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“The Good Kind” (of Cancer) – A #MetsMonday Featured Post by Mary S. Foti

I’m pleased to share the next #MetsMonday featured post by Mary S. Foti. This one covers a lot of ground. Mary shares about being a caregiver for her mother, being diagnosed with breast cancer herself, discovering she is BRCA2+, loss, survivor guilt, her advocacy work regarding EOL choices and yes, being told she had the “good kind” of breast cancer. Thank you for sharing, Mary. Be sure to leave a comment and/or ask Mary a question in the comments. 

“The Good Kind” 

by 

Mary S. Foti

 

The Good Kind - A #MetsMonday Featured Post by Mary S. Foti
Marilyn Stranahan Burtner, left, and Mary Stranahan Foti – August 1991.

 

When diagnosed with breast cancer almost eight years ago, I was not only overwhelmed by the diagnosis itself, but also suddenly found myself immersed in a crash course in oncology, pharmacology, surgery, reconstruction and genetics. There was so much to learn, too much to process, too many decisions to make, and little time to do any of it.

My mother had gone through breast cancer twice herself, so at the time of my diagnosis, I wasn’t really surprised when it happened to me at age 41. To be honest, I expected (and dreaded) it for years because of my family history.

What I quickly learned is some types of breast cancer are considered “worse” than others, at least from a prognostic standpoint. My surgeon seemed happy to tell me the pathology report indicated I had what was typically considered the “good kind” of breast cancer: early stage (1), lymph node negative, and estrogen-positive (meaning estrogen was what made it grow).

This combination was supposedly easier to treat and had an excellent long-term prognosis. 

After a biopsy, I had two unsuccessful lumpectomies (cancer still remained in the margins) followed by a single mastectomy, expander reconstruction, swap surgery (to take the expander out and put a silicone implant in its place), and several minor reconstruction procedures.

I had decided not to proceed with genetic testing until after my surgeries were behind me, and when I finally got tested in spring 2011, I found out I was carrying a BRCA2 mutation.

Everyone has BRCA genes, which act as tumor suppressors when functioning normally. But if a mutation is present in the BRCA1 or BRCA2 genes, the risk of breast, ovarian and other cancers rises drastically. My mother was retested for the same BRCA mutation and, not surprisingly, came back positive.

Having a BRCA2 mutation meant I was not only high risk for developing breast cancer in the first place, but I was also at high risk for developing another cancer in the other breast, as well as ovarian, fallopian and/or other cancers, such as melanoma and pancreatic.

To reduce my future risk as much as possible, I had the other (healthy) breast removed, as well my ovaries, fallopian tubes, uterus and cervix. Not everyone chooses to go this route, but having witnessed my mom deal with two breast cancers and my aunt dying of ovarian cancer years earlier, I wasn’t taking any chances.

It all had to go.  

Having shared the same disease, my mother was invaluable to me. She listened, commiserated, and loved me more than I ever thought possible. We were even able to joke about the unsolicited (and unsubstantiated) advice friends would give us – Have you tried eating lemon peels? Drinking baking soda water? Eliminating sugar? Eating organic foods? Juicing? Becoming a vegan? How about the keto diet?

The devastating losses my family endured (including my father to brain cancer), however, were anything but funny. We were already too familiar with the reality that bad things happen to good people. We also knew our numerous relatives who died of cancer over the years had positive attitudes and led healthy lifestyles, but their “good behavior” did not spare them.

Things would be different now, I thought.

We were both survivors. We were strong, the mother-daughter team that had done everything “right”. We got our screenings, went to our doctor appointments, followed all the doctors’ recommendations for surgery, genetic testing, treatment and follow-up care. And we were alive and well, stronger through adversity, shining examples of the Early Detection Saves Lives! mantra.  

I began volunteering for the Susan G. Komen Foundation. I walked in a “Race for the Cure” event in 2011, proudly holding a “Survivor” sign. (I haven’t been to one since.) I even spoke at a local Komen event about the importance of mammograms and early detection. I loathed the pink ribbon messaging, but I truly believed in – and embraced – the positive, brave, warrior mentality.

And then, in 2012, that all changed.

Around Valentine’s Day, Mom called to tell me the routine blood work ordered by her oncologist showed her liver enzymes were “off”. Further testing revealed her second breast cancer – the one that supposedly had such a “great prognosis” when she was diagnosed four years earlier – had metastasized to her liver and bones. She was now stage 4.

Although her cancer was not curable, she told me it was treatable, and if it responded to chemotherapy, she could have “some time”. She never told me what her prognosis was, and I was afraid to ask. I was heartbroken, skeptical and disillusioned. Was I going to lose her? How did this happen? What went wrong?

When I first found out about my cancer, I prayed my mother would not survive me, because I did not think my mother could bear to lose a child. But now, not quite a year and a half from my diagnosis, I suddenly felt an overwhelming sense of guilt.

Was God answering my prayer now by having my mother die? Why was I still fine, and my mother so gravely ill? If she died, did that mean I was going to die too?

Survivor guilt is very real with cancer. You feel so grateful to be alive, but you’re always conscious of the fact so many others aren’t.

I was blindsided by my mother’s metastatic diagnosis, but I also began to worry more about myself, and then I felt guilty about that too. If my mother’s “good kind” of cancer was suddenly no longer “good”, then would mine come back as well?

Early detection saves lives my ass, I thought.

How could my mother have done anything else?

She had been through lumpectomies, mastectomies, chemotherapy, radiation and countless medications. None of it worked. I had also done everything medically possible to reduce my risks. Would it do any good?

That was, perhaps, the hardest lesson for me to learn about cancer: no matter how many treatments, medications or surgeries you endure, how “good” the initial prognosis might seem, how many vegetables you eat or how positive your outlook is, sometimes cancer kills you anyway.

It’s a reality not many oncologists will discuss. It’s nobody’s fault, and often there’s just no easy explanation for it. That is why it is such a complex disease; cancer will behave differently in every single person. Statistics are just averages, and now they were meaningless to me.

My mother died September 9, 2012 at age 73. Ultimately, she developed over 20 tumors in her liver, which grew to the point where it could no longer function. Her death was a horrible experience, and scared me beyond anything I can describe. I sought counseling to deal with my grief and accept that what happened to her wouldn’t necessarily happen to me.

I still have occasional nightmares about it. In one recurring dream, Mom is being wheeled around the hospital corridor on a stretcher. She is going too fast, always just ahead of me, and I can’t keep up as she disappears around corner after corner. When I finally catch up to her, she has already died; I am too late. I reach for her, but she dissolves into sand, blowing away while I scream, my fingers still trying to hold on to her.

As the years have passed, my emotional pain from losing both parents to cancer has subsided, but it’s never gone.

I have managed to find peace by connecting with and helping others in similar situations. I volunteer as a Peer Navigator for FORCE (Facing Our Risk of Cancer Empowered), a nonprofit serving people with BRCA and other hereditary mutations associated with higher risks of breast, ovarian, prostate and/or other cancers.

As I mentioned, my mother’s death experience was far from ideal, so I also support Death with Dignity, Compassion and Choices, and do advocacy work for Ohio End of Life Options. I discussed my experiences in a previous Death with Dignity article that can be viewed here.

I no longer have a constant, paralyzing fear my cancer will return, but it is still in the back of my mind every day. Thankfully, my checkups continue to be good, there is no evidence my cancer has come back, and there is every reason to hope I will have a long (or at least normal) lifespan.

The ever-praised five-year mark, which for years stood as the milestone when one would be able to state with confidence that he or she had been “cured” – is a myth.

Yes, the likelihood of recurrence goes down after five years, but there is never a guarantee that you are cured. Slowly but surely, I have learned to live with this uncertainty by compartmentalizing it, putting it in a mental filing cabinet of sorts where I keep all the other unpleasant and unthinkable possibilities I can’t control – dying in a plane crash, car accident, natural disaster, etc.

Like most people, I don’t take care of myself as perfectly as I should, but I am sure of one thing: nobody, no matter what their behaviors, habits or attitudes might be, deserves to be blamed for getting or dying of cancer.

My mother lived her entire life – even during the last six months – with grace, dignity, humor, and deep appreciation for the gifts she had been given. Like me, she hated the battle/warrior mentality. She specifically told me not to say she “lost her courageous battle with breast cancer” in her obituary. My mother did not consider herself a warrior or a loser when her cancer returned. Cancer didn’t win when she died, and it didn’t matter if she was courageous or not.

People don’t go through all these treatments because they’re courageous; they just want to live.

And sometimes, even with the “good kind” of cancer, they don’t.

Mary’s Bio:  Mary Stranahan Foti is the Grants Coordinator for Lawrence School. She is also a freelance writer and community volunteer who lives in Chagrin Falls, Ohio with her husband, two teenage sons and a very old rescue doggie.

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Do you have a question or comment for Mary?

Has anyone ever said to you, at least you have the “good kind” of cancer?

Have you been a caregiver to someone with cancer or another serious illness?

 

"The Good Kind" (of Cancer)
Mary and her husband Anthony

14 thoughts to ““The Good Kind” (of Cancer) – A #MetsMonday Featured Post by Mary S. Foti”

  1. My surgeon told me I had bad luck cancer, as I did not have BRCA, did not smoke or drink, nursed my babies, no history in the family. I still do not understand this. Her 2 positive is what they said. This August I go for checkup to see if I am clear. I hope so because the med I am on is hurting my bones and joints all the time. It will be two years since I completed chemo and radiation in August. I hate the medicine I am on.

  2. Dear Maureen,

    I’m sorry to hear what you’re going through. My surgeon once told me that breast cancer is a combination of bad genetics, bad environment and bad luck. Sometimes it’s hereditary, as in my case, and sometimes it happens for no apparent reason at all. That is a very harsh reality to accept, and I fully appreciate how difficult it is to understand. I hope your checkups go well. Waiting for those appointments is so hard!

  3. Great writing. I was told I had ‘ugly’ cancer (Stage 3). I am now 4 years after treatment and I will be taking AI for a full ten. When I was diagnosed I asked about BRCA testing and was told that I was not a candidate – that insurance would not pay for it – because I am the lucky first one of my family – ever – to get breast cancer. As time passed I thought “well, I’ve already had breast cancer. Why should I get that test?” Now I’m wondering if I should do one of the BRCA tests that are out there. What are your thoughts?

    1. Linda, thanks for your comment and questions. I would ask your oncologist for a referral to see a genetic counselor. It has been almost 8 years since my own diagnosis, and a lot has changed since, but it is my understanding (although I could be wrong) that genetic testing is part of the standard of care for newly diagnosed breast and ovarian cancer patients. (But patients always have the right to refuse to be tested, and some do.) I have a friend who was the first in her family (that she knows of) to get breast cancer, and her test came back that she was BRCA2+, and her insurance covered everything. (Every situation is different, so what happened to her does not mean that will happen to you!) The majority of breast cancers, however, are NOT related to BRCA mutations. A lot has changed since your diagnosis, and it is entirely possible that your policy now covers genetic testing and counseling. I am very sorry for what you have been through and I hope you stay in touch and let us know whatever you decide to do.

  4. Mary,

    This is a beautifully written, poignant post. I’m so sorry about your mom. People with metastatic disease want to live as badly — and do fight as hard — as those without metastatic cancer.

    Your line about people not being courageous but wanting to live is so true. That’s why I endured the hellish treatments — not because I was courageous, but because I wanted to live.

    Thank you for this excellent post.

  5. Hi Mary,
    I relate so much to your story. I have the BRCA I gene. My mother, grandmother, daughter and myself all have had breast cancer. I was recently diagnosed with Stage 4 metastatic cancer in my bones. I am not sick right now but I am realistic. I have also said that I do not want my obit to read “after a courageous battle with cancer”. We don’t have a choice. We all have to deal with the cancer and that doesn’t make us courageous necessarily – just doing what we have to do.” Good luck to you.

    1. Dear Lynn,

      Thank you for sharing what you’ve been through. I am so sorry to hear about your bone mets and that so many others in your family have also dealt with breast cancer. Interestingly, I didn’t discuss this in my article, but there are two different mutations in my family – my mom and her siblings were BRCA2+ (as am I) but my mother’s first cousin and her cousin’s siblings have a BRCA1 mutation. My mom’s father and her cousin’s father were brothers. My genetic counselor was really interested in my family!

      I hope your treatments go well and the side effects are tolerable. Thank you again for your comment and for taking the time to read the article.

  6. “Good cancer,” I’m laughing, I thought I had the “good cancer: Her2positive”. Truth is now breast cancer is a chronic disease. I looked at the hashtag #PowerPort on instagram and found many images of women with PowerPorts (port-cath, central line). They had them for gastroparesis, lupus, chronic immune dysfunctions, etc. It gave me another perspective of people suffering with other chronic diseases that could also take their lives. What really makes me sad and feel unable to help are the many young women undergoing breast cancer treatment, reconstruction and trying to resume their lives, some with stage !V disease. I feel like I am living a bit it an alternate world and it helps that there are others here to talk to and you don’t think I am overreacting. Thanks.

    1. Dear Tisa,

      I completely agree with you – I often feel like I am living in an “alternate universe” as well. Even years later, I still cringe at things some people say to me and feel like I want to slap them! “Did you give up sugar after your diagnosis?” someone asked me not too long ago. “No, actually I eat more of it than ever!” I joked. (And it’s true!)

      You also make a good point – there are so many people dealing with equally horrible diagnoses that somehow manage to go on living as normally as possible, despite having to deal with long-term illnesses that can drastically affect their quality of life.

      I wish you well and thank you for reading the article and for your thoughtful comment.

      Anyway, as you know cancer is certainly not a joke,

      1. Not sure why that last sentence appeared in my comment! I must have accidentally cut and pasted something from somewhere else!

  7. “……how many vegetables you eat or how positive your outlook is, sometimes cancer kills you anyway.”

    Yes! Very important point. People always wanted to know how I caused my cancer. They pointed out very specific areas in which they were “healthier” than I was. (for example, I didn’t juice) They were confident, because of their perceived superiority, that they were safe from cancer.

    Also….I firmly believe it’s perfectly fine to not always have a positive outlook. After all, if you can’t be a little angry about getting cancer, when can you be angry? It’s proven to be a great stress reducer for me, knowing I don’t always have to put on a smile and pretend everything is ok.

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