In less than a month, three friends have contacted me because an immediate relative was recently diagnosed with breast cancer. With the disclaimer that I’m not a medical professional and every person’s case and experience are unique, here are my thoughts for these women:
- Make sure that you surround yourself with a team of doctors that you support wholeheartedly. Your team will include your oncologist as your main point of contact, your breast surgeon, a radiation oncologist if radiation is needed, and various technicians and nurses. If you don’t feel an affinity for a person with whom you’ll need to regularly interact during this process, find a different doctor, tech or nurse! It is your prerogative as the patient to do so!
- Make sure that you take notes or bring a loved one to take notes during your initial appointments. That will help you understand your diagnosis and the plan for surgery and treatment.
- Ask your oncologist to give you a referral for a second opinion. Have his or her receptionist help you with the scheduling of that appointment. When there is the possibility of major surgery, chemotherapy and radiation, you want to give yourself some peace of mind that the plan of attack is the right one. If there’s a difference of opinion between two doctors, remember that you have the right to get a third opinion!
- Realize that a lot will need to happen from the time you’re first diagnosed until you begin chemotherapy or have surgery. You’ll get a breast MRI. You may need more biopsies. You’ll need to make appointments to meet with an oncologist and breast surgeon. You might require gene or oncotype testing. Then, you’ll need to play the waiting game for results or scheduling for all of these.
- In a conversation with six friends who have had double mastectomies and chemotherapy, the prospect of more surgery didn’t make them anxious. However, the thought of more chemotherapy and losing their hair again did. I didn’t appreciate that until I had my double mastectomy. The surgery surprisingly wasn’t that painful. The most bothersome and limiting part of the process is the need for drains under your armpits to remove excess fluid from your breasts. The drains – not the surgery itself — make it difficult to raise your arms or sleep comfortably. I took this video two weeks after my double mastectomy to show what the drains look like and how I was doing:
- Quite a few friends and I also found the expansion process of stretching the thin skin to accommodate the implants to be more painful than the surgery. Expansion allows for the best end results, but for those women who need to go in for several expansion appointments, it’s very uncomfortable. For more of my tips on how to prepare yourself for a double mastectomy, check out this post.
- If you test positive for a hormone-positive breast cancer, your cancer feeds on estrogen and progesterone. Your doctor may recommend hormonal therapy since that has been shown to significantly reduce your risk of recurrence. Giving a pre-menopausal woman daily medication to suppress the estrogen in her system throws her body into early menopause. On the surface, no periods might sound like a good thing. But, try to prepare yourself if you can for the possible side effects. These include hot flashes, vaginal dryness, sleep difficulties, and irritability. As if those weren’t enough, these symptoms don’t appear gradually or sporadically as though you were in natural menopause. They come on in full force rapidly, which adds insult to injury during the treatment process.
- Try to line up as much help and support as you feel comfortable with in advance. You won’t just need rides to and from the hospital. You’ll also need to secure transportation to the follow up appointments and other places until you’re cleared to drive. Make sure you have help with your meals, laundry, children and pets. Figure out what, if anything, you can do from home. Let your employer know that you’ll need to take it easy even when you’re able to return to work.
- I always end all of these calls and emails with two reminders:
- There’s no right or wrong way to react to a cancer diagnosis. Go easy on yourself as you process the news and what lies ahead; and
- I’m here if they – or their loved ones – need anything. And, thanks to the Internet and the #BCSM community, there’s so much support out there for someone who has been recently diagnosed. This community is a beacon of hope and camaraderie in the midst of a long, dark tunnel! Take advantage of it if you need to!
What advice would you add? What did you or a loved one find helpful?