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PerAngusta
PerAngusta Member Posts: 112
edited December 2015 in High Risk of Recurrence or Second Breast Cancer

I think there is something terribly wrong with my mind. I was diagnosed with bc at 48....still wearing a bikini, still having regular periods, 130 pounds, 5'9", 36 - "C" Cup, natural, perfect (flash forward - albeit, diseased!!!) looking breasts and body. No cancer in my family. Long, straight, sandy brown hair...just above my waist. Early retired after 25 years of Federal Public Service. Home educator of three (3) amazing children. Long time, happily married woman of 23 years. Then cancer came. Today, I am 155 pounds, have had a bilateral mastectomy, had chemo (donated my hair to wigs for children with cancer), radiation and currently still receiving Herceptin infusions. I haven't had a period since chemo. I take Tamoxifen each day and supposed to continue taking it for 5 years, at least. I suffer from lymphadema - both arms/hands due to 24 lymph nodes removed AND radiation. I am told that I am a HIGH RISK for bc recurrence. Herein lies the heart of my true pain and suffering. RECCURENCE. Awake or asleep - I am afraid. And every time that I look in the mirror....I am reminded!!! I see this new person, whose hair is now growing back curly and totally gray. It is very upsetting. I threw out the bikinis/lacy bras and I'm learning to live with a flat chest - I have no interest in running back for some more surgery to put implants in place. Not today!! Perhaps not ever....and that is okay. I am ready to accept a new version of myself in the mirror. I am a busy, bright, logical woman. I am also, agnostic. I have my beautiful family, but I have lost many of my abilities....I am limited. It's nearly impossible for me to block out the sound of my oncologist telling me "all things considered, you are a HIGH RISK of cancer recurrence and if it does come back?.....Well, there is not much that we can do for you if it does. Your best approach is to try to conquer it now, hit it hardest now, during this first occurrence and hope it never returns." EEEEEK! I have young children. Santa, the Easter Bunny, Buddha and Gazoo are not going to be able to get me through this. I am not pacified by prayer or imagination. I wish that I was though!!!! Positive attitude? How do I get one of those? Honestly, I can PRETEND that it doesn't all scare the crappola out of me - but it's exhausting!!! I don't think that will take this anxiety away either. I live in a constant state of terror and I don't know how everyone else manages? I feel like I am completely ALONE in this...nothing in common with cancer folks and nothing in common with those lucky b-tards who take their perfect health for granted!!! Sigh. Anyone taking some sort of "happy, delusional pill"??? I'll try it!! I have changed my diet (no sugar, white flour, largely paleo-type) and I exercise everyday (been 3 months). I drink 64 oz of water each day. I don't drink. I don't smoke. I can't sleep. Somedays are worse than others!! Anyone else out there need to feel connected to something other than, fear of recurrence? My "happy" day will come when I have been cancer free for a certain number of years....and in the interim? HEEEEEELP!!!

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited October 2015

    I'm not sure if anything I post will be helpful, but I can tell you some of what I do. I'm not at high risk of recurrence so I can't completely relate to that. However, the process is the same regardless of the cause of the worry. You say you are logical, which is one of the main reasons I think this may be helpful. First of all, how high is your actual risk? You don't have your diagnosis in your signature so I couldn't investigate for you, but if you put your stats in the Cancer Math calculator ( http://www.lifemath.net/cancer/ ), it will show you your odds of being alive in 15 years. That in itself can be very reassuring. (In my case, only 8% will have died from BC in 15 years. The vast majority will still be alive.) Another thing that helps me (and has for many other issues in my life) is to realize, fully and completely, that worry and anxiety are absolutely without-a-doubt USELESS. If I find myself starting to stress over something I "catch it" in my mind and think to myself, "What use is this to me right now? Is there a reason to be thinking this way? Is there something I can do to change/fix/help the situation I'm concerned about right now, right this minute?" If there isn't, I know it is just my mind fixating on the issue because it gives my mind something to do. I direct my focus to something else, to clearing my mind of the worry. Sometimes it helps to focus on just breathing in and out, feeling the air going in and out of my lungs until I feel calm. If the thoughts creep back in I refocus again. This takes practice, so don't get discouraged if it doesn't work right away! I also consciously focus on positive things at least a few times every day. Studies have shown that people who do this are happier and less stressed. Regardless of the common advice to "get it out" when you're feeling negative about something, studies show that this does NOT help people become happier. It is also not logical to believe that focusing on the negatives in our lives will help us in any way to become more positive. I hope this helps a bit.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2015

    There is potentially a better tool for those of us who are Her2+, as cancermath does not factor in targeted therapy for Her2+ patients, so the result it produces may not be as accurate. This is a site form the UK and so remember to put your tumor size in with mm, not cm - just multiply your cm by 10 to get the correct number. Here is the link:

    http://predict.nhs.uk/predict.html

    I have found that much as summerangel suggests above, worrying about the future is unproductive and a waste of time.  I have also found that while I understand that intellectually, sometimes managing that is easier said than done.  I have found that mindfullness based stress reduction and meditation is helpful - focusing on the present moment, not worrying about the past or the future, but fully experiencing what you are doing now.  It helps declutter the mind, and can ease some anxiety when you release your worry about tomorrow and concentrate on today.  Here is some info on this type of program, I participated in a study (also linked below) with the School of Nursing and Moffitt Cancer Center using this info:

    http://www.umassmed.edu/cfm/About-Us/people/2-Meet-Our-Faculty/Kabat-Zinn-Profile/

    http://www.mindfullivingprograms.com/whatMBSR.php

    https://clinicaltrials.gov/ct2/show/NCT01177124


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  • beth1965
    beth1965 Member Posts: 455
    edited October 2015

    I felt quite like you in the beginning I was told same thing by cancer doctors I am extremely high risk of reoccurrence they said. And I also started out quite normal healthy with no family cancer history. I started with a whole wack of cancer from the beginning they must have done a good job treating me cause its been four years now almost since diagnosis. They still say they are uncomfortable saying that my cancer is not there whatever that is supposed to mean. I too do not recognize the woman in mirror anymore and its been along time I have gained a lot of weight and just look tired everyday I suppose I do see a bit more of me over time just wish I could see the woman that used to be me in the mirror. I recently turned 50 I was DX at 46 they said cancer was there since my 30's and did not show up even though I had mammos and US every year. I kept feeling a pain they kept checking nothing showed. Until it grew quick and was popping out top of breast.

    I still have a great fear of all this especially because I was not found even with tests for many many years. But I do not feel the fear all the time now it really does get better over time its true. But I still get worried when something occurs like pain or sickness really worried. but overall I would say most days I don't think about it much its just in the back of my mind lingering and pops out when something related to it. I have found thinking about it as a mom is very disturbing to me I cannot think about it long as I still get upset worrying but being a mom has also kept me busy living life and helped time pass with other things to think about. Keeping yourself busy mainly your mind helps take up new hobbies learn new things that will make you have to think. These things helped me. I found doing my daily life before left me way too much thinking time. If you ever need to talk message me- hugs to you- Beth

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  • MissBee123
    MissBee123 Member Posts: 186
    edited October 2015

    SpecialK, THANK YOU for posting a more accurate HER2 calculator. I put my information into the first one and became slightly hysterical reading a 57% mortality rate! All things considered, however, I don't think I'll visit one of those sites again!

    PerAngusta, you might want to consider therapy? I say this as someone who has had weekly appointments with a specialist since diagnosis. I had never visited a therapist before, but this is, as many of us know, a deeply traumatic event. It can help greatly to talk to someone who will help you work through your fears and find a new normal. There is absolutely nothing wrong with being afraid. It is normal, but I think it's hard when it is affecting your daily functioning. And the opposite of afraid isn't "happy" so don't feel like all you can be is one or the other. If it helps, the company I use, Cancer Care, offers free therapy sessions for cancer patients. If you don't live near one of their brick and mortar offices, they also do therapy sessions over the phone. If it's something you might find helpful, I would highly recommend reaching out: http://www.cancercare.org/

    Best of luck. None of us deserve this.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2015

    missbee - I used your sig line info, and your age (I am sorry you are dealing with this at such a young age - you could be my daughter), guessed that you were symptomatic because it seems unlikely you were being routinely screened due to age - you should look - the news is much better on PREDICT. For 5 and 10 year survival read the bottom line as it includes targeted therapy and adjuvant hormonal therapy, but keep in mind this figure does not include Perjeta because it is too new, so that will be a bonus!

    Edited to add - it is important to focus on the number of those who survive and have benefitted from their treatment choices when looking at these sites.  It helps remind you that what you have endured was for a good reason.

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  • PerAngusta
    PerAngusta Member Posts: 112
    edited October 2015

    MissBee....I am with you. All things considered, I don't think that it is a good idea for me to visit any of those sites either. My anxiety levels are admittedly, through the roof already!!! Thank you for your suggestion to try therapy....probably the most reasonable approach. I will talk it over with my oncologist on my next appointment. For now, I am completely and utterly....broken up with fear and sadness. Sometimes, I describe it as "claustrophia" outside of a closed in space - as in, claustrophic EVERYWHERE!!! Like Eeyore??? The sky is falling and I am forever....ducking!!!! I'm afraid all of the time (awake or asleep)....and I am even more afraid for my young family. I just don't want to live like this anymore. It's like torture - compared to my previous life. I think I will try therapy. I'm going to have to try something because I am crushing my loved ones and these discussion boards don't help either - except to make me feel even more foolish and alone.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2015

    I was in terror for months post dx. Anti-anxiety meds do help. An anti depressant is a good idea too. They help w hot flashes from HT anyway. Many refer to those early days, esp when active treatment ends as if it is a time when BC radio is blaring 24/7. That is all you hear. It does eventually get tuned out by life, but it takes time. You might also consider getting an Immerman Angel. An Immerman Angel is another woman who is about your age with a dx to similar to you but is farther out in the recovery process. Each Immerman Angel has signed up to be a one on one mentor with someone who needs a listening ear. No cost and no obligation. Sometimes you just need another soul to walk alongside you. I felt like I was alone on a flimsy raft in the middle of the ocean - it was so terrifying. I was able to meet w a volunteer counselor once a week. That was the only time I wasn't shaking. I promise you are not always going to feel this way. Just try to figure a few coping mechanisms to get you through today, or the next hour - that is all you can do. Forward is your only choice. One step at a time. I'm sorry you are facing this. Sending you a gentle cyber hug. PM me anytime.

    PS Your onc needs to work on his bedside manner. Honestly who says that.
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  • labelle
    labelle Member Posts: 721
    edited October 2015

    I'm not sure some of our anxieties are related to any real risk of recurrence or that knowing our risk, even if it is low, is enough to keep some of us from obsessing about a recurrence.

    I can totally relate to the "fixating" PerAngusta describes, but I don't know how to stop it and get on with my life either. I was diagnosed about 1 year ago and completed all the treatment I'm having in Feb of this year. One year out, I don't obsess and worry every minute of every day, not like I did in the beginning, more like 10 minutes of every hour! LOL. I truly think only time will allow some of us to trust our bodies and move on with our lives.

    A woman I worked with when I was diagnosed told me she'd had BC eight years earlier and never thought about it anymore at all (I think she was being honest) but that she used to worry about every ache and pain being the sign of a recurrence. Time, I hope that is the key and what will bring relief-along with the emergency stash of Xanax I keep on hand. I too am thinking about therapy and wondering if these sites are really helping me or keeping me from moving on. Wish I had a better answer than "time" but that's the best I can do and hope for, even if it sounds trite.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2015

    Also ladies - be on the lookout for PTSD or PTSD like symptoms. Many times there were traumas in our past that exacerbate the BC diagnosis. There was a study published a couple years ago that noted around 25% of us exhibit PTSD like symptoms. The good news is that a few months out folks start to feel better. Sometimes we've just been strong for too long. Give yourselves a break. You don't have to be or feel any certain way. Just feel whatever you feel.
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  • Brutersmom
    Brutersmom Member Posts: 563
    edited October 2015

    PerAngusta, Your fear is real. It sounds like there might be some PTSD going on. Have you considered speaking with anyone. The last 18 months have been a challenge. In the spring of 2014 I had a detached retina. It detached 4 times in 9 months. I had some great Dr's who saved about 90% of my vision in my right eye. Every little thing with my vision panics me. When I found out I had cancer I went in to a panic not only about cancer but about my eye. My eye Dr. has reassured me that it will not affect anything but I am still nervous. The eye incident was followed by a hail storm with the hail balls the size of tennis balls that destroyed my car and severely damaged one of our apartment buildings. I have never felt so helpless as I did that day watching my car and the cars of my co workers break and dent. I still freak out when I see an sky turn unusual colors preceding a storm. I don't know if I can ever look at a thunder storm the same way.

    In April of this year I decided to take charge of my life. I started exercising more, eating better, lost 25 lbs. just by changing my diet and then this summer came the cancer diagnosis. I initially panicked. I am 62. I always believed like many of my family members that I would live into my 90's active and healthy. Part of me says that is what I am going to do and then I look in the mirror and the reminder is there of the cancer. I am a logical thinker as well. I believe that God has a purpose and I sure as heck don't know what it is. But I believe that he does and it will be revealed. I am not ready to give up but I am ready to make decisions that will make everyday count. I have just finished radiation and I am tire. I chose not to do chemo because the benefit was small percentage wise.

    At different stages of my life I have lost friends and co-workers to car accidents. to cancer, Alzheimer's and heart disease. We get through each challenge in our lives some are harder than others. Cancer is not easy. The treatments are not easy. I know in time that I will stress less about the crisis of the past to years. I also know that I need to keep moving forward. My life is not over I have to much to give and the busier I am giving and encouraging others the better I feel. It keeps me from dwelling on me to much.

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  • PerAngusta
    PerAngusta Member Posts: 112
    edited October 2015

    Immerman Angel? I'm going to look this up!! Just checked in to see if anyone had posted their thoughts/suggestions/tips and THANK YOU, each one of you, so much for doing exactly that!!! Great ideas, all of them. Of course, time does seem to be the one, true healer/answer....so for now, I suppose I am going to have to try to find something to help me put in some time. And at the risk of sounding like I am psychoanalyzing myself (lol - which, I absolutely AM DOING) I must admit that I didn't have ANY of these fears or issues until they launched me into MENOPAUSE OVER NIGHT!! This gives me more avenues to look into! I wasn't in menopause until chemotherapy and tamoxifen. Prior to cancer, I suffered from PMS on a bi-monthly basis...every other month, I was greatly affected by hormonal mood swings/hormonal ups and downs. Perhaps I am underestimating the physiological changes that have occurred due to menopause? Another "something" to consider and to discuss with my doctors. My goal is to overcome all of this....so keep brainstorming with me....it is ALL helping and I do appreciate it. And somewhere in all of this....perhaps something will serve as a tip for one of you? I feel better knowing that I can contribute something back as well....even if it is only through my own ranting. ): My kids always remind me that some of the sweetest/healthiest things grow out of poop!!! hehehehehehe If that is true....I am destined to be a very LARGE vegetable with bright colors someday!!! hehehehehe It will be better than the flat chested, pubic-looking haired, grumpy woman who is afraid of her own shadow!! I'm soooooo tired of her!!! Please keep writing ladies!!! You are very comforting....and I thank you!!!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2015

    My kids always remind me that some of the sweetest/healthiest things grow out of poop!!!

    I love this! I'm gonna have to steal it.

    Ah menopause - I had an ooph in April and figured at 55 I wouldn't feel any effects from it. Wrong! That has been tougher that I would have imagined. For better or worse it does seem we are controlled by those dang hormones. Oh to be a man. Or not. Somehow I thing the bright colors on our vegetables are a more brilliant hue than theirs.

    Oh and have you seen The Martian? Talk about growing things out of poop!

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  • PerAngusta
    PerAngusta Member Posts: 112
    edited October 2015

    hehehehehe....yes, go ahead and use it....poop is a grower of all things good!!! Just funny that sh*t doesn't feel as fun and healthy when you are sitting directly on top of a mountain of it!!!! hehehehehe

    It just stinks - until it doesn't, I suppose!!

    I'm off for a grocery shopping date with my two (2) youngest kids. We live in Niagara Canada...it's fall here...leaves are SPECTACULAR! I'm on a strict no this or that diet....basically, close to paleo-type...if a caveman could put it on my table using only his club, sort of thing....what could we eat? I've imposed this upon myself to try to tackle the weight issue - been on this diet for 3 months and lost a whopping.....5 pounds. Whatever - I'm trying!!! Anyway, I've been having a blast cooking super healthy meals under super healthy restrictions and the challenge is to make it yummy enough that "normal" people like it too!!! Lucky for me....I'm creative and I do like my own cooking AND best of all...I don't actually know anyone "normal" so every food review to date, has been excellent!! :) I submitted an application to Imerman Angels....someone will get back to me....I am super hopeful that this will open up my resources and help me to.....mend. My thanks to all of you....again. You have honestly lifted my spirits today - you and the sunshine and the pretty autumn weather!! I'm putting my shoes on and getting out there!!!!! Have a great day!!

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  • LM070917
    LM070917 Member Posts: 323
    edited December 2015

    I also have that fear, i was diagnosed a little more than 3 months ago with stage 3, grade 3 BC at 34 years old. Obviously its a worry for everyone with BC, but i also think you never know how life is going to go anyway.

    So on my down days, i try to pick myself up, stay strong and immense myself in the things that make me the happiest- family, friends, my dog :) I used to look at stats and all of that, but really it just messes with your mind, esp if they are unfavourable. I find it best to avoid things like that, esp mortality rate cals etc.. who needs it. One of the most undermined risks of BC i believe is stress and dealing with that. You simply dont need to think about such things, it wont do you body or mind any good and positively is so important right now in getting through this :)

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