The 7 Things I Wish I Had Known When I Was First Diagnosed With Breast Cancer
4 years ago today I found the lump that changed my life. I won't call it the anniversary or even my cancerversary, as I've heard it called, because there is truly nothing to celebrate about in such an event.
But I do want to make note of the day by sharing some information for anyone else who may either be recently diagnosed, or knows someone who has recently been diagnosed with breast cancer.
There are many, many good breast cancer sites that offer wonderful information, some of which you can visit by clicking here. My favorite was and still is BREASTCANCER.ORG. This site is solely dedicated to breast cancer and is the most comprehensive site I've found, covering each potential phase of the treatment cycle from diagnosis through reconstruction in great detail. It's also extremely well organized and very easy to navigate which is helpful during a time when you're faced with many overwhelming decisions.
I spent many hours reviewing this site at various stages of my journey from the day I was diagnosed, through my reconstruction.
When I was first told that I had breast cancer, of course I was in a state of complete confusion and panic. I was at a loss about what to do as I had no personal familiarity with breast cancer and didn't know what to do.
Since it's so very important to make good decisions when you are going through such a frightening medical emergency, I am listing below the most critical steps to take after you or a loved one are first diagnosed, along with links to the site above that will help guide you through the process:
1. Please take the time to find the best breast surgeon available in your area.
Because breast cancer is so prevalent in the US, there are many very good regional cancer centers across the country. Ask for recommendations from both friends and health care professionals in making your breast surgeon choice. I asked my OBGYN and he recommended the two best breast surgeons in New Jersey. I then chose the one that was in my healthcare plan, which is an important consideration given the exorbitant costs associated with breast cancer.
2. Be sure to have your breast biopsy done by a breast surgeon.
There are several different types of breast biopsy procedures. The makeup of your specific breast cancer will determine the best biopsy procedure for you, but it should be done by a breast cancer surgeon, not a general practitioner.
3. Ask for a copy of your biopsy report.
After the biopsy, it takes about 5-7 days for the biopsy report. Once available, please be sure to review it thoroughly with your breast cancer surgeon, and if chemotherapy or radiation are recommended, also review it with your oncologist. Ask for a copy of it for future reference, it will be the guidepost that will be used to determine all of your future breast cancer treatments. Before I had breast cancer I didn't realize that there were many different types of breast cancer and that there are different ways of treating each, with different chemo regimens as well as different adjutavant therapies available for each, based on the specific type of cancer.
4. Learn how to read your biopsy report.
Click here for a downloadable pdf from the breastcancer.org site which explains how to read a biopsy report. This is a very helpful tool which I strongly suggest you review in order to understand the makeup of your specific cancer. The primary things you'll want to know and remember are: the type of cancer (ductal, lobular, invasive, non-invasive, etc.); the Stage of your cancer; the Grade; whether it's Estrogen or Progesterone positive and whether it's Her-2 negative or positive.
Again, these key data points will inform your subsequent treatment options and you will want to remember them for future reference. Don't expect that your surgeon, oncologist or radiologist will always remember the details of your case. You need to be the "project manager" for your treatment as your physicians may not always readily remember the specific details of your specific case, given the large work load they carry.
5. Interview oncologists and find one that you trust, respect and feel comfortable with.
If your breast surgeon recommends chemotherapy as part of your treatment regimen, please take the time to ask friends and trusted health care professionals for recommendations for an oncologist. If you're going to be proceeding with chemo, you'll be spending a lot of time with your oncologist. First, you'll be seeing him/her before each chemo treatment. Then after chemotherapy is completed, you'll probably see him/her every 6 months for at least 5 years, so you want to be sure that you trust, respect and feel comfortable with your oncologist.
6. Set up a support system of friends and relatives who can help you through the process.
It truly takes a village to help a woman get through a breast cancer diagnosis. I found that people wanted to help. Let them. You'll need the physical support of meals being delivered to help feed your family when you're feeling nauseous after chemo or are recovering from surgery. Even more importantly, you'll want emotional support from many people during this time, and I found that when I finally gave up my need to control everything and let people know that I needed help, they all rose to the occasion. I made many deep and lasting friendships during this time-frame and I will never forget how much love and support was sent my way throughout the entire year and a half.
Second opinions and research are very important if your surgeon has recommended a mastectomy. The decision is a very personal one, as is the decision on whether or not to reconstruct, so you will want to do a lot of research. Breastcancer.org has helpful sections dedicated to both mastectomy and reconstruction and will help you prepare for this phase of the treatment. It's critically important to find a good, reputable plastic surgeon who is familiar with the various forms of reconstruction in order to ensure that you achieve the best outcome.
From my experience, it's also important to find a plastic surgeon within your network as the cost of reconstruction is astronomical. Since plastic surgery is often an elective procedure, I found that most of the very top plastic surgeons in my area did not participate in health care plans, so be sure you check to see if yours does.
Navigating through the initial days of a breast cancer diagnosis are very frightening and I hope that the road-map above will help you or your loved one feel a little more in control of their destiny. Once you begin the process, there are many other things you'll need to consider, so please read, read, read, but this initial plan above will help guide you through the very important first steps.