Testing, treatment, side effects, and more.
Posted on: Dec 17, 2010 08:48AM
Posts 1 - 30 (30 total)
Dec 18, 2010 03:05AM KitCat1 wrote:
Thank-you ladies! I needed to hear these stories. All the negative about being ER- really gets me down! Any positive notes on being ER-? Thanks all and carry on , move forward! Here's to growing old!! XOX
Dec 18, 2010 04:24AM weety wrote:
I have read that ER- responds better to chemo AND I just recently read that herceptin works better in ER-. How's that for good news for ER negative? (I'm ER+ but only "weakly" so my percentage is probably only 5% or so)
Dec 18, 2010 04:44AM KitCat1 wrote:
Thank-you once again ladies, excellent info and points. I had right breast mastectomy,, 6 x TCH, 25 rads, completed chemo in September, rads in November and now on Hercepton every 3 weeks until June. My onc says the odds are defineately in my favour. It's good to meet you all and thanks for the input. Sometimes I can get so down..... ( the unknown) ... you know what I mean.... positive stories are always welcomed! XOX Onwards and Upwards I say!
Dec 18, 2010 07:44AM RebzAmy wrote:
Diagnosed June 2007 HER2 positive with several lymph nodes involved and one very large one. It's now 3 1/2 years since diagnosis and 3 years since end of chemo and operation and 2 years since finishing herceptin.
Hope this helps
Dec 18, 2010 06:41PM leftfootforward wrote:
I am 37 years old have 4 children (8, 5, 3, and 4 months) and was just diagnosed with ER-, PR-, Her2 + with node involvement. I am scheduled for surgery just after the new year followed by chemo and then radiation and herceptin. It looks to be a long road and I stumbled across this website and forum. It helps to read your responses and stories. I am currently struggling with weaning my 4 month old in preparation for the surgery and chemo.
thanks for being a source of encouragement.
Dec 23, 2010 12:53AM imatthew wrote:
see my wife's diagnosis below, 1 TCH done, next one is wednesday.
Dec 23, 2010 01:52AM Letlet wrote:
Hi ladies...I was just wondering if your onc is prescribing Tamoxifen after Herceptin. My bx report states ER- and PR 60% (weak). I just read that Tamoxifen suppresses estrogen only. When my onc told me about giving me Tamoxifen for 5 years I thought it's because it worked on progesterone too and apparently this is not the case so I'm confused as to why she would prescribe me this. I would hate to be on something with so many side effects if there was no point in me taking it anyway!
Dec 23, 2010 10:32AM KitCat1 wrote:
I'm not sure on that one. From what I know Tomaxafen is for the estrogen receptor. Ask your onc. Don't be afraid to ask questions. Knowledge is power.Nagem... WAY to GO!!!! Yay another sister doing well! So happy for you!
Huge hugs to all! xo
Dec 24, 2010 04:19AM weety wrote:
I don't think many women are ERneg and PRpos. I think it's usually the other way around. Hmmm. . . I think you should start your own post on this, putting your er/pr status in the title so you can find as many other women that have this same diagnosis. Also, why do they consider 60% weakly positive? My ER was weakly positive, and although the path didn't give numbers, my onc said that means it's probably only 5-10%. 60% doesn't seem very weak to me. Just curious.
Jan 7, 2011 11:45AM Leslie1962 wrote:
I am ER/P neg and HER2+++. Had double mastectomy (left side cancer only), left axillary dissection, Adriamycin, Taxol, Cytoxan, Taxotere, Herceptin, radiation. I am down to my last few Herceptin infusions and doing well.
Jan 10, 2011 11:29AM elenalb wrote:
Your diagnosis/treatment sounds nearly identical to mine. I had cancer only on the right side, 6/19 nodes, IDC, grade 3 (whatever that means), ER-/PR-, HER+++, but had a radical bi-lateral mastectomy in July 2010. Diagnosed 3/10, first chemo (before surgery) was A/C, then surgery, then 12 weeks Taxol/Herceptin, now I'm half way done with radiation. I could only do 12 weeks of Herceptin, as my MUGA scan went from 57 to a 38 in 14 weeks. My oncologist won't put me back on Herceptin, but I made him refer me to a cardiologist who ordered an eco-cardiogram, which showed my heart function at 60%. So that's my next battle, trying to get my oncologist (I have Kaiser so they're all connected) to allow me to gauge my heart health by eco-cardiogram rather than MUGA. The cardiologist was a bit amused that oncologists still use MUGA scans as they can measure your heart, but some other organ in the same vicinity giving false results.
When I had my MUGA scan showing I was in "heart failure" at a 38% efficiency, I was walking several miles each week and working out on a treadmill at the gym (a recent accomplishment of mine). I sure didn't feel like I was in heart failure....so the two of them won't consult on this. I don't think the cardiologist wants to get in a "pissing match" with the oncologist. The oncologist said after radiation that I was just to "get on with my life", he would not be doing any tests, etc. except an occasional blood workup. So now I'm scared to death that this could reoccur and they won't catch it in time to do anything about it (don't know if there is anything else to do since they've thrown everything they had at me.
Comments anyone? Thanks.
Jan 10, 2011 03:17PM Leslie1962 wrote:
elenalb - All I can say is maybe get another opinion on the heart function. I just had another echocardiogram that showed my left ventricular ejection fraction in the 50-55% range. I was still cleared to continue with my last few Herceptin infusions. It certainly sounds odd for you to be in heart failure while walking so much. Are you short of breath or anything like that? I too was told to go back out into the world and live my life. Once herceptin is done in February I think it will be difficult to know that lifeline, so to speak, will be done with. My doctor also does not do scans etc., unless there is a true reason to "go fishing", as he likes to call it. He said it usually finds some oddball stuff that you didn't even know you had and have been living with all your life. Don't need the extra radiation, special dyes and the anxiety that scans put people through. I am having major problems with lymphedema since axillary dissection. Have you been experiencing this or are you one of the lucky ones with no problems/symptoms? Hope you are doing well. Keep me posted on the heart function. Have a great week!
Jan 11, 2011 12:49AM KitCat1 wrote:
Hi Leslie. the oncs that I see said the same thing. No more scans , etc, unless warranted. ( you have complaints) I was having aching , back pain, they assured me it was nothing, but I insisited on the bone sacn and they did it.... it was nothing. I finished chemo in October and apparnatly these efeects can saty with you for 6 to 9 months. Also scans can give off neagtive results , causing worry and stress when not neede. i hear ya though, it seems like others are getting scanned all the time???? i think if you push, you will get. I am in Canada and we have it all covered, so its not a make money issure here. When i was first daignosed I had bone scan, ultra sound of all organs and chest xray. I also had a ct injected dye scan on my liver for a mark that was there that turned out to be a birth mark. So moving forward..... during erecepton like you. I am tired though, I miss my energy. I just stated with a personal trainer so hopefully this will get me up an going.Your doc is right, we don't need extra scans for no reason, unless warranted. I hope All is well!! It's 2011... good riddance 2010, lets live LIFE!!!!!!
Big Hugs XOX
Jan 14, 2011 02:36AM jacee wrote:
I just read that Tamoxifen suppresses estrogen only. When my onc told me about giving me Tamoxifen for 5 years I thought it's because it worked on progesterone too and apparently this is not the case so I'm confused as to why she would prescribe me this.
Letlet, I just had this conversation with my endocrinologist this week. I am 97% ER and 90% PR. Yet, I never hear anything about progesterone suppression, only estrogen. He said,"that's because the only way you get progesterone, is as a by product of estrogen. If you take away the estrogen, then so goes the proesterone." Hope this is accurate info...made sense to me.
Jan 15, 2011 07:11AM medinorth wrote:
I asked on another forum about mastectomy vs lumpectomy. I am also ER-/PR- and HER2+ but I had lumpectomy + re-excision and will have chemo and rads soon. I've read that node positive leads more onc to recommend AC-TH over TCH, but that the decision is determined by other things, including some regions of the country preferring one over the other. I am grateful for the wealth of information, but I really wish there was a better, more precise guide to these things. It has taken me a few weeks to get to all of the different forums. Besides my diagnosis and treatment, manuvering breastcancer.org has been a stressor.
Dec 18, 2011 12:13AM lkc wrote:
Hi ladies, Just wanted to update you all. I am now " out' over 6.5 yrs from a stage IIIC er, pr neg& Her2 pos BC." Awful " prognosticators at Dx , and now I am NED and happy as a clam. Take heart, and please know there are quite a few us long timers out there once again busy with our lives and living well beyond the daily terror of BC.
Dec 18, 2011 08:47AM Momof2inME wrote:
Thank you! Thank you!! I am having BMX next wednesday and these stories are amazing!! I am so scared there will e positive nodes. To "hear" all of you gives me hope and inspiration! You are all so strong and amazing to me!!