It can be difficult for others to understand what you’re feeling without going through it themselves.
When it comes to breast cancer, your medical team can provide you with a wealth of expert medical advice.
But when it comes to the actual experience — how to manage the side effects and long-term insight on your options — some insight may be better understood by talking to other women who have walked the breast cancer path before you.
1. Fertility treatment options are best explored before you begin chemo
Many times, this step can be overlooked in the process of expediting your treatment.
However, discussing fertility preservation options before beginning any chemotherapy — which could impact long-term fertility — is important.
2. When your hair falls out, it could be painful
As the follicles die, there can be a painful and tender sensation on the scalp.
Many survivors will recommend you shave your head with a close razor as soon as this sensation begins in order to minimize the discomfort.
It’s always important to talk to your treatment team about unfamiliar side effects you’re experiencing to know if they’re expected parts of the treatment.
3. You may experience significant weight gain from the steroids
Many people associate weight loss with chemotherapy, but some women have the opposite experience and actually gain weight. Either can be challenging, both physically and emotionally.
4. Medication can affect your sex drive
Lupron and other hormone-blocking medications can cause vaginal dryness and painful intercourse, as well as decrease your sex drive.
You’re not alone in these challenges.
There are treatment options, and the sooner you intervene, the better. Don’t be embarrassed to ask about your options in terms of topical lidocaine, dilators, and daily moisturizing.
If your oncology team cannot advise you further in this area, they should be able to refer you to a health practitioner who can. Your gynecologist may also be a good choice for discussing your concerns.
5. You have options when it comes to breast reconstruction
Don’t be afraid to get a second or third opinion. Most surgeons offer or recommend the surgery types they’re most familiar with.
They won’t be offended by you getting another opinion, and it will help you come to a decision as a more informed and empowered patient — which is critically important.
6. Your implants may be cold to the touch
This is a rare and unexpected experience that occurs in some women who’ve had implants, and it can be helpful to be prepared for this ahead of time.
Regardless, it’s important to inform your surgical team so they can ensure there are no concerns related to your healing.
7. Complementary treatments help to manage side effects
Ask your local cancer support centers or organizations for referrals. Some centers have an integrative oncology program where these services are offered by a team that can communicate with your cancer treatment team.
8. Life after cancer can be harder emotionally than active treatment
When all the appointments are done and you’re not being monitored regularly, it can be unsettling.
Sometimes it can feel even harder if those around you are ready to celebrate and “move on,” and you’re not.
Don’t be afraid if you find yourself struggling to cope. You’re not alone in these feelings and it’s a good idea to reach out to your treatment team about support services, which may include a mental health professional.
9. Reconstruction is a journey
Not everyone feels comfortable with their outcome after reconstructive surgery. For many, the first surgery is the first phase of a two-step process, or more in some cases if needed.
In my case, it has been 5 surgeries over 4 years, and I’m planning to do more revisions this year.
If you’re dissatisfied, give yourself time to adjust to the changes and then don’t be afraid to ask what revision options are available.
The bottom line
The first-hand experience you will gain by connecting with other breast cancer patients and survivors can help you feel less alone and help you navigate your own cancer journey with support.
Find other cancer survivors with similar stories in the BC Healthline app, the Young Survival Coalition groups, and even through hashtags on social media, such as #breastcancersurvivor, #youngbreastcancersurivor, and #doublemastectomy.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.