TRIPLE POSITIVE GROUP
This is primarily for people who find themselves with THREE +'s by their diagnosis.
If you are new to breast cancer, please click on the link below and read. It is "What I Wish I Knew At the Beginning of Treatment."
http://community.breastcancer.org/forum/6/topic/797454
Comments
-
Count me in! I did tchx6 and was grade 2 just like you TonLee. I had multi focal tumors, the largest was 2cm. I had 8 of 13 nodes positive.
After chemo, I did a mx reexcision due to unclear margins. There was NED at this surgery after chemo. Woohoo!
0 -
That's great Geewhiz!!!
I didn't have clear margins after a skin-sparing MX, but since it was just on the skin side I declined more surgery. (Hoping chemo and rads will take care of any lingering unwanted guests.)
So let me ask you...have you had a pet scan? CT Scan? My Onc refuses to do ANY scans unless I have "symptoms." And even then he fights me (had a headache for two weeks and he told me it was just chemo...of course I was thinking...OMG Brain Mets!)
0 -
Prior to chemo starting I had the full range of scans...PET and CT full body.
Afterwards, my onc said it doesnt help change things...if there is progression, well there is progression. I am not comfortable with that. I just read a study in a sidebar here that resecting livers might prolong things...well, that sounds like a great reason to stay on top of it all to me!!
I had a terrible hip joint pain for a month of the holidays. I caved and asked her to scan....she did. I dont like the idea of the chemicals etc., but it was clear and I got to spend the holidays knowing that the pains were not mets. I do kickbox classes and it seems I tore some muscles. She wanted to refer me to a bone doc...no thanks!! If its not lifethreatening count me out!! I am all doctored out for now.
0 -
My Onc is so stubborn..I am between 3 and 4 TCH right now....when it's done I'm going to get a second opinion about the scan. I need to know. I can't live with not knowing. Of course my radiologist is just out of residency, I can probably talk him into all kinds of things...lol
Know what worries me most about being triple +? In my survivor's group..there are now 20 ladies...I say now because from what I am told, there were 27 two years ago....the 7 that died of BC were ALL Her2+. Every. Single. One.
Now I'm the only one in the group who is HER2+ and they treat me like a short-timer!
0 -
Who knows what stage they were diagnosed at!!!
My good friend was triple positive, 3c...13 nodes positive. She's doing great.
Maybe I am naive, but I dont know that its that bad of a prognosis. My onc tells me its the her2 that trumps everything. And I keep my fingers crossed the herceptin kicked that out of the equation.
0 -
Hi! Triple + too. Definitely feel like I'm getting everything in the book thrown at me by my doctors. I must say it does make me feel better that I'm still doing something to fight the cancer in going to get Herceptins and starting Tamoxifen. I think I'd have more trouble coping with going gun ho with chemo and radiation and then wam being done with treatments. I know I am struggling right now with emotions. I was so super positive and non-emotional while going through surgery and treatments that I surprised my doctors and family, but really all of my energy was spent understanding and getting through the treatments and their side effects. Now that I am feeling physically better, I have more time to reflect and grieve some of my losses which I think is a good thing so I can move on, but sometimes others don't understand how I could be so "okay" before and now I am more sensitive and tear up more.
TonLee, my doctor will not do a PET scan until a year or so after my chemo. I think they feel that if there is something there it is still to microscopic to be picked up by the scan. Either my breast surgeon or my oncologist sees me every 3 months and does a physcial exam of my chest wall & skin and a blood test.
0 -
My BS did the scans before surgery because we had time and since my tumor was so big, aggressive etc. he wanted to be sure I didn't have mets. If I had mets then we would have done chemo before surgery.
My onc told me on my 1st visit that she doesn't do scans* unless there are symptoms. After researching I realized this made sense.
• First of all finding the mets early doesn't have any effect on survival.
• Second, like Smile_On said the scans do not pick up microscopic mets. As we all know breast cancer, even fast growing ones like ours typically don't grow that fast but there are of course some exceptions (inflammatory breast cancer. It will take the cancer a while to grow before they can see something.
I will be getting another liver scan next week but only because they did see something on the initial scan. They are pretty sure it's something I had since birth or cyst but want to make sure. I'm not going to worry about it unless I hear the contrary.
-------------------------------
And of course Hi everyone. I try to think of triple postive as something that describes our personality too.
------------------------------
*I do think they do initial scans after chemo but in my case I had them before
0 -
Also as Geewiz says "Who knows what stage they were diagnosed at!!!" and what kind of treament. If they had other issues that might contribute like very overwieght, not taking their estrogen sucking pills, etc.
0 -
Hi all
I am strongly triple P +++, too. Thanks for starting this new thread
I just finished my last TCH 11 days ago and will have Herceptin through the end of September. My ONC appointment this Wednesday will probably result in a prescription for Tamox. Scary. My ONC won't do scans of me either without evidence of a symptom. I think her rationale is the same as what Smile_On says. Microscopic bits won't be picked up in the scans and the BS thinks she got it all with the BMX.
I feel the same way. I was very positive and non-emotional during the surgery piece. Toward the end of my TCH treatments things started going downhill and there were lots of tears. Just yesterday, the waterworks were flowing. Hang in there ... we'll get through this! Did you start your Tamox yet?
GK
0 -
I'm planned to start tomorrow on Feb. 1, but my pharmacy said that my onc must not have called in the prescrip. I have some calling to do to get it straightened out. I get treatments about 45 minutes away from my house and when I did chemo they sometimes would have to fill my prescriptions at the pharmacy next door b/c I would stay overnight there to get my Neulasta the next day, and I think he either sent my scrip over there or forgot to call it in.
At my last appt. he said "around the beginning of Feb." and didn't seem in a rush for me to get started, but I'd like to start that 5 year countdown. I'm 27 and am still hoping to try for at least 1 baby when Tamox. is over.
0 -
Wishing you the best of luck, Smile. Looks like we'll be starting at about the same time! 0
-
I'm in as triple positive. TonLee - the 7 women may not have gotten herceptin. They also may have been hormone receptor negative.0
-
Tonlee thanks for starting a +++ thread for us girls to keep in contact. I'm going for my post lumpectomy re excision appt today. librarylil0
-
Great to start this link TonLee!
Triple positive here! Its been 2 years since my mastectomy
and I plan on having many more years under my belt. Diagnosed July of '08 and had 6 months of Chemo (up front) to shrink an 11 cm tumor, which chemo very effectively did except for 2 nodes. Considering how my breast looked with cancer, I was a happy camper that Chemo made the large mass disappear! 1 yr of Herceptin. Onto a Modified Radical Mastectomy and then Radiation - 33 treatments. I was put on Arimidex switched to Aromasin and now doing far better on Tamoxifen. (Joint and spine issues while on AI's thus Tamoxifen for this post menopausal women)
0 -
Welcome everyone!
Smile-On At least your Onc has a scan somewhere in your future. The members of my survivor's group were all treated at my facility and half of them have NEVER had any type scan. Two of them were recently diagnosed with extensive mets to the bones and they're 2 and 5 years out. I wonder if it was in their bones all along and if scanned they might have avoided the poor prognosis they're getting now. (Their symptoms? They can't walk.)
I hope your treatment works out and you're able to start tomorrow. My docs haven't even mentioned Tamox to me yet. Should I be on it now? I was >95% ER & PR.
Lago-I'm not concerned about micromets, but mets period. I imagine (in my nightmares) that it is somewhere else right now and chemo doesn't knock it out. Then in a year or two it spreads even more. Part of the reason he refuses to do a scan (besides "policy") is because I wouldn't let them take more than 4 lymph nodes. Every time I ask for a scan he says, "Well, if you would have allowed us to take more lymphs, we would know more about aggressiveness and that might call for scans." That's BS. 4/4 lymphs and 7/10 lymphs is the same stage. The histology and HER2+ should be enough imo. I will have a scan at the end of chemo, one way or another. I just hate that I have to fight for peace of mind.
Omaz- Good point about the Herceptin and the ladies from my group possibly not getting it. I don't know because no one will really discuss them in detail. But they were less than 5 years from treatment so I assumed they got it.
Susie I LOVE LOVE LOVE to hear from triple pos. women who are thriving! .
0 -
Libra!
Good luck today. Let us know how it goes...
0 -
Thanks for starting this thread, TonLee. I'm Triple+, have had a lumpectomy and started TCH x6 two weeks ago. That will be followed by rads.
I't scary to hear about the women in your group, but they may have been metastatic before they got Herceptin. Someone correct me if I'm wrong, but aren't the odds much better for those of us with early stage HER2+++ cancer than for women with mets?
0 -
Web
True, they could have had mets to start with, which is kinda my point. With scans they would have known that.
One lady who has bone mets is stage 3 at diagnosis like me, the other stage 1. Stage 1 didn't have ANY lymph involvement (she is morbidly obese though, so I'm not sure how much that might play into it.) Of course BC doesn't have to travel through the lymph system, so I guess maybe hers didn't, and that's why the nodes were clear? She considered herself "cured." She's devastated.
0 -
I am triple positive also. Had unilateral mastectomy almost 2 years ago now. Wanted bilateral, but insurance said no the day before surgery. Getting very close to DIEP reconstruction to finish the bilateral that I wanted and then reconstruct both sides. Just waiting on the call for a date, hoping end of February or beginning of March.
0 -
Webu,
I am between 3 & 4 of TCH right now....then rads....so we're not too far apart.
0 -
Good luck Blondie!
I didn't have enough belly fat for DIEP, but if I lose my expander during rads I will try to gain weight so I can do it. My PS says it is the optimal reconstruction in his opinion. I love that you don't have to lose, twist, or otherwise maim muscle to get them.
0 -
TonLee said: "she is morbidly obese though, so I'm not sure how much that might play into it."
Extra weight is very bad for post menopausal (and I assume permanent menopausal women) Read below:
"Short of resorting to such drastic measures, all women can reduce the risk of getting breast cancer by drinking less alcohol and losing weight. "Patients want to know what they can do," says Cobleigh. "It used to be you could say, ‘There really isn't anything.' Now you can say, ‘If you control your weight after a diagnosis of breast cancer, you'll be less likely to die.'"
Source:
Breakthroughs in Women's Health
BREAST AND OVARIAN CANCER
Chicago Magazine
http://www.chicagomag.com/Chicago-Magazine/January-2011/Breakthroughs-in-Womens-Health/index.php?cparticle=5&siarticle=4#artanc0 -
Sign me up for this group! I was 98% ER and 94% PR, plus HER2. Round 4 of TCH this Thursday, Rad onco 1st consult next week, not sure about Hormone treatment yet. I am 39 and was put into chemopause very quickly.
I may opt for an oopherectomy at some point (can't have kids, spent years trying and probably fed the C with fertility drugs). Right now, I am dealing with each step as it comes.
0 -
I understand it plays a part Lago, but there are plenty of obese women without BC.
Our Onc told her she was "cured" because there was no lymph involvement and she had clear margins. "No need for scans dear. You're cured."
REALLY??
I guess we can never know for sure if she was really Stage IV when diagnosed Stage 1. She uses a walker and on bad days, a wheelchair, but I don't know if she'd need them if she wasn't carrying around so much extra weight.
0 -
Sunflower,
I am a week behind you in treatment, also high ER/PR. I'm 42 and was also put into chemopause. Has your Onc talked to you about Tamox? They haven't even mentioned it to me yet.
0 -
I had scans prior to my surgery. We knew going into surgery that I had at least one lymph node involved. So, I think that is why I had the scans.
V
0 -
Very nice thread !!!
Thanks for starting it, I am also triple positive , diagnosed 3 months ago , I did 4 rounds of FEC which made my 2.7 tumor and 3 positive lymph nodes dissapear !!! now i am doing 6 rounds of THC with weekly herceptines in between . My onc did all kind of scans at the time of diagnosis , I am happy that he did cuz otherwise i would have thought that there are things that i dunno , I did a CT scan of pelvic , abdomen, chest and neck , Pet scan , bone scan and guess what Brain MRI . Although they were all clear except my breast tumor and 3 lymph nodes but the nurse told me that they do it for everyone to have baseline . He was talking to the surgeon and mentioning that he wants to do it because of being HER2+. I was scared to death spending couple of hours in those machines just thinking they gonna find something in there . But he is very thrilled by the results , we repeated the chest CT scan after 4 round of chemo and there was nothing in there .Remember that being HEr2 + with having herceptin is not a poor prognosis anymore, I think this is your right to have a CT scan or pet scan though . But i guess u r right it is better to know , but how is he so sure that there is nothing anywhere else without having a scan? i don't want to scare you but i would think the same if i were you, i still think that they might be things that they were too small at the time of my pet scan and the chemo didnt work on them and they r growing inside me without even the onc knowing it .Anyway I hope we will do great and the Herceptin will do it's miracle. And i agree you don't know about those ladies diagnosis in your group, is there a way to know what stage they were ?? is the group for all stages ??Maybe they were in more advanced stages or maybe the chemo didnt really work on them ????
Ok enough ! let's be positive , we are triple positive right????
0 -
Tonlee-We discussed it prior to chemo. There is a chance I may not take it. I have Factor V Leiden which puts me at a higher risk for blood clots, and Tamoxifen can cause clots. My onc is doing more research on this for me. She had suggested hysterectomy and AIs at one point. I am going to start asking more questions about it this week.
0 -
V I think its nice going in to know .... the lymph test is just not enough imo.
Melania I agree! We should stay positive...meaning to me, not stressing over things I can control. My onc may not want to give me a scan, and that's his prerogative. It's not mine. I'll have one at the end of chemo...even if I pay for it out of pocket. Heh.
Sunflower I'm a little concerned it's never officially been mentioned other than to say..."You will be taking a hormone suppressing drug after chemo for 5 years." I assumed it was Tamox, but I should probably check...haha...
And I wonder why some women are on it during chemo, and some aren't. I will ask my Onc next week when I meet with him.
0
