anxious, scared, confused...

Rachel1966

I apologize if I'll be offending anyone and please excuse my ignorance.

I've been reading posts from everyone on all topics.  I'm newly diagnosed and finished my chemo and just started on Tamoxifen and I find myself everyday having anxiety attacks and full blown panic attacks because of the what ifs and when will this cancer come back.

Then I read here and I read the diagnosis of people and get so confused. 

Why are some women with less than what I have already with mets and stage IV?  How does that happen?  I'm very confused about how mets occur, when they occur and how can you be diagnosed with 1cm idc, no nodes but stage iii or iv and with mets?

I'm so scared and I just keep focusing on that. 

Thank you for your time.

GrandmaBubba

Rachel1966 - Mets happens when the cancer travels to other parts of the body. A lot of people used to think that if air hit it it spread so they wouldn't have surgery. Anytime you have cancer in a different part of the body it's called stage 4. I'm not like most of the women on this site, because I look at cancer as a no lose situation. Either I live and get big foobs or I die and go to heaven. I had an anxiety issue before cancer. I finally had my meds right and then started on Tamoxifen and they had to change my meds and now I cry at the drop of a hat. It really helps me to believe that God is in control and he wants the best for me. When you get through this, and you will, you'll be better equipped to help others get through it. I'll be praying for you.

cathmg

Hi Rachel1966,

You're right to feel confused-there seems to be no guidelines with bc. Sometimes people you least expect to be OK do well, and vice versa. And that uncertainty makes for high anxiety. I am predisposed to worry and anxiety, and I had panic attacks for quite awhile after diagnosis and treatment-I took the antidepressant Celexa, and it helped. Panic and anxiety really suck, and I'm sorry you're going through that.

When I feel anxious about whether "it will come back" I do something like cook something healthy or take a walk. I find long walks and exercise helps. I have been able to go off the antidepressant. I find if I drink too much caffeine I get more anxious, so I try to stay away from more than one cup.

It does get better.

Sending you a hug,

Cat 

Rachel1966

thank you Cat.  It's one day at a time and I am at the point of considering medication, but I prefer your idea of cooking healthy, walking and getting out there. Thank you.

littletower

It's true what you're saying Rachel, cancer is a very tricky disease, hard to know what it will do. That being said, things will get easier for you. Come here for support and encouragement (and loads of knowledge!), that helps. And I know for me exercise keeps me sane. Makes me feel like I am actively working to kick the beasts butt:) (((((((((hugs to you)))))))))

WinnieThePooh

I'm struggling with the same thing.  I just finished my last A/C and thought I would be thrilled - but instead - I'm worried about a recurrence!  Will I have one?  Did the chemo work?  It's awful.  I've worked myself into such a depression over the uncertainty of it all and I don't know how to pull myself out of it.  People tell me that time helps.  I hope so.

L.     

Tiredofjourney

I am halfway through with chemo - taxotere and cytoxan. It does get confusing, and it seems BC is being treated more agressively today. I thought my Stage I , node negative, small ,<1 cm tumor meant no chemo for me, but my oncotype score of 22 (that dificult decision middle score) showed me otherwise. Even when I first saw my sugreon, I was told chemo was unlikely. I had a choice,but chose to be safe. I'm still worred, even though the chemo is supposed to reduce chance of recurrance. When I asked my oncologist if reaching the 5 year mark w/o recurrence meant I would be home free, he replied that with some cancers like colon cancer, that would be true, but breast cancer has to be watched for much longer. On one hand I was told chemo will be for the "cure", yet I get other messages. I get depressed, and cry smometimes without warning,  It scares me, and I've considered asking for anti-depressents, but am afraid it might effect trearment. Anyone take anti-depressants during treatment.? So far walks help a little and retail therapy a little more, but that gets too expensive. Somteimes I fell like a baby getting all worked up over Stage I, and should snap out of this, but all the treatments, tests, and doctor visits reinforce for me how serious this is.

WinnieThePooh

Most people tell me that time helps the anxiety of recurrence.  Maybe it's worse when you're right in the midst of it like most of us.  I always wondered what the five years out meant.  It can still recur after that time, right?  Everytime I meet with my doctors I have a list of questions, and then when I leave I think of tons more!  Sigh...  I could really use some good news...  I wonder how the vaccine is coming along.

L.

Rachel1966

My oncologist told me the first year is the hardest. She said after that year it gets easier with moving on and living your life.  I'm not so sure... I mean okay we get to the 5 year mark and so far so good. Then the cancer clinic releases us from their care and we're out on our own. I would think that the fear would return wouldn't it?  What does happen after 5 years? If the cancer does come back after 5 years does it come back worse?  Oye vay so many questions!

I"m a Stage II, 3cm invasive and I'm freaking out.

Tiredofjourney

To Winnie the Pooh: I know what youmean about questions for your doctor. I make a list and take it with me each visit. Then on the way home I think of something else I should have asked.

To Rachel1966: My oncologist said he would see me every 6 months for 10 years after I finish treatment. He also did the marker blood test on my first visit (I think it is Ca27,29) to get a baseline score. Every six months he will repeat the test and if the score goes up significantly, then that would indicate the need for further testing such as scans. I feel good that he will be constantly watching me, but I guess will always be fearing the results of the blood test. BC certainly changes life forever.

flowerfloosey

Dear Grammabubba...I love your attitude and I look at this the same way sister! I am scared to death about what I might have to face (undiagnosed biopsy tomorrow) but I know because of God's Word that He has a plan for my life. Thanks for stepping out to say this! It encouraged me today!

dlcp

Hi Rachel 1996,

Like you I recently finished my chemo sessions last January 24, 2011.  I am also scared what will happen after chemotheraphy.  I thought that after chemo I can shout for joy but it ws not what I expected.  Instead I became conscious of almost any pain that I am encountering in my body.  I thought of so many things. Like you, I am also wondering why some have small tumors and others no lymph node invasion, but they have mets, so ironic right?  I have known one cancer survivor, she was diagnosed stage 1, and she was cancer free for 18 years, then lately the cancer came back and it was on her skin, but she fought back go on chemo again, and now she is ok..Sigh..I think one good thing we should do is exercise, eat healthy foods, think positive, pray, and live a life that is rather stress free and that includes deletion of negative thoughts of having recurrence, because I think if we continue to think of it everyday and continue to fear and it doesn't happen, we already loose a lot of energy worrying of something,that did not happen. Instead we should live life to the fullest, enjoy and seize the moment what we have now.  Let us inspire each one of us "pink sisters"...go! Bring back the life that breast ca once  took away from us.

Keep the faith!

mdg

I am only 1 week into chemo and also am scared.  I feel like right now I am focusing on doing everything I can to give me the best odds.  I have changed my diet, I exercise (like I did before BC), I have switched to all chemical free health care/make up products, use natural cleaning agents in my home, eat organic, don't eat refined sugars/carbs/beef.  Chemo was a choice for me because my oncotype score was in a gray zone.  I chose chemo.  I am doing EVERYTHING I can and if it comes back then God has a much greater plan for me.  I am scared to death...I have a 4 year old little boy.  The thought of not being here for him puts me into a complete panic.  Once I get through chemo I plan on starting some counseling and am not afraid to use anti-depressents.  I am not the kind of person that likes to even take aspirin for a headache normally, but since my diagnosis I feel I will use all of the tools available to me to find a way to be healthy physically and emotionally.  If that means living better with pharmaceuticals, so be it.  I know I am not quite where you are now, but I am prepared for the panic to set in...I have read on here enough that lots of ladies go through this after treatment.  Right now I am planning a big celebratory trip for 3 months post chemo with all of our closest friends.  I am staying focused on that to get me through chemo.  Hugs!

dlcp

Hi mdg,

I think we all have to go and experience this panic mode after chemo, I did..sometimes I feel difficulty in breathing and I would that maybe I have lung ca..and so on and so forth. I have two kids who are also very young, 3 years old and 1 year old, that alone can make any mother who has breast ca enter into panic mode, but slowy I regained my stature and turned my energy into a positive energy and it helps...as I say live live life to the fullest, and live as it was the last day of your life!  Take Care, hope we all can go through this successfully.

Rachel1966

That's what I'm having a hard time with... live, live, live and stay positive.  

I have a 2 year old and I look at her and instead of being happy and embracing her, I think of will I be here when she's 8, 10, 20 etc...

I seem stuck on how to move ahead. I know that I need to change my eating habits, lose weight, exercise, trash out the negative but I just can't seem to find the courage, strength, or step to do that.  It's not like I live in pity because I don't address my cancer, I don't use my cancer, I don't even talk about it to anyone - I just keep it inside.

But reading here does help and I'm going to seek out some help to get me started.

TonLee

Rachel,

Find a group of survivors in your area.  You will meet women face to face who are 5 years or more out.  They will be able to give you practical every day ideas/skills to get you through the first year.

I attend a couple groups (different ages) and the thing that seems to be ONE of the most effective move-ahead-and-on-with-life skills is simply staying busy.  For some that is with a job, volunteer work, one woman I know started remodeling her house right after done with treatment (that's what I'm going to do).  But they all agree (those who are really grabbing life by the balls), sitting at home on the net, or watching tv, or anything sedentary is not good for recovery...physically OR mentally.

No one is promised tomorrow, cancer or not.  So get to living!

shooshoo23

Wow, I am so glad I found this thread. I was diagnosed with panic disorder several years ago, but after getting meds situated and breathing exercises and positive thinking, etc, it was pretty much under control. Then WHAM breast cancer hit and threw me for a loop! After each of the last two chemo tx's I ended up in the ER with panic attacks. They have been really bad. I too am stage 1 and have a good prognosis, but the what if's are terrible. I lost my best friend 2 years ago. She battled breast cancer twice and then ended up with pancreatic cancer and lost her battle. That has been my only personal experience with cancer and I have compared myself to her through this whole journey and I think it has made it harder. The dr's are very encouraging and tell me they believe I will be fine and they tell me that MY cancer is not HER cancer but it is still very difficult. Grandma-I love your attitude too. A couple of times I have been able to get to that point. I get so exhausted from the panic attacks that I kind of finally give up and tell myself the worst that could happen is that I would die and I know I'm going to Heaven so it's really not bad at all. I need to work on feeling that way all the time! So grateful to find women who understand these feelings.

Love to you all 

Laurie09

Rachel, you are very normal.  You're not alone, and you've gotten some great advice.  

The fears are very real, even for those of us who have a good chance of a cure, you can't help the "what-ifs" from popping in to your head.   

It is confusing to understand why some women develop mets and some who see to be at higher risk are just fine.   Cancer does what cancer wants, so while the statistics tell us who is at higher risk and lower risk, it doesn't tell you what's going to happen down the road.  I think it's that uncertainty that is so unsettling.  

Basically metastasis occurs when cancer spreads to a distant organ or region (for BC, usually liver, lungs, brain or bone). That is stage IV.  The stages I, II, III are used to distinguish how large the original cancer is and whether there is any regional spread (to lymph nodes).  That is used in part to determine how aggressive or advanced the original cancer is, and from there you have some idea of relative risk for developing metastases i.e. Stage I and II overall have higher cure rates than stage III. However, some stage I's can turn into stage IV and many stage III's will be cured.  The reason for that is that despite all of the medical advances and tests available, there can be microscopic cells that can have spread to other parts of the body that can't be seen.  So even with a BC that appears to be an isolated mass with no LN involvement, there's a small chance that it could have already spread and that can show up months to years later.  So it's still a bit of a crap shoot.  The staging also helps to guide treatment decisions.    

The good thing is that most breast cancers are treatable and most of us will do well, but the fears and anxiety you're experiencing are very normal.  It does get better with time, but I still struggle with not worrying about every ache and pain.