Her2+ diagnosis

Flower68

congrats mamab, good news indeed

motherofmany

suemed8749 Thank you for sharing. I have chosen to not have Perjeta (pertuzumab) but only TCH with my ER+ and HER2* diagnosis. I do not have node or met invasion and I was fearful of the toxic effects from all the medication causing my WBC to drop and causing a second cancer from the medications. I had not heard of any 5 year or greater success for HER2 until you posted. Can you tell me how you were monitored for 7 years post chemo and surgery?. I also have to take Herceptin for a year after my chemo is completed.

maryannecb

Hi, just reading your posts..great news that your tumor is responding. Just letting you know that I had same diagnosis, tumor was 9cm, 2 positive nodes...and still have NED at the 10 year mark. Hope all goes well through your treatment!

AliceS

Hi Mary Anne,

I'm also HER+ Stage 3a, er- pr-, (but 4 nodes Gr. 3) and find GREAT hope seeing that you are NED for so long. Have one more month of Herceptin, then just hope and pray, I guess. Think of it every day, but getting on with my life well, after the initial shock a year ago. Keeping busy with things I love...but do have my moments, especially since I have read the grim, scary statistics (50% chance of surviving 2-5 years for this type) LOVE LOVE seeing success stories like yours...keep posting and encouraging us! AND wish more would with the same DX! Really admire the courageous Stage 4 BC gals who post often on their thread. Hope I can be that brave if I'm ever there...God forbid. Thank you, Mary Anne..BTW, do you watch your diet? Have a glass of wine?

Cyber Hugs,

Stephanie (real name)

MamaBexar

Mary Ann, I too am glad to know you are doing so good. My own Her2+ dx didn't scare me until my mammaprint came back as high risk. Now I am wondering what the future holds. Did you have a mammaprint done? Thanks.

SpecialK

mamabexar - virtually all Mammaprint with Her2+ will come back with high risk, mine did as well.  Don't want to answer for Mary Ann but Mammaprint was not FDA approved for use until 2007, so after her diagnosis.

MamaBexar

Special K, Thanks for your very informative post. After I read it I was curious as to why my score was such a surprise to my doctors. They had not even put in a port thinking I would not need chemo. Out of ten MO's there was one that even thought I could skip herceptine. Apparently their thinking was based on my age and my Ki67 score. Now they are even rethinking radiation as well.

wabals

MamaBexar. Where were these doctors who did not think you needed chemo? They are very uninformed.

SpecialK

mamabexar - NCCN guidelines indicate that for Her2+ patients chemo/Herceptin is only on the bubble for those with very small masses, less than .5cm, and even then many oncologists will recommend at least doing Taxol/Herceptin, which works well for tumors at 1cm and under.  I have only seen Herceptin given without chemo in very certain circumstances, usually when co-morbidities or sensitivity means that chemo cannot be tolerated.  Chemotherapeutic agents and Herceptin are thought to work synergistically, were trialed together, so are given together.  To my knowledge age is not a factor in Her2+ patients, it is a given that this cancer is more aggressive - grade, Ki67%, and mitotic rate all usually reflect this.  I am surprised that your docs thought you would not need systemic therapy unless your tumor was very tiny.

wabals

My ki67 was lowish (10) and I am 71. My tumor was .8 cm ICD with .15 DIC.

I am in the ATEMPT trial at Johns Hopkins. My oncologist said that they are obligated to treat Her2+ even if only 1 test is positive.

With Her2 a consult at an academic center is important.

Mamagrammy

Has anyone with a HER2 +1 (which is considered negative on IHC) had the FISH test done and come back positive?

HER2 IHC was +1 (negative)

Oncotype HER2 was 8.2 (negative)

Do I need the FISH due to the +1?

MamaBexar

The doctors that are treating me are in San Antonio. They are a part of a large Cancer Care system here in Texas. My tumor was very tiny. It was found because of micro calcifications on routine mammogram. The surgeon commented that he cleaned up what was left from the hollow needle biopsy. As I said, 9 of 10 oncologist in the cancer center here had recommended herceptine but 3 of those didn't think chemo would add much. Chemo goes after fast growing cells and my Ki67 is only 3%. The one MO that didn't think I needed herceptine said " Ki67 trumps Mammaprint every time". My main MO just keeps saying that my cancer doesn't fit into any box they have seen before. But after the mammoprint report came back, she ordered a port to be placed the next day and chemo to start the day after that. She also said the same thing you said about the synergistics of herceptine and chemo.

Again thank to all of you for sharing your knowledge and experience.

lkc

just chiming in to say i was dxed with stage IIIC her 2 pos BC 10.5 yrs ago, and all is well. thankful every day

ElaineTherese

Yay, lkc! I hope I can say the same in 10 years. Congrats on remaining NED!

Flower68

It has been very long since posting but life has a way of keeping me busy.

To recap:

Diagnosed with IDC on 8/28/15.

Port placement 9/10/15.

First infusion on 9/11/15. On 9/14/15 my tumor was not palpable anymore.

Had a rough time with chemo so I had a break during which I had surgery on 11/20/15: PCR

Finished last three rounds of chemo on 1/21/16.

Started rads 33 rounds.

Finished one year of Herceptin on 9/30/16.

Got de-ported on 12/23/16.

Although it has been rough I am happy to be able to dance with my husband again, getting more strength everyday and thankful for being here.

Hugs and more hugs to all of you!

This is me an my hubby Christmas Day 2016

Flower68

Hello all ladies out there. It has been a while since posting. I have been diagnosed in August 2015. It has been six years, still here, still NED.

Hugs to all

Flower68

Sarah_78

Hi Flower68,

thanks for dropping by and letting us know. It gives us with similar pathology hope.

As for the clarification, what kind of surgery did you have?

Flower68

Good morning Sarah_78

I opted for lumpectomy