Can't handle the crippling fear every day.

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KNardo88
KNardo88 Member Posts: 54
edited January 2018 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

I was diagnosed at age 27 on 4/25/16 with Stage 1 IDC in my right breast. ER+(20%)/PR-/HER2- Grade 3. Given my age, and despite a lack of any family history of breast or ovarian cancers, I tested positive for a BRCA1 gene mutation.

My first thoughts after the cancer diagnosis were of my imminent death, and about how I'm just not strong enough to get through this. I know that these initial reactions aren't out of the ordinary, but I can't turn it around and gain the positivity and fighter mentality that is so vital.

I had a bilateral mastectomy on 5/20/16 with sentinel lymph node biopsy and tissue expander placement. Anatomical pathology report revealed that the tumor was small-- under 1cm, and none of the lymph nodes were involved. Lymphovascular Invasion absent. All great news, on top of the already-great news that the myriad of scans and tests done on me prior to surgery (blood work, CT, MRI, bone scan) all came back clear and normal.

Despite all of this, I find myself simply unable to let go of the fear that I have cancer running rampant through my body, metastasizing to my bones (back pain, leg pain), invading my lungs, my brain, and everywhere else that I feel even minor discomfort. I know this is not uncommon, but I am spiraling out of control. I have not been able to think about anything else for more than a few minutes before going right back to scouring the Internet for symptoms and signs of metastasis, survival statistics, the many disparities of my particular cancer, the odds against me seeing even the age of 40, and so on...

In fact, my oncologist didn't even bother to order an oncotype score for me, because he knew it would be extremely high. I am meeting with him on Thursday to discuss my treatment plan, and can't handle facing the stats and figures he may present to me, regarding my horrifyingly high chances of recurrences and metastasis.

Meanwhile, fixating on the ever-present pain in my back, when yesterday it was my leg, and the day before that it was my abdomen. Worsening, evolving, and becoming more and more ominous with every Google search result.

If cancer doesn't kill me, my mind certainly will. Why can't this all just be a bad dream

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  • PezGal
    PezGal Member Posts: 99
    edited June 2016

    Hey there - I'm older than you (40) but also got the unwelcome surprise of a BRCA+ status along with diagnosis. My first post on here was a freak out episode. From diagnosis to fist chemo took about 3 months (surgery mixed in there) and I also was a total wreck scouring the internet reading bad thing after bad thing,so very worried. So, what I'm about to tell you is completely cliche but 100% true. 1) Stop googling. Get back to an old hobby, read a book, watch netflix, hang out with family and friends. I know its hard cause you feel like you need to know, need to know, need to know... It is like an addiction and you need to either cut it cold turkey or limit your time. "Hello, my name is Lisa and I am also a Google addict". Your case is individual (no two stories are the same) and statistics are just numbers - so the internet is no help. 2) Once your treatment plan is set and in effect things DO get easier. You start to feel power over this shit of a disease and you make some buddies (either here or in your treatment center) that know EXACTLY what you're going through. Unfortunately your (mine, our) vision of how life was supposed to be has forever changed - but its not over. It's just different. As far as the BRCA thing, it's done its crappy job and its basically out of the picture now. As far as I've read and heard from genetic counselors it does its evil with primary cancers not recurrences or mets. With the mastectomy you've lowered your chances like everyone else. You're on the right path.

    If it makes you feel any better I think your cancer looks pretty good (as far as cancers go). You have a more favorable outlook than me - and I'm kicking this things ass! I'm also watching my hair grow back (yeah!) and continuing to plan my future. Do not let this control you life! Also cliche but true: worrying about tomorrow only robs you of today.

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  • Meadow
    Meadow Member Posts: 2,007
    edited June 2016

    Pez has given you great advice, try not to be your own worst enemy in the fight to recover. Like Pez said, your diagnosis is not bleak, and better than mine too! And I am kicking it too, like she said. So, put aside the fear, and fight. Also, perhaps you might talk to your doctor about a prescription to help with the anxiety. If you are not already taking something, this can help you a great deal while you get on the road to good health. My best to you always.

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  • elise24601
    elise24601 Member Posts: 155
    edited June 2016

    Hey, I can't offer much advice, but want to tell you you aren't alone being so young and so worried - I was just diagnosed last month, at age 31. My cancer is also grade 3. But my tumor is much bigger, and my nodes are "likely" involved. Not sure if I have the BRCAs, my mom tested negative when she had cancer (she was stage 1 like you and is still alive 12 years later). We think we may both carry another gene mutation yet to be discovered.

    I'm been having the exact same psychological reactions - googling, terror, unable to stop thinking about death and metastasis. It's really hard and shocking and I have no idea how I will get through this either. I also wish it wasn't real and I struggle with being a "fighter" or a "warrior" with a positive attitude. I think connecting with other young people is really important.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited June 2016

    KNardo,

    Can you share your fear and worries with a close family member or friend? I bet vocalizing your fears may help you cope with them. Also, there are hundreds of books that deal with just what you are going through, unfortunately I don't have names of some of the best but I bet you can do a search on BCO.org for member recommendations. Lastly, if you are religious and have a center of worship or leader whom you trust, seek them out for a session or two or whatever it takes.

    I am so sorry you are going through this, especially since you are so young. How unfair to rob you of your health and well-being. If I could wrap you in my arms and let you have a good cry, I would.

    Please keep us posted on how you are coping, good or bad after all,are all in this together.

    Amy

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited June 2016

    Knardo, sorry, not fair at your young age to go through the evils of Cancer treatment. Keep telling yourself "it's not in my nodes. Right there, is a positive mantra. Looks like you will have AC. It is an agressive chemo for Breast cancer. I had 4 dose dense infusions of it in 2013. I had a hard time with it, but many ladies report it was easy, doable. I am on Taxotere now, side effects are way more tolerable.

    Fatigue will become an issue with all chemo drugs. Plan on lots of down time, resting, eating as well as possible. Also ask for anti-anxiety meds. Big help. When I was first dx, my legs were wobbly all the time. I was actually nervous to walk. I had played tennis & golf the week before. My brain had taken over with fear & panic. I would wake up in the morning trying to figure out if this is a sick dream or reality. Join the chemo group here for July, or start one. Best thing is to be able to vent with ladies going through the same thing at the same time. They also have threads for younger ladies.

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  • Rufhewn
    Rufhewn Member Posts: 45
    edited June 2016

    So sorry you at dealing with this. I am too in my head way too much, googling and making every symptom I have something scary. Do ask your doctor for a drug like Ativan and take it when you need to. Your body can't maintain this level of anxiety and worry so you will get a break. Not sure what is worse, the cancer in your body or the boogeyman in your mind. Hang it there, it will get easier. Like you, after my initial diagnosis, all my news was positive which is what I should be focused on. I read somewhere that a high percentage of women diagnosed with BC suffer with PTSD from their diagnosis. Unfortunately, I can relate.

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  • LoveLau
    LoveLau Member Posts: 105
    edited January 2018

    I agree with your post. I had sentinal node with 1.8mm and Dr said no chemo only test 17.

    But I feel exactly like you on 150 effexor and ativan at other times.had thryoid bx today. Frightened. Did you get on antidepressants? DID IT HELP?

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  • wallan
    wallan Member Posts: 1,275
    edited January 2018

    You have received wonderful, supportive advice here. It does suck that you are facing this when so young. On the other hand, you have health and youth and energy to help you recover faster.

    I had stage 3a BC 14 years ago and am still here. No recurrance. When I was first diagnosed, I googled and I wept and was paralyzed with fear. Its normal. Its traumatizing to get a cancer diagnosis, especially with all the hyped stuff out there that cancer is a death sentence, one way or the other. Remember: Genetics ( or a bad gene) does not constitute that you will die from this. That too is hype. There are so many variables in genetics and how they work that its impossible right now to say you are doomed. All you can do is follow the clinical advice and let it go. You are following clinical advice it sounds like.

    You will get past this. Your cancer has an excellent prognosis. The odds are in your favor by alot. Trust in that. All diseases have statistics of mortality tied to them. Its just that cancer is so hyped and prevalent on google or in the media or news that we fear it the most. But in reality, I say again, you have an excellent chance of being cancer free and dying old.

    Hugs to you as you navigate this traumatizing stressful time.

    wallan

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