How do you deal with the anxiety?

Hi Alicki!

Firstly - no great advice from me, I'm actually logging in just to say we are in a similar boat of waiting so I can empathize and look forward to see what the other posters suggest!

I am 32. My Mom was diagnosed last year and had a mastectomy and treatment for breast cancer. Just before Christmas I had bleeding from one nipple and they thought  maybe a blocked duct since I breastfed in the last year. Mammogram and U/S showed three masses which were thankfully benign and were intraductal papillomas. They were surgically removed and my doctor said there were clusters of smaller ones there too. That combined with my Mom puts me at higher risk.She also said that mammograms won't be useful in detecting changes like these so she thinks regular testing by MRI and ultrasound would be more helpful. I haven't yet had the test for the gene but hope to at my next appointment. I have an 18 month old daughter and this has all been quite scary. We would love to have more children but I don't feel comfortable moving forward with that until I have my initial MRI and get the results - that way we can know a little better what exactly I may need to make decisions on. 

The anxiety question is something I am definitely thinking on - like, how exactly do you get to a point where you are comfortable with clear test results right now and don't see them as clear "this time"? I am very open to meditation - I downloaded a stress reliever 5 minute meditation app on my phone and I find that helpful. I am also looking in to some other ways I can manage my risk factors - I can't change my family or personal medical history but I can definitely start making positive diet, lifestyle and exercise changes. 

Anyway, just wanted to give a shout out to someone else in a similar situation and I look forward to reading some tips!

It does get better with time.  Not sure it ever goes away completely but it does lessen xx

Alicki,

You initially asked those dealing with
non-BC-related conditions how they live "NORMAL" lives (your words) -
that was a little harsh and sharp to read as someone who HAS BC and is
struggling to live a "normal" live.

I don't think Melissa was being sharp, or harsh - but realistic.  And I say this as a BC survivor two years out from end of treatment for an early stage cancer.  "Great news!" right?  Except my cancer is aggressive, and for a number of reasons I am choosing not to continue taking Tamoxifen, which increases my risk of recurrence (metastatic disease, which is incurable) to about 23%, most likely within the first few years.  So - reason for anxiety, right?  Right.  And as Marie pointed out above, knowing what triggers, or drives, my anxiety (which can become debilitating for me at times) is half the battle in controlling my anxiety.  Right now, being here on BCO is fueling my anxiety in uncontrollable ways, and so I am working on distancing myself as much as possible.  My behaviors serve a purpose and reinforce my feelings; reading about recurrence and BC and Stage IV (my behavior) only serves to reinforce my anxiety (my feelings), which anxiety, in turn, causes me to read more about recurrence and BC and Stage IV.......it becomes like the ouroburos, the snake that eats its own tail, creating a never-ending circle of destruction.

I know you want more answers; some of us will never get them (or when we
do, they won't be the answers we were hoping for). In your case, you
have so many answers, most really good, and you're in a good place
physically. Yes, fibrocystic breasts cause problems; your lymph nodes
are good (even if perhaps a little chubby with fat deposits), and you
have been told you don't have breast cancer and, from what i can tell,
are not at high risk for BC.  So, with all the lovingkindness I have, I wish you peace in this journey, and hope that you too are able to manage your anxiety in a way that does you less harm.  Please, take it from someone who struggles to live "normally" every day - worry does not change what is or what will be, but it takes away the love and pleasure of life going on around us. 

alicki - Wait.  You've started 11 threads and made 260 posts and you don't have breast cancer?   

Hi Aliki,

I think you have earned the right to complain.  Once I figured out that breast cancer gave me a sense of time warp (one day to me is not the same as one day to a medical provider or administrator), I decided to write about my experience.  It let me whine however and whenever I wanted to, and no one would know the difference.  I wasn't brave enough to share on a message board such as this, and so from my perspective, you are one brave warrior.  I am three years past surgery, and so far so good.  I decided to publish my journey in an e-book on amazon.com and am offering it for free on May 1st (only).  It is my way of giving back to all those like you who gave me so much comfort when I was trolling message boards.  My nurse navigator said it made her laugh out loud, and only cry a little.  Tales of a Remarkable Breast.  If you don't have a kindle, let me know and I will send you a copy in pdf.  All the best to you Alicki, and thanks for sharing.

I was diagnosed with stage iv bc almost three and a half years ago. I had all kinds of emotions jumbled together. My doctor kept trying to prescribe antidepressants but they weren't working.  It took me about six months to realize that I had anxiety, and not depression.  When I described my feelings to the doctor, I finally got a prescription for anxiety only.  

It.gave.me.my.life.back.

Before I got the right meds, I would sit on my sofa many days literally trembling. I tried meditating. I tried listening to meditation tapes. I tried prayer. Look, I know now none of that stuff was going to be effective.  I needed medicine.

I just could not function without the anti anxiety meds. I take a mild dose of Buspar every day. I am myself, I laugh, cry, get angry, get excited, all the normal things. Because buspar is not habit forming, you may find you use it for several months and then don't need it anymore. I know a couple of people who did that with this medicine.  It just helped them through a rough patch.

The medicine takes the edge off.  I still work part time and you'd be surprised how much other living I have packed into my life in these past three and a half years.

You may be a person who has mild anxiety in general, and it's possible that dealing with breast issues has tipped you over the edge.  Get medical help for your anxiety.  Don't try to power through it like you gotta be tough.  My doctor likes to say, "better living through chemistry". 

alicki, the generic name of Buspar is buspirone.  I am sure the doctor can prescribe something similar if it is not available to you.  

All the different anti depressants I tried actually increased my anxiety so I was grateful to find the Buspar.  It took awhile to find the right medicine for me but I begged the doctor to please not give up on me and help me find something that worked. 

Best wishes to you as you continue with your medical testing.

I think you do what you have to in order to make yourself feel better.  It seems to me that they wouldn't have forum's for "High Risk" and "Waiting for Results" under the heading "Not Diagnosed but Concerned" if they didn't want people to use them.  When I look on these boards I don't feel as anxious or alone.  I don't feel bad about worrying because no one here is telling me that it's wrong to do so.  At least I didn't feel that way until I read the post here about how many posts you made and how many threads you started when you haven't been diagnosed with BC.  God willing we will never find ourselves knowing what that feels like.  But I feel prepared and empowered knowing that I'm making sure that I am informed about things to watch out for.  Having been misdiagnosed on another medical condition for years I say that you should go with your gut if you are worried that the doctors are missing something or dismissing something you are concerned about without putting your fears to rest.  Doctors aren't God and there are some out there who ruin peoples lives because they act like they are.  Demand answers if that's what it takes.  If meds for anxiety help you then take them.  I take xanax when I have panic attacks.  But I suffer from PTSD.  Most of my anxiety with things with my breasts has been caused by long waits for answers.  I'm waiting again right now because I'm having pain after (since) a core biopsy in Feb.   They found several benign things in one area so I'm not really concerned that it will come back with anything else, but they are talking about doing an excisional biopsy.  Mostly worried that this won't help the pain or that it will cause more pain.  It helps me to connect with other women who are in the same boat.  Who know how it feels to have the extra risk no matter how slim it might be.  Because frankly some of us are going to end up drawing the short stick on that one.  Just as others have.   This is the best place I've found to get support but maybe there are others out there that I just haven't found.  I've felt good about trying to give a few words of comfort to women who are worried and waiting for results from the perspective of someone who got good news.  Now it seems like it might bother some women on here that I am hanging around instead of moving on.  I think it would be a shame to drive women like us off.  What happens if we are Dx'd in the future and we don't feel comfortable coming back here?  Sad.  

Melissa the post that got to me wasn't yours.  At least I don't think so.  Although I think you gently suggested that she might not hang out here so much to help lower her anxiety so I was responding to that too.  The post that made me feel bad for her was one that listed the number of post she's made and how many thread's she's started when she doesn't have bc.  Anxiety is a hard thing to deal with and when you are left feeling like you don't have the answers it really helps to talk to someone who has been through that worry.  Who might have the answers.  I tried to ask about my biopsy results (I was told I had a papilloma but when I got the report it listed other B9 changes too.  I was concerned about having 3 different B9 changes in one spot.)  I tried asking on a parent's off topic board I belong to, but I didn't get any answers.  So I came back here, but no one seems to know.  They just focus on the "B9 isn't that great!"  Yes it is.  But it won't do me any good to pretend that it can't turn into something if it can and I don't want to be one of the women who comes back here with an "I wish I'd known." story.   And like Alicki said it's hard to trust doctor's when you don't feel like you're getting answers to your questions.  Even more so when you've been burned by 1 or more doctors in the past.  I hate doctors who feel like we shouldn't ask questions.  Just trust them.  I won't make that mistake again.  I think it's fine to encourage someone to look for answers in the right places or even to just empathize with them if you don't have the answers.  If you are so inclined to ignore the and hope they will move on.  I just didn't think it was OK to throw in her face how much she had posted.  And no I didn't go "stalk" her to see what she had posted and where.  I looked at this thread because I thought I might get some helpful answers and that even if I didn't that I could understand.  I look here and I'm amazed at how quickly some women get their results.  It seems sometimes like it's a few days to a week from mammogram to biopsy results.  A few will be a little longer.  I wish so much my stuff would go that way.  Maybe my anxiety wouldn't build up as much.  But it's been over a month between my BIRAD's rating and my biopsy both times.  Then a week for the biopsy results.  And both times I've been good with the b9 results although a few people have questioned my not insisting that they take out the growths anyway.  Especially the papilloma.  I was fine with waiting until the pain started getting worse.  Now I'm back in limbo again focused on my breast and what is going on in there to cause pain.  I go to a Women's Hospital for my mammograms and between 3 places they could send me it's taking weeks to get a diagnostic mammogram, while I sit here in pain.  To me it is unacceptable to make women wait that long when there is anything concerning going on.   I'm seeing the breast surgeon on Wed even though I won't have the mammogram until the 22nd. (Unless something opens up sooner)  Not that they have ever seen anything I've had on a mammogram.  I know my anxiety is being kicked up by not only that but the frequent stabbing pains in my breast.  I hate to take any medication but I've taken pain meds or anxiety meds more often over the last 4 weeks than I like too.  I never even like to take them when I went through my worst stage after I was attacked (attempted kidnapping) many years ago.  They do help, I just don't like the way they make me feel even in the lowest doses.  So the trade off has to be worth it.  I've been trying some yoga because a friend said it really helped with her PTSD anxiety.  I've also found jogging to be very therapeutic and helpful.  However I don't feel like doing it when I'm in pain an wondering if something is wrong that I could make worse if I do it.  So I feel trapped a bit when I want to go running.  (If you can call my slow pace running.  LOL)  But it might help someone else with theirs.  I highly recommend the C25K program. (Couch to 5K)  It really is amazing.  Although some people have to repeat weeks (or add days) like I did the first time I started it.  There is no shame in that.  When I had to restart it after a back injury toward the end I didn't have to repeat any days.  If you've ever thought it might be fun to jog, but "I could never do that" give it a try.  I amazed myself and I wish I'd tried 20 year and a lot of pounds ago.  Really though any kind of exercise can help with anxiety.  It also releases endorphins which helps with your mood in other ways.    I'd love to hear other suggestions.     

Wolfslady -  I haven't had a chance to read your other posts, so I'm not up to speed on your condition, but the last few lines of the post above caught my eye.  I also had a mess of b9 things going on in my breasts, a ton of swelling and pain, and also found that exercise was helpful in lessening the symptoms.  I used the couch to 5K app and took up running a couple years ago - one of the best things I've ever done.  I admit it was kind of uncomfortable at times when I was having some particularly bad pain/swelling days, but I got myself squished into a tight sports bra, sometimes 2 at a time, plus a support tank, and  powered on through it.  I never thought I would be a runner, so nobody was more surprised than me when I realized I liked it.  The elliptical is great too - gives the same basic motion without the impact, so no bouncing .    I've read that cardio activity helps to regulate hormones, so in my case I think that helped to alleviate some of the pain I was having. 

I can also sympathize with the anxiety factor.  I'm a control freak, and when I was going through my breast issues it was pretty much the first time that I felt like I was out of control.  And it sucked.  I didn't think to ask for any medication, but looking back, I probably should have. 

So I hope you are able to get some answers and some relief soon.  Best of luck to you.

Alicki - I didn't have "fatty" nodes, I had enlarged nodes.  I don't know if there's a difference or if it's just choice of terminology.  And they didn't find anything in there - the 2 aspirations I had returned b9 results.  I had sentinel node biopsy during my pbmx, and the sentinel nodes were clear.  Additional nodes were removed at that time as well - some turned out not to be nodes at all, just fibrous breast tissue found in the axilla.  The ones that were lymph nodes were identified on the pathology report as b9 nodes with sinus histiocytosis.  Which, according to Dr. Google, is an overgrowth of a particular type of cell in the nodes.  Story of my life - benign overgrowth!

My recovery was, in the scheme of things, pretty easy.  Not to say it wasn't a tough surgery - it was, and there were a few times during the early days when I thought I had made a huge mistake.  But that was really the pain talking, and once I felt better I knew I had done the right thing.  I had reconstruction, so I don't know how much different it would be without it.  I've heard it's an easier recovery because there's not as much impact on the chest muscles (such as with TE/implant reconstruction) or a donor site (such as with a flap).

I can understand your frustration with your fibrocystic breasts - I had them, too.  And although they are "normal", they can be very uncomfortable and sadly there's not a whole lot that can be done about them.

I think I've said to you before that I made my surgery decision based on other factors in addition to my fibrocystic symptoms.  I'm not passing judgment one way or another - you're doing your research now and you'll make the right choice for yourself.  For me, it boiled down to a quality of life thing, both physically and psychologically.  I haven't had one second where I've missed my real breasts, honestly.  I like the new ones just fine.  But it's very individual, and I don't think people who haven't been there can really get it.  Take care