I've been thinking about "breast cancer awareness." Many, many (marketing) efforts are aimed at this result. But what does it mean?
What should it mean? What would I have liked it to mean back when I heard the words: "You have breast cancer." Are there things it would have been nice to be aware of?
You bet! Let's see if I can do a decent job of listing a few things. Please help me out and add anything I've forgotten in the comments--thanks!
1. If you feel anything out of the ordinary with your breasts, bring it to your doctor's attention immediately. They should not brush you off or dismiss your concerns. They should order tests and maybe even a biopsy, which is the only way to know for sure what you're dealing with.
2. If things do progress to the biopsy stage, think about how you would like your doctor to let you know the results. My doctor's nurse practitioner called on a Friday and told me when I was putting my two-year-old down for a nap. She couldn't answer any of my questions, and I had to wait until Monday to get moving on appts. with oncologists, etc. Needless to say, it was a freakishly stressful weekend made worse by me desperately searching the Web for information. For me, it would have worked better if I had requested that my doctor (ob-gyn) herself tell me the results of the biopsy during an appointment in her office so I could bring my husband. Remember that 80% of all breast concerns are benign, but giving some direction on how you'd like to receive your information can help you take charge of your care from the start, if needed.
3. If you do get the bad news and just can't believe it, it's okay to send the biopsy sample out for a second opinion. Find out which hospitals and clinics in your area are National Cancer Institute (NCI) recognized for breast cancer. They're good places to get a second opinion on your pathology and to make second opinion appointments with oncologists and radiation oncologists, if needed. Even if you've never done a second opinion before, now is the time. It will help you understand your diagnosis and get a better handle on the treatment that is right for you. Check with your insurance company (find your company's HR or benefits person to help if needed) to see what they cover on second opinions. I've found that you can consult with as many doctors as you need once you find out you have cancer. And it really should be like that. But of course, you'll want to see what's covered in your case.
4. Act however you feel you need to. No one should tell you how you should react to this, or really any other news. I remember an article in Parade magazine that advised taking the day off work after you've received such news. That makes sense. Get someone else to stay with you, if it would help. I called my husband at work and told him the news; then I told him he should just stay at work for the rest of the day. I should have told him I needed him at home, and to see if it would work out.
5. If it is cancer, get ready for a slew of appointments. The first will be with a breast surgeon. They are considered the lead doctors in a bc diagnosis, even though you'll likely also meet with other specialists such as oncologists and radiologists. Find out who is the most experienced breast surgeon at your hospital. Who does the most mastectomies and the most lumpectomies? Is there someone dedicated to just these types of surgeries? Find out if there is a nurse in charge of organizing things for newly-diagnosed breast cancer patients and ask these questions. If possible, see if you can attend a breast cancer or women's cancer support group at the place where you're thinking about having your operation, and ask who is the best breast surgeon--generally, these ladies will tell it to you straight. If your facility has a social worker for cancer patients, see if this person can help with these questions, and if they can put you in touch with some women who are in a similar situation as you but farther along the path, then ask them who are the best doctors and why. Make appointments with as many surgeons as you want and see who you feel the most comfortable with (after checking if your insurance will allow this). I was assigned to a breast surgeon because he was the first available to take my case. In our first meeting, he laid out a plan that he later contradicted. This made me nervous, so I squeezed in an appointment with another surgeon. He walked in, told me my story and explained what course of action he would take and why. I simply had to have him operate on me. He was booked, because he was the doctor who did the most breast surgeries. But because I was insistent that he was the right one for me, his nurse pulled some strings to work me in. I'm forever grateful for this. So if you don't feel exactly right about something, make another appointment to get all your questions answered or to check out another doctor.
6. If your breast surgeon doesn't offer, ask her/him for a referral to a plastic surgeon before you decide what type of surgery you will have. Once you've found the right breast surgeon for you, ask if they work with a particular plastic surgeon, and if the two can consult to give you the best outcome. My plastic surgeon designed the incision that would put me in the best shape for reconstruction. My mastectomy scar also looked about as good as it could have during the one and a half years I waited before starting reconstruction. (My oncs and radiologists actually commented on how nice the scar looked, :-#)
7. Realize that plastic surgeons might not tell you about all your options for reconstruction. Sometimes they highlight only those procedures they can do or prefer to do. Ask what are all the types of reconstruction that are available to you--both with them and beyond them. Stress that you are looking for the right method for your particular case. Ask what they recommend and why; why would they not recommend the other options.
8. Ask the plastic surgeon to also help you consider if immediate or delayed reconstruction is right for you. Again, stress that you want this decision based on what's right for your particular case, not what a plastic surgeon can or prefers to do. Not all facilities can do all types of immediate reconstructions. Mine couldn't do an immediate or a delayed DIEP, but at the time I needed a mastectomy, I didn't have enough fat for a DIEP and it was obvious I'd probably need radiation. So having a skin-sparing mastectomy and delaying reconstruction with the eventual goal of getting a stacked DIEP somewhere else was my decision. However, if my body could have produced a DIEP and if there was a pretty good chance I wouldn't have needed radiation, it would have been a good idea to look around and find a place that could do both the mastectomy and an immediate DIEP reconstruction. Aesthetic results are generally best if it's all done at one time, and scarring can be minimized. There are even places now that can do immediate nipple-sparing DIEP reconstructions. A few years ago, no one was doing the nipple sparing option.
9. Do your research. Ask the ladies at local breast cancer support groups for advice. They should be especially familiar with the choices in your area. If your doctors don't do the procedures you want, ask for referrals to ones who do. Check in with online communities such as breastcancer.org. Their discussion boards are very helpful, and the ladies will answer any questions you have.
10. Take someone you trust with you to appointments. There will be a lot of information, and you will want someone else to help you remember it all and make sense of it. It also helps to get someone else's opinion about a medical provider--especially if it's someone who knows you well and who truly cares about your welfare. If you have young children and don't have anyone to watch them for all the appointments, see if you have a crisis nursery in your community. They are often happy to work with families going through tough times like this. Once you establish a relationship with them, they can support you throughout your treatment.
11. This will be hard, and no one should have to spend a minute on it. But you can do it. Take all those talents you so generously give your employers and friends and family and dedicate them to getting the best possible care you can find.
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