Diagnosed with 2nd Primary
 

Hi guys, :)

After 5 1/2 + years since my first triple positive diagnosis (Stage 3A) in my left breast, and enjoying NED status since being treated with "the works", I recently had the shockaroo of a brand new primary in my right breast (also triple positive, looks like Stage 1) Now I am awaiting my PET scan results and surgery soon followed by chemo and Herceptin.

I'd be interested in hearing about the experiences of others who had cancer pop up in the opposite breast after treatment. Was it Her 2 positive both times? Thanks! :)

Paula
My blog: http://jpoliver.com/wordpress/

Re: Diagnosed with 2nd Primary
 

Oh Paula I'm so sorry, just sending good wishes to you as you face this again!

Re: Diagnosed with 2nd Primary
 

I'm so sorry, Paula! :( I had a HER2 Stage 1 suddenly show itself in my left breast right after a non HER2 was found in the right ... the first, an ILC, was found during surgery to remove an "infected" nipple that turned out to be Paget's Disease. So my tumors were found 2 months apart, one in July and one in September.

Both tumors, right and left, were ER+, very much so. Only the second one, found in the left after the double mastectomy I insisted on (caught alot of flack and pushback) was HER2 +++.

The HER2 was also triple positive. My onc put me on Arimidex right after I finished the T and the C, because "The Herceptin isn't doing anything for the ER+".

My signature below outlines everything ... please feel free to PM me with any questions!

Carol Ann

Re: Diagnosed with 2nd Primary
 

Thanks for the encouragement and well wishes Carol Ann and Tricia. :)

Paula

Re: Diagnosed with 2nd Primary
 

Paula,

I was sorry to hear your news! I bet that was a shockaroo! Goodness! I have heard of women who have a new primary in the opposite breast many years later, so I suppose we continue to be at risk for BC due to our "femaleness."

I am so sorry you have to face the "works" a second time. May you sail through treatment without any difficulties and get back to NED and remain there. Wishing you the very best!

Re: Diagnosed with 2nd Primary
 

Hi Paula,

So sorry to hear about the new primary. Same thing happened to me 12 years later. Same pathology (her+, ER+, PR-) but Stage 2b (right) while the first (left) was Stage 1A.

Details are in my signature. I did not have chemo or Herceptin the first time around because it was not the standard of treatment for early stage back in 2000. But I did have 10 years of anti-estrogen. Go figure...

You'll be okay, please reach out to me privately if you want to talk

Best
Janis

Re: Diagnosed with 2nd Primary
 

One more thing I forgot to mention - please talk to your oncologist about adding Perjeta to the mix. I just missed out the last time around (2012).

Janis

Re: Diagnosed with 2nd Primary
 

I am sorry you have go through the process all over again. That just sucks. Praying your PET is clear.

Re: Diagnosed with 2nd Primary
 

Thanks to you too Laurel, JayKay, and MaineRottweilers! The addition of perjetta is one of three proposed chemo protocols oncologist mentioned depending on size of tumor at surgery and if there is lymphatic involvement. Right now as per ultrasound, mammo, and MRI, the mass might be too small to qualify for perjetta. I missed it last time even though I was at stage 3A then as it wasn't offered in 2011. I might be getting it in addition to the carboplatin, Taxotare, and Herceptin that I had last time or Taxol and Herceptin depending on tumor outcome at surgery. I had happy news today: http://jpoliver.com/wordpress/archives/1341 Such a relief. That mammo cartoon in the post cracks me up--can't seem to copy and paste it here though or I would. When I try it says:
Image result for breast cancer cartoon.
Wishing you guys the best! Thx again for your encouragement. I sure wish I could figure out how to quit growing these things and get to the root of whatever is causing it and FIX IT! Paula

Re: Diagnosed with 2nd Primary
 

YAY! What a relief!!

That cartoon is funny!

Carol Ann

Re: Diagnosed with 2nd Primary
 

So sorry to hear of news on the first post but glad to hear the PET was clear! Fight on warrior woman! We are all praying for you :)

Jess

Re: Diagnosed with 2nd Primary
 

:) JRA40 and Carol Ann :)

Anybody have any input from their research how in the world we can address the root cause of the cancer so we can fix that and stop growing these things? My oncologist has the chemo and my surgeon has the mastectomy to get rid of what's there right now.. I wish I could do something that makes my body and everybody's bodies totally uninhabitable to cancer. I've been working hard post the first diagnosis getting myself fit and healthy and building up my immunity and it still came back and I will soon temporarily wreck my immunity again with chemo...sure wish I could figure out something to fix whatever is causing it. I am an unwilling "culture medium" for cancer and want to evict it from my body permanently as I'm sure you guys do too.

Re: Diagnosed with 2nd Primary
 

Hello Dearest Paula!! I have not been on here for MONTHS or more...soooo, had to be God...know I am praying for you!!!! Sending you huge, tender hugs!!!

Re: Diagnosed with 2nd Primary
 

Hi Paula, I am so sorry you have to go through all those therapy steps again. And I am totally with you: We need to do more than just remove the symptoms, we need to do something against the cause. And it's not "stay slim, exercise, eat sensible, sleep enough". That will just help you through therapy, but obviously it never stopped cancer from trying to kill us. But to me it looks like nobody cares. Nobody even asked how I lived, where I lived, what I thought might have happened.

Re: Diagnosed with 2nd Primary
 

Nice to hear from you Susan and Jedrik.

Jedrik, I guess cancer probably has many, many things causing it but it sure would be great if we could get to the bottom of that and address that.

I am reading a book, "The Breast Cancer Pattern" by Dave Frahm who talks about out of balance hormones, iodine deficiencies and thyroid connections, etc.

Re: Diagnosed with 2nd Primary
 

Hello Paula,

I'm so sorry you have to go through all that again. You asked great questions. I attended a medical cancer conference about a year ago as someone who works in the health care arena. Breast cancer was dicussed during one with a special focus on Her2+. I can send you the information later as I am home now. The research basically said this: women who are already geneitcally Her2+ will be more likely to develop breast cancer than the Er/Pr + patients. Say, for example, out of 100 women who are ER/PR+ maybe 30-40% of these women will develop breast cancer. Out of 100 Her2+ women, 60-65% percent of these women will develop breast cancer. I will have to check back later to get the hard data for everyone. I then asked what can we do about prevention with let's say starting at the age of 18 for all women, would there be some genetic intervention for the Her2 women patients? The discussion then led to do all women starting at the age of 18 get testing to determine their hormone status and with armed with that data if disocvering one is Her2+ how would that help, since at this point in time we don't know how to circumvent the cancer cells? That being said, can you eat right, never ever drink alcohol, exercise, be lean into adulthood, etc....and still get breast cancer if you are Her2+ specifically? The data may suggest that. This is a WTF situation. And yet, some answers in that genetic markers are going to be huge in the future, even more so. Hope this helps. Enjoy a healthy salad tonight while eating some chocolate. :)

Take care,

Jackie

Re: Diagnosed with 2nd Primary
 

I'm sorry to hear Paula. My family history is not HER2+ but sister, Mom, Aunt, etc. had it come back in the other breast within 5-10 years. Sorry you have to go through all this all over again.
-Julie

Re: Diagnosed with 2nd Primary
 

Thanks for sharing, Jackie and Julie.

I'd love to hear more about that study, Jackie when you have time to post it.

Have a great day!

Paula

Re: Diagnosed with 2nd Primary
 

Jackie--I don't understand the "genetically HER-2 +" statement that you made. Can you please clarify?

Amy

Re: Diagnosed with 2nd Primary
 

Paula--

So sorry you have to go through this again! Best wishes and oodles of luck to you.

Amy

Re: Diagnosed with 2nd Primary
 

Thanks, Amy. I wish you the very best too. :)
Paula

Re: Diagnosed with 2nd Primary
 

I'm late seeing this, but wanted to send empathy and lots of good thoughts to you, Paula. If only we knew how to prevent breast cancer (and all cancer) -- I agree with you! Please keep us posted as you learn more about your treatment plan. Do you have a surgery date, yet?

Jackie, I also don't understand your comments from your conference about testing to see if women are ERPR+ and HER2+. My understanding is that a PERSON (host) is not either of those -- it's the cancer that has those characteristics. There are a few host factors that predispose to breast cancer (BRCA mutations, some rare familial mutations of other genes).

Debbie Laxague

Re: Diagnosed with 2nd Primary
 

Hi Debbie!

It's so nice to hear from you again! You feeling well these days? Still going to the breast cancer conferences in San Antonio and Project Lead? I haven't been since I met you at those years ago. It was great to connect with you and some of the other ladies here back then.

My second and final mastectomy is scheduled for 9/27 then I'm plum out of breasts to lose ;). I am still not doing reconstruction , perhaps it'll never happen, maybe it will I haven't decided yet. I'd love to hear from others who either waited or opted out of reconstruction. Chemo is planned about a month after surgery.

If you, or anybody else here is interested in following my journey through Cancer Land, my blog is http://jpoliver.com/wordpress/. There's tons of humor there over the years (part of my personal cancer battle plan), things I am learning along the way, Scripture, and gems archived there if you're interested.

Here's an analogy, "Welcome to Holland" that applies so well to cancer and times when things don't go the way we would wish that is tucked away in there that I think about sometimes: http://jpoliver.com/wordpress/archives/1321. Anybody want to read those thoughts (someone else wrote) and talk about it?

I like your avitar, Debbie. It looks like you, your dog, and friends are having a grand ole' time enjoying life! :)

Paula

Re: Diagnosed with 2nd Primary
 

Hey, Paula, I live the flat life. I had originally waited to reconstruct but just when I considered giving it serious head space, I was Dx'd with MBC. I miss my breasts but being flat isn't as tragic as I had first imagined. If I didn't have metastatic disease, I would have considered reconstruction more for my SO than for myself. I have found that in cooler months, sweaters hide my flatness and in the summer, tiered tops are great camouflage. Mostly, no one really notices but I have noticed that I don't get the male attention I once did. Also....now that I think of it...I never used to get speeding tickets and I have had two since I became flat. Coincidence?

Re: Diagnosed with 2nd Primary
 

Paula,

I will try to post a paper but it's hard to find information on this and it's more than a theory -- that we have cancer stem cells. Treatments do not kill cancer stem cells, so kill rapidly growing cells. I'm going to a lecture next week on cancer stem cells and will post something when I get more information. I'll also chat with one of the Scientists here working on this problem. It's not understood well.

-Julie

Re: Diagnosed with 2nd Primary
 

Hello Paula - Long time no see - and I guess that was a GOOD thing! Just processing my surprise to see you here with such news ...

For most of us HER2+ our cancer comes back in another part of our body, so I am glad you are spared that. You have all the tools and knowledge to pass through another round of treatments, and that goes a long way toward handling what comes. You faith will also guide you well as the near future unfolds.

All the best, and you may want to look into Corrie Painter's MBC study. Anyone can add their case to the study and eventually you should get a kit to send back a vial of spit for them to analyze.

Stay strong and resolved you will overcome this disease.

Re: Diagnosed with 2nd Primary
 

Paula,
I decided to forego reconstruction. Just didn't want to go through anymore medical procedures. I have not regretted it. Had to go through my clothes because things fit differently, but then I had an excuse for a closet makeover! I am sorry you are facing this again. Wishing you His peace, Cindy

Re: Diagnosed with 2nd Primary
 

Hi Paula...I don't come here often anymore but decided to pop in to check up on everyone. Coming across your post made me glad I stopped in. Praying for you Paula as you get ready to embark down a road you know all too well. God's Peace to you, my friend.

Re: Diagnosed with 2nd Primary
 

Paula--There is a lot of talk about FOUNDATION ONE testing. http://foundationone.com/

May be something you want to consider. Really sorry you have to do this again. Hope the second time's a charm.

Cancer is crap.
UGH.

Re: Diagnosed with 2nd Primary
 

Thanks MaineRotteiler and Cindy for the input on no reconstruction.

Julie, I am interested in the research you mentioned on stem cellsand will check it out when you post it. Thank you.

StephN, will check out Corrie Painter's MBC study and maybe contribute my spit someday. :0) Thx.

Nice to hear from you, MaryJo. Thanks for the prayers.

SoCalGal, thanks for the Foundations One testing link. Will check that out.

I am waiting to hear back from my breast surgeon. I am scheduled for the mastectomy and port placement at 1 pm today after sentinel node mapping and just left a message for her. A couple family members have the flu and I started feeling pretty crummy last night. I am some better today and there is no fever and think surgery is going to work out ok but want to verify.

My husband will put a postop update in our blog http://jpoliver.com/wordpress/ later today if it's a go or I'll note there if surgery is postponed because of this bug. It'll be good to get the surgery behind me and move on.

Here's to evicting cancer from all of us and rendering it homeless!
Paula

Re: Diagnosed with 2nd Primary
 

Prayers for simple surgery and quick recovery.

Cancer eviction......GO!