New primary in other breast that is not triple negative

Joytotheworld

In October, 2008, I was diagnosed with triple negative breast cancer in the right breast, stage 1.  I declined the chemo but did do radiation following a lumpectomy.  I have been and am still using an alternative protocol for dealing with helping to prevent a recurrence or metastasis.  My follow-ups with the oncologist have solely involved mammograms but I was never satisfied with this type of screening as a mammogram failed to detect my original breast cancer.  After a lot of stamping of feet and bugging on my part (actually I ended up having to use what amounted to blackmail), the oncologist eventually agreed to let me have a breast MRI on a one-time only basis (only because I refused to have any more mammograms until such time as I was granted an MRI.  I did do what she wanted and had a mammogram first which came back clear.  Then came the MRI and everything changed in a hurry.

To make a long story short, I was diagnosed with a new primary cancer in the left breast.  Although I was offered a lumpectomy, I opted for a double mastectomy instead, given the fact that regular breast screening just did not do the trick for me.  I recently got back the pathology report after my surgery and here's where things get really interesting.  I and my surgeon were fully expecting it to be another triple negative tumour but SURPRISE.  Instead, it was strongly both ER and PR postive (HER2/neu results are still pending).  This time around, I'm stage 2 with two tumours in the left breast - one that was 2.8 cm. in size and one that was 1.5 cm. in size plus there were 3 out of 12 lymph nodes that tested positive for cancer.  Due to the fact that my breasts were very dense, making tumour detection rather difficult, and this being the first time I'd ever had an MRI, it's highly possible that the tumours in my left breast have been there for quite some time. 

The only reassuring thing about this whole scenario is the fact that the protocol (that my naturopathic doctor developed) that I was using to take care of my triple negative cancer seemed to be working.  My right breast showed absolutely no signs of any cancer and all the scans they did on my whole body (CT scan, bone scan, bloodwork, etc.) all showed no signs of metastasis. 

However, now I am faced with a whole new set of decisions to be made regarding this new primary breast cancer.  I now have to do a ton of research about hormone receptor positive breast cancer and what the best treatments are for that.  So basically, I'm starting all over again.

I'm also curious as to whether any other of you lovely triple negative ladies have ever been faced with a similar scenario.  Prior to this, I wasn't even aware that one person could have triple negative breast cancer in one breast and hormone receptor positive breast cancer in the other.

Towny

Dear Joy

sorry to hear all of this. It is terrible to be under a docs care and they do not even understand the dense breast issue. This is why areyoudense.org is working on getting laws passed so that women know about dense breast and can get other screeing.

You are right the tumors may of been in there for a while. Did you not have blood work done.??? That should of changed as well. Cancer tumor cell search (CTC) blood test would of changed as well....Being Triple Neg I get a PET scan every 6 months??? This stuff is agressive!!! Your blood work should of changed drastically..

Yes if you read on some of the discussion boards... women have and are being dx with different kinds of BC after the first one was one thing... second was another. It does happen....

MammogramsCANNOT SEE ANYTHING IF YOU HAVE DENSE BREASTS!! THE RADIOLIGST KNOWS THIS AND SO SHOULD THE DOCS!!! PLEASE HOW MANY TIMES DOES THIS HAVE TO HAPPEN BEFORE OTHER SCREENINGS ARE USED!! ESPECIALLY AFTER YOU HAVE BEEN DX WITH BC ONCE BEFORE!!! THIS IS NEGILGENCE AS FAR AS I AM CONCERNED

GOD BLESS AND GOOD LUCK

Meggy

Sister, especially because you are node possitive this time around, I hope and pray that you will consider chemo and those handy drugs they give ER possitive women that keep it away after chemo.  I know chemo is a form of poison but its the most wonderful poison I have ever had the priviledge to take.  With possitive nodes the worry is that the cancer could have slipped into other parts of your body.  Chemo can cleans you....they way I looked at it was ya, it's not that great for you...but it's life-threatening to the cancer...and the cancer is life-threatening to me.  Hugs to you sister.

juliedor

I had a very similar scenario,my oncologist didn't think it made any sense and ordered all the pathology done again and it came back as both being triple negative.Thankfully she was on the ball or I would have started a whole treatment protocol which would have been wrong!!

Luah

Sorry to hear about your new Dx. Mammograms didn't detect my cancer either (although my breasts are not all that dense), and I request and get an annual mammo and MRI for follow-up.  I am rather surprised your BS didn't order a breast MRI at the time of your first Dx - I thought that was pretty standard (along with other scans) to make sure there isn't anything else to treat.

If you don't mind saying, what alternative protocol have you been following?

ukgirl

Hi, I was diagnosed in June 2011 with triple negative stage I in my left breast. Decided to have double mastectomy in July. Results showed DCIS in the right breast as well go figure. Have just finished first round of chemo. Doing ok was expecting worse. Good luck to you.

Joytotheworld

Luah, I had a different surgeon the first time around and all he ordered in the way of scans was a bone scan and abdominal/pelvic ultrasound.  This time, although I had already received an MRI which was the actual way my cancer was detected, this new breast surgeon did extensive bloodwork, CT scan, and bone scan prior to performing the surgery.

As to the protocol I was following that was designed by my naturopath, it's rather extensive.  It ranges from diet (organic foods with minimal dairy, inclusion of nuts, seeds, green tea, ground flax seed, flax seed oil, seaweed, tons and tons of veggies, etc.) to exercise (aquafit, cancer exercise program which incorporates aerobic exercise with resistance exercises) to lifestyle (removal of all chemical type products from household, meditation, visualization and relaxation techniques, dry skin brushing, alternating hot and cold water in my showers, saunas, etc. )

Then there's the supplements:  Omega 3 supplement (NutraSea),  curcumin, melatonin, CoQ10, Maitake D, Vitamin D, a quality daily vitamin supplement (The Ultimate One for Women daily multivitamin), and currently since my new diagnosis - modified citrus pectin in powdered form.  I have been in contact with my naturopath and will see her for a consultation a couple of days after the appointment with my oncologist.  She has already informed me that my protocol will be changing quite a bit to deal with the hormone positive breast cancer I have now been diagnosed with.  It will also depend to a certain extent on which treatments I decide to have as there are supplements that help to alleviate some of the side effects of various allopathic treatments. 

ukgirl, glad to hear that your first round of chemo went well and wasn't as bad as you expected.  Thanks for the good wishes and best of luck to you too.

kathy1308

It is more common than you think. If you would ha had chemo first round it could have preented this. it could have and does not mean it would have for sure. Good luck with you chemo. It will go quick. One question? Did you have diagnostic mammogram?

Joytotheworld

Kathy, whether or not I had accepted chemo for my first triple negative breast cancer, that would have had absolutely no bearing on my developing this completely new cancer in my other breast.  In fact, I asked my breast surgeon this exact question and was told that no, this was a completely new primary cancer and not a recurrence of any kind. 

I did have regular mammograms but they failed to find my tumours both times around.  The first time, almost three years ago, I found it myself through breast self-examination only five months after a clear mammogram.  This time around, it didn't show up on the mammogram just two weeks before I finally got an MRI which detected it immediately. 

Thank you for your good wishes.  In actuality, I haven't made any concrete decisions yet about which treatments I will be pursuing and won't do so until after I meet with my oncologist on Aug. 23. 

hrf

Joy, I had a similar situation. First dx was TN, IDC, no lymph node involved. Second was 100% es positive and 80% PR positive and ILC with 4 lymph nodes involved