Stage 3 anxiety fear of reacurrence

I'm sorry that you're having a bad week. It seems when a week goes bad, the world just piles on, doesn't it? When you're feeling more able to attack the problem, you might want to consider behavioral therapy. Instead of telling you to think positive, a behavioral therapist can help you with HOW to think positive, and can give you practical ideas for how to deal with feelings of impending catastrophe when they arise. Just telling you to think positive is not helpful.

Despite what you see, no one has a perfect life. Sometimes the people putting on the best show have problems that would absolutely curl your toes. If you are putting on a happy face all the time, I'll bet there are people that think YOU have the perfect life.

I hope the biopsy goes well. Please let us know, we are thinking about you. Take life one day at a time. Today as far as you know, you do not have cancer.

Carole,

I hope you are feeling a little better. I certainly have anxiety, distress, over my stage 3 dx. It will be 2 years this summer since I was dx, so just over a year since rads were over. I am getting Zometa, so that is on going.

There are lots of threads here that are very supportive. I visit with the ladies on INSOMNIACS. We are a diverse group, we have ladies from stage 0-4. All is welcome. Join us.

I gotta confess not a day goes by that I don't have some anxious moments about my breast cancer. It is always there. It is down a few layers now, and I live on top of the anxiety layer, but like an archeological dig, I sometimes find myself unearthing it. The oddest things can set me off. I think it will always be with me, afterall, it has been twelve and a half years...I vote that any of us who have fear of recurrence are normal people living in the real world!

I kind of operate on the assumption that it will come back and that it is likely to kill me one day. That way, if it doesn't, I will be so pleasantly surprised I also figure that the longer I stay healthy, the better the chances that they will come up with some new and better treatments.

Momine, I tend to think that way to, and it may seem strange to others, but it gives me an odd kind of peace to think that I already know what will probably take my life.   I also view my oncology check-ups as a sort of "reset button" meaning that everything that scares me or makes me worry builds up for 6 months, then when I get the all clear, I erase those "symptoms" from my worry list.  So certain aches, bone pain, lumps - once they've passed a blood test and MO visit, I assume they aren't cancer related and train myself not to stress over them again.  The two-week rule helps me, too, so when I am concerned about something, I write down the day it started - and nothing has ever lasted 2 weeks or gotten bad enough that I felt I needed it to be checked.

I'm sure my friend Effexor plays a big part in my outlook, as well. 

I'm sorry you're suffering so much, Carol & Lexie.  Carol mentioned therapy but not meds - have you considered or tried anti-anxiety meds?  I mainly take Effexor for hot flashes caused by Tamoxifen, but the anti-depressant factor is a big plus, and my MO is a firm believer in doing whatever helps improve my life.  Hugs to you both.

I'm so sorry you are on this roller coaster. Unfortunately, I'm in the front seat with you. The Arimidex was causing such severe side effects, including suicide ideation, that I convinced my onc for a 3 month holiday. It was wonderful... Until I got my tumor markers late February. Suddenly, my CEA tripled and was borderline abnormal and my CA 27-29 doubled. I know these tests aren't reliable but after 3 years of extremely low markers, I am alarmed. Being Stage 3c, I was told I had a "very high likelihood of recurrence" and have ignored that, until now. My onc doesn't believe in scans and the last one I had was my first. I also found out last year that while chemo killed the four tumors I started with, BUT 2 new ones with different onco type grew DURING chemo, before the bilateral mastectomies. I cannot understand why no one told me that. I only found out when I needed to request those records for another reason. With that knowledge, my red alert system became more heightened...

I rarely get anxious about tumor marker time, but for some reason in February when I went in, I actually became nauseous. Like something in my gut knew the numbers would be off... I have the same feeling I had when I first felt "the lump." I knew it was cancer. For some reason, my gut keeps telling me something is wrong. Plus, my primary has been concerned about my rapid weight loss and lack of appetite. 30lbs in 2 months without trying... Plus stomach pain for 8 months.

Anyway, I've procrastinated getting a second test until today. I've been off Arimidex so that we can get an accurate reading. I'll get my results Monday. I know I'll be fine no matter what, but my anxiety and fear is possibly having to tell my son that I have cancer again. He was almost 7 when I was first diagnosed. He just turned 12 and we've moved away from cancerville, despite severe post mastectomy pain syndrome, 40 surgeries in 5 years, Lymphedema, brain damage from chemo, blah, blah, blah... And, my marriage is broken beyond repair from the hellish experience (anything that could go wrong did). He doesn't know I'm scared about what's going on... I just cry a lot...

So, my lovely sisters on this ride, what do you do to hold it together when waiting for results? I usually get involved in some project, but am recovering from ankle surgery so lots-o-time to think. Arg!

No one else gets it. Only my therapist and onco team know and they all say, "it's nothing" "live in the moment" "don't worry about it" - clearly none of them went through the BC Highway to Hell and then waited for test results.

Ideas?

Bexter

Well, next week will be 9 years for me....and I STILL think about recurrence every day. Claire is right though - I have managed to layer on many experiences since that terrible April in 2006: went to Costa Rica, bought a secondary house at the Oregon coast, celebrated 30 years of marriage, had my hip replaced - but just last week I felt the familiar fear flickering when my lower back started aching (is it time for another nuclear bone scan? It's been over 4 years since the last scan...what if?)

I guess my surgeon was right - the only thing that eases the raw panic after diagnosis is TIME...and the trick is to enjoy that time & not just wish it away. Easier said than done....!

Julie

Hi Everybody - I was hoping to discuss a few things with you ... since you all have the same or have a pretty similar diagnosis. I had stage three with four nodes. I went through chemo first and had prominent chemo changes in my pathology report. the four nodes were left with just traces of cancer and I am estrogen and progesterone positive her2- .... I had bilateral mastectomies and radiation that finished St. Patty's day - but the doc noticed a little bit of change (a few weeks ago - about a month out of rads) on my scar line - and told me it was most likely fat neucrosis - but I am freaking out. I am going in for another measurement 28 days from the first because I receive my zoladex shot that day. Has anybody experienced this? The thing I keep telling myself is "it is way too soon after being lambasted with chemo/surgery and rads for it to be anything too serious. However, I can't help but be in panic mode...

mary, I have a small rice-sized bit in my armpit that developed after my mx. It's still there and everyone (onc, bs, ps) all agreed that it is either a bit of scar or fat necrosis. For years, I have been feeling it, making sure it hasn't changed size (rice grain to pea?) It hasn't, but I will always still check. However, I don't worry.

The odds are yours is necrosis, too, and if there is no change for several months, I'd call it that.

2 lumps post diep on the mx scar. 1 biopsied and was fat necrosis. 2nd lump to be biopsied on the 29th. I am my ps agree without hesitation, that because of my dx, it and any other lumps I get must be biopsied. If you are really concerned it's probably the only way to be 100% sure that it is necrosis.

Has anyone found a mechanism to stop planning for the next 5 years? I was always a planner (even though nothing went according to the plan) and now after this Dx I am finding it hard to live my day to day without planning ahead and not asking the what if?! 

The hardest thing is family planning (I am only 34). Every time I think of having babies a second grim scenario plays in my head. 

As my first anniversary was approaching I saw my BS and asked her of some lumps I could feel in my armpit area and she said it was fat necrosis. I was advised that if I noticed any red pimple like bumps, around the scar, to call the doctor right away.

Thank you, Jill. I like your coping skills and attitude. Trying to get there--I find getting involved in something/keeping busy/exercising helps me "forget" and enjoy life--however when I stop the fear returns. Really don't want to waste a great life with nagging worry. Just over chemo/radiation, now Herceptin every 3 weeks for the rest of the year. My dx is Her2 positive, Stage IIIa (4/24 nodes involved) so similar to yours. Looks like you're about 4 years out and doing well--reassuring news.

I'm 3 years in remission....I agree, I worry about it too...esp when i hear about recurrence of someone... I try to figure out how to beat the odds... I hate the "what ifs" ..hate the uncertainties .. of course positive outlook helps but the whirlwind of thought take over..ITS SCARY !!!!! My son is now 71/2 years old and I want to live long enough to see my grandchildren no too ambitious a plan now is it lol? ..... I try to relax ... I "Tap" a lot....do a lot of affirmations and what has helped me also is the bach flower essences esp the rescue remedy and the mimilus essences.... I got it from Whole foods. I think it works... Some how manages to put fear out of my mind....