 more Herceptin treatments and thought I would be finished. He has now suggested having some radiation. He said his past practice was anything under 4 pos nodes-no radiation after BMX and very clear margins. He says new studies show 3% advantage in cure rate with some radiation for people with my case. 2 positive nodes. I guess I will do it if it means extra protection. Has anyone else had this kind of situation?

In terms of the pain pump that lasted 4 days - I had something like that - they inserted 2 catheters in my back which stayed there and were attached to these baseball like things which seeped a constant drip of pain medication. My problem was that the stupid anesthesiologist punctured my lung when inserting a catheter and it was a very unpleasant complication of an otherwise normal surgery. Afterward my plastic surgeon said that the breast doesn't hurt a lot after surgery - that he doesn't like these catheters. If I had to do it again, I wouldn't do the catheter thing.

lago, thanks for the input... very helpful. Flaviarose, I had my reconstruction on the other side at the same time as my surgery. Cancer was on the left, and they had to take out tissue that meant I'd go down a cup size (fine by me!), so the plastic surgeon did a reduction on the other side at the same time. Recovery from that surgery went very well for me. Pain that first week, but not as bad as I thought, and I was skiing 3 weeks later (fit in one great ski weekend before starting down the chemo road to misery).

A friend of mine recently had a breast reduction for cosmetic reasons from the same plastic surgeon, and she had a rough time with the pain for the first two weeks-- it was a lot worse than mine. But she had really large breasts, so maybe that's a factor. Or maybe my adrenalin from the whole cancer thing helped me recover faster. I don't know. Anyway, it was not that big of a deal for me.

One thing I can report, 3 years and 11 months post-surgery-- it's amazing how minor the scars are, considering what they did. (Totally freaked me out that he had to remove both nipples and sew them back on.) You can barely tell anything. And although they could not guarantee if the numbness would ever go away, it did-- on the reconstruction side, it was back to feeling normal within a year, and on the cancer side, in about 2 or 2 1/2 years.

And it was nice as a then-51-year-old to not even need a bra (as a C cup middle-aged woman)! Alas, age/gravity eventually comes back into play.

Regarding post herceptin rx heart issues. My MO told me that since my ef made it thru treatment intact follow up wasn't rq.

I read all kinds of stuff and my understanding... And I am not an expert for sure... Is that Dr Fisch has the most up to date research to back up his answer . It is just now that the first 10 plus years of treatments have passed. There were some protocol changes early on so it's just recently that they're discovering this.

With the advent of increasingly improving &targeted treatments for her pos BC I believe most of us are more likely to have cardio issues than recurrence .

I am going to ask for cardio follow ups.