I am 30 years old and was diagnosed with breast cancer, specifically invasive ductal carcinoma. Before my diagnosis, I didn't even know what that meant. Now I have been forced into a reality where I not only know what it means but my doctors appointments and daily thoughts are filled with other previously unfamiliar words like neoadjuvant therapy, metastases, HER2 and triple negative.

I started this blog in hopes that some of the information I share may be helpful to other young women in a similar situation. Rather than posting my day to day experiences, feelings and progress, I plan to share some of the things I have learned along the way. Being dealt this hand in life at 30 years old brings with it some unique issues and questions. Will I ever have kids? How will this affect my relationships with my husband and friends? What is my long term prognosis?

Through this site you may find that my way of dealing with things is a bit different. I want to be educated about my disease and take an active role in my treatment and recovery. I want to understand every part of my pathology report, what it means, and feel confident that my doctors are recommending the best course of action. At each stage in my journey, I have experienced challenges with finding answers to my questions and ensuring that the medical professionals treating me really understand who I am and why my way of dealing with this disease may be unlike other women. My hope is that people will be able to relate to my experiences, learn from them and find some comfort that they are not alone.

Thursday, 14 April 2016

Now What?

Now that chemo, surgery and radiation are done, it is scary to think that you are really on your own. The doctors don't need to see you for another 3 months, there are no more appointments and you are left with a feeling of 'what the hell just happened'? The part that scares me the most is my doctor's lack of information about how to prevent recurrence going forward. My last doctors appointment went something like this:

"How are you going to monitor that I remain healthy and cancer free?" - Me
"We are going to schedule follow up appointments with you every 3 months" - Doctor
"But those appointments are just a quick physical check up and conversation...no bloodwork or scans" - Me
"We have found that ongoing scans are not helpful for prevention and cause the patients more anxiety. If you have any headaches, bone pain or other symptoms in between appointments you can always call" - Doctor
"I'm fucked" - Me

I didn't actually say that last part but it's definitely what I was thinking. My doctor did offer to at least do a mammogram on my unaffected side and an ultrasound of both breasts and axilla approximately 4 months following the end of radiation. After pushing for bloodwork, they also added it but that's all.

Aside from my concerns over the lack of follow-up, there was no discussion about how, especially with triple negative breast cancer, a low fat diet and regular exercise can lower your risk of recurrence by up to 54%. There was also no mention about how to rebuild my immune system after it has been severely compromised. It makes me so angry to think that after poisoning you with chemo, impacting your physical appearance with surgery and burning you with radiation there seems to be no interest in helping you put yourself back together.

Thankfully this is where my friends, family, social worker and naturopath come in. I have put together my own after care team that can give me the support I desperately need while trying to figure out how to move on from here. So that's what I'll focus on until my next "follow up" appointment in 3 months.

Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)