I'm not a medical professional. I've never been through this before, and everything I share is based on my own personal experiences guided by a medical team that I trust. Just like the diagnosis is unique, the course of treatment is also unique. I encourage you to research everything recommended to you by your medical team. It will be based on your complete medical picture. What's right for me, might not be right for you. I can't tell you what's right for you, but I will share with you some of the information that I used to make my decision and some of the facts that I researched. I feel extremely lucky and blessed that with my diagnosis there were choices. I'm saddened that many cancer patients aren't offered any choices.
My diagnosis was Ductal Carcinoma In Situ (DCIS). That is considered to be Stage 0 breast cancer, and is non-invasive. Before I had my diagnosis, I chose to do a surgical biopsy of the tumor - or lumpectomy - where the entire tumor was removed for biopsy. When my diagnosis came back as DCIS, I had a choice of following up with a second surgery to remove more tissue that would ensure all of the cancerous tissue was removed followed by radiation treatments, or to do a mastectomy that would not require radiation or any further treatments. I chose to have skin-sparing bilateral mastectomy with immediate reconstruction that would be completed in phases. My surgeon also recommended a sentinel lymph node biopsy to try to ensure that no cancer cells had spread to my lymph nodes. I chose to do that as well.
Why did I choose mastectomy? It's a major surgery - my first in fact. Because I chose mastectomy, my treatment did not include radiation or drug therapy. (Chemotherapy is not usually associated with this diagnosis, so none of that either.) I believe that I have reduced my chances of recurrence as much as I possibly could have. There are certainly no guarantees, but I sleep better knowing that I don't have to go through this testing and these surgeries to follow up on a lump in my other breast years down the road. When I met with a radiation oncologist he told me that either way I went, I couldn't make a wrong decision. But he also told me that if I had another lump in the future, that my medical team would likely recommend mastectomy at that point. That would mean going through every single step that I've been through all over again. Finding the lump. Worrying. Mammogram. Ultrasound. Biopsy. Waiting for results. MRI. And then - surgery again. Likely a mastectomy.
I'm a worrier. If I had chosen lumpectomy and still had breasts, I would be constantly scared that I'd find another lump. I'd be counting down the days and hours until my next mammogram, and I would be living in fear. I'd lose sleep over it. Some women know that they will have body image concerns, but I honestly am not one of them. I don't care at all about losing my breasts and having scars. My fiancé also doesn't care. I don't feel like less of a woman at all. I don't plan to have any additional children in the future or breastfeed again. And I don't have a need for functioning breasts. I'm totally comfortable with the idea of having reconstructed breasts.
The language of cancer is foreign to someone who hasn't been exposed to the terminology before. I had never heard of DCIS before my diagnosis. I knew about stages of cancer, and that women that I have known have gone through the journey before me, but I didn't have to memorize the terminology. Here's a rundown on my diagnosis, if you're uncertain about the terminology and would like to learn a bit more.
Ductal Carcinoma In Situ (DCIS) is a noninvasive condition in which abnormal cells are found in the lining of a breast duct. The abnormal cells have not spread outside the duct to other tissues in the breast. In some cases, DCIS may become invasive cancer and spread to other tissues. At this time, there is no way to know which lesions could become invasive.
DCIS is classified as Stage 0. The breast cancer stage is based on the results of testing that is done on the tumor and lymph nodes removed during surgery and other tests.
Most patients with breast cancer have surgery to remove the cancer from the breast. Some of the lymph nodes under the arm are usually taken out and reviewed to see if they contain cancer cells. A sentinel lymph node biopsy is the removal during surgery of the sentinel lymph node - the first lymph node to receive lymphatic drainage from a tumor. It is the first lymph node the cancer is likely to spread to from the tumor. A radioactive substance and/or blue dye is injected near the tumor. The substance flows through the lymph ducts to the lymph nodes. The first lymph node to receive the substance or dye is removed. A pathologist views the tissue under a microscope to look for cancer cells. If cancer cells are not found, it may not be necessary to remove more lymph nodes.
The standard recommended courses of treatment for DCIS may include:
- Breast-conserving surgery (like lumpectomy, which removes the tumor and a small amount of normal tissue around it) and radiation therapy with or without tamoxifen
- Total mastectomy (surgery to remove the whole breast that has cancer; some of the lymph nodes under the arm may be removed for biopsy at the same time as the breast surgery or after) with our without tamoxifen. In a bilateral mastectomy, both breasts are removed. If a patient chooses mastectomy, breast reconstruction (surgery to rebuild a breast's shape after a mastectomy) may be chosen. Breast reconstruction may be done at the time of the mastectomy or at a future time. The reconstructed breast may be made with the patient's own (non-breast) tissue or by using implants filled with silicone gel or saline.
- Breast-conserving surgery without radiation
I researched and considered alternative treatments as part of my plan as well. Each patient is entitled to be their own advocate and ultimately be in charge of every step that you take. I'm learning about, and taking steps to improve my nutrition every single day. I also believe that increased activity will benefit me. I believe that everyone can benefit from that no matter what.
I used Navigating Cancer and Blood Disorders, a web site founded and developed by accomplished professionals from the healthcare and technology worlds, as my primary source for describing DCIS and treatment options in this blog. This web site was provided to me by my oncologist, and is one that I trust. I encourage you to use sources provided to you by your medical team as well. There are tons of sites out there, but please spend most of your time at the ones your medical team refers you to.
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