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The Waiting Game

WhoDatGirly's picture
WhoDatGirly
Posts: 1
Joined: Jan 2020

Hi guys. New to the site and first time forum post.

Back on August 31, 2017, I had a lumpectomy to remove a stage 2 IDC from my left breast, and according to my surgeon, my oncologist, my test results, and everything else under the sun, I was cancer free and looked good to go. My oncatype test results showed no need for chemo, and I figured this episode was just some weird anomaly from some outside environmental factor (no history of any cancer in my geneaology on either side of the family). I was told I could do targeted radiation combined with 10 years on Tamoxifen. I'd do annual visits, and 6 month mammograms and that should be enough.

Then at the beginning of the year, I noticed another lump in the same breast. I was concerned, but I had recently made a move out of state to a new area. I had no providers to work with. My health insurance with my new job hadn't become effective, so like a fool, I waited until it was. I waited an additional 2 months from the time I noticed the lump.

I was diagnosed with stage 4 HR+ IDC with bone metastasis on August 19, 2019. I mean, I started the journey of this reoccurence in the last week of April with the doctors, but it wasn't until a massive amount of other scans and tests were performed (mammogram to ultrasound to biopsy to MRI to CT scan to more biopsies to bone scan to yet one more biopsy and THEN Dx). I went in thinking I just had another stage 2 lump that we would remove, and I would be good to go. The surgeon that I got in touch with through Vanderbilt Breast Center thought the same prior to the MRI. Then the bottom fell out. It turned out I actually had 2 tumors in my left breast, a suspicious mass in my right breast, and infiltration in my lymph nodes, hence the additional biopsies and scans.

So I am stage 4. The only place it has moved at this point is into my pelvis. The metastasis in the pelvis is only 2cm. So, instead of surgery, my oncologist (surgeon said good luck and godspeed ages ago at this point) states I will be doing palliative care. I only have to get Leupron injections every 3 months, and I take an aromatase inhibitor daily. I'm lucky in that sense, that my cancer isn't so terrible that drastic measures need to be taken to keep my body going.

But to my point: the WAITING game for me is the WORST. I know right now I'm lucky, but how long before my luck runs out? How long before this treatment no longer works, and I have to go to the more potent treatments that, let's be honest, may or may not work? That is what keeps me paranoid whenever I feel the slightest change in anything in my body. I'm constantly looking for cancer in every spine tingle, every stomach cramp, every twitch of my eye. I'm going to turn into a basket case because of this. 

Friends and relatives are always asking me how I feel. I feel FINE. I always felt FINE. I still feel FINE. Physically. Mentally I think I'm going insane. Cancer is always simmering at the back of my mind. I spend my time wondering things like: do  I have 5 years or 2 years? Do I have 10 years possibly? If I stop moving for one infinitesimal second, I immediately fall back to obsessing over what's going to happen. How bad will it be? How much am I going to hurt? When I get to the painful, awful parts, how long will it last? Will it be forever until I pass, or is there the occasional reprieve? How will I continue to work? What will my family do without me? What will my future self and my future deterioration of my health do to the well-being of my husband, my kids? 

I don't tell my family about these thoughts. We all seem to be pretending that as long as I am feeling healthy, then I don't have this incurable, life-shortening disease. Any time I have tried to talk to someone, my husband, my mother-in-law, my father, you can feel their discomfort. They don't like thinking about it and most certainly don't want to talk about it, and I don't blame them. I don't really want to burden them with it any more than necessary, so my forays into discussions or feelings I'm having have fallen by the wayside. I never speak of it to my kids. They know, but I don't want them to have it always in their face. 

How does a person stand this kind of paranoia, this constant fear, this WAITING for the worst to happen? I try to be positive, and most days for most of the time I manage to succeed just simply by doing other things to occupy my time, but there waiting for me at the end of the night, cancer. Stage 4 cancer. Not just what will happen, but WHEN. I don't feel that IF is even a possibility anymore with my stage of cancer. I'm just waiting for the other shoe to drop, and I can't hardly take it. I am so scared of it all the time. I've had one CT scan since my diagnosis, but it was inconclusive with regard to whether or not my cancer is growing or shrinking. My oncologist says that bone regeneration can look almost identical to bone lesions, so even though it is showing in the scan results that my lesion has grown (!?!) it may be that the bone regeneration is giving that effect to the scan. We are re-scanning next month, and I am so scared that it isn't regeneration, but instead is progression. I've never had good results with 50/50 chances.

Please give me advice on how to make myself calm the heck down. I am crying on the inside and smiling on the outside. I put on that brave face every day so as not to alarm my kids, my husband and others who love me, but I gotta say it's getting harder and harder to do that. I compartmentalize it to the nth degree, but it's no use. It wants to come to the forefront of my mind. It wants to take up all the space in my brain. Does anyone know of something that can be done to stop worrying about my prognosis? 

 

catlady2
Posts: 9
Joined: Dec 2019

I wish I had some words of wisdom for you.  But I don't.   I too struggle with the worrying about the future and sometimes the anxiety is overwhelming. There is a constant feeling of a lack of control over one's own life.

I journal, write 3 gratitudes a day, do yoga, walk and try to keep my mind occupied. I am also working towards making sure I have everything in order for my family-just in case.  In a weird way that is helping me take some control of my life.  Some days are better than others. I can't talk about my cancer without tearing up and an in person group would make me very uncomfortable.  I am so grateful for this online forum.  The best thing I can say to you is not to waste today.  You are here today for a reason.  Please try to find some joy in the NOW.  

Best wishes

bonbondidit's picture
bonbondidit
Posts: 117
Joined: Jul 2014

First and foremost you are completely normal for these feelings as I share the same feelings but am a stage 3a bc diagnosis.  There are specific stage 4 groups that are listed in discussion boards. I just read earlier, also I believe it was in Scalp mets that someone posted links. If I find it I will copy and post them here.  As for the paranoia. That is a real thing and even 5 years out I still get dips of it through my days.  CBD oil works SOOOOOOOOOOO good for me. I can't say enough about it.  Doesnt drug you up because there's no THC in it but CBD is a nerve relaxer. More like a small glass of wine rather then a shot of tequilla.  lololol.  Also my ah ha moment of mind body and soul was when I was going through it all and other family members decided to build me a healing pond. My kids friends helped so much it was a beautiful thing.  A month later, one of those kids was killed in a rollover at age 12.  I paused after my mental breakdown over that news and thought, he didn't even have cancer and he is gone like that.  So I brought his mom to the pond for her to heal. It changed everything for me.  I know that I watched another pass over cancer and they had medicine around the clock and felt nothing in their last days but relaxation. My father in law lived with us and he treated for pancreatic cancer and was home on hospice and transitioned like a sailboat into the sunset.  Just keep your mind as focused as you can and one foot in front of the other. And always go with your gut instincts not with fear forward thoughts. CBD Oil helps with that.  We are never promised tomorrow but while we are here, do things that makes you feel good about yoursef. Helping others builds great indorphins which internally helps heal the soul. 

Update: here are some links for stage 4:

http:www.bcmets.org is the web page

 

 

Another web site that deals with only stage IV is:

 

http://community.breastcancer.org/forum/8

 

 

 

Another is: http://www.inspire.com/groups/advanced-breast-cancer/new/active/

Big sister hugs,

Bonnie

Nedsupport
Posts: 10
Joined: Mar 2020

I don't have any advise. I am new to cancer. i wish you well. I am thinking of you.

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