TRIPLE POSITIVE GROUP

I have stage 1. 0/2 nodes. Clean margin. However, my onc prescribed six chemos after lumpectomy, followed by 20 radiations, with a year's Perceptin, and five years Endocrine. She did not explain why the treatment plan was so aggressive. All she said was my cancer grade was high (G3). I did not know the problem was my HER2 + until today, from a radiation oncologist. And I was DXed on Sep. 28.

I already had a CT scan that covered my chest and my pelvis because I begged for it. I did not have a CT scan on my head. My Onc does not seem to plan to give me regular CT scans later. She said after 5 years' endocrine, the rate of occurrence is 7%. But the prognosis does not seem encouraging. I guess we just live in fear, until someday we notice some symptoms.

And I used to be in perfect health. I never saw a doctor except for checkup. I never had a flu. I got a cold once every three to fie years. An athlete living a very healthy life style, I looked more than 10 years younger than my age of 66. That was before I found a lump two months ago. Now I am in constant fear of metastasis. I cannot believe I could fall from the pinnacle of health to the abyss of cancer.

And the deepest abyss of BC is HER2. Is it right? Do you know anyone with HER2+ who survived cancer more than 10 years ?

joanwill - yes, there are many 10+ year survivors, here on BCO. Some of them don't post often because they are out living their lives but they do come back to offer support and encouragement to newly diagnosed individuals like yourself. On this thread there are also many 5+ year survivors who are here regularly - I am one. Tomorrow marks the 6th anniversary of the mammo/ultrasound that led to diagnosis. Your oncologist is prescribing standard of care treatment, but with a smaller mass you may be able to have a gentler chemo, Taxol and Herceptin, which has been very successful for stage 1 Her2+ patients. This is one of the arms of the trial wabals refers to above - or you may be able to enroll in the trial mentioned, ATEMPT. With any lumpectomy you would require radiation, that is also standard of care, and the anti-hormonal endocrine therapy is standard as well. Wishing you the best, and please know that the period prior to treatment is often difficult and anxiety producing, but it does get better.

Joanwill - I mistakenly checked in to the discussion board before leaving the house last night to go coach youth cheerleaders, including my 12 year old daughter. I was a complete wreck after reading your final sentence:

And the deepest abyss of BC is HER2. Is it right? Do you know anyone with HER2+ who survived cancer more than 10 years ?

While you might have written it as a question, I was mortified. I spent the entire practice looking at my daughter trying to figure out how old she would be in 10 years and if she could handle life without me, will I see her graduate high school, college,etc. Where did you get this info? While no one has said anything other than "I have a good chance to beat this" - I have certainly not been told I have 10 years or less to live!?!? Needlesstosay - I was prompted to take a xanax when I got home because I couldn't get your post out of my head.

I have pretty much the same as you - although I don't know what chemo you are getting. I am Stage 1A, grade 3, triple positive, and a lumpectomy to remove 2 masses, with nothing in nodes and clear margins. I seriously hope your 10 year statement is very wrong...

kdtheater - there are many 10+ year survivors on this site - and a lot of us actively posting on this thread that are at least 5+ years. Here is some info that should make you feel better. Keep in mind that early stage means stages I-IIIA for purposes of this info - so an assortment of nodal status and tumor size, and that there are many other factors that may influence OS and DFS:

http://www.breastcancer.org/research-news/herceptin-offers-long-lasting-benefits

Hi ladies! I'm scheduled to have my last Herceptin infusion in 3 weeks (yay!) and am contemplating having my port removed.

I'd planned on leaving my port in for ~2 years following cessation of treatmentbecause of my high recurrence rate, but my MO told me that I'd likely only have hormonal therapy for stage IV. I imagine I'd also start Herceptin again.

My question is: how often are Herceptin infusions for stage IV patients?

I could tolerate the occasional IV, but I wouldn't want it weekly, for instance. Thanks for any help!

specialk- what is OS & DFS?

Well, at first, the nurses were willing to flush my port 6 -- 8 weeks; so I had my port flushed every other visit (8 weeks). But, more recently, my MO wants my port flushed every month. No biggie; I'm usually getting my Zoladex shots that same visit.

Joanwill55 - you are lucky it was caught early stage I with no lymph node involvement and clean margins. I'm 45 andhave stage IIA with 1 positive node. I underwent a BMX and I'm now receiving chemo. I will also have radiation and hormonal therapy. My diagnosis is triple positive. I am thankful that they have Herceptin to treat ladies that are HER2+. They also have perjeta and we are lucky that treatment for us had come so far. I think your statement the deepest abyss of BC is HER2. Is it right? Do you know anyone with HER2+ who survived cancer more than 10 years was a reflection of your own fears and not meant to scare others. I think it will help to talk to your MO so they can help you understand your diagnosis and prognosis. If you are not comfortable with that MO find one that fits you. I think the 10 year survival rate for HER2+ breast cancer is around 84%. I think that's a pretty good number and they are developing new treatments such as ATEMPT ( trial right now ) to increase survival rates. We can also help our outcomes by diet, exercise and reducing stress. Be gentle on yourself, try to stay off the internet - it can be overwhelming and frightening! This site has loads of good info. Try and take some time for yourself to relax and do things you enjoy.

I was stage IIA multifocal, high grade, no nodes, no LVI, and clean margins on the IDC (close margins on the DCIS, so we did rads).

My MO said from the outset that we're going for a cure: otherwise, surgery would have been it, given that we got it all surgically. Of course we won't know for sure unless and until something else takes me out, but that was the plan from the get-go. The prognosis is good (as others have said, too!).

The ten year thing is crap. Our stats, first of all, are just stats--any one of us is either going to have a recurrence or not, and there's no in between. Secondly, those stats have started to look a whole lot better in the last ten years. . . . So, while I resist the urge to be Pollyanna-ish about the whole thing, I think that cautious optimism is warranted.

I saw my RO this morning, and I'm still NED. He told me to go enjoy the nice day and live my life, which is solid advice!

Other solid advice: stay away from Google. I say this as one who knows.

i was speaking with a friend whose cancer has come back after 18 years, she is now advanced ti bones and liver, but she eent to Dana Farber and has been put on a hormonal chemo drug pill, they are thinking more in these terms now than chemo, especially with triple +. She is not so scared, her MO is a scientist and reassures her that knowing what they know now, chemo is a last resort. She is keeping me posted and she is in met group, but very upbeat today!

Meister-congrats!

JenPam-while I can't answer your question, my new oncologist (first one passed away) said he has a woman who had mets to her liver. Has been receiving herceptin since it was approved, or maybe before even, but is stable and will continue to receive herceptin until something changes.

Jerseygirl-I turned 60 last December. While I don't want a recurrence, if it takes 18 years, I can live with that lol.

November will mark 6 years since my bad mammorgram. I see my Onc in October to discuss the Arimidex continuation issue. Bone density test next week.

I have been a total sluf and my body shows it. It is time to get back into some serious exercise.

I am trying to live my life and do enjoy every day, but I would enjoy it more if I could get a pet scan every year, lol

fluffqueen -- I'm right there with you with needing to exercise! I was so good during the summer, when I swam every day. But, now I'm back to work and the kids are back at school, so I just don't seem to have time.

Tresjoli -- hope it's nothing, but you're wise to have it checked out! Good luck!

fluffqueen,

As a college professor, I have a very flexible schedule, too. I, too, just don't feel like exercising, and use my work/kids as an excuse! Sad, but true. I did move my classes further from my office, so I do more walking at work, but let's face it....my exercise bike is getting dusty!

Just wanted to say hi. Been busy with 2 jobs, double shifts and only 2 days off this month. Things will be settling down next week. No more double shifts and will have 1 day off a week. 52+ hours on your feet is too much for me.

Exercise has been a bit challenging but I do walk to one job and I am moving a lot in my job. Just need something to get the heart rate up. Back on the power walk next week

It has been some time since I posted as I seem to have less free time now that I am not hanging out in the doctors' offices every week. I have a question for all of those on Arimidex. I was initially on Tamoxifen but then switched after a year when my hormone tests said I was in menopause My hair grew back great on Tamoxifen, but now after being on Arimidex for 6 months, my hair is really thinning. Anyone have this and switch to another medication? I believe Arimidex is more effective than Tamoxifen for those in menopause. I see the Oncologist next week so I will discuss but would like to know feedback from others before I see him. Thank you so much for reading my post and responding if you have input.