Breast Cancer: It Is Going To Be A Bumpy Ride


A breast cancer diagnosis is a life altering event, physically, spiritually, and emotionally. Surprisingly, little attention has been devoted to conducting scientific studies that measure anxiety, depression, and PTSD rates in first time breast cancer patients. Even less scientific attention has been paid to these psychological effects in patients who have experienced a recurrence or a metastasis of their cancer. The statistics available are all over the map but it can safely be said that almost all breast cancer patients will suffer from depression and high anxiety levels sometime on their journey from diagnosis to post-treatment.  

These feelings may be short-term for many, disappearing within a few months after treatment ends. A significant percentage of first time breast cancer survivors (US studies say 25% while European and Australian studies say at least 50%) will go on to develop long term post-traumatic stress disorder. There is very little statistical evidence pinpointing the rates of depression and PTSD in women with breast cancer recurrences but an 80% combined severe depression and/or PTSD rate has been cited in some articles. For the stage 4 patient, it is frequently noted that the depression and PTSD rates are “very high,” which really isn’t all that surprising. While the scientific studies are few and far between, it is stated repeatedly in the cancer literature that most of us will have to deal with these negative emotions some time along our journey.

Drs. have long recognized that a cancer diagnosis is a huge emotional blow to their patients. Just the very word “cancer” strikes the fear of disfigurement, a shortened life span, and a slow painful death into the hearts of most of us. Anti-anxiety medications such as Ativan or Xanax are often prescribed to the newly diagnosed and prescriptions are freely refilled during treatment and for a short time thereafter.

The cancer diagnosis may be given in person or over the phone, depending on your doctor.  If it’s over the phone and you have paper and pen ready, you may have some recollection of the finer points of the doctor’s call when you hang up. Or maybe not. My first diagnosis was over the phone and while I wrote notes as a rush of medical jargon came my way, all that was written on my page was “breast cancer” about eleven times, in increasingly larger letters. I didn’t even manage to write down my next appointment and had to call his office back to find out what I was supposed to do next. My mind felt like a sieve in the early days of my first diagnosis as I could not seem to retain anything but the most basic information. At other times, I felt like I was having a weird out of body experience, somehow removed from all that was happening around me.  I guess the shock of having your whole world turned upside down in a moment creates chaos in your brain.

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I strongly recommend taking a tape recorder and/or another person with you to the surgeon’s and oncologist’s office for your visits. The amount of information given is too much to absorb on your own, let alone process and act upon. Some doctors will explain things in plain English while others may use medical terms in a way you don’t understand. Even a diagnosis such as “triple negative breast cancer” will leave you staring blankly if you have never heard the words “triple” and “negative” applied to breast cancer before. It feels as though you have to learn another language just to understand what is going on in your body. The worst part is that before you have even mastered the fundamentals of this new language, doctors are asking you to make many impossible decisions and to make them quickly.

The diagnostic period and the  treatment planning time are among the most confusing and stressful parts of the cancer process. Not only are you reeling from the shock of learning you have cancer, you are given a huge amount of unpleasant choices to make, any of which have the potential to change the whole course of your life.

Do you want a lumpectomy with radiation, a single mastectomy, or a double mastectomy? Chemotherapy before or after surgery or no chemotherapy at all? If you choose chemotherapy, here are the risks and benefits of each type we could offer you. One can cause long term heart problems and the other increases your risk of uterine and bladder cancer. Which would you prefer?  Do you want immediate reconstruction or do you want skip that and use prostheses or would you rather be fabulously flat? If you choose reconstruction, do you want implants or surgery that uses your stomach, back muscles, or buttocks to create a new breast? Is genetic testing necessary?  If you test positive for a genetic cancer,  do you want your ovaries removed now or later?    

All these decisions and more have to be made in a short period of time while you are still reeling from emotional shock, not fully absorbing all the information being thrown your way. It’s a wonder any of us stick around the doctor’s office long enough to make any decision, informed or otherwise!
 

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The initial diagnostic period also involves further scans and tests to determine if you are one of the 10% of first time patients whose cancer has already spread from the breast to another part of the body. The testing portion of this period can bring on intense feelings of fear, worry, and depression as you have no idea whether the cancer has already travelled past the breast and into your bones, lungs, liver, or brain.    

The whole pre-treatment process takes on an air of unreality as only a short time ago you were blissfully unaware that you were even sick.  Is that really you rejoicing over clear scans and hearing yourself agreeing to amputation of part or all of your breast(s) followed by chemotherapy and/or radiation? I swear cancer never felt real to me until the first moment I would wake up in the recovery room after surgery, moaning for a shot of morphine.  With surgical pain, cancer got real very quickly (and yes I felt this way all 4 times).

Each patient has their own way of coping with the physical realities of surgery and other treatment.  Some women move quickly from shock into fighting mode, telling themselves and their loved ones they will beat cancer and kick it’s butt into the ground. Some women place their faith in God to get them through the hard times. Others adopt a strategy of trying to always find the positive or the humorous side of cancer. Others just get plain angry at the Universe, fate, or God.

All these coping strategies can be helpful during treatment as they may provide the motivation to continue with chemo or radiation even when your body is weary and just wants the treatment to be over with NOW.

Some people can stay in one particular emotional mode throughout the treatment process. Most of us flit in and out of various modes, one day feeling like a tough warrior and the next feeling like a fragile bird with a broken wing.

There are those who struggle with debilitating depression and anxiety throughout the treatment process. They may have to force themselves to continue treatment when the going gets rough. They may question if they are putting themselves through the pain of chemotherapy or radiation for a cancer that may recur or metastisize anyway, regardless of what they do.  They may feel overwhelmed, sad, and stressed most of the time.   

If you are feeling severely depressed, it may be that you are lacking a strong support system. If you can reach out to family, friends, a church or a counsellor for help, it may make life easier to deal with. If the depression is persistent and is interfering with your life, please consider psychiatric intervention and possibly a prescription for antidepressants.

The treatment period can heighten feelings of  depression through a combination of physical and emotional factors.  One of the key features of all the treatment methods is that they bring on severe fatigue which can quickly lead to emotional exhaustion. Getting out of bed, showering, and eating breakfast can feel as exhausting as a full day of physical labour. Throw a couple of children and pets into the mix and you are drained of all energy by 9:00 am. 

There are also the emotional stresses of dealing with a radically changed body from surgery and hair loss from chemotherapy. This plays havoc with your self-image and self-esteem as you wonder where the woman you used to look like a few months ago has gone. With your bald head, lack of eyelashes and eyebrows and whatever surgery was done to your body, you may feel she has no hope of ever coming back. The physical changes are difficult at any age but seem to be harder for young single breast cancer patients to handle. The literature notes that the young, the single, and the poor have the highest rates of depression and PTSD following a breast cancer diagnosis.

Depending on where you live, there may be financial pressures if you don’t have adequate health insurance or if you have to quit your job as paid sick leave is not offered.  If you are a single parent with little support, every day can feel like one long endless challenge.

Coping with cancer treatments and chemobrain simultaneously can leave you feeling helpless as your short term memory fades and you find yourself literally at a loss for words as the connection between the thoughts in your head and what comes out of your mouth seems to be irreparably broken. I remember bursting into tears several times trying unsuccessfully to express a simple sentence. At times I thought the cancer had spread to my brain as I was constantly forgetting where I had left my keys, purse, or phone and I often didn’t have the words to express to others what the problem was. Even though my doctors said it was chemo brain that was responsible for my memory and language problems, at times I thought I was losing my mind. Or that at the very least, I had suffered a stroke or was experiencing early onset Alzheimer’s symptoms.

A very vulnerable time for breast cancer survivors is when treatment ends and they stop being patients who see their medical team on a regular basis. Some of the women who spent their time in treatment being fighters or being angry or being positive come crashing down the hardest when treatment ends. I have heard women describing themselves as feeling lost and not knowing what to do next once that last chemotherapy or radiology session they were so looking forward to has come to an end. After all these months of anticipating the end of treatment, the actual ending seems anti-climatic yet frightening at the same time.

For many women, the end of treatment is when depression truly hits them. Their pre-cancer life is gone forever as they have faced their own mortality head on. There is no turning back the clock and regaining the innocence they have lost. At the same time, their identity as a cancer patient has come to an abrupt end and they must face their inner fears of a recurrence or a Stage 4 diagnosis alone, without the support of their medical team.

This transition time is very hard for many women. They reached their goal to finish treatment but they don’t have a new tangible goal to strive towards. Others around them impatiently wonder when they are going to resume their old activities and lifestyle. Their family and friends may begin to withdraw the emotional and physical support they offered during treatment as they expect the woman to bounce back to normal in a week or two, or maybe a month tops. The survivor may feel misunderstood by everyone, including herself. She may wonder how she could stay so positive through treatment and then be hit hard with depression when the treatment ends.

Cancer treatment is a physically and emotionally draining experience and it is unrealistic to think that everything will be back to normal as soon as the last treatment session ends. It takes a long time for your body and mind to recover from the trauma of surgery, radiation, and chemotherapy.  As doctors tell their patients to find their new normal, it may be impossible to return to the days of the old normal. Priorities may have changed significantly in the year or so that has passed since they were first diagnosed with cancer. Returning to the old normal may not be an appealing option anymore.

The emotional trauma experienced after a cancer recurrence or a Stage 4 diagnosis takes even longer to process than a first time diagnosis.  When cancer spreads or comes back, you can no longer tell yourself that if I make it 5 years, I will be cured. It becomes clear that cancer doesn’t play by the rules, at least not for everyone. 

When the 5 year magic cure rule is broken, many illusions that gave hope the first time are shattered forever. You no longer believe that medical science has all the answers, especially if your cancer was caught early and your prognosis was excellent. You become aware that cancer can come back again at any time or can continue to spread throughout your body even when it has been aggressively treated. You will never feel safe that this time it is gone for good, no matter how much you change your diet or make other changes to your lifestyle. You will probably continue to do everything in your power to extend your life span but you will know in the back of your mind that cancer can change the rules of the game at any time. These realizations help explain why so many women in these situations suffer severe anxiety, depression, and PTSD. The universe is not unfolding as it should. It is unfolding in a way that makes little sense to us mere mortals.

This is not to say that all is doom and gloom for any breast cancer patient or survivor. Most patients do recover their emotional equilibrium relatively quickly. Cancer may have made them aware of their own mortality sooner than they expected but there is still plenty of joy to be found in day to day living. There may be a greater appreciation for family and good friends. We may feel more grateful for the little pleasures in life that we once took for granted.  The little things that used to drive us crazy may no longer even make a dent on our emotional radar. They say don’t sweat the small stuff. After cancer, most of our minor annoyances definitely turn out to be small stuff.  
 
Those of us who suffer from PTSD may face a tougher road back to regain our positive psychological health. We may look fine on the outside, return to full- time employment, and make every effort to get on with our lives but the emotional quality of our lives may still be wounded and damaged. Some of the signs that you may be suffering from PTSD are: flashbacks or nightmares about cancer or treatment, blanking out and forgetting important parts of the cancer process, feeling emotionally numb, feeling continually hopeless and helpless, loss of enjoyment in activities that used to bring you pleasure, suicidal thoughts, and being hyper-sensitive to anything that reminds you of your cancer or its treatment. The advice given by the Mayo Clinic is that if these feelings persist and are interfering with your life, you should seek professional help at the earliest opportunity before the symptoms become further entrenched and harder to treat.

To minimize psychological distress no matter where you are in your cancer journey, using self care techniques will make the process easier. Activities that promote relaxation such as meditation, yoga, or massage can help you deal with stress. Having someone to talk to, whether it is a friend, family member, or a professional will help with sorting through the difficult feelings you may be experiencing. Finally, an in person or online support group with other women going through cancer can help you to see you are not alone and that there are others who understand exactly what you are feeling. Sometimes just knowing that your feelings are shared by many other women across the world can help you feel normal in the very unnormal world of cancer.

Sharon Greene  December 16, 2014

Posted from WordPress for Android

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46 thoughts on “Breast Cancer: It Is Going To Be A Bumpy Ride

  1. Hi Sharon,
    It’s my first time on your blog, and I must confess, you have a lovely blog here 🙂 What a wonderful article, so lengthy but I couldn’t resist reading it all.

    Like you said fear makes a persons life span shorter, and I’ve come to agree with all you’ve said, I’ll rather call this article a “detailed guide”. 🙂

    Thanks for sharing, and a Merry Xmas 🙂

    Liked by 1 person

    1. I am so pleased to hear that you enjoyed reading the post and my blog! I guess I should have made this a 2 part post as it is so lengthy. Live and learn, I guess.

      I am wishing you and your loved ones a very Merry Christmas and a Happy New Year! Drop by anytime!

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  2. never crossed my mind about all the anxiety and depression experienced by cancer patients . You gave a Detailed explanation on the cancer diagnosis and activities to help remove the stress, like yoga and having someone you can talk or confide in, most of us are ignorant of this.Thanks for sharing.

    Liked by 2 people

    1. Thank you for your comments! Yes the cancer diagnosis, treatment, and post-treatment stages can be very stressful. Most patients will experience fear, anxiety, and depression sometime along their journey. This is normal. You can support friends or family with cancer by being there for them, listening to them even when they are sad or angry, and helping them with practical tasks like rides, food preparation, and looking after their children to give the patient a break.

      Merry Christmas to you and your loved ones and a happy 2015!

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  3. What an amazing post (and blog for that matter) in giving an understanding of what the cancer prognosis and mental process entails… It seems to be such a part of our lives (for me, friends and father) being diagnosed and the insight here is another step in understanding.
    Take care and wish you a great final week of the year ~ and a strong start to ’15.

    Liked by 1 person

    1. Thank you for your very flattering comments. I am glad you found this post useful as so many of us will get cancer eventually. I think your blog is amazing and have just become a subscriber. You are so talented with both words and pictures!

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      1. Isn’t is something to realize that we all will get cancer at some point… To have a voice that can impact people (with and without) is a gift ~ so thank you yet again for your blog. Wish you and your family a great week and onto an incredible ’15.

        Liked by 1 person

  4. I am awaiting the news of the biopsy results of a dear friend of mind. She potentially has pancreatic cancer. The fact that I haven’t heard leads me to believe the news isn’t good. While you mention the reaction to a diagnosis of breast cancer I can see that your info here will be very valuable for me to understand a little bit of what she is going through. Thank you.

    Liked by 1 person

    1. I really hope the reasons for the delay have to do with understaffed labs being slow during the holiday season so your friend hasn’t gotten her results yet. If the news is cancer, as a friend you can best support her by sticking around, listening to her, and helping her in practical ways like rides to treatment, food she can heat up, or entertaining children to give her a break. I am sure you will be a great friend to her. Merry Christmas to you, your family, and your friend. I hope you come back to let us know how everything turned out.

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  5. Both my mother and my older sister went with radical mastectomies, due to the nature of the cancer Mom in 1969 and Sis in 2009, Mom lived 40 years to raise all her children see all her grandchildren, but died of a totally unrelated pancreatic cancer in 2010. Dad had bladder cancer take him, so my family is sensitive to the subject. Which reminds me I’ve got to get a colonoscopy sometime soon. Not pleasant but necessary! God bless you in your struggles.

    Liked by 1 person

    1. Back in 1969, radical mastectomy was the only surgical operation around and it is remembered as involving extensive removal of not only the breast but the chest muscles as well. Congratulations for her living 40 years cancer free after the mastectomy! She must have been very young at the time of diagnosis. I am sorry to hear your sister had the disease too and that pancreatic cancer eventually took your mother’s life. Don’t put off that colonoscopy! I have had one and they put you under sedation so you are awake but don’t really mind what they are doing. Thanks for checking out my blog and hopefully you will be a regular visitor!

      Liked by 1 person

      1. A 2 year waiting list is way too long! By the time you have your appointment, something minor could turn into something serious. (Hopefully there is nothing there at all). Was your Mom or sister very young when diagnosed with breast cancer? Did they have genetic testing done? A family history and a young age at diagnosis for breast cancer for either of them could qualify your sister for genetic counselling testing. If she tests positive, you would also have a 50% chance of carrying the same gene which can cause male breast cancer, cancer of the pancreas, and sometimes colon cancer depending on which gene is affected. Not that I am wishing anything negative for you, but that would probably bump you up the list in a hurry. I’m not a doctor and this is not medical advice but that much family cancer is concerning. I come from a cancer family and we found it was the hereditary kind. Not trying to scare you – I get concerned as many men don’t connect female relatives getting breast cancer as a risk factor for themselves. Sorry if I have overstepped my bounds. The 2 year wait makes me worry for you.

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  6. Thanks for this–wow. I certainly had some depression after treatment ended, and I wrote about it. It wasn’t that I felt lost without the constants appointments–more like–I finally had a moment for the reality to sink in–that I’d had cancer. Plus, my happiness that I wouldn’t have to constantly go to treatments was dampened by the knowledge that cancer wasn’t really over–I still have to be on the lookout for return, I still see an oncologist. These days, the most irritating aspect is getting too tired too quickly. I hate not being as energetic as I was before. Oh well.

    Liked by 1 person

    1. Yes, during diagnosis, you have no time to think. During treatment, you are too sick to think. When you finally emerge from the fog of chemobrain and the never ending trips to the lab/oncologist/chemo treatment room, you take a look around and say I never imagined my life would be this way. And I hate it. It feels like I will never stop seeing the oncologist. 3 years past the last cancer and chemo, we finally moved our appointments from every 3 months to every 4 months. I guess that is progress.

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  7. Yes I can relate to PTSD.As a stage IV survivor, many aches and pains make me fear that it’s cancer, when in fact, it could be a side effect of treatment or simply old age. It is hard to trust my body again, knowing cancer is living there. Staying in the moment, keeping busy, and focusing on helping others are key for me to staying sane. Also regular exercise and massage helps relieve my stress and makes me trust and love my body again.

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    1. Tami, I have recently been diagnosed with PTSD after being treated with mediocore results for chronic anxiety and depression for several years. I have become a mild hypochondriac as well but I guess that comes with the territory. Its tough sometimes. I like your self care routines and know I need to devote more time to me, not just my kids.

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  8. Thank you for this comprehensive post about some of the baggage that comes with a cancer diagnosis. It’s a bumpy ride and then some. And that whole notion of it all just being over when initial treatment ends, is a myth for most of us. Thanks again.

    Liked by 1 person

    1. Yes its a bumpy ride alright and sometimes you have to hang on for dear life! As much as we look forward to the end of treatment, most of us are in no state to bounce right back to our old lives

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  9. Thank you Sharon 🙂
    It’s really nice to know how you feel in every stage.
    Very important for the family and friends who have no idea how’s to be there and never know the right thing to do or say.
    And congrats on the reblog! 🙂

    Liked by 1 person

  10. Sharon, you nailed it! I suffer terribly from PTSD, and while depressed and anxious during treatment, it was after treatment that I was overwhelmed emotionally and spiritually. This is a wonderfully comprehensive post about what breast cancer patients and survivors go through; I could relate to so much here. I wrote a post on cancer aftermath: http://bethgainer.com/cancer-fallout/. Luckily, I have sought help, so my PTSD is in check.

    Liked by 1 person

    1. After many years of depression and anxiety, I finally asked my new psychiatrist if PTSD was a possible diagnosis. She asked me a series of questions and most definitely concluded I had PTSD. That was 3 weeks ago. She tweaked my meds and I think I’m starting to feel a bit better. But it has taken 15 years of suffering and me asking for an assessment to come up with this diagnosis. I’m glad to hear you are better since treatment. It gives me hope. Thank you for your always thoughtful comments.

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  11. For someone who doesn’t express a great deal of emotion, this post was very helpful because I found myself feeling angry and couldn’t exactly say why. I’m just starting my BRCA2 mutation journey. Thanks, Sharon.

    Liked by 1 person

    1. There is one school of thought that says angry patients live longer than placid passive patients. Its not clear to me how anyone knows this as a fact but if the theory works for you, run with it!

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  12. Another informative and well-written post, Sharon. Do you mind a little feedback? As I was reading, I thought back to your previous posts, and I felt this one was much less personal, more fact-driven. If you’re interested in tying everything together in one unified voice, you might consider adding in a few personal stories to this post. The statistics and descriptions are useful, and some personal stories would be just the touch to make this post unique.

    Keep up the good work!

    Liked by 1 person

    1. Thank you for the constructive feedback. I originally wrote about my new diagnosis of PTSD and then edited it out at the last minute. I got cold feet that I might lose credibility if people knew I was a PTSD sufferer. Particularly as it took me 26 years for anyone to even consider the possibility that 4 breast cancers plus some other pretty significant trauma might warrant investigating me for PTSD. The diagnosis is fresh, I’ve started on a low dose of a new medication and am still uncertain if it is working. I may go back and revise the article to put more of my emotional issues in the post. I have struggled with major depression and intense anxiety for years and I should have included that in the post. This might have made a better 2 part post as there was a lot of material to cram into one post. I’ll either revise the present post or do a follow-up post about my personal experiences with depression, anxiety, and PTSD. Thanks for reaching out to me with your comments.

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      1. I have had the symptoms for years and all that has changed is that the condition has a new label. Since being diagnosed last month, a new medication has been added and I am feeling better. Why am I so afraid of admitting to the new label?

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      2. True. Even though I suspected PTSD for awhile, it is another thing to be officially diagnosed. All I know for sure is the new meds have lightened my mood considerably and I no longer feel like I am carrying a heavy burden on my shoulders. I am very grateful for the reprieve and hope it lasts longer than a month.

        Liked by 1 person

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