Triple Negative Breast Cancer

I have a new oncologist and I love him. Almost four years ago, I moved 400 miles from where I had cancer treatment. I haven’t had adequate follow-up since except for routine mammograms prescribed by an internist. For someone with dense breasts, a routine mammogram does not give an adequate picture. With a high deductible came a reluctance to establish with a new oncologist. I’d asked other patients what kind of follow-up treatment their oncologists prescribed and took false assurances from my yearly mammograms. What I didn’t understand (although I should have), is because not all breast cancer is alike, follow-up treatment can vary as well.

I did try to get the internist to order a breast ultrasound for me on more than one occasion, but she was convinced that an annual mammogram was sufficient. She said, “Your cancer couldn’t have been very bad if you had a lumpectomy.” I told her that wasn’t true. The staging, genetic testing, and discovery of the malignant lymph node weren’t known until during and after surgery; otherwise, I might have made a different surgical decision.

Q: How do you know when your primary doctor isn’t appropriate for your cancer care?

A: When you figure out you know more than she does about breast cancer. 

My breast cancer was triple negative (TNBC) and I also tested positive for the BRCA2 gene. This combo typically produces extremely aggressive cancers. I knew from my records that mine was as aggressive as they come.

I learned two things I hadn’t known before. 1) The malignant lymph node that had been removed during my surgery had a larger tumor than the one in my breast. I’d read my records, but that somehow escaped me. I’d always pictured it as a speck when in fact it was more like 1.5 inches.

Secondly, while we typically refer to those who finish treatment and are NED (no evidence of disease) as being in remission since breast cancer can recur well beyond the five years commonly thought, that is not the case with triple negative breast cancer. Because TNBC is so aggressive, recurrences typically occur after two years. If I’d had a recurrence, I’d likely be dead right now, particularly without adequate follow-up, but here I am six years from initial diagnosis. In light of that fact, my oncologist pronounced me cured. Not in remission. CURED!

The good news is I don’t have to worry about a recurrence or secondary cancer stemming from the 2010 cancer.

The bad news is that I’m high risk for a new primary cancer in my breasts and ovaries. Dr. D. was more worried about my ovaries because unlike the breasts, they don’t have good screening tools to catch ovarian cancer early on. He recommended surgery, which I’ll likely get at some point but it’s not a convenient time at all, so for now, he has me on a six-month schedule alternating between mammograms, and breast and pelvic ultrasounds, and six months later having a breast MRI.

Today I had a pelvic ultrasound. Tomorrow I have a mammogram and breast ultrasound.

I also had blood work, including the CA125 (for ovarian cancer).

Next week I see Dr. D. again to discuss the results of all the scans and blood work.

More good and bad news about TNBC patients:

The good news: TNBC patients do not take Tamoxifen or AIs (aromatase inhibitors).

The bad news: TNBC patients do not take Tamoxifen or AIs.

TNBC means the cancer is estrogen receptor-negative, progesterone receptor-negative, and Her2 negative so taking hormone suppressors is pointless. I’m glad I don’t have to suffer the side effects of AIs. At the same time, it’s distressing that after completing surgery, chemo, and radiation, no targeted therapy exists for the most virulent form of breast cancer.

One nice byproduct of this appointment is I realized that chemotherapy actually did save my life. I’ve complained about the aftermath of chemo, with all its residuals and collateral damage, continuously on this blog, even thinking the treatment was too aggressive and perhaps unnecessary. Now I understand it really did save my life. Yes, my quality of life has suffered, but I’m alive. It’s a whole lot better than dead.

Another nice thing that came out of that appointment: The nurse was taking down my history and current complaints. I mentioned that I’d recently been diagnosed with the Epstein-Barr virus/Chronic Fatigue Syndrome. She stopped writing, looked at me and said, “Boy, you can’t catch a break, can you?” I said, “No, it doesn’t seem like it.” She only knows a mere fraction of all I endured the last six years, but she didn’t need to know everything in order to understand. She broke from the routine of her job and offered me empathy. When she said those words, I felt heard. I felt seen. I felt understood at a level that went beyond words or even knowledge of all the pieces.

When Dr. D. walked in, he apologized for my wait, but explained he had taken the time to read through all of my records. Not once did he callously flip through papers he pretended to have read. He didn’t need me to repeat a word of my diagnosis and treatment. He told me in detail and discussed where we go from here.

I know many of you experience anxiety when it’s time to visit your oncologist, but after having inadequate treatment the last few years, all I feel is relief that I found the right team for me.

For more information on TNBC, the Triple Negative Breast Cancer Foundation is a good place to start. And, yes, we need a cure!

triple-negative-breast-cancer-29-638

Comments

  1. I’m so glad you found a good doctor, and it sounds like a good visit with competent and caring providers. Looks like you’re in good hands for monitoring going forward! Hope your tiredness is improving too! Lovely update!

    • Elaine, the fatigue is subsiding. It still slows me down and requires managing, but I”m able to get through a full day at work and live more normally. Thanks for asking!

  2. A good oncologist can’t be beat! My first medical oncologist went to teaching at the end of my treatment and I had to find a new one – I wasn’t happy about that. But I love my new oncologist. She is great. She understands me. She talks openly about risks etc. I am glad you got a good new oncologist.

  3. Sounds like your new doctor is a keeper! I’m thrilled for you. Sending hugs!

  4. Am glad you’re being watched and heard! Send a copy of this to the old dr.

  5. Eileen, I am so glad you found someone who pays close attention and offers empathy to your situation. It’s hard to find doctors we’re fully happy with. I now have to find a new PCP because he is part of some ‘membership’ program. In order for me to continue seeing him, I have to pay $2500 a year out of pocket. Breaks my heart because I really liked him a lot. Can’t stand it when I have to switch doctors, especially when I already like them. And what’s up with him charging all that money anyway? Not cool.

    Thank you for the information regarding TNBC. I too will be removing my ovaries in the next few years because OC runs in my family. I do sonograms 2x a year and the CA125. And because of my gene, I need to do both mammo and MRI. None of this is fun, and I hate it, but I rather check than to ignore.

    I hope you’re feeling better these days. It’s always nice to see you. xx

    • Rebecca, is $2500 your deductible? Or something else? Sounds weird and I’m sorry you have to change doctors. We do get attached to the ones we like. If it’s any consolation, I loved my oncologist in L.A. After moving, I didn’t expect that I’d love my new onc even more. I hope you find someone who’s not only a good doctor, but connects with you personally and earns your trust. xoxo

      • Thank you, Eileen. They now have this membership thing doctors can be part of, at least in the NY area. My GYN now charges me $30 yearly membership to see her but I don’t mind that. $2500 membership to see my PCP would give me more flexibility with him. I can basically bother him during his dinner. I still think it’s crazy. I hope to find someone as good though. Glad you like your new onco. xoxo

  6. Hi Eileen, I am so glad you found a medical team that “gets” you and is empathetic. What a relief! I’m also glad you are getting monitored closely, too. That internist who seemed to have no clue about breast cancer is a real dud. I’m glad you fired her. I’m glad you’re doing as well as you can six years out. Like you said, at least you are alive; it also must be reassuring to know that chemotherapy saved your life. xoxo

Leave a Reply

%d bloggers like this: