TRIPLE POSITIVE GROUP
Comments
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Shore there are some HER2+ that don't respond to Herceptin. In the past they didn't know who did and who didn't until the gave them Hercepin and either saw how the tumor responded or if, well you get the idea. Now I believe there is a test out that supposedly can tell who will respond and who won't. Test isn't standard yet.
So I have no idea if I had a form of HER2+ that would respond or not to Herceptin.
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Lago- so does that mean that if I had chemo first and have surgery scheduled for nov 6th the drs should know if my tumor responded to herceptin at the time of surgery?
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Jennifer, what Kayb said. My onc told me that about 40 women out of 100 with my diagnosis don't need any treatment after surgery (if doing surgery first). Problem is they have no way of testing to find out which of the 40 don't need further treatment. Just like they don't know the 14 who will fail with treatment (will not have survived in 10 years post treatment). If they knew they wouldn't be over treating those women.
Kayb that is good news. Granted I don't have my dense boobs anymore either but I have family that does.
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My best friend has dense breasts and used to get cllbacks all the time (before my dx) and she would always be panicked, but the subsequent views would always be ok. After I was dx'ed and treated her imaging center was the first in her area to get 3D mammography. They raved about how accurate it is, and how it catches even really small stuff, so they used it for her. You guessed it, she got a callback! She was even more scared because the image is supposed to be so clear. She called me, really scared, and had an appointment later that afternoon for more images. She had a really awful year - parents declared bankruptcy so she was helping support them (and not happy about it since she is single and nearing retirement herself), her work situation was more stressful than usual and she took a pay cut, boyfriend of a year walked away, her house had been robbed - it was a bad year. The week before this mammo her dad died unexpectedly, so she was a mess. I actually called the imaging center right after I got off the phone with her and spoke with the director of mammography. I told her that my friend was coming alone, filled her in on the recent events, and told her that they needed to treat her with kid gloves if they had any bad news for her. It was super quiet for a few seconds and I was expecting the HIPAA speech, but all she said as that I was a really good friend and they would take fantastic care of her. Her additional views were fine and she called me from the dressing room crying from relief! I was so happy! We had always said we didn't ever want to be the ones wearing the pink hats, but I will gladly take that bullet if she can be spared.
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I don't know why with my dense breasts I got 1 call back 4 years prior to being diagnosed and that's it. The area in question was the area where my tumor was located. You'd think they would be looking a bit closer in that spot.
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Omaz didn't work. Can you post the link without linking it so we can copy paste?
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lago - they had been totally focused on my non-cancer breast for the last two years of mammograms, doing a bunch of extra ultrasound. It makes me wonder if they had identified the ADH/ALH and were watching it while I grew a 2cm tumor in the other breast! The tumor on the right was almost in the armpit - I also had very dense breasts and it never showed on the mammo at all. Ultrasound was a different story - it was there, immediately obvious, but they had not done one on the right the previous year.
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lago - they had been totally focused on my non-cancer breast for the last two years of mammograms, doing a bunch of extra ultrasound. It makes me wonder if they had identified the ADH/ALH area and were watching it while I grew a 2cm tumor in the other breast! The tumor on the right was almost in the armpit - I also had very dense breasts and it never showed on the mammo at all. Ultrasound was a different story - it was there, immediately obvious, but they had not done one on the right the previous year.
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Well the place that did my mammo/US after I came in with a bloody nipple and a firm area stated on the report something like "Suspicious area but not typical of breast cancer. Biopsy and MRI recommended." When I left they told me at least an MRI.
Then I changed places. When I met with the BS I could tell it wasn't good. He didn't come right out and say it but he did start to say things like "Breast cancer is very treatable." The radiologist who did my biopsy told me before the biopsy they were doing it to prove their diagnosis of breast cancer. So I don't know what the hell the other place was doing but that's why I know this should have been caught sooner. There was no question what it was at the place I got treated.
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I hate it when that happens...
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There are enough of these incidents reported (including my own) that it seems to me like it would make reasonable sense to do a clinical trial on a random sample of patients having mammograms/ultrasounds, with two arms, one only receiving the mammo/ultrasound and one arm receiving in addition a CA 27.29 or CA 15-3, and then seeing whether closer monitoring and/or biopsy would produce enough benefit to offer the CA 27.29 or CA 15-3 to any patient having questionable results and/or to any patients who are at higher risk on a standard basis.
I know, I know -- neither test is considered reliable. But statistically it might result in a lot less cancer all the same.
A.A.
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Kayb I don't raise money for the ACS for myself. It's for all of us. The main term goals are to catch this early and find a cure. I consider myself cured until told otherwise so I do this so others won't have to go through what we did.
BTW I hit $2030 funds raised this weekend. I upped my goal to $2300. Not bad for a first timer. Currently the # 1 fund raiser at the Chicago event.
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SpecialK this is a repeat I know---but what u did was so thoughtdul and just plain nice.
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SpecialK this is a repeat I know---but what u did was so thoughtdul and just plain nice.
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SpecialK this is a repeat I know---but what u did was so thoughtdul and just plain nice.
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SpecialK this is a repeat I know---but what u did was so thoughtdul and just plain nice.
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Thanks guys! I live in FL and she lives in CA so I couldn't be with her - we have been best friends for 30 years. She was awesome during my treatment. My parents and only sibling have all passed away - two of them from stage IV cancers of differing kinds - so she is like family to me. I was already scheduled to go for her Dad's memorial a few days later but I felt so helpless - calling her imaging center was all I could think of to do besides talk to her. I was actually helped by a BCO sister that I met who lives there too, she was the one who knew which center had the 3D mammo because I was calling blindly!
lago - you are the ACS bomb! Congrats!
I just had a double post from a desktop - don't think it is the phone - think it is this site.
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The reason for the double posts is for some reason we click post and nothing happens. The we click again, and again till something does happen therefore creating the double/triples.
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Lago - you are a fundraising queen! I am doing the ACS walk in my area at the end of October. I'm going full swing on fundraising this month and I've raised $670 so far....but over $2,000 rocks!
BTW ladies I just got back from a weekend retreat, Casting for Recovery. I can't recommend this enough, it was such a fabulous event! I spent 2 1/2 days at a beautiful lodge with 12 other breast cancer survivors learning to fly fish and just connecting. It was wonderfully healing and I think everyone should sign up for it...it was totally free! Please pass the word and go to www.castingforrecovery.org
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kelloggs - glad you enjoyed Casting for Recovery. My BIL is a boat-owner/captain and a physician and he helped host and teach the ladies to fly fish in that event in his local area - he had a blast too!
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SpecialK - what a great thing he is doing. Please tell him how much it means to those of us who participate!
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No more liver scans for me. Yay! Still doing the yearly bone density scans.
So I mention to my NP that I will be seeing the port surgeon next month regarding deportation. She actually sent me an email back stating she loves the word "deportation" and it's her new word for the day. I can't believe she never heard that before.
Kellogs I have no idea how I did it. I was hoping to raise $300. My team is having a good day too. I raise our goal this morning to $5000… by 2pm we passed that total.
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Great news on no liver scans needed Lago!
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Awesome Lago, I bow to you and your team....you ladies rock!
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Congrats on no more liver scans Lago!
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Lago -- glad to hear you're done with the liver scans.
Obsessing over something (ha - what else is new ) and am wonderingvif anyone has any thoughts on it. I had pretty bad lower back pain right before dx. I don't remember it bothering me at all during chemo. But now, 8 months pfc, my lower back aches again. I had an x-ray before chemo that showed degeneration and a bone scan near end of chemo that didn't show anything in my back. Could it be mets in spine that was temporarily feeling better because of chemo? Going to ask MO of course but I can't stop thinking about it -- mostly worried because of that time during chemo when it didn't hurt.0 -
Lago -- glad to hear you're done with the liver scans.
Obsessing over something (ha - what else is new ) and am wonderingvif anyone has any thoughts on it. I had pretty bad lower back pain right before dx. I don't remember it bothering me at all during chemo. But now, 8 months pfc, my lower back aches again. I had an x-ray before chemo that showed degeneration and a bone scan near end of chemo that didn't show anything in my back. Could it be mets in spine that was temporarily feeling better because of chemo? Going to ask MO of course but I can't stop thinking about it -- mostly worried because of that time during chemo when it didn't hurt.0 -
Lago -- glad to hear you're done with the liver scans.
Obsessing over something (ha - what else is new ) and am wonderingvif anyone has any thoughts on it. I had pretty bad lower back pain right before dx. I don't remember it bothering me at all during chemo. But now, 8 months pfc, my lower back aches again. I had an x-ray before chemo that showed degeneration and a bone scan near end of chemo that didn't show anything in my back. Could it be mets in spine that was temporarily feeling better because of chemo? Going to ask MO of course but I can't stop thinking about it -- mostly worried because of that time during chemo when it didn't hurt.0
