TRIPLE POSITIVE GROUP
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(((((HUGS))))))) goutlaw, do not despair! There are many women here that can give more information than I, but I DO know that even women in stage 4 are living full and wonderful lives much longer now with all the advances that have been made in HER2+ BC
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Goutlaw alot of woman have had chemo first and it's kind of good cuz it makes sure it a chemo that will work well with u and if i'r + u'll get herceptin which should shrink whstever tumors u jave before the operation. I had chemo first, then operation, then more chemo and rads and this was 6 yrs go, my sister got cancer around the same time I did 6 yrs ago and she's working full time and She;s Stage IV--OK I'm not saying this is easy but I am saying u'r certainly not alone, u'll see, there will be more and more telling u. And there is a Thread for Stage III so that might be of interest to u also--they might have more info on that particular Stage.And like we've said make sure u ask for something for anxiety.
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Yea..Can never heard of getting all eight chemos first...then surgery then herceptin.
I thought four then surgery then four more so tumor ain't in so long.0 -
Cam...how long was she in stage 4 and where did it spread too. Was she triple positive?
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Please give me site with the young ones that's triple positive
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Gout law
I had TCH chemo x6 and I had the whole shebang prior to chemo .
Did your onc really tell you your prognosis was poor or is that your take on what she said?
Fact is that most of the major life saving treatments in breast cancer have been in Her 2 positive breast cancer. The major treatments close to being ready are also targeting her 2. Her 2 has come from one of the worst prognoses to one of the best.0 -
Ash Yes she said its poor due to aggressive... grade and age 32
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Ash...o and stage
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Have you gotten another opinion?
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Her 2 is always considered aggressive but people survive for many many years . There are new drugs and even a vaccine that are in the pipeline too.
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Goutlaw. Time for another opinion. I'm not liking what I'm hearing your doctor say. HER-2 while not great is still one of the most treatable due to all the new treatments. See someone else and then let us know what that person says. Don't despair.
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Don't know if my insurance will pay for second opinion. AllI did was cry. Plus I get the depo. To help my breast cancer , so I have hot flashes, decreased estrogen no period . I'm just no myself and seems I can't even live happy now.
I try to believe the medicine will work but I don't know0 -
Wish I caught it sooner then stage 3
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Goutlaw - you are still in that whirlwind stage of planning treatment and understanding what your next steps are. All of us here have aggressive breast cancer - that's the nature of the Her2. There is lots of good news on the Her2 front and many of the huge advances are aimed at Her2. Someone once told me that the aggressive cancers also respond better to chemo. In my head, I think of it like a fast pitch - harder to hit, but if you connect, you can knock it out of the park. Your chemo is designed to knock the crap out this and we'll all be here cheering you on.
Anyone not found at Stage 0 wishes that she found it earlier. I know I do.
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I agree with Arlene. There is something off here. Almost every insurance system pays f or second opinions becuse it often saves money. Additionally...you need to ask your doctor for some counseling .You need someone to talk to. Face to face.
We're all triple positive here and we have many young women and not one of them has been told they havea poor prognosis as far as I know. You a re young and there is lots of progress and more personalized treatment on the way.
Call your doctor and ask to speak with a counselor.0 -
When do the vaccines come out? That could b years...Yea I spoke to one counsel one time...I think I drove her nuts..she tried to tell me to mediate or relax...but its hard. I don't mind being bald but I hope I can live for my kids...I planned on seeing my kids graduate and me being a grandma. Wish there was a cure! How do you sign up for trials like the vaccines? Don't it need to b approved from oncologist? Her caused by wear and tear on body and aging I heard
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Goutlaw - there is a ton of really great reading here. A lot of us spent hours and hours combing these forums. The best thing I can recommend is to start on this site and learn everything you possible can about your particular pathology. You know you are Triple +++, which brought you here. There are also groups for younger women, ones for Stage III women, and my best recommendation would be to hop on the group that starts chemo the same time that you do. There is something incredibly comforting about being with those going through nearly the exact same thing.
Don't be afraid to ask for something for anxiety. I was given Ativan, but there are other options as well. It was a huge help for sleepless nights. You can ask your oncologist about trials and there are also sites where you can search for ones that match your criteria.
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Goutlaw..I would definitely get a second opinion. I am triple positive and my Oncologist has never been anything but optimistic I will be fine. Sure, BC is scary in any form but look at all the positive things fellow Survivors are saying and the progress made with HerNeu. Take charge of this battle and kick cancer's butt.!
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Gooutlaw...Lago is stage 3b and she is doing great three years out. The nurse navigator in my BS office is stage 3 and has been recurrence free for 13 years. In fact, I was having a hissy fit about some protocal they were recommending, and her first words to me were "Did I tell you I am stage 3 and cancer free for 13 years?" ummm no. Well I am, and you need to do what your doctors are telling you." I was highly annoyed and resolved not to utilize the nurse navigator again, but her words did hit home.
You need to see if your insurance will cover a second opinion, or just change outright. I interviewed four oncologists before deciding. It was important to me to have someone that I felt part of the team and who valued my opinion and the extensive research I had done. Your person sounds like someone who isnt up to date on all the current protocols.
Regarding the vaccine trial, Special K and I are participating in one that is a phase 2 trial. The vaccine was started for me after my treatment ended. The trial is getting ready to move into phase three and I think they are recruiting, but I don't know what hospitals are participating. They are going to start giving the vaccine along with treatment, so it might be a good chance for you to participate if there is a close location. Genentech, the herceptin people, are the ones that are taking over the trial now.
I will see if I can find out the trial contact info if you are interested.
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Yes fluff please do and let me know..you can also email me...momof5npa@yahoo.com. would like to do vaccine might help. Going on 3rd chemo a/c need requirements or who to call.
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goutlaw The younger women I know are all either Hormone negative or HER2+/hormone negative. Being triple positive is actually better because you have more treatment, hormone therapy after chemo/surgery/rads. My neighbor also triple positive, and stage 3 was diagnosed a few months after I was. This Saturday makes 3 years since my diagnosis. My neighbor is doing just fine and has to date not had a recurrence. She's older than me though.
There is no difference in survival when it comes to getting chemo before or after surgery. The reason they do it before in your case is to be sure the chemo is working. If it doesn't then they can change to a different chemo. My friends that got chemo first got all of them before surgery.
I do agree you should seek a 2nd opinion. Sounds to me that you are still early stage. Don't assume this isn't going to work. Also note that the statistics you see only for stage III usually include not only people who do treatment but people who may do partial treatment, just surgery and no treatment at all. You are getting the kitchen sink. They odds are still in your favor.
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Goutlaw, I’m appalled that your dr is telling you your prognosis is poor! Even if it were true (and I don’t see how it is), it’s a terrible thing to say. There are all kinds of powerful and effective drugs and more on the way. In terms of clinical trials, if you google that you should find some websites about it. You don’t indicate where you are located, but maybe if there are other women on here who live in the same general area, they could help you? The American Cancer Society is also a very helpful resource.
In terms of being grade 3, my tumor was grade 2 but the majority of her2+ women have grade 3 tumors. As others have said, sometimes the more aggressive ones respond better to treatment. You do need counseling, and someone just nagging you to relax and meditate .. I mean that’s fine as far as it goes but it’s hard to meditate when you’re at too high a level of anxiety. (If you’re feeling a little calmer, there are tons of free guided meditations on youtube – I would recommend you just do some that aren’t directly about the cancer….) It’s very normal to feel really anxious about this, this is a BFD.
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Here is the trial we are in. I also attached a link to general information about it. I am in Indianapolis, and travelled to North Carolina roughly ten times last year. Now I am on the every six month plan for a couple years. SpecialK travelled from Florida to Washington D.C. I haven't found any info that says they are recruiting for phase III yet, other than for the Neuvax version. Special k and I are in the one that is AE-37. On the link to the general info, it is further down the page.
We laughed that as much as we spent on travelling last year, we probably could have rented a villa in Greece and just stayed thre for 5 months and saved money. My reasoning for doing it (outside the hope that if I was getting the real think it might help me), is that it took many women to test the experimental drug herceptin and get it into our pipeline. the least I can do is pay forward the same potential opportunity.
http://www2.mdanderson.org/depts/oncolog/articles/13/1-jan/1-13-1.html
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gooutlaw...I should add that i was the poster child for panic disorder when first diagnosed. I spent literally every waking moment on the computer doing research on treatment, surgery, and reconstruction. i couldn't sleep, couldn't eat, dropped 20 pounds without trying (wish that could happen now, lol) my heart was pounding out of my chest, normal bp went up, and I cried every time I looked at someone, thinking it was the last time I would see them. It was a combination of things plus a sinus infection that led me to my doctor who promptly put me on Cymbalta. Things were better in 48 hours.
A good part of it was that I had never had general anesthesia, and while both my kids were cesearean, I was awake and never thought of it as major surgery. While I think it is great to talk with someone, if you need something more, or that works quickly, don't be afraid to ask.
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And the fact that I can feel a lump right at the edge of my incision isn't helping things any right now.
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goutlaw The free 24/7 American Cancer Society phone number is 1-800-277-2345. If you have trouble reaching them let me know. I have inside connections.
BTW you can see my stats below.I was just one lymph node away from being stage III. I had a really big tumor (total 6.5cm but only 5.5cm invasive). Although I was diagnosed at age 49 that is still young. My onc never said to me my prognosis was poor.
I also did a online calculator for you. I assumed you were grade 3, triple positive, tumor is 5cm(which is big) and you had 4 nodes invaded. Also put in your age. Your 10 year statistic according to this calculator and the info I put in (meaning you will still be alive and cancer free in 10 years is 78%) assuming you are doing 8 rounds of chemo then 5 years of tamoxifen. This isn't super accurate but 78% is pretty high. Even with 25 nodes invaded you are still in the 70% range. Your onc should be able to give you some indications based on what they do know what statistical area you fall in.
Fluffqueen I'm stage IIB not IIIB. I am going on 3 years and doing great.
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Well lago thanks yes tumor from MRI showed at least 6.5cm...I think she said it BC of my age 32...She did say a/c was responding BC tumor / breast got softer. Thxs wish it was higher then 70 so it that saying 30% chance of recurrence... Yes getting chemo, rads, everything
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Yes my path reports says Richard Bloom of 2 of possible 3 grade...
But nuclear grade is
I thought these were the same0 -
Goutlaw, there is a section on the main part of this site that has answers to how to read a path report. It helped me with mine. There is staging, via clinical methods, and pathology reports. And you may be graded differently depending on how it is done. Do take the time( with your report in front of you) I know i had to do it a couple of times before I had a handle on it. Much love. ps, f you are not on the West Coast of US, you should probably try to get some sleep! I don't have to work tomorrow so I am awake a bit late here its after midnite now.
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I live in Pennsylvania!
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