I absolutely agree that the focus really needs to shift. How can we not be aware with all the pink splashed everywhere. I wish all that money that is raised would go to more research and better diagnostic tools like SpecialK said. Maybe then we could get actually get closer to a cure, a vaccine or at least treatments that aren't so damaging to the body.

I'm just wondering why the ultrasounds were performed when the mammos didn't show anything.  Until last year, my mammos always came back with a good report and I was never offered an ultrasound.  Did you ladies request ultrasounds?

I palpated a lump one month after my mammogram. I tried to tell myself it was just a cyst because I had just been reassured my a clear mammogram. After one month the "cyst" did not go away so I asked for an ultrasound which showed the tumor. The location of my tumor may have been why it was not seen on mammogram. It was close to my chest wall, high and toward the center of my chest so it would have been outside the perimeter of the mammogram. Even when they did the core biopsy and placed the marker and went back to the mammogram, it could not be found because that part of my breast did not get pulled into the area of imaging. Yet the area was so clearly seen with an ultrasound. I don't know why they don't do more ultrasounds. When I asked, the answer I got was that it would be like looking for a needle in a haystack- unless they know the area to look closely at, it would not easily be found- yet as soon as they placed the ultrasound over the area of my tumor it was so obviously seen- even by my untrained eye. I could clearly see the black spot and knew immediately it was not a cyst.

I completely agree that this "awareness" campaign needs to shift towards better imaging- though I wonder if "awareness" was what sent me back to my doctor, just one month after my mammogram, asking for an ultrasound.

Hi, Blownaway. I was one who had to stop herceptin for a few months as my LVEF had dropped dramatically. I had noticed a shortness of breath when i was walking up a hill that hadn't bothered me a few days before. When i told my onc, he ordered the test that found it. So, ever since then it had been pretty good, no shortness of breath until... I had been on femara for about 8 months, and i told them. They said well you are a smoker, you are getting older... So on valentines day, I stopped femara. It wasn't until cinco de mayo that I noticed.... I COULD BREATHE AGAIN!! And so, now i have been back on tamoxifen for a couple of weeks, and again, I am starting to feel that my oxygen saturation is falling a little. It just feels as if I don't get enough air with each breath that I take. I am not sure when I will have my heart test again,but I am curious to know. I see that you are on hormonals, do you think that might be the cause?

I am attending a class for smoking cessation, and cutting back tremendously.

Blownaway - My cardiologist is monitoring me once a year even though I had no drop in LVEF during Herceptin (it remained at 65)  and my year finished Nov. 2012.  He's concerned that the Herceptin effects could show up later, even up to 5 years out. He has many patients who have either had Herceptin or doing it now.    He's been my cardiologist even before BC and had me on metoprolol for a heart rhythm problem (SVT) and feels the metoprolol protected me during Herceptin and now. 

blownaway - I was the same as ella - palpable lump not seen on mammogram buys you an ultrasound - at least in military facilities.  I could pinch my mass between my fingers.  Also, I went back after I was biopsied and diagnosed to thank the radiologist who set up the off-base consult asap - if we had done watch and wait I might not be here since I was node positive.  He reviewed my mammogram again and saw absolutely nothing.

Oh, and Blownaway, what does you complete blood count show? I was gasping for air with a LVEF of >60% but a red blood cell count of next to nothing. When I got a transfusion of packed red blood cells, I thought I was Wonder Woman (without hair--tee hee!)

I definitely feel like the shift needs to lean more towards research and also early detection. I'm 27 and found the lump myself. When I called the advice nurse, she tried to tell me to wait it out and that it was probably just a cyst. I listened to my gut and had her schedule an appointment with my OB a few days later. Then when I saw her, she immediately sent me to the Breast Center that same day and I had a diagnostic ultrasound. I feel like with more women getting diagnosed at an earlier age, mammograms need to start a lot earlier than 40. If I hadn't listened to my gut, and waited, my situation may have been a lot worse since I was grade 3. One day, I didn't feel the lump, and the next it was like a marble.

special - I'm pretty sure it was. If I'm remembering correctly, in my case, I had the ultrasound of my breast done first and it was visible there, then a biopsy, and then a mammogram and another ultrasound of my breast and my armpit to check the lymph nodes. With how quickly they expedited things after the initial ultrasound, I'd have to guess that it was apparently visible on the mammogram, too. I had a feeling it was cancer, even though they didn't confirm it until the results of the biopsy came back.

According to the breast specialist, I have dense breast tissue, so that might play a role in the grade 3 part of it. I'm not really sure. I had the genetic testing done, and came back with no markers, so all of this is kind of a guessing game for me.

Just got this update from the FDA (I'm on an email list for NON cancer reasons). It is a change in the labeling for Perjetta

Perjeta (pertuzumab) Injection, for Intravenous Use

Detailed View: Safety Labeling Changes Approved By FDA Center for Drug Evaluation and Research (CDER)

May 2015

Summary View

WARNINGS AND PRECAUTIONS

Embryo-Fetal Toxicity section edited

• If PERJETA is administered during pregnancy, or if the patient becomes pregnant while receiving this drug or within 7 months following the last dose of PERJETA in combination with trastuzumab, the patient should be apprised of the potential hazard to a fetus [see Use in Specific Populations (8.1)].
• If PERJETA is administered during pregnancy or if a patient becomes pregnant while receiving PERJETA or within 7 months following the last dose of PERJETA in combination with trastuzumab, immediately report exposure to the Genentech Adverse Event Line at 1-888-835-2555. Encourage women who may be exposed during pregnancy or within 7 months for PERJETA in combination with trastuzumab prior to conception, to enroll in the MotHER Pregnancy Registry by contacting 1-800-690-6720 [see Patient Counseling Information (17)].

USE IN SPECIFIC POPULATIONS

Females of Reproductive Potential

• Advise females of reproductive potential to use effective contraception while receiving PERJETA and for 7 months following the last dose of PERJETA in combination with trastuzumab.

Oh, yeah. My lump was palpable, but the only thing that showed up on my mammogram was the microcalcifications. So, they brought me to the ultrasound room, where even with my untrained eye, I could clearly see my dark star. With the spiculations, that is exactly what it looked like.

my BC was found on mammo, I had dense breasts, prior calcification, unable to feel anything. After biopsy 3 months later biopsy showed cancer cells. I was told not to worry, get thru holidays and finis healing from total shoulder replacement, same side. Surgery was performed jan and I wanted them both gone, gone gone. So as not to worry about reoccurance, well. Now we know that it can still return regardless. Enough info is still not enough until they can erraticate cancer cells ......forever, I do not see that happening in my life time, I am grateful for what I have, but ALL cancers have to be coming from what we eat, breathe, drink, rtf, so until we stop poison in the planet, or God intervenes, this will continue till they have plan B, plan C and other factors and ideas researched. PS. I had 2 tumours only detected on MRI prior to surgery. In same breast, go figure, the radiology dr found it right away, but since I decided to get rid of them anyway, it was a moot issue. But tell you daughters do not procrastinate.... Be well all!

allyouneedislove,

I too would like to hear what holistic steps any of you are taking?? I take Vitamin D and just started Tumeric, eat only organic as well and really try to get all my fruits and veggies in! I just started meditating and want to get in to yoga....just haven't had the time to start!

Kathy

Hello again, not on here too often as I can't seem to shake the nausea and headache from chemo. I am now 12 days post treatment #3 and still unable to eat much except canned peaches and occasionally plain Ramen noodles. Have compazine (puts me to sleep), zofran (works off and on), and a prescription acid reducer. None of them completely takes away nausea. Can hardly stand it sometimes!! My taste buds are all destroyed too, and I have a heavy metal taste all the time.

Anyone have any other suggestions?

ohio - there is an anti-nausea patch called Sancuso, ask your MO about it.