Breast Pain & Triple Negative Breast Cancer

I want YOUR input about breast pain with your Triple Negative Breast Cancer! 

Long before I knew or even suspected I had breast cancer, I would routinely have breast pain.  I would ask my doctor about it during check-ups, and I was always told the same thing--if it hurts, it's not cancer, so don't worry.  I was also told, harmless and simple cysts are what hurt.  I had several lumps in each of my breasts that concerned me.  A few of them never went away or changed in size.  I had my first mammogram at the age of 35 because of all the lumps I had.  Yet, each year I was reassured everything was fine, and I had no reason to be concerned.  

In March of 2013, I had a revision surgery on existing saline implants that were almost ten years old.  My left one had a small, slow leak, and I was slow deflating on that side.  I noticed the lack of fullness in my left breast at the top (ironically, where the breast cancer tumor showed up just a few months later).  My surgeon confirmed there was a deflation, and before I knew it, I was headed into surgery for new implants.  After I got over the initial shock that I had to get my implants replaced, I was excited to get it done.  I had wanted silicone implants when I had got implants ten years earlier, but they weren't fully approved by the FDA yet.  Saline implants feel like a bag of water under your skin, and they lack softness.  

After my surgery, I healed quickly; and my life returned to normal.  About two months after my surgery, I began experiencing a sharp, stinging pain in my left breast at the top.  It was a different pain that I had experienced most of my life and was always told was pain from a cyst.  This had the ability to stop you in your tracks as it would come on suddenly and felt like being stung by a bees over and over again in the same spot.  I convinced myself it was simply muscle pain from where I had my implant surgery so recently.  After all, this is common with breast surgery until the muscles relax.  However, the pain continued as the summer progressed, and it became more and more frequent.  But, because I had been told so many times not to worry about breast pain, I ignored it.  

In mid June, I noticed a lump in the 12 o'clock position of my left breast.  It wasn't overly big or concerning, but it was definitely there and it was new.  As I stated before, my breast have always been full of lumps and bumps from cyst and fibrocystic tissue.  I wrote it off as yet another cyst.  My doctors never took them serious so why should I? One morning in early August, I was changing my bra in front of the mirror, and I happened to glance up into the mirror.  What I saw shocked me--and scared me.  The seemingly harmless lump that had appears just a little over a month before was now visible and big.  I could see it without touching it, and it was making my left breast shaped funny.  I put my bra and shirt on and stared at it.  I could see it in my cleavage even.  I had a doctor appointment for something else later that week.  I would ask about it then I decided.

While seeing my doctor later that week, I almost forgot to ask her about the lump.  Just before the appointment ended, she asked me if there was anything else I needed.  It was then I remembered the lump.  I said "well, I do have this new lump in my breast I would like you to take a look at.  I'm sure it's nothing; but I may as well get it checked".  She checked the lump, and she was immediately concerned.  It was hard and large.  Unlike anything she had ever seen or felt before.  She checked my file, and I was due for my yearly mammogram anyway, so she sent me to the radiation department for a mammogram right then.  The tech doing the mammogram assured me it looked like a benign tumor of some sort and not to be too worried.  Obviously, it may have to be removed, but "don't let them scare you to death".  

The rest of the story is obvious.  Eventually, I found out the tumor was in fact cancer.  Only through a biopsy were they able to determine this.  I have Invasive Ductal Carsinoma, Triple Negative.  Triple negative is a very aggressive and fast growing form of breast cancer.  Most breast cancers feed off one of the three hormones naturally in your body.  Which type the cancer feeds off, determines what type of breast cancer you have.  My tumor tested negative for all three types of hormones.  This means it's negative for all three--thus the name Triple Negative.  Since being diagnosed, I have did a lot of research on the Internet and spoke to a lot of women who have triple negative breast cancer.  One overwhelmingly common story I keep hearing is "my breast hurt a lot before diagnosis and they told me not to worry because breast cancer doesn't hurt".  We are not saying we had pain in the general area where our tumor is located.  We are saying we had pain in the EXACT area where the tumor was located.  I know without a doubt the sharp, stinging pains I felt before the tumor appears and that continued to hurt after it appeared were EXACTLY in the location where that tumor sat.  Furthermore, as I have went through my chemo treatments and the tumor has shrunk, I have had a lot of breast pain where the tumor is/was.  It hurts when it's growing, and it hurts when it's dying.  Not only do I still have the sharp, stinging pains, but I get an aching feeling in that area as well.  And it can last for hours.  

Not a lot is known about Triple Negative breast cancer.  Much research is still being done.  Unfortunately, this limits our treatment options as well as our longterm prognosis.  Triple Negative breast cancer is aggressive, and the reoccurrence rate is high.  They simply do not understand enough about it to treat it as effectively as other types.  Since not much is known about it, I believe there is a factor that is being greatly overlooked by the medical community.  Women are not being heard and listened to.  We are being brushed aside as whiners and complainers when it comes to a little breast pain.  But I must insist there MUST be a relationship between the breast pain and the cancer itself.  The pain itself led me to the exact location of the tumor, and almost EVERY woman I've spoken to with Triple Negative breast cancer has said the exact same thing.  Yet, doctors still tell women not to be concerned over breast pain.  

I'm looking for comments and input from those who have Triple Negative breast cancer.  Please describe any breast pain you had before a tumor appeared, when it was shrinking and if you still experience pain.  Perhaps our stories, together, can reach one woman out there who is ignoring breast pain.  Maybe, just maybe, something you say will make her take notice and not ignore the signs her body is sending her.  Maybe, we , the patients who know what this feels like can convince the doctors who often get caught up in their textbook symptoms they really need to LISTEN to their patients.  

5 comments:

  1. Teresa, my name is Angie and I am a survivor of TNBC. I was diagnosed November 1, 2007. I did not have any pain, but I felt the lump and new something was wrong. I am in several support groups on fb for tnbc and quite a few of the ladies had breast pain. My second bc diagnosis, I had a lot of pain. It lasted a couple of months before a biopsy revealed another bc. It was not a recurrence because it was slightly positive for estrogen.

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  2. Hello Teresa,
    Tam here from UK (39 years)
    DX TNBC 30/09/2013 x6 FEC (2 down and 4 to go). I didn't have any pain but was told by my GP initially that it was a cyst, so went to the breast clinic on my own! I am lucky as it had not spread to the lymph nodes and had clear margins (stage 2, grade 3). There does not appear to be any support groups specifically for younger BC in my area and I have found it difficult to find people who are going through what we are going through, so I also started my own blog, which is very light hearted I think.
    breastcancerdiagnosis2013.blogspot.co.uk
    I have now added you to my bloglist so I can read as you update.
    Love and light x

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  3. Thank you for your comment Tami! I read some of your blog. It's very interesting! As I am discovering, those of us who are going through this truly understand what it's like. I read blog after blog, and we are all saying the same things!

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