Medical oncologists have finally turned their attention to the hundreds of thousands of women who survived their breast cancer.

The American Cancer Society and the American Society of Clinical Oncologists released new guidelines to help primary care doctors and oncologists monitor and treat their patients properly after breast cancer treatment ends. At last there is a comprehensive document that provides detailed diagnosis and treatment information for the myriad of side effects breast cancer treatment leaves in its wake.

I encourage every breast cancer patient to sit down with these guidelines and a big cup of coffee (you’ll need it – they are a dense read) and a highlighter.  Then take a copy in with you to your next appointment with your primary care doc or oncologist and ask questions.  And if you have a friend struggling with any post-treatment side effects, sending them this document could be invaluable to help them identify and get care they need.

When my active breast cancer treatment ended in fall 2012, I transitioned from over 100 medical appointments in a year to being released on my own recognizance with a brand new, completely alien and malfunctioning body.

During treatment and for the next two years, side effects from surgery, chemotherapy and radiation kept popping up like the moles that tear up your newly planted lawn. Identifying what was “normal”, what was treatable, and what might be a serious – or even a deadly indication of the cancer returning – was a mystery. I Googled symptoms. I trolled online blogs for information. I called my oncology nurses with questions. I spent many hours and a lot of money seeking relief, seeking out physical therapists, massage therapists, acupuncturists and anyone else who might be able to get my post-treatment alien-inhabited body back to something remotely active, pain-free and normal.

Many breast cancer patients – particularly those whose treatment included chemotherapy – find life during and after treatment a frustrating game of side-effect whack-a-mole. One symptom pops up only to be replaced by another that is completely different. Some side effects – such as other cancers or heart damage – are life threatening. Others such as lymphedema, neuropathy, depression and sexual side effects impact quality of life. Some will gradually diminish and go away. And others terrify patients when they are confused with signs that cancer has returned or spread.

Eventually many breast cancer survivors refine our whack-a-mole assault on side effects and symptoms to an art-form … and our lives crawl back to something we can manage. For many, “normal” is never the same after cancer.

Some doctors will treat these symptoms knowledgeably. Some dismiss them. Some are unfamiliar with the link between breast cancer treatment and the mysterious aches and symptoms survivors present in their check-ups. These much needed guidelines hope to change that.

Three years ago, these comprehensive guidelines would have made a real difference in my life. I would have found them on internet searches, and known I wasn’t crazy. Known that my symptoms were valid. I would have known what questions to ask and where to go for help instead of spending three years flailing around in cancer survivor purgatory on a trial and error exploration of treatment side-effect management.

These guidelines will help other survivors advocate for their own care. They will improve the quality of life for many women after breast cancer for those savvy enough to take on their own health advocacy, or fortunate enough to have a primary care doctor well-versed in identifying and managing treatment side effects.

Now that 90% of women diagnosed with breast cancer are living at least 5 years, more of us must learn to live with aftermath of the brutal Cut-Poison-Burn (surgery, chemo, radiation) treatment used to cure our early stage breast cancer (Stages 1 and 2). Many women struggle with the hormonal therapies like Tamoxifen or Aromatase inhibitors that greatly improve survival for many women, but come with their own side effects that can be so severe many women quit taking the drugs that can save their life. These guidelines are a big step forward for the medical system to catch up with the reality of hundreds of thousands of breast cancer survivors.

Rather than having the burden fall on patients to find these guidelines and manage their own post-cancer care and symptoms, let’s hope there will be a push to get these guidelines to all primary care doctors and oncologists so they can better provide the follow-up care patients need.

Better, let’s emphasize post-treatment care by encouraging comprehensive cancer survivorship care so cancer patients and their families can access knowledgeable, consistent care after treatment from trained cancer specialists.

Now that breast cancer patients are living longer, we must accept that breast cancer treatment doesn’t stop after the active treatment phase.

Post-cancer care IS cancer care. It’s a critical part of making life for survivors livable, recognizing signs of recurrence early, treating life altering side effects and ultimately, for saving more lives.

This Fred Hutch Cancer Research Center News Service Article has more information, and quotes me … as a patient advocate.