In denial, having anxiety and how do I tell people?

Dr Google is NOT your friend. Only go to reputable sites.

Some here have used Caring Bridge and found it useful. I didn’t, so really can’t say.

Stay as busy as you can. When you get a treatment plan in place, life does get easier.

Forget about the “shoulds”. Take care of you, let the rest fall where it will.

Basil:

First off, sorry you've had to join our little club. But so glad you reached out and found us. I could not have made it through the past year without the great people here!!!

Also, everything you are feeling is so normal. The angst when you're first diagnosed is horrible. I remember that well and can PROMISE that it gets better with a treatment plan in place and more information under your belt.

Research: My mom went through this 10 years before me and did not do the research that I felt I had to do. And she's fine 10 years later. If you have a great medical team in place, then perhaps you will not feel you have to know everything. If it helps you cope. (And agree -- stay away from blind Google searches.) Just get a solid team (and seek 2nd opinions if you're not sure). I did and it was easy to secure them.

Re: telling people. I'm not on FB and I suppose am fairly private (although I spill everything here!) and I didn't want to tell everyone. So I didn't. Now it's gotten easier. But my neighbors still don't know. I guess I'm saying: do what presents the LEAST stress at this moment. If it's easier, I've heard of some people designating a person as their communications lead. They let everyone else know what is happening. How about that? Or wait until after surgery, unless you have to, then let people know. Just do what you need for you right now. Everyone else must slip to second place for a while. BTW, I didn't tell my 10-year-old son until a couple of months ago what the real deal was. At first, we just went with it's surgery and not a lot more detail. I found that easier for me. Idk why exactly. I just did.

About waiting for results. Well, I came here and did just what you're doing. Asked for advice and just read other's stories to calm my fears. I also asked for a little happy pill to help me. Sleep if nothing else. And I needed it -- for the first time in my life -- at 3am some mornings. Don't hesitate to ask your doctor for this. Many, many here have done the same.

Come back and ask any and all questions when you have more info and have questions in place. I was well prepared for surgery because of my lovely "friends" here. I knew what to expect in some manner and, really, I didn't feel so alone. You are not alone!!!

{big virtual hug from me to you}

Hi there Basil. Personally, I had a lumpectomy which allowed me to tell only a few people, and only when I had my plan together. Some members of my family only were told two days before surgery because that was easier for me, and I don't regret for one second that I selfishly put my sanity and peace of mind first. If you've decided on a masectomy, then you will be away from regular activities longer, and will have to tell a larger circle of friends + all 15 people at work. But my suggestion would be to keep it pretty brief, and don't use Facebook.

I have a friend who used Caring Bridge when she needed meals and rides to the doctor, and she thought it was great. It also allows you to give updates to everyone at once.

Hi there,

I used Caringbridge to update my close friends and some family. I was quickly weary of the multiple phone calls, face to face questions, and emails where I had to continue to tell my story or update people, over and over, and what I found was having to respond when I didn't have the energy actually made me relive it all over again, causing anxiety.

After a few weeks I was able to not think about the dx and fear every so often and when someone would call (when Iwasn't thinking about b.c.) and ask me how I was, I was pulled from a calmer place to an anxious one. Sometimes i had to have my husband answer the phone for me when I knew someone wanted me to update them. Caringbridge allowed me to keep a pretty good blog about how I felt, my observations about treatment and all the emotions that went with it, and so it was useful for me to have a place to put those feelings and responses when I wanted to and let others read them.

I had two friends who were upset that I didn't want to talk to them all the time about b.c. and treatment and actually resented that I was sharing info in a central location like Caringbridge. I realized later that they wanted me to personally reassure them I'd be okay through multiple phone calls. since I was the one who needed reassurance I found their behavior kind of selfish.

Personally I don't feel FB is the right venue to share something as personal and serious as this. But I've never been an over-sharer on FB anyway so it's a personal choice.

I kept my announcement to immediate family, with mixed results. I only told a few colleagues. I wore a wig when I taught, so my university students didn't even know I was getting tx. I didn't want them to know; not their business--and wanted to avoid the "sad, sympathetic" look from strangers. Something about a bald head and no eyebrows, or a headscarf and no eyebrows, screams cancer patient. Most of the time I didn't feel too badly, so getting that look--oh, poor thing, how awful--pulled me from a place where I wasn't thinking about c to a place where I had to feel worried. Others wear their bald proudly, but I didn't.

My surgeon rx'd me Xanax to help me with the anxiety.

I'm a university educator and know how to research, and even I scared myself the first few weeks over-researching. I did ask my husband to find some positive research about the type of b.c. I had, etc., and he was more than willing. I also asked my grad school mentor/friend who had a dx of b.c. before me for advice, and she told me about dose-dense chemo (which I had), recommended a great MO (I did get a second op but went with my friend's recommendation), etc. If/when you do research, check the dates the research was released (go with the most current if you can); Mayo, Dana Farber, MD Anderson, NCBI, etc. are all pretty trustworthy. Science Daily is a good site since it offers information in more general terms using research as its foundation.

Just remember you are unique and whatever you need to do will be right for you, and that you will be okay. It sucks but it is also temporary.

Hugs,

Claire

I'm a 'teller'. I told everyone right away and told everyone to tell everyone.

When we got the diagnosis I posted it on my fb page & kept the post public for about a week, then marked it private as I didn't want to be getting comments on it all the time. Dh emailed a couple family members and asked them to tell everyone else. One thing we did stipulate was that we did NOT want people calling us. In the early days we just didn't want to talk about it with people & esp not over the phone.

In person was actually easier. I told my neighbours just in passing - "hi, how are you? I'm crappy actually. I've got cancer and will be starting treatment soon. Yup, really sucks. Anyway, gotta go.... " Everyone was nice, people hugged me, I got a little flower posy dropped off on my porch from one neighbour etc.

I started a simple blog just so I could update a few friends with where I'm at with treatment and appointments. It's password protected, only a few people have the link and the password. It means I don't have to do mass emails etc.

My kids are adult and they knew right from the start that I found a lump and was testing it so they've known all along.

There's no one way to do this stuff. We all just muddle through the best we can...

Hi Basil2, I was diagnosed in January 29 with stage 1 IDC. I am waiting to find out HR results to get surgery scheduled. I had DCIS ten years ago, with lumpectomy, radiation, and tamoxifen so I am feeling pretty pissed that this has happened ten years later.

I, too, am feeling a lot of anxiety. I made an uncharacteristic move: I was on Facebook when I got the call that I needed a biopsy and i rashly wrote it on my profile. I would not normally post something that personal. However, I have to say I was glad I did. The outpouring of love and caring was just so beautiful and has really helped me feel supported. When I was formally diagnosed on Tuesday, I posted it on FB and again got an amazing response. I decided to call those closest (family and best friends) and then I posted on Facebook. It helped me not have to go over it again and again with others in my life. I have been having trouble letting myself cry over this lousy diagnosis, but reading the loving posts on FB was just the thing I neede to make the tears flow. I am happy I did it.

Remember, this is your journey and if there was ever a time to establish good boundaries, this is it. If you do not feel like talking, say so. If you don't want to return a phone call, don't. What I found the first time was there was a flurry of contact initially which died down to just those closest over time.

I feel so scared and very anxious. We are normal. Our lives have been suddenly interrupted and we are being forced to deal with a frightening health problem. BUT we can and will get though it! I practice mindful meditation and it is helping my anxiety a lot right now.

Love to you

I bought the Mayo Clinic breast cancer book for an overview but avoided research on specifics until I needed to do that- after the info came in from post-surgery pathology. You will probably have an Oncotype test done to determine treatment, if you are hormone-positive and HER 2 negative and that will be helpful.

At this state, I mainly watched Netflix and stayed busy. I got some Ativan from my doctor for sleep- just a few but they really helped in the waiting stage.

Good luck!

Basil2 - don't go public on Facebook.

Cancer is emotionally draining, time consuming and financially worrisome. Newly diagnosed is an incredibly stressful time. Hopefully your surgeon told you that the breast MRI is to prevent having to go back to surgery but can generate false positives - biopsies of spots that end up benign. I'm guessing your MRI results are in now or will be in a day or two. The best outcome is no other areas to biopsy.

I felt a lump one morning that was still there the next. I called my PCP and made an appointment. I saw her two days before I checked my husband into the hospital for a stem cell transplant. I didn't even tell him what was going on until I had an initial diagnosis five days after he entered the hospital. Surgeon visit, MRI, biopsies, and two plastic surgeon consults happened before I went public. I told my children (early 20s), my immediate family, my husband's immediate family, my boss and the 3 people I was working with, and a handful of friends within the first week. The broader community learned about a month later when I shared on our CaringBridge site (set up for informing friends and family of my husband's progress). Having been a care giver and a sick person, you cannot keep up with who wants to know what. When people emailed me about my husband I sent them to CaringBridge. I didn't answer the questions. The advantage of Caringbridge is that people opt in. I am on Facebook but didn't want my or my husband's health discussed there. I did post his obituary on Facebook - that was the first that acquaintances knew that he'd been ill. I'd predict those people don't know about my illness (fine with me) and 50% of the people at his funeral didn't know about my cancer (again, fine with me).

Probably tell your children separately as you may talk differently to the 7 year old than the 12 year old. Positive and open will help them.

Suggestion - get the outcome of your MRI and any subsequent biopsies. Develop the surgical plan (lumpectomy, mastectomy, etc) and predictions on any other treatment (radiation, chemo). Then stand up a Caring Bridge site. Then send an email to those you'd like to inform, with the link to the site, providing the high level news and that all subsequent information will be shared on the CB site - allowing them to opt in or not. If you don't want it on FB, tell people that and ask them to respect that.

Don't stress about researching. Read legitimate websites and stay away from scary blogs and diatribes.

good luck

Hi, Basil2 - I'm sorry you find yourself here, but welcome.

I really like CaringBridge. I have a big family that's all over the country so not much opportunity for face-to-face conversations. Also, it was starting to be draining in the beginning to keep everyone updated by phone and email. Once you invite people you can ask them to respect your privacy and not share the link if you would like to keep the circle small. (i had a couple of well meaning people share the link with their friends or family I didn't know. It made me uncomfortable since I was making myself very vulnerable in the posts since I thought I was speaking only to my closest friends and family.)

The time right after diagnosis was the most anxiety causing for me. I really relied on meditation. There are some excellent phone apps that have different styles of meditation. I mostly used guided meditations, especially before bedtime. "Insight Timer", "Calm" and "Simple Habit" are some good ones.

Also, don't be shy about asking your doctor for a Rx for a anti-anxiety or sleep-aid medication. This is the sort of situation they are made for.

Outside of my closest circle who knew all the nitty-gritty from the beginning, I sort of just told people as I started to begin treatment and it felt natural. I didn't feel the need to keep it a secret. The support and understanding you'll get from people can be a real boost, and sometimes from the people you'd least expect.

Good luck as you start tackling this new challenge. I swear the anxiety lessens as you get a plan firmly in place and start your treatment.

Basil....I do not do Facebook and at the time did not know about CaringBridge....I myself kept a very small circle because as they say it sure is draining....Good intentions...people can ask questions that you really do not want to answer and they always approach you with someone they know who had Cancer...the BUT about this is ...THIS is YOUR Journey and only Yours....Liz

I have not read all of the responses, but here is my take on the situation. #1 Don't tell anyone else. Keep it private until your know more about your situation. As my doctor says, stage 1 or 2 are not life ending diagnosis, so react appropriately. #2 Get a counselor to help you deal with the anxiety and xanax medication. #3 Work on a hobby and don't focus on breast cancer. #4 Six months down the road you are going to feel differently than you do now, I promise. Then, if you want to tell anyone or be that shoulder for the next woman diagnosed, go for it. #5 Get walking with some "groove music" like Barry White. It is very healing. Don't stop walking until after your surgery, then rest a bit. Keep moving and get your blood flow going. #6 Cook ahead and freeze meals.

Basil2,

Sorry you find yourself here, but welcome. I'm a fairly private person, mainly I hear everyone else's troubles etc, so I don't even bother with mine. I told only my very closest friends,(and that wasn't until a day before surgery) I don't know, I just did not think I could handle all the sad faces and the keep positive comments that I would get. I know people mean well, but i had to deal with this the way I felt I best could. Months later, I have co-workers who do not know. Many friends I know they know from my other friends, but most have kept it to themselves. My lovely college-aged daughter had posted an instagram pic of me from surgery day(after surgery) with a loving post of being a strong warrior. This was in October. Love her to pieces but could have strangled her lol. I started to get calls from acquaintances because their son/daughter is friends with mine and saw the pic and told them. Last thing did I want to do but field calls or have people come up to me on Halloween as their younger kids trick-or-treated at my house and bringing it up that they saw it and how sorry they are etc.

Guess I'm saying tell who you want, don't feel bad if you feel keeping it limited. If and when you are ready to tell others, you will, if not, not. Everyone deals in a different way.

Basil2:

One day at a time is a great way to manage this right now. All you can do.

Everyone is anxious about surgery, but after two in 2017, I can say that everyone on my team was so capable and caring (down to the nurses who came in for the prep stuff at the very beginning). They do this every day. So, really, try not to worry. You'll do well -- and they will take care of you. You may have to lean on family, etc., for a bit, but that is okay, too. When you know what you're doing, express your anxiety to your doctors, let them explain everything (if you want to know details). Ask about their pain management protocol so you're feeling good about what will occur after. Also, there are many lists here for getting prepped once you know what you're doing. Some very small but beneficial tips that NO doctor will ever tell you. I was really well-prepared for surgery!

{hugs}

Basil2,

Your post could've been written by me ..I just received results from my core biopsy April 25th , 2 days ago .All I know so far is that it is Papillary Carcinoma. I happened to be at grocery store when my gyn called to 'chat' ..I knew right then and there it wasn't good news. Surprisingly, I took the news very well, and continued shopping like nothing had changed. I went home ,cooked dinner, still thinking it wasn't really so .After dinner I told my husband the news.& said I don't want him making a big deal about this. I think I was in shock or denial or both. It wasn't until bedtime it hit me like a ton of bricks. I kept going over in my head every ache & pain I have had the past few years, & imagining they were all related to this dx. My mind got the best of me. So first thing yesterday AM I called my PCP office.I was just a mess. They got me in right away. My PCP along with the staff really eased my fears. I have an appt Monday with BS. I've chosen not to Google just yet, as it will only confuse/ upset me more. This is still all so new to me .I know I have a lot to learn, but my brain just can't go there yet. I have only told one close friend & husband. It will do me no good at this time to tell my siblings , children etc... when all I know is that it's BC .. I want to be in a better place mentally. My husband found this site..and told me about it ..I think it's going to be a Godsend for me.. Just the little bit I have read, has called my nerves.