Friday, July 3, 2015

The Odds Are Overwhelmingly In My Favor

When the radiologist used the ominous “I’m very concerned” about my latest mammogram, my mind just stopped. He kept asking if I had questions. “No,” I said. No, I thought. Again? No, not again. My surgeon, whom I had not seen since he had given me my all-clear four years ago, made time for me that afternoon. He looked at the films and ordered a biopsy, but he began talking treatment immediately. Yes, again.

Eventually I caught my breath and cleared my head, and then I called Pat Jones, one of the many virtual friends I have met since my first breast cancer diagnosis in 2006.

In addition to sharing a name and being the same age, Pat and I now share a diagnosis: two different bouts of triple-negative breast cancer.  Pat was diagnosed the first time in 1987, the second in 2003. She’s 28 years past her first diagnosis and 12 past her second.

I am nine years past my first and three weeks past my second.

Oh, and ugh.

If I have to follow Pat’s footsteps by getting TNBC twice, I plan to also follow her long disease-free lifeline.

To be clear: This is a second primary cancer, not a recurrence. My original cancer is long gone, but I am special and get to have a second serving. The second cancer was tiny—4 mm, or .4 cm. Miniscule. So small that the surgeon couldn't even feel it, despite knowing exactly where it was. My prognosis is excellent. We got it exceptionally early.

It was in the same breast as the last one, so I could not have a lumpectomy, as that breast has already been radiated; radiation only works once.

Still, I would have chosen a double mastectomy even if a lumpectomy had been an option. I would have done this with my first diagnosis had I been better informed. (Lumpectomies plus radiation are as effective as mastectomies on treating individual tumors, but they leave breast tissue that can get a second cancer later.)

I now know the territory much better and felt it was time to send both sisters packing, including the healthy one. I didn't want to worry about the possibility of cancer in the other breast, plus I didn't want to be a one-breasted wonder. I did not have reconstruction. I have never defined myself by my breasts, and I did not want to add more foreign elements to my body, so I am good with my new boyish charm, some occasional polyester fiberfill and eventually, perhaps, breast prostheses.

Talking to Pat was a godsend—she made me laugh, she sent me pictures of cheap padded bras she gets at Walmart, she told me about her full life after a double mastectomy, and she encouraged me to blog about this. We talked for more than half an hour and I got off the phone with renewed faith and energy.

Our talk and subsequent emails made me realize how much I have gained from my relationships with other women on this little journey of ours. My introduction to Pat came six or seven years ago, when I saw her comments regularly on various breast cancer discussion sites, encouraging others with TNBC under the name Noni Jones. I contacted her, asking to interview her for my book, and she agreed. Her daughter Candy was also diagnosed with TNBC several months after Pat and she is also 12 years past diagnosis, cancer-free.

How fortunate I am to know just who to contact to calm me. To provide the been-there-done-that-and-moved-on.   

For a remarkable professional perspective, I also emailed Carol Scott-Conner, a surgeon at the University of Iowa Medical Center, who wrote the foreword of my book.  Carol is, first, a warm and wonderful woman who, interestingly, is also my age. Equally important at this point, she is a breast cancer surgeon who also became a breast cancer patient; she had a mastectomy in 2013. She called me right away. Her assessment of my prognosis: “The odds are overwhelmingly in your favor.” Yes! I hung up, reassured and blessed to have this caring woman in my life.

So this was a shock and not how I planned to spend my summer. But, hey, as Pat reminds me, I am “one lucky chick.” This puppy was in its infancy and it is now gone. Had I put the mammogram off until this fall, as I had considered, I could be facing a different scenario.

As it is, the odds are overwhelmingly in my favor.

The Details
I had a routine mammogram June 3, then was called back the next day because the radiologist had seen calcifications. Most women have calcifications at some point and the great majority of them are benign. They come and go and are more common as we age. Some, though, spell trouble. I had a close-up mammogram that showed dense tissue behind the calcifications. An ultrasound didn't help much—the mass was so small the technician had trouble finding it.

(One annoying, sort of heartless tidbit: The technician called in another woman to help her find the mass. The second woman zoomed in and found it right away. “There!” she said, with smug satisfaction, obviously pleased with her success. Good for her, she found that I probably had cancer. Glad it made her day.)

The radiologist invited me into his lab to look at my film. My calcifications were linear, with uneven sizes and shapes—he made it clear he thought I had breast cancer again. Very small, very early, perhaps DCIS. But breast cancer nevertheless.

My surgeon ordered a stereotactic, or mammography-guided, biopsy. That didn't work because the calcifications were so close to the skin the radiologist was afraid he’d tear a hole in me with the machine. So I ended up with an ultrasound-guided biopsy.

The radiologist who eventually did the biopsy was the same one who did my original and who told me, at that time, encouragingly, “This is not that bad.”  This time, she said, “You know this is tiny, don't you?” So I again was benefitting from her positivity, again benefitting from a strong woman I had met through my first cancer.  She said the calcifications could actually be benign lines caused by the radiation. Think about that, though: caused by the radiation.

She called the next morning, June 12, with the results. From her tone, I knew what was coming: It was cancer. Infiltrating ductal carcinoma, 5 mm, with accompanying DCIS. It was high grade, which told me it was likely TNBC again, although receptor status was not yet indicated.

My surgeon was on vacation in California, but called when he got the results. I scheduled the surgery for ten days later, June 22. Surgery was a success, with no lymph node involvement, and the tumor was even smaller than they thought: 4mm. It was indeed TNBC again. I had the dreaded drains for a week, but blessedly had them removed three days ago. No more treatment is needed. It’s too small for chemo to be worth the risk and tamoxifen does not work on TNBC.

I am thankful for that eagle-eyed radiologist who first saw my weird calcifications and called me back in, and for the timing of my mammogram.

I am once again going for daily walks with my husband. Today we did two miles and I hope to keep pushing that until I get back to the four miles that had been our standard.

Family and friends have surrounded me, reminding me I am cherished. Our daughter came to pamper us with love and life and amazing food. And for days after the surgery, our doorbell regularly rang with floral deliveries. I’ve illustrated this post with some of them. I got personal and virtual hugs galore; happy, funny, and thoughtful cards; and I have celebratory lunches with friends every day next week. Soon we will finally head to our Colorado cabin for the rest of the summer.

Now that I have processed it all and got the final, encouraging pathology report, I have regained my perspective. On a scale of one to ten of the worst things that could happen to me, I would rank this at about a four.

My morale is great and I am healing well. I am usually surprised when I try to reach something and it hurts. Then I remember, "Oh, yeah, surgery." 

But I know I got this sucker.


21 comments: said...

I am always so happy to read positive posts about this disease. I am 15 years out from my diagnosis, surgeries and chemo. My original doctor tols me I'd probably be dead within a couple of years. I often want to drive over to his office to thumb my nose at him, but I'm afraid he might try to run me over to prove himself right. :) Your story makes me happy, and that's always good.

Patricia Prijatel said...

Thanks for the laugh! Hugs.

Chris Mott said...

I have missed reading your blog regularly, but was not expecting this news when I clicked it just now! And once again you are a positive inspiration and wealth of knowledge to us out here. My heart goes out to you and your family, yet I know with your spirit and determination, we will all benefit. Thank you for sharing and it reminds me that we need to be always vigilant against this monster!! And slay it we will! (I have recommended your blog to other TNBC survivors, they thank me!)
My oncologist told me that since my 5 year mark is in November, I should use it as a cause for celebration, and that I would be VERY unlikely to get TNBC again, although my risk for other breast cancer would remain the same as other women my age. Now I know that is not all together true. Thank you Patricia, you continue to be my inspiration and I wish you nothing but health and happiness.

Sue in Italia/In the Land Of Cancer said...

So sorry you had to face this again but glad it was caught early. Thinking back, maybe mastectomy would have been a better choice for both of us.
I had to laugh about the insensitive technician, so proud of herself for seeing the lesion. I had a false alarm about 18 months ago that needed biopsing. When I asked the technician how the mammogram looked. She said 'good' but as it turns out, not good for me but she got a 'good' picture of something that needed to be checked out.

Patricia Prijatel said...

Thanks, Chris. I really don't know the odds of this happening, but let's go with your doc's assessment that it is unlikely. Still, if it happens, you just deal with it. Hugs.

Patricia Prijatel said...

Sue, yes, I think I would now recommend mastectomies. But still, this was caught early and I am fine. As are you. And those techs really need a class in compassion, huh?

Gwen Bender said...

Pat - I was shocked when I woke up and saw your post. You are such a strong woman and mentor to many facing TNBC. I am 18 months past my diagnosis. My sister Emily had a new cancer after TNBC and it was Estrogen positive and hers occurred two years after the first in the opposite breast. She is 5 years past the first cancer and 3 years past the second. When I got TNBC, I elected to have a double mastectomy because of what happened to her. We have both had genetic testing and no positive gene was found.

I have read your book many times, especially when the fear creeps back in. It really lifts my spirits. Wishing you all the best!

Holly said...

Pat - so sorry you had to go through this trauma again! But delighted it was detected so early and now you can breathe and not worry about recurrence! I SO wish I'd opted for bilateral mastectomy eight years ago. I worry constantly!! Keeping you close in thought and prayer,

TNBC, stage II, grade III


Patricia Prijatel said...

Holly: Thanks, Holly, And after eight years, you should be darn safe not worrying about a recurrence. A new cancer, though, obviously can happen. Just keep getting those mammograms and doing your self exams. And living your life. Hugs.

Unknown said...

Patricia, you are my hero! Your blog was one of the first ones I found (thank god) when I was diagnosed this april and you book is by my bedside. I am truly sorry you had to go through this again. Thank god you don't have to do chemo...I'm getting clobbered! You have now placed me in a quandary, I was going for lumpectomy after chemo, now I'm thinking mastectomy.....Iwhat a choice!!!??? Keep well dear Pat!

Patricia Prijatel said...

Thanks, Jackie. You need to make the decision you are most comfortable with and only you know what that is. Then live with that decision and, more important, live your life. Sorry chemo is...well, chemo. Hugs.

Anonymous said...

Dear Patricia,

when I got my diagnosis 2 years ago, your blog and your book gave me lots of good energy - I'm still very grateful for that.
I am sure you and the ones around you will have the strength to go through this (and, great, strange as it may seem: it is a new one - that really good).
I'm sending you some additional energy just right now - (directly from Berlin, Germany!!) and wish you the very best!!


Penny Cuninggim said...

Dear Patricia,
I just received your blog information from a wonderful friend who also had TNBC, who met me through your blog some years ago. I am so glad you are posting again, but was not happy to read that you had another set of treatments for a second primary cancer. I am delighted it was so tiny and caught early. Your blog and news of research over the years have been central sources of support for me in my journey. I am now five years out from a 2010 recurrence of TNBC in my (same) right breast. I did not have my left breast removed that year because my oncologist said the chances of the original cancer jumping to the other breast were less than 1%. But of course new C cells can appear. Even given the huge study just published about mammograms and BC, your experience and my detection in 2008 tell me it is better to get mammograms than not. I also am grateful for your post on fasting. I am going to do that for sure. Thank you for your honesty, your positive but not Pollyanish voice, your loving spirit, and your deep wealth of knowledge. May you live in health and peace for many MANY years to come!

Penny C

Patricia Prijatel said...

Penny: Great to hear from you. I often think of your recurrence and how you beat it, which is more good news for TNBC women. The mammography study is troubling. It is true many women are over-treated. But some of us benefit greatly from that early detection. While mine was small, it was already infiltrating, so catching it early, I think, really was life-saving. Hugs. And SOOOOO glad you are doing well. Pat

Unknown said...

Hi Patricia,
I just caught your blog entry as I was googling around for treatment options for 4mm triple negative tumors. I'm 37 years old, BRCA1 positive and had a preventative bilateral mastectomy on 6/30. Wouldn't you know it, there were two small tumors hiding out in the removed breast tissue (3mm&4mm) which weren't detected on routine mammo's and MRIs. Needless to say, I will never doubt having decided to follow through with the mastectomy! I see an oncologist next week to see if any follow-up treatments are necessary. (Hence the googling)

Anyway, I just wanted to say hello to a fellow triple negative gal and to wish you well. I enjoyed reading your entry and hope you're feeling great! :)

Patricia Prijatel said...

Thanks for your note, Ann. Glad you got those puppies early and had the mastectomy. Keep in touch--I'd like to know how you are doing. Hugs.

Unknown said...

Glad to have found your blog and I look forward to exploring. I was dx with triple neg at the end of Oct 2014 and am still in treatment, chemo, then BMX and will soon finish up radiation.

Unknown said...

I am so glad I found your blog. I cannot wait to read it. I had Hodgkins lymphoma in 94 and in 25014 I was diagnosed with tnbc. Here is my cancer story:

Brsski said...

I have recently been diagnosed with TNBC and meet with my doctor tomorrow. My tumor was 1.1cm and I had a lumpectomy and had two clear nodes and clear margins. I know I am in for a long combination of treatments and was glad to find your blog and will definitely be reading your book. Glad they found your second cancer early,

Anonymous said...

Patricia, I found your blog while receiving treatment for TNBC in 2009, neoadjuvant carboplatin and abraxene (because I was allergic to the Taxol), lumpectomy, no node involvement and 33 rounds of radiation. The chemo took a toll, it was years before my chemofog lifted and my energy got back to normal, but I made it. Then a month ago my surgeon suggested an MRI and BRCA testing due to changing "protocols". The test showed a 4mm tumor. I had a mastectomy of the left breast (same place as 2009) 3 weeks ago, TNBC again, and there were 2 tumors (4 mm & 3 mm)found during the pathology of the breast. My surgeon suggested chemo, my oncologist is saying no to chemo. Why can't I Google any info which gives me a statistic on whether this will return metastatically? Or could I be in the clear? Do people really never die from TNBC?

Patricia Prijatel said...

Sounds very similar to mine. I don't think they have enough information to determine if it will metastasize. The one stat I found, on breast, indicated that the chances of something smaller than 6mm metastasizing were too small to warrant chemo. Still, do what your gut tells you. And did I say people do not die of TNBC? Sadly, they do, and I have known way too many of them. Most don't, though. Hugs.