Having Breast Cancer 4 Times


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Some people skip my posts as they don’t want to know that breast cancer can strike more than once. They believe that my story must be a real downer as who wouldn’t be depressed to have their cancer come back again and again and again? Others look to find differences in their stories from mine to reassure themselves that this will not happen to them. I don’t know how many people have asked me if this whole mess couldn’t have been avoided if I just had a double mastectomy with my first breast cancer at 29? Hindsight is usually 20/20 but even my oncologists aren’t convinced that would have stopped the cancer from coming back. I had new primaries, not recurrences, and it is very possible they still would have grown in my mastectomy scars. I would like to assure you my story is not all doom and gloom and there are many positive conclusions that can be drawn from my story.

I wrote at length as to why I made the treatment decisions I did in my blog post entitled. Why I Chose Not To Have A Double Mastectomy.  Basically, it was a combination of historical reasons (double mastectomies were not offered as an option in 1988 when there was cancer in only one breast), lack of the medical knowledge we have now (there was no disease called triple negative breast cancer then as the third component -herceptin – had yet to be discovered) and genetic testing did not exist until Cancer 3 and the early tests were less comprehensive than they are now. I in fact had BRCA testing in the mid-90s and was told I was negative, a “fact” I believed for the next 16 years, although I later learned I had a major BRCA1 mutation.    
                                                                    The other factor consisted of personal reasons for choosing the options I did. With no internet and no support groups for young women with breast cancer, I did not even know of young women with mastectomies, let alone double mastectomies. I was 29, then 34, and then 36 when my first 3 breast cancers struck. I was single, childless, and reconstruction surgery was not terribly advanced, and I adamantly didn’t want a mastectomy. I got one anyway at 34 when my cancer returned in the form of a new primary in the same breast that had a prior lumpectomy and radiation treatment. Mastectomy was the only option. Reconstruction was very bad and it turned me off from having a second mastectomy when cancer struck in the other breast 3 years later.

In any event, it serves no purpose to speculate if things would have turned out differently had my treatment choices been different all those years ago. I made the best decisions I could at the time in consultation with my doctors based on the state of medical knowledge at the time and my personal preferences for treatment.

To be a 4 time cancer survivor without Mets who has lived almost 27 years since the time of first diagnosis is like being a medical unicorn. There aren’t many like me around. My mother battled 4 different types of cancer in a 12 year period – breast, metastic ovarian, and 2 different types of colon cancer, the second one metastic. Other than that, I don’t know anyone else with a cancer history similar to my own. It can be a lonely feeling at times, not having any real life examples of others who have walked a similar journey. What happens next? Do I live to a ripe old age, dying for reasons unrelated to cancer? Is there going to be breast cancer 5 and if so, will this be the one that metastisizes?  Will the earlier cancers metastasize and put me into Stage 4 cancer territory? The doctors have no answers for me. So a big part of having had 4 different breast cancers is the uncertainty on the part of myself and my doctors as to what happens next.

Having cancer multiple times, plays havoc on your mind and emotions. Just when you think you are “cured” and cancer is a thing of the past, it rears its ugly head again, announcing, “I’m back…”  Having one bout of cancer is incredibly stressful to your body, mind, and spirit. Having it 4 times is downright demoralizing, with the initial thought each time that I can’t go through this yet again. But really what choice do you have? If you want a shot at living, you”ll have the surgery and take the chemo and/or radiation recommended. Having watched an aunt die from completely untreated cancer, that is not a path I’m willing to take. Unfortunately for me, experiencing the trauma of cancer over and over again, led to depression, panic attacks, and ultimately PTSD. I am finally getting the professional help I need to tackle these issues. In a culture that says breast cancer patients have to be brimming with positivity all the time, this fake front I believe contributed to my PTSD condition. Never being able to acknowledge how you really feel about going through treatment one more time, can lead to a crazy-making life.

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Another thing that I have had to grapple with is survivor’s guilt. Why have I been able to stay Mets-free and survive 4 different aggressive triple negative breast cancers with a highly defective BRCA1 gene? Why do others get breast cancer once, have it metastasize, and die from the disease while mine functions more like a chronic disease that flares up every now and then? I have no answers to this question. No answers at all.

The flip side of survivor’s guilt is that hopefully it takes away people’s fears, at least a little bit, when the newly diagnosed hear my story. So many women come into the online Facebook groups that deal with triple negative breast cancer, already convinced they have been handed a death sentence. Others worry that they have been diagnosed with a BRCA gene and that combined with triple negative breast cancer, dooms them to a short life and an early death. I try to point out that I have had high grade triple negative cancer 4 times and have a major BRCA1 mutation and am still alive and kicking almost 27 years later. I have not been a model cancer patient by any means but I am still alive. Neither triple negative cancer nor a BRCA mutation or both necessarily mean an immediate death sentence.  I hope my story helps to reinforce this message and allows the patient reading it hope for a long future. The 4 bouts of cancer are a very rare occurrence and it is my wish that people stop fixating on the 4 times and focus on the 27 years of extended life.

Sharon Greene  January 23, 2015

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78 thoughts on “Having Breast Cancer 4 Times

  1. You certainly have been through a gruesome ordeal, but you have survived. I admire your resilience. God must have a special plan for you, to pull you through this so many times. May He bless you, and continue to allow healing to come into your life.

    Liked by 1 person

    1. I have been extremely fortunate that all my cancers have remained localized to the breast and haven’t spread elsewhere. I guess I haven’t fulfilled my purpose in this life yet, whatever that may be. Thank you for your good wishes on my health and for commenting on my post!

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  2. You are an inspiration!! My mom had triple negative breast cancer three times, the first she was 29. The third time it metastasized and was in her ribs, liver and sternum. Eventually it went to her brain and she passed at 47.

    I tested positive for BRCA at 25, had a bilateral mastectomy after my second cancer scare at the age of 27.

    I am so glad I found your blog. Thank you for being so open and honest.

    Liked by 1 person

      1. Very true. I’ve lost my great grandma, grandma, aunt, and mom. It’s a relentless disease. But I have an aunt who is a 2 time cancer survivor too. And we will continue to fights this battle together!

        Liked by 1 person

  3. Sharon, thank you for your article. I am also a 4 time survivor diagnosed for the first time at 28. Mine is a triple negative breast cancer but the difference is I have been diagnosed with mets. All 4 times have been the same triple negative breast cancer: left breast twice and lung mets twice. Amazingly I am currently without evidence of disease, but like you said, I feel cancer will come back when I least expect it. It is not fun living with that fear, but also, I have to live a normal life the best I can. I think I do s pretty good job at that. Also have been married,divorced, have two amazing kids 23 and 8. I work full time, travel and I’m currently dating. It has been 12 years since my first diagnosis, so I feel good to know its been 27 for you. Congratulations. Thanks again for all the hope that you give, the energy and the positive thinking you provide to so many women. You are a true inspiration.

    Liked by 1 person

    1. Our stories are very similar. As one of my readers put it, we are members of “the refuse to die club” who keep getting cancer but somehow staying alive. I’m sorry you are dealing with lung mets. On the other hand, I am pleased to hear you are continuing to live a very full life. I hope you keep coming around this blog and updating me on your progress. I’m very pleased that you read this post and took the time to comment and share your story!

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  4. Pretty great post. I simply stumbled upon your blog and wished to say that I have really loved
    surfing around your blog posts. After all I will
    be subscribing on your rss feed and I am hoping you write again very
    soon!

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  5. Wow again Sharon!!
    I understand (and don’t understand) people not wanting to know. Some think that being in denial mode makes the problem disappear (I wish some times that were true!).
    About the guilt, I’m sorry you feel it sometimes (so not fair after all you’ve been through!).
    Lots of hugs and love.
    Admiring you even more,
    Paola 🙂

    Liked by 1 person

    1. I hope it can at least reassure some people that not all recurrences are an automatic death sentence. There are still many in the breast cancer world who still believe that. Unfortunately, they are the ones least likely to read the post as they don’t want to believe their cancer can come back. It has been a rough ride for me at times but I have managed to adopt 2 children, now 13 and 15, have a career, get married and divorced – in other words, have a life, even with all the cancers. That is the message I am trying to set out. Thanks for reading and commenting!

      Liked by 1 person

  6. 4 times seens uncredible…

    My mother had it twice, both breasts taken off by two operations, many years apart…

    These days she is suffering from pain caused by secondary cancer, which cannot be operated…

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  7. Kay my wife did tamoxophen and worked thru it all as a vp of business and her brain is great now too and now back to being a professor of economics . Cancer seems to be over 400 disease times each individual imo. Sharon your lengthy survival is impressive imo. Surrender to the process was not easy for me re my cancer treatment , hogkins stage 4b. But my passion for life and my faith and my friends were vital imo. Read on a 5 cancer survivor whom has a website on line , that was impressive also . To all cancer warriors , i salute us !

    Liked by 1 person

  8. Thanks for that post and I will share with someone who was recently diagnosed with triple negative and is doing chemo now. Naturally, no one wants to be in your shoes or, if they’ve been through it once (as I have), go through it again. But, the reality is it can come back. When people take the prophylactic route and have double mastectomies when there is no evidence of cancer, they think they’ve found the “solution.” From what I’ve read, tumors can still form on the chest wall. Anyway, thanks again…basically, you’re keeping it real. I particularly liked how you explained the positives..and I am very happy you’ve never had mets.

    Liked by 1 person

    1. Let your friend also know there are some good Facebook support groups for triple negative patients and survivors including Triple Negative Breast Cancer Survivors, Triple Negative Breast Cancer Sisters, and for general breast cancer Beyond the Pink Moon.

      Unfortunately mastectomy, either for cancer or as a precaution, doesn’t guarantee safety. Nothing does that I am aware of. If cancer is determined to get you, it will find you. But I hope my message is loud and clear. Not every recurrence or new primary is a death sentence. Sometimes it just means more treatment but still being alive to watch your children grow up. Thanks for reading and commenting. All the best to you and your criend.

      Liked by 1 person

  9. I’m glad the PTSD treatment is helpful. I know your story is a gift to others on their journey, but I look forward to reading to the day I’ll be reading your new blog entitled “57 years surviving and celebrating many more to come.” 🙂

    Liked by 1 person

  10. Hi Sharon, Your story is remarkable. I felt like I was reading my story. I am also a four time survivor of breast cancer, brca 1 positive with no metastatic disease going on 30 years now. I know how rare our situation is. I also have suffered panic attacks, anxiety, and feeling like my life has been so affective by never knowing when the other shoe was going to drop. It has not been easy, but therapy has helped me deal. Unfortunately, I also have developed ovarian cancer which I have not been so lucky with. I have been on constant treatment for almost 5 years now and even though I feel very well with little disease, it is still a scary place to be. I believe that my brca status has helped me as chemo works well but not well enough.

    I wish you many years of continued health

    Liked by 1 person

    1. Another medical unicorn! I am so sorry to hear that you now have ovarian cancer which has resulted in lifelong treatment. You have described my inner feelings as well -never knowing when the other shoe is going to drop. I suppose that’s why I called my blog 4 Times and Counting instead of 27 year survivor. Deep down, I don’t really think cancer is done with me yet….whether it is breast mets or some other type of cancer, always when I’m least expecting it. Thank you so much for sharing your story here. I’d be honoured if you would drop in here and comment on how you are doing.

      Sharon

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  11. Well, my hat’s off to you. I always read your posts with interest, but hesitate to reply because I haven’t gone through nearly what you have. I don’t want to, and I suspect you wouldn’t wish it on me either. But I deal with PTSD and panic attacks, just as you do–not all of them to do with BRCA and the aftermath, though.
    And off I go to have three new little lumps looked at and “documented” next week. They’ll likely be nothing but fat necrosis. We live in hope, anyway. Because unlike you, I’ve got no drive to do everything suggested to keep me alive. Did the bilateral mastectomies right out of the box. Figured that would take care of it. Refused the tamoxifen because I can’t tolerate any more holes in my brain and still be able to work. Gotta work because I’m the breadwinner. And holes in the brain or more menopause than I’ve got already ain’t conducive to that.
    So thanks for the chance to vent. Figured if you could, I would, too.

    Best,

    Kay

    Liked by 1 person

    1. You give me too much credit for being an ideal cancer patient. I haven’t overhauled my whole lifestyle or followed every fad of the day supposedly designed to make me beat cancer or live longer in permanent bliss. I’m a bit of a fatalist – when its your time to go, you go, and you can’t extend your time or shorten it because of your attitude or the fad diet of the day. If tamoxifen isn’t right for you, I support your right to say no. I hope your 3 bumps turn out to be fat necrosis or something equally benign. Vent away here! This is a safe space. Thanks for reading and commenting!

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  12. A friend of mine who’s only 26 has just been diagnosed with an aggressive type of cancer. I felt so bad and sad that I just didn’t know how to face her and what to tell her. She doesn’t want to go through chemo etc procedures…but I guess it might be because she’s still in shock. I might have to get her to read this post of yours. Again your strength, your willingness to help others is worthy of admiration. Hugs and love to you.

    Liked by 1 person

    1. I’m sorry this happened to your friend at the age of 26. Let her know you are there for her and that you are hurting on her behalf. Please feel free to share this post with her if you think it might help her. Also let her know there are many good support groups for breast cancer patients/survivors on Facebook, including some aimed at younger women and others aimed at a particular type of breast cancer she may have been diagnosed with. Thanks for reading and commenting.

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  13. Sharon, great post and so true. I have not had to go through anything near what you have but I have little tolerance for people who think they have a right to tell you how you should feel or react to a situation or how you should grieve, heal, or think about your personal condition.
    I remember thinking, My God, I am blamed for my own abuse, blamed for staying too long, blamed by the ex, and now I am being told I am not even grieving right. It keeps a person down, I believe in positive thinking to a degree but I do not believe a person can cure themselves with positive thinking. Anyone who believes they have cured their cancer that way just got lucky. I believe that a person has to try to see the positive things in life and not dwell in negativity for the simple fact that it ruins the days you are alive.
    Twenty Seven years! that is something to smile about and be thankful for. There are some things that defy explanation. My ex husband had a horrific motorcycle accident when our son was 5 weeks old. They never gave him more than 3 hours to live for 2 and 1/2 months. They took him off life support because there was nothing more they could do for him and he was out of ICU 2 days later; his body had rallied on its own.
    The head surgeon took me aside and told me there was no medical reason for him to be alive.
    I had a step brother who’s whole family, his mother and all his brothers died of Kidney failure, he lived his life in fear of dying the same way. he died in a plane crash with perfectly healthy kidneys.
    Not to minimize what you have been through because I think you are awesome and so strong with a great attitude.
    But I believe that sometimes things don’t make sense, there are no guarantees and nothing is for sure and when God decides it’s your time, it is your time and not a moment sooner.
    Big hugs

    Liked by 1 person

    1. Carrie, you took the words right out of my mouth! There is a lot of victim blaming both around the subject of abuse and repeat cancer or terminal cancer. There is a lot of finger pointing about what she did wrong. There are also the less than empathetic who look for ways to distinguish their story from yours to “prove” to themselves that what happened to you could never happen to them. I don’t believe positivity or lets call it other true feelings extends or shortens your life one iota. When its your time to go, you go, and not a moment longer or shorter. We do not have as much control over our bodies or our life circumstances as we think we do. Being positive (if genuine) makes your life better or more
      meaningful. It doesn’t keep you safe from the ravages of disease or becoming the prey of a narcissist. Thanks for reading and commenting. I love your wise words and commentary!

      Like

  14. Hi Sharon,
    I imagine there are some people who do skip your posts for the reasons you mentioned. I know there are people who skip mine, too, for various reasons. You can’t ‘please’ everyone even in the breast cancer blogosphere. You can only share your truths and hope you reach, and hopefully help, a few others in the process and it looks like you are! I’m totally with you on being genuine regarding your feelings. Doing anything else is way too exhausting and potentially unhealthy as well. Thanks for sharing your story with us.

    Liked by 1 person

    1. I hope that if nothing else, my story reaches a few women who are under the assumption that a recurrence equals mets which then equals death. I wanted the focus of this post to be on the 27 years, not the 4 times. So many people have very black and white thinking. Either you are cured after 5 years, never to see it again or else, it comes back and you die. I don’t fit into any neat catrgories but if I with my messed up genes, aggressive cancers, and minimal radical lifestyle changes can muddle through 27 extra years of life, there should be hope for others that they can make it through a non-Stage 4 recurrence/new primary too. Thanks for being in that part of the breast cancer blogosphere that continues to read and comment on my posts!

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  15. i think you’re an inspiration. It is scary! I’m almost 1 year from my lumpectomy and I have days where I’m afraid beyond belief that I have a Gremlin living inside me hiding and will rear its ugly self when I least suspect. So I’m always on edge, have my guard up. I’m fighting a private mental battle. I don’t tell my family, I put on a great front, sometimes I’m exposed. I to have faith and put it all in God’s hands or else I’ll let this gremlin control me. I read your blogs and they give me hope! I look at the 27 years not the 4 times! I’m a fighter! I plan on being here for awhile I have a lot more to do! God Bless You! Keep going and writing girl it certainly givese the HOPE I need to survive!

    Liked by 1 person

    1. The gremlins live in all of us who have had a major disease. Its like if my body betrayed me once, it could do it again. I am glad you are focusing on the 27 years and not the 4 times. That is the main message of the article. I pray you make peace with your gremlin. Turn the gremlin over to God. Thanks for your comments. Keep fighting to survive!

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  16. Sharon – as always, thank you, thank you, thank you – you really are one of my heroes. It has felt difficult this past couple of weeks – I just need to reread your posts!!!!!! It really doesn’t make any sense at all – then again as I mentioned before- about as much sense as an accident. It is incredible that so much has been learned in such a short time. Like I said to my oncologist – we’ll make sure I am alive for another two years and the next newly discovered treatment. I love being alive.

    Liked by 1 person

    1. Yes cancer is a lot like an accident. You don’t see it coming, it alters your life forever, and new damage keeps being revealed as the years go by. I hope my message got through that aggressive cancer, messed up genetics, and a less than positive attitude doesn’t automatically mean a death sentence, even with a cancer recurrence.

      Thanks for continuing to read my blog and to provide such positive comments!

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  17. “In a culture that says breast cancer patients have to be brimming with positivity all the time, this fake front I believe contributed to my PTSD condition. Never being able to acknowledge how you really feel about going through treatment one more time, can lead to a crazy-making life.” YES! Not a belief for me–I know this to be true. Not saying actual cancer & treatment was a picnic, but the surrounding BS was what really upset me, ultimately. Still does, sometimes.

    Liked by 1 person

    1. There are so many expectations about how we should act with cancer so we will be “cured” including relentless positivity, the food trend of the year (only organic, try to make your body alkaline, no water bottles), and the vitamin trend of the day (megadoses of vitamin D). When you don’t achieve the 5 year cure and stay cured, there is a lot of finger pointing about what you did wrong to bring this on yourself again. I wasn’t happy happy happy with having cancer and I didn’t consider it some great gift that I received. Yet I kept pretending everything was fine and tried pretending to be positive. There was a total disconnect from what I was truly feeling and how I was portraying myself to the world. If positivity was the answer, my mother, the eternal optimist, would still be alive today. I’m now starting to look after my emotional needs and trying to say how I really feel even if it is not the popular slogans of the day.

      Thanks for your insightful comments.

      Liked by 1 person

      1. Ooooo, you open a can of worms there: the issue of the positive person who should still be alive vs. those of us less that positive, still here. I’ve said that on my blog a few times in the past and said it again in a Facebook conversation which hopefully will result in another post. It is possible to curmudgeon one’s way through treatment to a NED status–I’ve done it and so far so good (fingers crossed).

        Liked by 1 person

      2. When I had my first 2 cancers, Bernie Siegal’s visualization exercises were all the rage. Hospitals here didn’t have breast cancer support groups but did have guided visualization sessions where you imagined your chemo or radiation destroying your cancer cells. Great emphasis was put on positivity and how you can control the outcome of your cancer by what you think. Which is a lot of pressure to put on a cancer patient. I ended up being a visualization group drop out as the imagery was following me into my nightmares. My mother kept at it for years, battling cancer after cancer until she died. She was naturally a positive person but she died after 4 primary cancers in 12 years. I am way more introverted and less optimistic than her yet she died and I lived. I no longer believe we control our cancers through our minds as I should have been dead by cancer 2. Positive thinking, if it is genuine, probably leads to a happier life but not a longer one. Fake positive thinking and repressing negative emotions leads to PTSD. I really don’t think there is a right way or a wrong way to think that will affect your cancer’s course one iota.

        Liked by 1 person

      1. oh yes, you are a surviver! no one can feel like you do, but i’m grateful for your “invitation” to take part in your world, to learn and to share that in my small world. i’m asking myself, how did your children cope with that all. it was/is certainly not easy to find an emotional balance, when you hear, one of the most important persons in your life has/had cancer.
        i wish you a beautiful sunny day full of energy.

        Liked by 1 person

      2. My children cried at first but then showed their distress in other ways. My son fixated on my appearance and wanted me in a wig and full make-up 24/7. He would be particularly unhappy when I left the house wearing a cap or hat as he felt I looked like a cancer patient. He was 11. Now at 15, he can say he was terrified of losing me. My then 9 year old daughter would experience vague physical symptoms on my chemo days or oncologist appointments and due to her young age, I’d have to take her with me. She now says at 13 that she was scared if I went into a hospital alone, I would not come back. Coming with me gave her some weird kind of control of the situation.

        Liked by 1 person

  18. I have had cancer twice – two completely unrelated, different body part cancers. The first time was emotionally awful, I was only 19 and it was in 1981. The second time, I made a point of being more proactive so that I could take better care of the emotional me with support groups and a therapist. Now the emotional me gets just as much care as the physical me.

    We can’t undo the less advanced medical care we received because it just didn’t exist. Nor can we undo our treatment decisions. We need to accept the past and just move on. Hugs to you.

    Liked by 1 person

    1. Thank you Caroline. In the hours since I have published this, 3 women have noted that they have had 1 or 2 recurrences after a double mastectomy. So maybe my present oncologists are right (and not just trying to make me feel better about my treatment decisions) when they tell me I still could have had all these breast cancers even with a double mastectomy. I’m learning to look after the emotional part of me but its taken time to get to that place. Thanks for your supportive comments Caroline!

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  19. Sharon, a powerful post. I can’t imagine having breast cancer (or any cancer) four times. I can’t imagine the unadulterated hell this experience is.

    That being said, you made the best treatment decisions you could. Each time. That’s all any of us can do is weigh the options and make the best decisions we can. You made the choices you did in order to save your life.

    I think we all hope to have a guarantee we won’t get cancer again. I guess I should speak for myself. I want a guarantee.

    Wonderful post.

    Liked by 1 person

    1. I can’t second guess myself anymore. Maybe different treatment choices would have resulted in different outcomes and maybe they wouldn’t. One Facebook reader wrote that she has had breast cancer 3 times and that was with a double mastectomy.

      There don’t seem to be any guarantees with breast cancer. You take a spin on the giant Wheel of Fortune every time. So far I’ve had lucky spins – no mets and unlike my mother, no new primaries in other parts of my body, just my breasts. While I can consider myself “lucky” in this regard, all those cancers and treatments scarred my mind, spirit, and body. I am finally getting the right psychiatric help now to deal with the emotional debris left over from the physical treatment of my various cancers. So while I consider myself lucky to be alive 27 years later with no mets, the psychological price I paid was very high.

      Thank you once again Beth for your kind and very supportive comments!

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  20. Sharon..my dear friend…I do not skip your post.. I love your posts…I have a great respect for you and about everything you write about the cancer..you are a brave woman…by the way..did you read my short story ” Marathon: the day that the cancer lost the race” if not…I invite to read it…receive my love in God. Thank you for sharing your wonderful posts.

    Liked by 2 people

  21. Sharon, you shared this post with all honesty. I can’t imagine how demoralizing for you it must have been each time, and having to face all the treatments again.
    Twenty seven years is such a huge part of your life, yet even as I read this, I know your story is giving strength and hope to many who may be recently diagnosed.
    ~Carl~

    Liked by 1 person

    1. I hope so Carl. I wanted to leave a positive message that being diagnosed with an aggressive cancer or having a faulty gene or both doesn’t necessarily equal death. I’ve had both 4 times and will be 27 years in February. Having it 4 times was demoralizing and messed with my head as all sense of safety in my own body was gone. But after trying to ignore my depression and anxiety for years, I am at last getting treatment for PTSD and am feeling better every day.

      Liked by 1 person

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