Updated: Jan 3, 2021
If you've had breast cancer its likely that down the road, someone facing the diagnosis will ask you for advice. Its only kind to share your experience. However you don't want to set wrong expectations, add confusion, or share fear instead of hope. There's a right way to share and a wrong way to share. Here are some points to keep in mind when sharing your story.
1) Your journey is exactly that- it "your" journey
Each breast cancer is different and treatments depend on not only on the type and stage of the cancer but the individual patients health and symptoms. Your staring point may be quite different from hers. Your treatment plans may be very different, for very good reasons. Don't compare treatments and outcomes.
Wrong: "How come your doctor didn't advise you chemotherapy? All women I've met have got chemo for breast cancer"
Right: "My oncologist says, cancers are of different types. My treatment plan included chemotherapy, so your experience may be very different from mine.
2) Keep it real: but don't forget to share the positives
Memories are often flawed, we sometimes remember the negatives more easily. You are more likely to remember painful IVs or infections than a scan report that was better than expected, or a kind nurse who made your day.
Wrong: "First it was the surgery, then chemo then radiation, its never-ending...and even after all that there's no guarantees"
Right: "The hospital stay for breast surgery was 2 days. Although chemo was outpatient, taking 8 cycles took longer than I expected. Radiation took only 5-10 minutes every day, but the routine of going to the radiation centre for 6 weeks was a bit tiring. My oncologist says each of these treatments will reduce the chances of the tumour coming back, but the risk is never "zero". So making sure you keep regular follow-up is important
3) Don't be tempted to give treatment related advice.
Its never ok for an unqualified person to give treatment related advice to a cancer patients, It doesn't matter how convinced you are that it works, or how trivial it seems in the grand scheme of things.
Wrong: "I'll give you these supplements I took for immunity, it works wonders"
Right: "My doctor advised me to take protein supplements around surgery, but stopped my vitamins during radiation. If there's any supplements you take, make sure you discuss it with your oncologist"
4) Respect her privacy and don't influence her decisions
Be there to listen, but don't ask questions you can avoid. She may ask you for advice, but may need to make her own decisions.
Wrong: "I hope you decided to do a mastectomy"
Right: " I hope you and your surgeon, have come to decision you are comfortable with"
Don't probe into her choices and certainly don't judge her.
5) Her strengths and coping abilities may be different
Its likely that your whole experience was shaped by your family support, finances and the your own personality when it comes to coping ability. It's good to share what works for you , but encourage her to find what works for her.
Wrong "Its best not to tell anyone about your diagnosis, so you don't have to answer their questions" "My doctor suggested a support group, but they don't help"
Right "I only shared my diagnosis with close friends who could understand and help. A friend of mine shares her journey on Facebook. She finds it helpful to keep everyone involved in her journey"
These may be helpful points that may guide your conversations
1) Find an oncology team that you would be happy to follow up with life-long.
2) Trust your oncologists for advice and don't waste time on unreliable social media posts or text messages
3) Prioritise your health and don't let work or family commitments hinder appropriate treatments
4) Don't shy from asking for for help -whether you're feeling depressed or simply want company for your appointments.
4) There will be good days and there will be tough days.