Oct 232015
 

I had breast cancer, but I don’t get mammograms. In fact, throughout the entire diagnostic process, I never had a mammogram.

How is this possible?

When I first noticed a breast lump, my ob-gyn recommended an ultrasound because of my age. I was only 34. She said it was almost certain to be benign. The image on ultrasound didn’t look benign to me, but the doctor doing the biopsy told me it probably was.

When the biopsy came back suspicious, I had an MRI to try to rule out cancer. The MRI involved use of a contrast agent that can cause kidney failure and death in a tiny percentage of cases, so that was a little nerve-wracking. But I figured that if it meant I didn’t have to have surgery, it would reduce more risk than it created.

Unfortunately, the MRI didn’t rule out cancer. So I had an excisional biopsy and later a lumpectomy and radiation.

My No-Mammogram Rationale

Afterward, I told my oncologist that I was no fan of mammograms and wasn’t going to do them. Radiation risks aside, I’d read a study and an article that indicated simply massaging the breast during sentinel lymph node biopsy surgery could increase the rate of micrometastases (isolated cancer cells or cell clusters in the sentinel lymph node or nodes).

My common-sense danger detector went off. If massage could cause micrometastases, what about heavily compressing my breast in a machine?

I decided not to do that.

Ultrasound Follow-Ups

Instead, I told my oncologist I was open to ultrasounds, so that’s what I’ve been doing since then. They are painless, non-invasive, and more accurate than mammograms for younger women with dense breasts.

Seven months after radiation ended, my first follow-up ultrasound showed something troubling, but the doctors at the imaging center said my original pre-biopsy ultrasound was of such poor quality that they couldn’t be sure if what they saw was new. I ignored their recommendations for an MRI (you get harassing letters when you do that!) and decided to follow up with thermography. When thermography showed no issues, I waited a few months and then had another ultrasound. Nothing had changed, so it was labeled benign, and it has stayed that way for many years — with one exception: The nodule they labeled “particularly concerning” has entirely disappeared.

Don’t Panic

A key part of this follow-up process, for me, has been not to panic. I’m on a best-in-class alternative treatment program to prevent recurrence, and it’s worked wonderfully for me, so I know I have time, knowledge, allies and weapons. Mammograms, however, are not part of my arsenal.

May 172013
 

A post on breastcancer.org caught my attention, and I responded to it, but wanted to share my thought process here as well. I’m aware that my decision to have radiation treatment will be the most controversial part of my story for some readers, and the least controversial part of my story for other readers. So, for all readers:

I do not regret my decision to have radiation treatment. But I took control of my treatment, and I took steps to repair the damage afterward.

After an inconclusive needle biopsy (which I will never do again), an inconclusive MRI, an inconclusive excisional biopsy, and a lumpectomy that finally determined I had a non-aggressive mucinous carcinoma (not as bad as it sounds), I did a ton of research before meeting with the radiation oncologist. I determined that I would do radiation ONLY in the prone position 1. I also wanted partial breast radiation. She convinced me to do whole breast radiation, but we did it in the prone position. My heart and lungs were not in the radiation field. I insisted that the sentinel node biopsy site be removed from the field, because the sentinel nodes were negative. We argued, until I stated I was out unless the site was out. Then they agreed that this made logical sense. I also had them use 3D-CRT instead of IMRT to reduce the risk of a second malignancy from distant scatter 2.

Because I knew I was not going to take tamoxifen 3, I waited a minimum amount of time between surgery and radiation — 4 weeks 4. I had 16 treatments, for a total dose of about 42 Gray. A long-term study showed that this particular regimen was actually better for my particular tumor characteristics and my age 5. Also, this left me with sufficient headroom that if this ever happens again, I can have another lumpectomy and partial-breast radiation.

I used Boiron calendula lotion during radiation, which worked great to prevent any awful skin issues, and had some effects that proved to be temporary. I had a light sunburn that took a long time to fade. And a few months after treatment, my breast became harder. But around then, I got on my vitamin, mineral and hormone balancing program with a well-known doctor-ally. My results have been amazing, and my life has been amazing, since then. I have repaired DNA damage, and my breast became soft and normal-colored again. The dark spots that my dermatologist said would only worsen over time, have disappeared.

So, I found that I COULD recover from radiation damage. I didn’t know that when I made the choice to have treatment, but I made the decisions I felt were best with the information I had at hand, I was strategic and took control of my health decisions, and I do not regret it.

Would I do it again? I have no idea. With my health and wellness program, which gives me meaningful data every 3 months so I can see when and if I need to course-correct, I’m trying to put myself in a position where I will never have to make that decision.

Notes:

  1. Lying Prone for Radiation Best for Breast Tx, MedPage, 2012.
  2. Radiation-induced second cancers: the impact of 3D-CRT and IMRT, International Journal of Radiation Oncology, 2002.
  3. Caveat: Tamoxifen was later deemed “optional but preferred” for me by three different oncologists. I declined it.
  4. Delaying Post-Surgical Radiation Increases Risk of Breast Cancer Recurrence in Older Women, Study Finds, Dana-Farber Cancer Institute via ScienceDaily, 2010.
  5. Long-Term Results of Hypofractionated Radiation Therapy for Breast Cancer, The New England Journal of Medicine, 2010.