Needing some reasurrance

Gretta

Hi Girls, I'm really keen to hear from any of you with the above dx. I haven't been coping well & need to hear some positive news. I had 8 cm of DCIS with multifocal IVC measuring 2.5cm. My pathology showed a KI 67 of 30 which I know is high for recurrence, also necrotic areas in the breast taken. I really wanted a BL mastectomy but the surgeon said there was no evidence of disease in the Left. Now have a lump in the remaining breast which on U/S looks normal. I'm really scared because I know what was removed if a very aggressive form of breast cancer. I'm frightened I won't respond to the treatment & when the treatment finishes the cancer will take over. Need to hear from some girls with similar dx who are doing well.

Annie54

Hi Gretta,

Fear is normal! But is sure doesn't feel good.....it will get better though as time goes on. I wanted to let you know that your KI-67 of 30 isn't so bad - at least not to me as mine was 70! Very aggressive with Her2 + to boot. I had a lumpectomy, chemo, rads and am now on AI anti-estrogen meds. My onc has said I should do very well and will most likely live to a ripe old age. I'm hanging on to that for sure....but also know that no one really knows what will happen down the road. I'm 1.5 years out from dx and honestly most days don't even think about bc - except when I come on the boards or look in the mirror at my curly short hair that just refuses grow fast! Good luck to you.

Annie

Sassa

I had a KI-67 of 70 also, ER/PR-, HER2+++++.  My tumor was 1.75 cm.

I had a modified radical mastectomy, 4 AC, and 1 year of herceptin.

It has been almost eight years since the end of chemo, 7 since the end of herceptin.

I am in total remission and hope to stay that way (as I am over 5 years out with hormone negative BC, my chances of recurrent are down next to zero).

At the time of my mastectomy (right breast), I wanted both breasts removed.  The surgeon also refused because it was "healthy."  There was a complex cyst in the left breast.

I did have a simple mastectomy 7 months later because  a follow up mammogram on the left came back as BIRADS 5 due to a large area of microcalcifications.  I was terribly asymmetrical because of the size of my breasts and was having chest, neck and back problems because of the difference between the two sides. I seized my chance to be evened up.

Pathology on the left breast came back as totally benign tissue.

Moderators

Hello Gretta, and welcome to Breastcancer.org. We're sorry you have to be here, but very glad you've found us.

We're sure that you'll soon be receiving even more responses to your post. This is a very supportive community where you will meet many who have similar diagnoses to yours, and who have shared the same experiences.

Please do continue to keep us posted as to how things are going for you.

Warmly,

The Mods

Gretta

Thanks girls, I really appreciate the info.  Know we are all different but I just need to hear some positive stories.  For want of a word I'm terrified, knowing this is so aggressive.  Was grade 3, multifocal IDC embedded in 8 cm of DCIS & seeing I'm only a B cup...pretty scarey.

Thanks once again x

Sassa

Gretta,

When my doctor told me that as HER2+, I was "lucky," I thought she was crazy.  How could having an extremely aggressive cancer be lucky?

She was right.

Because our tumor cells are fast growing, many of them are dividing at the same time.  The dividing cells are what the chemo drugs can destroy which means chemotherapy is very effective for us.

On top of that, we have our "miracle" drug, herceptin, which targets HER2+ cells.  

So, start thinking of yourself as "lucky."  If you had to develop a breast cancer, you developed one that can be effectively treated.

Anonymous

not to mention Perjeta is now approved for neoadjuvant chemo in conjunction with Herceptin and Kadcyla and Her2 vaccines are currently in clinical trials. 

Triples Positives are the only ones that have five different methods for killing the bastard (chemo, targeted therapy, surgery, radiation and endrocrine therapy). Her2+/Hormone- have the highest rates of achieving complete pathological response from neoadjuvant therapy. These days it's good to be Her2+!

Gretta

Thanks so much girls for your advice & support.  Unfortunately, I will not be eligible for Perjeta or Kadcyla unless it metatises & lets face it I definitely don't want that!!  Wish I could have it with my Herceptin, do you girls get it for a year.  Also they tend not to do neoadjuvant here so you never really know if the chemo you are getting is working???  Totally wish I could have the regime you girls get in the states.  This wasn't in my nodes so pretty sure if I got the correct treatment I could be cured.

suzieq60

Gretta - calm down and trust your doctors. You are getting the correct treatment for your diagnosis. They only do neo-adjuvantive treatment if the tumour is really big. The fact it was not in your nodes is good. The chemo and Herceptin is to take care of any cells that may have escaped.

M0mmyof3

Hi everyone!

I'm new here but I have been fighting this crud for over a year now. I went from being diagnosed and right into treatment. Had a bilateral mastectomy last fall and still waiting on reconstructive surgery because of various issues that have cropped up from treatment. Everytime it seems like I am taking a step forward, I end up two or more steps back. I have been getting a targeted therapy of Herceptin and Perjeta since chemo ended. Luckily with chemo I only had to endure 6 rounds and they could tell that it was working on the first treatment.

Even though I try to remain strong its very hard to do so. I have such wonderful friends and family that care about me but even they can't shoulder my burden and at times I just want to give up and let go.

Sassa

Gretta, I had a modified radical mastectomy, then 4 round of AC followed by 1 year of herceptin.

Mommy of 2, I think the worst thing about treatment is the games our minds play with us.  I hated the 3 AM "what if" scenarios that would keep me awake I wondered if I would ever sleep through the night again.

Well, I do, and sleep very well.

Now, think of what you know:  You know that your chemo worked, You know that you are having two miracle drugs for HER2+.

As far as reconstruction goes, I had delayed reconstruction 2 1/2 years after my mastectomies.  I am glad I waited.  I was fully healed from the mastectomies and had worked on strengthening and regaining flexibility in my chest, back, shoulders and neck.

Many of the problems that the women complain about on here after immediate reconstruction are actually not result of the tissue expanders that have been placed.  They are the tightness and pain of the mastectomy.

By waiting those few years, I sailed thorough the placement of tissue expanders, saline fills and the exchange surgery.

So take advantage of your time before your  delayed reconstruction.  The better physical condition you are in before reconstruction, the easier the process will be for you.

Stay strong.

placid44

They're doing clinical trials right now on the use of Kadcyla for early stage bc as well as neoadjuvant. (It will take a while to complete those, though.) The trial for use of Kadcyla for first-line metastatic bc should be completed this year, with a possible filing in 2015.

Gretta

HI SuzieQ,  my cancer was quite large, margins narrow 3mm & 2.5mm & 0.4 from the skin.  Probably would have been too late for neoadjuvant therapy being so close to the skin.  Also 80mm of DCIS, & only a B cup.  I know there's all these great therapies waiting in the wings but not approved yet in Australia.  I found out there was a clinical trial running here in Adelaide that I would have been eligible for (I could have been on a trial using Kadcyla/perjeta) but it was never mentioned to me.  So feeling pretty angry that I was not allowed this opportunity.

Really keen to hear from any other girls who are Grade 3 & doing well

Thanks for the advice girls xx

Alicethecat

Hello Gretta

I had aggressive treatment for an aggressive cancer - pls see stats.

Doing well. Doing good.

This could be you too.

Good luck!

Alice

 

JeninMichigan

Hi Gretta

I wanted to tell you that I am Stage IV - diagnosed from the start.  My mets were to my liver - 4 tumors, most of my upper right ribs, left hip, chest nodes. I am a grade 3. I had 4 lymph nodes with one that had the cancer broken through it and into the tissue.   I had six rounds of Taxotere, Carboplatin and Herceptin in mid 2008.   After 3 cycles, I was NED and have remained NED every since. All of my mets resolved and it has not come back. I have been on Herceptin only now for six year because of the mets but seriously it has been my miracle drug.   I thank God we have a drug that targets this aggressive cancer and there are so many other options too.   I wish you great success with your treatment so that you can eventually put this behind you and move on to living a full and happy life!

Jen

mannettes

jeninMichigan,

Did you receive radiation, too? Or, just the chemo and Herceptin?

suzieq60

Jen - you are a true miracle just like Cafelovr.