Topic: TRIPLE POSITIVE GROUP

Forum: HER2+ (Positive) Breast Cancer — Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 08:30AM - edited Dec 10, 2012 09:55AM by TonLee

Posted on: Jan 31, 2011 08:30AM - edited Dec 10, 2012 09:55AM by TonLee

TonLee wrote:

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



IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Jan 31, 2011 09:28AM geewhiz wrote:

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!

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Jan 31, 2011 09:33AM TonLee wrote:

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!)

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Jan 31, 2011 09:41AM - edited Jan 31, 2011 09:42AM by geewhiz

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.

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Jan 31, 2011 09:50AM TonLee wrote:

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!  Undecided

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Jan 31, 2011 10:43AM geewhiz wrote:

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.

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Jan 31, 2011 12:48PM Smile_On wrote:

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.

Dx 5/21/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER+/PR+, HER2+
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Jan 31, 2011 01:10PM lago wrote:

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.

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And of course Hi everyone. I try to think of triple postive as something that describes our personality too. Smile

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*I do think they do initial scans after chemo but in my case I had them before

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2-
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Jan 31, 2011 01:13PM lago wrote:

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.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2-
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Jan 31, 2011 01:15PM PGK wrote:

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.  Undecided

@Tonlee

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.

@Smile

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

Dx 7/23/2010, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+
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Jan 31, 2011 01:37PM Smile_On wrote:

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.

Dx 5/21/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER+/PR+, HER2+

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