On Receiving a Breast Cancer Diagnosis
Since having breast cancer, friends now get in touch with me if someone they love is facing the same devastating news and they ask me what they can say or do to support them.
I am so grateful to be asked. So sorry to hear the news. And so focused on what might be helpful to share at the beginning of the path ahead. To inform and reassure but not overwhelm. This post is an edited version of a reply to a friend who contacted me about her friend. I realized as I was writing my reply that I was really writing to her friend. So, here is my letter to each (friend of a) friend joining the path:
“I'm so sorry to hear your news. This is likely an overwhelming and frightening time for you. I have been there. If we were having a cup of tea (or something stronger) these are some of the thoughts I’d offer and ponder with you. You might like to digest this letter in stages or return to it as you get additional information and options.
Like those of us before you, you have inadvertently become part of a wonderful community of good, generous women. We have felt your shock and faced your path. We will be there for you as we are able. Reach out. You will, most likely, be amazed by how many women come out of the woodwork.
Every breast cancer is different. There are many types of breast cancer. So much so that the term is really just an umbrella term. Invasive ductile carcinoma, lobular breast cancer, ER positive, triple negative etc. Welcome to ‘breast cancer as a second language’!
Most breast cancers are highly treatable although the treatment is no treat.
First Things
You might find my website useful to browse. It includes the letters I wrote to my friends and family during my breast cancer experience and my observations on treatment together with some tips and resources: www.abreastcanceryear.com.
A very helpful site when just diagnosed is www.bethechoice.org. Very, very highly recommended.
And, lots of current medical information including drugs and side-effects along with forums - at www.breastcancer.org
These are some key things that may be helpful to know right now, even in the haze and uncertainty:
You will have lots of normal, good days ahead. The sense of crisis and urgency will pass.
Compassion for self. This is awful news. It's is okay to be fearful, shocked, emotional, worried, unsure, numb. Not things we like to feel. So, sit with it, meditate simply (breath in and out). Walk in nature. One step at a time. Be kind to yourself.
Bring a friend along to take notes to every meeting and test. Like to admit it or not, your cognitive functioning is impaired by stress, unfamiliarity with terminology and process, and whirling thoughts and calculations. The patient misses at least half of what is said to her (and I was the same). Notes are super helpful to review later.
It may take time to get all the medical information about your breast cancer. There will be some information from the preliminary biopsy, but it isn’t settled until after surgery. I've copied a PDF on 'how to read your pathology report' into the resources section of my website. You can read it here: http://www.breastcancer.org/symptoms/diagnosis/path_checklist. Very informative. Different aspects of diagnosis are covered here: http://www.breastcancer.org/symptoms/diagnosis. Very good have an understanding of the report/disagnosis for yourself and when you are talking to doctors (or they are talking to you!)
The critical thing that the next tests will be looking for whether the cancer is anywhere else. The first (and manageable) place it may spread is into the underarm lymph nodes, axilla. This is called local spread. But, if the cancer has spread to distant organs (lungs, liver, kidneys) or bones, then it's really another disease called metastatic breast cancer (MBC) which has a different treatment protocol. And wouldn't be good news. Another 'bad news' cancer is inflammatory breast cancer. So, let's just set those aside for now.
Treatment: Some Basics
There is a menu of treatments, assuming your cancer is indeed one of the more common types. Choices about treatment will be directed by things like size of the lump, grade of the tumour (grade 3 is the most aggressive one; it was the grade I had, so it too is manageable), gene involvement (HER2), estrogen or progesterone positive or negative and involvement or not of the lymph nodes. There are standards of care for each variation. So, do everything your doctor says - but also, don't be shy to seek a second opinion!
Assuming your diagnosis will turn out to be 'good' breast cancer, these are the kinds of treatments that may be offered (and, again there is a lot of excellent info on the 'decision tree' of treatments at www.bethechoice.org):
Surgery. (mastectomy or partial removal called lumpectomy (which has excellent results so don't rush to a full mastectomy just to 'get it out now'). It will include some exploration and tissue extraction in your axilla (armpit) to determine any lymph involvement. Lesser: sentinel node dissection. You will have a dye injection before surgery and likely another mammogram going into the operation. Greater: axillary lymph node dissection which takes more tissue and is only done when lymph involvement is highly likely (a lump) or was found on biopsy. You may want to ask your surgeon about taking an anti-inflammatory drug called ketorolac (or even an NSAID) for a short period around surgery to support your immune system (and better ensure that is not not distracted) during healing from surgery.[1]
Chemotherapy. I had six months of chemotherapy. I was not nauseous once (good drugs) and didn't lose my appetite. I've posted my tips on my website as I searched widely for best practices/ideas). We fear being sick with chemotherapy and some of us still are - but it's not the universal awfulness of past years. Your hair grows again after out and wigs can be fun during.... Chill out on the hair. If the cancer is stage 1 (small tumour NO lymph involvement) then chemotherapy may not be needed. If stage 3 with grade 3 and some lymph involvement, chemotherapy will be required and will likely happen before surgery. Stage 2 somewhere in between. There are lots of different drug combinations. And side effects vary by drugs used. You will likely become obsessed with your white blood count. The count has to be above a certain threshold for you to receive your chemotherapy on schedule or at all. I mobilized beef broth. All that said, and even with being upbeat and proactive, I didn’t get off chemotherapy scot-free – and it’s likely that no-one does. But it's worth it - in my view, without question - with a stage 1, 2 or 3 diagnosis.
Radiation. Will be required after lumpectomy in almost all cases. If there is even a single positive (cancerous) lymph node, radiation will be recommended (and a good idea).
Hormone blocking. Examples are drugs which block hormones are tamoxifen or the Letrozole class. These medications will only be prescribed if your cancer is estrogen positive/fed. You take them for a minimum of 5 years but, increasingly it seems better to take for longer, even 10 years+. The pills have side effects so a mitigation strategy is required for them too if and when the time comes. The oncologist will choose depending on whether you are post-menopause. In fact you'll be asked this a lot. if you are one year past menopause some treatments/drugs will change. So, figure the dates out! I hadn't taken a note of my last period (who does??) so the doctors were a bit cross with me. I assured them that I thought it had been at least a year before, but I didn't actually get confirmation of my sense of it until sifting through drawers much later on.
Recovery from Treatment. This is a whole extra couple of months and hit me after the euphoria of finishing treatment had faded. Fatigue (delayed impact of radiation is a big part of this). A less robust body. Re-engaging the chemo-brain. Allow time for this phase too.
And be reassured: During treatment and after treatment there will be lots of good days.
Working (a tough call but…)
Wait on this decision until your get more information. But here are my thoughts for what they are worth:
If you’re facing the full menu (stage 2 or 3) and if you have good work benefits with sick leave and LTD that is sufficient to keep you afloat financially, and no urgently pressing projects that absolutely need your input - and hardly anything fits that definition – I strongly lean towards a woman taking a full medical leave. Breast cancer is one where the insurers seem to be very good and accept that you have a serious illness affecting your ability to work. It took me a few weeks to get myself organized to begin my leave – a good distraction at the time! Treatment will take longer than expected. I had mine neatly mapped out to be all done in 8 months, and, back to work but it was 16 months before I returned to work and I could have done with a couple of more months. You will be busy with appointments and treatment and recovery. Netflix. Donna Leon novels (she is now up to number 26 so, she's a reliable source of low key reading!). Rest. And, really, work – if it is an organization or institution - doesn’t need you.
If you’re self-employed, of course, this makes it harder as income flow will likely be more tenuous and your business likely does need you. Even so you may be able to create some options around reducing work hours, or workload, or scheduling some off days during hard parts of treatment.
Working might be easier to manage if you are Stage 1 but you’ll still need time off after surgery. Radiation is daily and relatively short; the radiation nurses take very good care of you. But there will be a wall of fatigue and aches afterwards at some point. Keeping the work schedule flexible and light is still a good idea. This is not the time to that on that next big project or opportunity!
Organizing Support
We like to be independent, but this is a good time to let others care for you in different ways. They’ll appreciate being able to do it and you’ll appreciate the help.
I was fairly open about being diagnosed with breast cancer. In general, I favour this approach. This isn’t a secret, sidetrack part of your life – it is likely to be a central preoccupation for a while. In my experience, people will be kind and caring and become a diverse and wonderful resource. It’s okay to be selective. It’s okay to filter out anyone who drains your energy. This really is about you not them!
There are good tools available to define and communicate with your support community if you find technology /online media a natural fit:
www.mylifelife.org or Caring Bridge are very good.
You can set these sites up so that if you need something specific (a ride, a meal, a scrabble partner, a walking buddy etc) you can post and someone can accept the 'job' and show up.
Phone, email, a whiteboard, grocery store calendars, and lists also work!
Other Suggestions
Exercise is very, very important. A daily walk no matter what treatment, series of appointments, or depressing thoughts arrive with a day.
In terms of diet, do as much as reasonably possible to eliminate sugar from your diet (don't go weird or rigid on this or anything else). The no-sugar mantra was recommended by 'holistic' medicine. Clinical research has now shown that - once you have cancer - something called the Warburg effect (initially posited in the 1930s) happens enabling the cancer to feed on sugars in your body. [2]
Eating a nutritious diet is very good for these times Ginger is good. Protein is very good. This is not a good time or any good reason to become a vegetarian. Rebecca Katz is Queen of cancer cuisine. Website click here. Cookbooks. Delicious (mostly easy) recipes!
Navigating Life in the Midst
Be positive and hopeful - remission and survival rates for breast cancer are now very good – well into the 90% range or more for early breast cancer.
Live in the moment (its all you can be sure of) with gratitude for the gift of being alive and loved and warmed by the spring sun.
You are the same person, only the same person with cancer.
You are not fighting or battling breast cancer; rather, you are living with it and making the necessary adjustments it entails. Reflecting on her experience Nina Riggs has explained life with cancer well: “It’s mostly just normal human drama, negotiating life with your kids, your parents, your partner, your friends, your job, your home, your pets, etc. It’s life. I had to embrace the experience of having cancer, because that experience was part and parcel to my experience of my husband, my kids, my dearest friends.”[3]
Medicine doesn’t know what causes breast cancer or what prevents it. Nothing you did caused your cancer. There is a lot you can do to eliminate it from your body. Don’t blame yourself. We might like to be able to pinpoint a cause (and a regret) and to feel in control. But, really, it’s not within our control. Let it go.
And, Finally (for now)
Members of our shared community, together with friends and family will be available for you anytime and as they are able. It is a sacred gift to care for one another. Together, we're on this!
Notes:
[1] If needed, refer your surgeon to (2018) 10:436 Science Translational Medicine (11 Apr 2018): eaan3464
[2] For background on this, see "The Warburg Effect: Can Cancer be Starved of Sugar" (2017) at https://www.cancertherapyadvisor.com/general-oncology/warburg-effect-sugar-intake-cancer-prevention-treatment/article/711447/
[3] See Nina Riggs interview on her Memoir in the Washington Post. Don’t falter if you click read this interview. The book is fabulous. That said, both the interview and the book are probably not for you right now. But tuck it away for later. I'm an academic and thus, I just have to add citations!
