Is this true.........*GaK* ?

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Re: Is this true.........*GaK* ?

Postby GingerSnap » 26pm31America/New_York()

I know! I have read crap like this and it scares the bee-jeezus out of me. I did one of those stupid onco things a few weeks ago and it gave me, stage 1, no nodes, a 30% recurrance/mets chance. I had a mast and treatment!

I just don't know if the stats are right or the doctors are. I sometimes think the dr's want you to be out there being positive and living life -- which is right to do when you are healthy -- I mean who'd want to sit miserable for 10 years waiting for the shoes to drop?

So, while I am still so depressed inside about all this, I put on a happy face, I live life so my girl will always have happy memories of her childhood. And I take my vitamins, try to eat healthier (as I munch on celery sticks) and try to be a good mom!
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Re: Is this true.........*GaK* ?

Postby GingerSnap » 26pm31America/New_York()

Oh and they can't possibly have good stats in books published now ... Herceptin is fairly new and we need to wait til people have been 10 years out that were on that.
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Re: Is this true.........*GaK* ?

Postby lexislove » 26pm31America/New_York()

I do the same thing Ginger...I go about my day all happy for my 3 year old daughter and husband, but inside I'm just so unsure.

Before BC I was sure about everything!!! I really saw myself living a good long life. I know there are no guarantees in anything...but......

I wonder what the docs mean, my onc does not go by stats at all. He says they are to vague and my situation is MY situation. I remember when I was meeting my onc for the first time, I asked him this is not curable right? He said...it can be cured. He even told me in his words.." to focus on thefact that I am probably"cured" of breast cancer....BUT there are no tests that can tell us for sure."

I repeat that statement in my head daily....*sigh*
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Re: Is this true.........*GaK* ?

Postby lexislove » 26pm31America/New_York()

YES!!!

You are right about the Herceptin in that book she wrote a small section regarding it. She stated at the time she was revising it that 3 phase III trials were out and stated remarkable results..including the whole 50% reduction in recurrence.

To be quite honest...I am GLAD to be Her2 +. My onc was actually hoping for me to be Her2!!! At the time I thought this guy was mad...no I see why.
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Re: Is this true.........*GaK* ?

Postby GingerSnap » 26pm31America/New_York()

Yes, so I think that with the 30% figure, that reduces us back to 15%.
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Re: Is this true.........*GaK* ?

Postby Mimi2 » 26pm31America/New_York()

The last time I saw my sweet little onc (he moved away :waa: ) he told me, YOU'RE CURED...JUST HATE IT I CAN'T BE HERE FOR YOUR 10TH ANNIVERSARY! Of course I know there's no "cure." And I to am scared at times. I DID have five positive nodes. My onc, after doing neoadjuvant AC/taxol, mast, rads..he put me on Xeloda for six months. I'm now on Arimidex. My new onc said the Xelolda wasn't necessary. I said to her that maybe since I had extranodal extension he wanted me to do Xelolda. She said Arimidex would do the job. So, now I wonder if the right thing was done. They both work/ed at Duke.

Those books...don't read them! I've still got her older one, but I think I'll get rid of it. My info comes from you gals...LOL
Shirley

Oh, and I'm not Her2+
Ecclesiastes 10:2 (NIV) "The heart of the wise inclines to the right, but the heart of the fool to the left".
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Re: Is this true.........*GaK* ?

Postby cheri » 30pm31America/New_York()

I don't understand...node negative increases mets by that much percentage? I thought I was in high risk because I had 3/11 positive nodes. I mean it just makes sense to me that because I have node involvement that I would be at an increased risk of mets??
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Re: Is this true.........*GaK* ?

Postby GingerSnap » 31am31America/New_York()

Cheri, the book seems so doom and gloom ... and then you see people on the opposite-- 60-70% of people who never get mets. We tend to focus on the negative, it's hard not to but we can't know for sure which of us will get mets and which ones won't. I get scared because although er/pr+, you hear of girls 12 years out getting mets ... whereas if you are negative, after 5 years, you're pretty much cured. ER/PR- is more dangerous the first 2 years then up to 5.
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Re: Is this true.........*GaK* ?

Postby Emerald » 31am31America/New_York()

Cheri, the way my onco explained the whole "node status" thing to me was, that when the nodes are postivive, technically that is cancer that has already "metastasticized" because it is now spread beyond the breast. So with that, the treatments are geared for metastatic breast cancer, meaning more aggressive for longer time.

The "node neg" doesnt mean that cells havent metastaticized because depending on tumor location, size etc, it may have more likely gotten into the blood stream rather than the lymph system. But since there are no "holding areas" like with lymph nodes, there is no way of finding a cancer cell in someone who has no OBVIOUS metastastisis. My tumor was very close to skin and muscle (cuz I had no boobies) so there was a greater likely hood that my cancer could have gotten into the blood stream. So chemo was necessary.

He said that far too often, people see node negative as a security blanket. But cancer is cancer, and it has a mind of its own and there is no security blanket other than early detection and appropraite treatment.
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Re: Is this true.........*GaK* ?

Postby VoiceOfReason » 31pm31America/New_York()

now I am scared !!!! I was node neg. and ER/PR - and HER +++

I was told that node neg was HUGE ! and HER +++ didn't have much meaning in DCIS.

I read that if you are HER +++ if you hit the 5 year mark, your chances or reoccurance actually start to go back up

Has anyone else who is HER +++ heard this ????
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Re: Is this true.........*GaK* ?

Postby lexislove » 31pm31America/New_York()

Her2+ is most likely to return between 24-36 months. This has been quoted to me 2x and I have read this on others boards.

Once you are passed those marks....chance of recurrence goes down...WAY down.

And as For Dr.Susan Love...those stats that I mentioned for the original post was for SUGERY ONLY. And I also feel Dr. Love's stats a scewed.
Last edited by lexislove on 31pm31America/New_York(), edited 1 time in total.
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Re: Is this true.........*GaK* ?

Postby lexislove » 31pm31America/New_York()

Here is something for the node neg woman. This is from a science journal and is no more than 4 years old.

http://www.annalssurgicaloncology.org/c ... /2275/TBL3
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Re: Is this true.........*GaK* ?

Postby GingerSnap » 31pm31America/New_York()

Maybe copy and paste it here, I couldn't get to it from that link ...
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Re: Is this true.........*GaK* ?

Postby lexislove » 31pm31America/New_York()

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Re: Is this true.........*GaK* ?

Postby GingerSnap » 31pm31America/New_York()

I remember my onc talking about 5 year stats and she said it was 98% for Stage 1 .. and everyone around me thought, "whew" ... from the research we do, we bc survivors know, that there is a difference between living for 5 years and DFS ... disease free survival rates.

It's hard to ever get hit with this disease .. I have been having vertigo episodes. Never had them before. I can be sitting down and get a "swirl" ... I have been having them for about a month ... not sure if its everyday, but it's often. Standing in a store at the mall one day, I almost fell over if I had not caught a shelf of a store display ... everything we feel that is not normal is now, "could it be mets?" ... Of course, in the back of my brain is the knowledge that Herceptin does not protect the brain ... so if any little cells had gotten away to the brain, the Herceptin didn't get them.
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Re: Is this true.........*GaK* ?

Postby lexislove » 31pm31America/New_York()

I had something similar happen to me about 3 weeks ago. I was in the mall with my grandmother and daughter in line to pay for an item. I was wearing a winter jacket..but I got a dizzy spell and had the urge to sit. Of course there was no where to sit. I took off the jacket and it seemed to help.

At that time...I didn't think much of it. Though I was warm and dehydrated from running around. I have not had another episode, but I will be more aware in the future.
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Re: Is this true.........*GaK* ?

Postby GingerSnap » 31pm31America/New_York()

That could have just been an "overheating" or a hot flash of sorts ... glad it's not happening!
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Re: Is this true.........*GaK* ?

Postby Emerald » 02am30America/New_York()

The thing that angers me the most, it we can no longer "chalk up" vertigo like symptoms to "vertigo". We gotta have a scan and worry what "might be there". Life will never consist of feeling bad, taking a Tylenol, and going on about our business ever again. I hate the paranoia associated with bc!!! :fume:

Ginger and lexislove, I am willing to bet that before b/c if you had dizzy spells, you would have been pissed off, not scared to death. Before b/c you wouldnt have "had time" to be dizzy cuz you had other things to do. Now, you have to call the doctor, worry about brain mets, wait for the scan, worry and pray waiting for results.........UUGGGHHHHH

We want to go back to the days of just being pissed off and Tylenol. :-sad:
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Re: Is this true.........*GaK* ?

Postby Mimi2 » 02am30America/New_York()

I've had those spells, but I had them before bc.

I had my brain MRIed to make sure I had one! No, my NP said to get it because I had that thing happen with my eye...bad bad spots that was Vitreous Detachment. I think that it means I'm really old. But the good news with my brain...small vessel disease. I'm really old now. But, I need to talk to my pcp cuz I think one of my meds that I take can cause this.

I hate that you "girls" (you're young enough to be my dds if I had started real early having kids :uwink: ...what a nightmare for you guys :eek: ) to be so worried. I just hate it! And what I hate worse is this disease!
Ecclesiastes 10:2 (NIV) "The heart of the wise inclines to the right, but the heart of the fool to the left".
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Re: Is this true.........*GaK* ?

Postby lexislove » 02am30America/New_York()

I was never a pill popper. I rarely had headaches just around exams in college, but I associated that with stress. Even when I had my "monthly cramps", I would just chalk it up, and rest with a hot water bottle.

Em, you are right about the paranoia. It has to be the worse thing out of this whole disease. Chemo was bad but I knew it would not last forever. My mastectomy was alot easier than I thought, I'm now fine and my scar is white. I have little side effects from Tamoxifen and Lupron. BUT....the paranoia will last forever.

I can honestly say I was never scared of anything untill this disease came into my life.

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