ER-, PR-, Her2+ Roll call
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Thank you
yeah I've read it's a good prognosis but particularly worried about lymphovascular invasion as only read bad things about it ' my lump is 1.9cm so nearly stage 2 x
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Thank you
yeah I've read it's a good prognosis but particularly worried about lymphovascular invasion as only read bad things about it ' my lump is 1.9cm so nearly stage 2 x
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definitely talk to your doctor ---although you have lymphovascular invasion in the tumor itself, your staging studies dont show any spread to the nodes or anywhere else. So I would think that invasion in the tumor itself, but lack of spread anywhere else shoudl be encouraging ---and indeed chemotherapy as a systemic treatment is what all of us get to treat the possibility invisible microscopic spread that may have occured . So yoru chemotherapy and especially herpcetin should address this issue All this said, fear and worry are part of this course, and I would definitely encourage that you talk to your doctor
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lilneez - I agree that you should be relieved that your diagnosis is eminently treatable. You've had lots of tests & already completed surgery. As some point, you have to either have to trust your doc or go get a second opinion.
If you're reading on Google - stop as soon as possible. The info there is often wrong or out of date. And as you've seen - lots of scare stories. Someone suggested reading on Dana Farber I think. Also other reputable places like Mayo Clinic or NCI.
And you might want to join one of the threads for people under current chemo treatment - like Chemo June 2017. It helped me to have others to talk to who were going through the same experiences.
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thank you so much for your replies
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I am ER-, PR- and HER+
Have had a mx, but no other treatments yet. First meeting with oncologist will be on Thursday
-Leatherette
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Hi
Im so grateful for my medical team here in South Africa-i cant believe how long some people report having to wait for appointments or treatment ?
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How are all you ladies doing ?? I'm almost 3 weeks past my lastFEC-TH chemo, starting 3 weeks of radio on Monday and of course my year of Herceptin !!! Having good and bad days.....mostly keeping positive, but the fear creeps in in the early hours. Having pains in liver area but my oncologist doesn't seem concerned as is prob chemo related .... having hip pain that started after round three but again think this is chemo and inactivity related....also very low grade tension one sided headache that I'm hoping may be the Herceptin.....guess my body will the a while to recover ..... anyone else had these things going on ???? Big love to all x
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Hey Lilneez,
I am 2 and a half weeks in from my first TCH. Just starting to lose hair. Felt very nauseous-upset stomach-extreme change in sense of taste the first eight days or so, and when that subsided, hellacious mouth sores hit. Today I am nauseous again. But I have definitely had some good days, and take full advantage of those. And the bad days are not as bad as I imagined them to be. I am walking whenever I can. Losing weight. I was already losing due to anxiety post-diagnosis and surgery. The 15-20 pounds I have lost needed to go anyway, but I don't want to lose my diep flap tummy!
And I have had low intensity headaches for up to three days at a time. No liver pains.
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hi everyone
Just wondering why this thread hasn't been updated in ages. Is hormone neg and her2+ a lot more rare than triple p? I'm checking in anyway
Thanks
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I'd like to hear from more hormone neg and her2+ gals, too, Elfmcg. Always looking for encouraging information. Hugs to you.
Stephanie
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hugs to you too Alice, I just started my AC part of my chemo regime yesterday, so feel all up in the air, but so far ok, just nervous for what to expect. Your a few years out, great! This is wonderful.
How do you find coping with anxiety? This seems to be my downfall, it's so extreme, since I was diagnosed in June, and found out about the places her2 can spread to, I've literally have every ache and pain, it's so annoying, I can't run to the doctor for everything and I just want to try to focus on the chemo which is hard enough anyway.
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I'm still here. Just had my 9th Herceptin-only last Friday. Only 3 more to go. Then I can get my port removed and get off the blood thinners (my port gave me a blood clot so my vascular surgeon insists that I take blood thinners as long as I have my port).
I read the Triple Positive thread (for post-chemo/Herceptin discussions) cause that is a pretty active thread. I guess us ER-/PR-/Her2+ gals are more rare.
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I'm still here too. I had the same chemo as Alice & Bella's mom. Then because I didn't have pCR (a complete response w/tumor), I had AC after my ALND surgery. Then & had rads while I was getting the rest of the 17 Herceptin infusions. Next month I'll be 3 years past active treatment.
There are a number of HER2+ threads and I follow several of them. I don't think we're as rare as triple negative, but it's sure different then ER/PR positive. I'm also following the CIPN (chemo induced neuropathy) threads and the LE (Lymphadema) threads - since I was 'lucky' enough to end up with both no feeling in my feet and swelling in my breast & trunk. But I'm back in an exercise class 2 days a week and water aerobics 3 days a week. And still NED. And moving on. It's not easy but it can be done.
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Good to see there's more of us about, do any of you eat anything in particular or steer clear of anything that's really good or bad for her2+ hormone neg? I'm trying to get a grip on everything, but it's a mine field. I'm obviously going to steer clear of any alcohol during chemo, but I still see myself enjoying a couple of glasses with dinner when I'm finished, is this a big no no
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I'll be starting treatment 9/1. I'm glad to have found this thread. Seems we are fewer in numbers.
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Stats say that we are 20 to 25% of all BC cases...not too rare. I'm only diagnosed/treated for past 8 months. I didn't post before because the OP asked specifically for those who survived for years, though I'm hoping to one day fall into that category. Since this is an old post, I hope that Nevo84's mom is well and happy!
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is it 20-25% her 2+ and hormone neg
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Hi Elmfcg. I often wonder the same thing. I don't know what percentage of HER2+ are hormone negative but I don't often see any on the survivor threads. Hope it's just because there are less of us!
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For what it's worth because I'm only a year out from end of treatment, I find that as time passes, the anguish lessens even though many people who have had cancer say it never completely leaves you. Maybe that's not a bad thing in the sense that it's a constant reminder to live well now.
Elfmcg, since Herceptin is usually part of the treatment for early stage HER2+, especially if it's hormone negative, I was wondering why you aren't receiving it.
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Hi Pipandor,
I will be getting herceptin, I just didn't see the bit to add it. I only had my first AC on Monday, so I'll get the h with the taxol and then for a year.
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I completed AC-THP in March and had my port removed in April. Surgery was one year ago (4th of August), and I'm getting better every day!
Of course I thought I was very nearly back to 100% until we took a vacation in the Southwest during the June heatwave. 120° will "take out" anybody; but it hasn't let up! I still get lightheaded and dizzy, then break into a freakish face-only sweat when it's anywhere over a (formerly comfortable) 80°. I'd swear it was menopause if I didn't know it isn't.
Such an utter NOTHING of a complaint, eh?!
It's good to be alive!0 -
Speaking of PORT REMOVAL:
Who knew these things would be so freakin' GORGEOUS!? Mine was a hot orchid lavender/pink titanium triangle! The moment I saw it come out of my chest (through the bbq-scented smoke of surgical cauterization), I had to make a pendant out of it!!!
I'M SO WEIRD!!!
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Hi ladies, just want to chime in for those who need a boost.
I am over 12 years out of a hormone neg, her2 positiive Nasty Ass stage IIIC BC. Got a lot of sad faces back then.
Livin large every blessed day. And not abit of the beast around.
Targeted treatments have totally changed our rognosis,
Wishing all great days ahead, and only fading memories of BC in your future!
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Great news 06elise! Love what you did with the port.
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I'm still here!
Had my last Herceptin December 2016.
Feeling great and doing well.
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I always love seeing lkc's posts--you always make me feel good, Linda!
ELFMCG---I know how you feel--I tried to put up a brave front, but was pretty depressed the first 2-3 months after being diagnosed. I thought all I had to do was eat right (mostly
and exercise and I'd be healthy forever--at least a LONG time. The diagnosis was shocking! That was October, 2014. I'm a retired elem. teacher, my husband passed away several years ago from Melanoma, but I have a nice boyfriend who lives nearby who was wonderful to me. It was my turn that year for one of my sons and his wife to come home for Christmas from Seattle and I wanted to make it a nice one. So in December--got crazy busy--lights up outside, cooking, baking, tree up, presents under the tree, shopping for stocking stuffers, etc etc. I was so busy and THAT was the therapy that helped me the most. Almost too busy---was exhausted by the end of each day. Appointments, chemo, etc. also kept me busy then and for the next few months. Since I was home a lot (I was told to stay out of big groups to avoid catching a cold, flu, with compromised immune system) and never did feel too badly, so I cleaned out the garage and closets. When treatments were over, I was scared that I didn't have that protection anymore--which I heard is a normal response. But, got busy with friends, golf, working in the garden, volunteer work, etc. and felt better emotionally. Those first 2-3 months I couldn't enjoy anything, wanted to cry, was in disbelief. Now, am so happy, grateful for every wonderful day---appreciate life thoroughly more than I ever have. Elfmcg--I understand how you feel and you'll come to the point where you really know what's important in life--and not "sweat the small stuff" anymore. Happy to be alive.I hear people all the time complain about the silliest things or argue over nothing--I just want to say, RELAX, Just LOVE being alive.
You'll get there--be PATIENT with yourself. One of these days you'll be giving the same advice to the newly diagnosed! We have to be thankful we have Herceptin--which is a big game changer. You'll do fine. Hugs to you--we all understand. Keep us posted.
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ELFMCG (may I call you Elf?), the biggest, best lesson I learned during the first few diagnostic months:
Don't Google Anything!!!
A lot of the info you'll find in these here interwebses is "ancient" because the technology has been advancing so quickly in the last couple of years! Our diagnosis used to be DEVASTATING, until they developed Targeted Therapies like Herceptin and Perjeta. Now we're considered to be the lucky ones!
Don't get me wrong; my own high dose AC-THP was not the easiest thing I've ever done... but once I started reminding myself that those symptoms were only there to prove the chemo was WORKING, I found myself able to face them with a little more strength and a much better attitude. I would recover from this. My cancer would not.
Here's to 100% pCR (pathologically Complete Response)!
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Hi everyone. I just (finally) got my official dx. I'm an IDC with ER/PR negative and her2 positive. I had a lumpectomy with clear SNB several weeks ago. My tumor was 5mm, so the MO is leaving it up to me to decide if I want taxol and herceptin along with radiation or just radiation. What I haven't figured out yet is what, if anything, taxol would do to/for me. It sounds like insurance companies don't like one without the other, but everything I read talks about herceptin as a wonder drug, yet nothing on taxol an how it benefits us.
I'd love input from anyone. I have a day or two to make this decision. I really don't want to do chemo yet I'm afraid of recurrence...
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Still around..just hit 3 year anniversary on H&P! No progression ....can't say I feel great though! Lo
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