Diagnosed and not Worried

my experience of having breast cancer....over the last 7 and half years....is that peoplei have various feelings...reactions...emotions...responses...to the whole thing...from initial symptoms...to diagnosis...to treatment....(depending on your protocol)..follow up and post treatment....i have been scared....not scared....ok...not ok....sick of the whole thing...feeling lost...not feeling lost....thinking i am going to die...."fists up" no i am not going to die....etc..etc..etc..

i think you feel the way you feel; there are no instructions that come once diagnosed on "how to do breast cancer"  or "how to feel having breast cancer" ...

just be where you are....in the moment...feel the way you feel...we are all so different.  when i was in breast cancer support group...(when i was in treatment).i realized we are all so different...as different as each pathology, stage...history..etc. 

Just be in the moment..one day at a time.

diana50

It's been just a bump in the road for me too...and a very small bump at that. Except for some minor residual surgical pain that lasted a few weeks, my entire breast cancer experience was over and done with in the course of about 3-4 weeks.  

I was frightened only until the moment I got the biopsy path report and found out it was just a grade 1 IDC with tubular features mixed with grade 1 DCIS. Once I heard that, I knew the odds of local or distant mets was very minimal, so I immediately knew that as long as my surgeon got wide, clear margins, then I was essentially home free.  That's why I refused everything except the lumpectomy and SNB.  Before knowing the biopsy results though, I was imagining all of sorts of potential misery ahead and definately lost a few nights sleep over it.

I'm like you - with some rare exceptions I have not felt anxious or depressed and I have found the utter terror of some women very confusing. I am not blaming them, of course - as you say, it is cancer! - but somehow I have been pretty calm. I had people tell me 'the main thing is to managae the depression!' but I have not felt any depression, or when I did it was related to other issues in my life and not to being a cancer patient.

I don't think it is denial. I think it is about not letting the cancer - or the cancer treatment - define you. It is about still being the person you were before diagnosis and that you are going to continue  to be. Keeping busy with life, not letting it stop for treatment. But whatever it is, I know it helped me get through operations and chemo and radiation (just finished last week) with only a few down times. My naturopath told me there are studies  which show that the less you focus on having cancer, and the more you embrace the treaments as being there to help you, the less serious your side effects tend to  be. So it can't help to be feeling calm and non-anxious.

I am sure you have some dark days in your immediate future - I did have some miserable days during chemo - and you shouldn't  beat yourself up when they happen but I really encourage you to continue as you are doing now.

I think too that it is definitely easier to have cancer yourself than to have a loved one with it. I think having to watch someone go through it would be unbearable, whereas I have found that doing it myself was not nearly as bad as the stereotypes.

Agree totally with Diana50 - I am 9 years out and have felt all the described emotions at different times.  Don't question your feelings - you sound great.  And when and if the down feeling come realize they are normal too.  You have it right - you will go thru treatment and get on with your life. 

I think everyone feels the way they feel-- and that can be up or down-although for the most part, because I had about as positive an experience as one could have with an excellent prognosis, I have in general felt very positive (check out the positive girls thread).

that said, everyone is different.  there were times during chemo when I felt sad--- and I just let myself feel that---- and it passed.  I no longer feel the cold hearted fear I felt during the time of dx and wading through treatment options.  I am fairly confident that I am cured and will go on to live a very long and full life----- but then again, I could get hit by a bus tomorrow....

all I ever had before this was this day, and that is all I still have.  I haven't lost anything.  Neither has anyone else here-- but I think feeling your feelings is the best way to handle this, whatever those feelings are.

This thread is just what I needed....I'm waiting for the dreaded results, hopefully in the next day or 2. Like many others I'm assuming the worst, but reading your messages has helped me to realize that even if I get bad news it's not the end of my world. Attitude is everything!

 nene2059 - your message really touched me. Thanks for taking the time to share your thoughts and experiences. Sounds like the worst is behind you, including the "funky chicken" mishap. Keep laughing.

Thanks to all

Maybe it's a strange disease brought on by the Sacramento air or living in proximity to camellias (or rhododendrons? - can't quite tell if that's what's behind you in your avatar pic) because I feel the same. I completed treatment (last Herceptin infusion) about a month ago.

I hate it when people post something like "everyone has a new normal after breast cancer." I just feel normal - no change from how I felt before treatment. Yes, I realize that many (or even most) have their view of themselves and life changed more by breast cancer than I did but its my nature and I think its a good way to be. I had a previous experience involving a bad man with a gun threatening to kill - there were a number of others involved and I was the least traumatized so I already knew that I was at one end of the spectrum for reacting to a life threatening situation. Actually that was more life threatening because for a time I really thought he was going to pull the trigger and he was too close to miss and I always understood that the BC was stage I and unlikely to kill me.

Mostly I have been without fear or worry through this. I did have a very sad moment when I mapped out my treatment on the calendar and realized it had started before Rosh HaShanah and  I wouldn't be done with rads until after Pesach - all those doctor's appointments and blood tests. But that was just for the disruption of my life - not long term fear for my future. And I was a little worried about the possibility of long term chemo brain when I learned about it but I decided that I needed the chemo and it would be what it would be. Fortunately, chemo brain didn't hit me. Chemo was a rough 4 months but not long term life altering.

BTW, I think your odds are better than 85%. In the BCIRG 006 study after 4 years, disease free survival was 93% of node negative women who had TCH chemo and most of the recurrences happened between year 2 and 3 so it doesn't look like the 5 year number will change much from that. The number was slightly but not statistically signicantly better with AC-TH chemo - 94%.

We are unlikely to get a recurrence but if we do, we won't have been better off for having worried about it now. I realize that not everyone can turn off that worry but if you can, that's great.

I don't think you are wierd - unusual, yes but wierd, no. And I'm glad you posted becauseI thought I was the only wierd person. ;^) It's hard not to feel wierd about it when so many people insist everyone feels differently than we do.

Just wanted to point out that cmharris had a different chemo from us. She had AC-TH, IIRC. In BCIRG 006, many side effects - even some more associated with taxanes like Taxotere, were worse in the AC-TH arm than the TCH. Chemo was really difficult at times - mainly the tiredness. At the end, I had a lot of muscle weakness in my thighs. But for me, most of the side effects went away by the time I was starting rads (about 5 weeks after my last chemo treatment).

I read parts of your blog and really identified with parts of it. Especially where you listed your doctor appointments for the week - it was quite a shock when I was use to seeing my doctor maybe once a year and my biggest previous surgery was getting my wisdom teeth out. Great writing.

Hi CoolBreeze,

I am five years out. I was much like you during diagnosis and treatment. Once treatment ended though I kind of fell in a heap. No that's a bit strong.  I became anxious.  I think when it was happening I probably in a bit a denial. I am not sure about that though, maybe I just had good coping strategies.

After treatment I went through one to two years of worrying about recurrence and having to make the best of my second chance. I had to not sweat the small stuff and really live the life I wanted.  Oh the pressure!!!  No wonder I nearly had an anxiety attack when my kids started pre-primary school. It was all over a human anatomy jigsaw puzzle and a bunch of feral five year olds (I would love to tell you more...but sniff...I just can't relive it...I'd rather do more chemo.)  Now I am back to saving for retirement (hey - how positive is that?) and getting pissed off when people cut me off in traffic.  "Yes I know life is short - but you're still an a***hole!!"

Actually I was on holidays when I got my positive biopsy result and it was going to be two weeks before I flew home to see my doctor and find out what was going on.  I was actually angry at my husband for being upset, he was spoiling my holiday. LOL

Take care,

Sandy

Hi Coolbreeze,

My post is immediately before yours so I have to say I didn't mean to imply that you would come crashing down at some point.  I was just sharing my story and unfortunatley in my story I did become anxious after treatment stopped.  A lot of that was focussed around my kids who were four at the time.  I am probably being a worrywart but I just wanted to clarify that.

When I was diagnosed I never felt like saying "Why me?", it was more of a case of "Why not me?"  Also when I was on holidays I just wanted my time to be happy as I knew I couldn't do anything about my diagnosis until I got back and saw my doctors.  My poor husband was so upset and I was SO mean to him for spoiling my holiday!!

Take care,

Sandy

Hi Everyone,

This is an interesting thread.  Thanks for starting it.  I am definately different after being treated with BC.  I have Type 1 diabetic sons and have spent the last 35 years concerned about their health.  It never dawned on me that my health could be in question.  I was shocked as I always said that at 58 I was really healthy.  Now I know how important it is to treasure myself and do what I need to keep myself healthy.  I'm not neurotic about it but I am very conscious of it.  I plan to live to be 100 and die peacefully in my sleep after years of healthy living.

I see my BC diagnosis as a wake-up call rather than a death sentence.  I am happier now than before my diagnosis even with all I had to go through to get here.  The fear during the diagnosis time was terrible but once I got through that I knew I would survive.  That's easier to say because I am Stage 1.  I can't say how I would feel at Stage IV.  I hope I would come to terms with it as a chronic disease and live long and well but only those who go through that can know for sure.

That said, there are no guarantees in life.  My goal every day is to live it to the fullest with no regrets.  Today I will fill with holiday shopping!  I hope my wallet survives. LOL.

Roseann

Coolbreeze,

I just sat down and read your thread in the last 15 minutes. When I got to your most recent post about finding a job you like at 51, I had to write. I have the same exact attitude as you (this won't kill me, and I can handle it, etc.) and I just left a boring job with one of the country's best technology companies. And, althought the economy sucks, it will work out. I'll spare you all the gory details, but one thing I think I've learned from my experience with bc (at 55), is that life is too short to hate your job.  I, too, had a long commute and a boring job.  It just wasn't worth it.  We survived bc, we can survive a little unemployment!  Best of luck to you! Keep up the great 'tude!

sue

It has been almost 2 years since my dx, and I can't say I've not been worried at all.  But I think once the process of dx and tx began, I just felt like all I could do was put on battle armor and walk out onto the field.  I mean, what could be gained by melting into a heap on the floor, or spending my waking hours whimpering and feeling sorry for myself? 

Pity from other people has never made me feel any better or stronger -- all it does is make me question whether I'll be okay and second-guess my ability to handle things.  So, once I confirmed that my far-away relatives would be launching an all-out pity party, I told them I did not want those phone calls that started out with a syrupy voice asking, "Sooooo.... how are you?  I mean, really -- tell me -- are you okay?" ... as if they were already convinced I was going to die and were waiting for the moment they could start divvying up my belongings.  I knew I was not going to die -- at least, not during treatment.  I knew I could get through it and make it to the other side.  So, mostly they didn't call me at all.  (Turns out, they were p*ssed off at me because I had "muzzled" them.  Sheesh.  Who would think the wishes of the cancer-person might actually be worth considering?)

I did have a few moments when I felt myself slipping into that black hole of doom.  Mostly it was because I was so d*mned angry that this had happened.  I wasn't questioning why it was happening to me.  I was angry that it had happened at all.  My dh and I had just retired from our decades-long careers, after equally long decades of education to prepare for those careers.  We were looking forward to decades of fun and relaxation and doing all the things we liked to do together ... and now this ruined our plans.  Could I even make any plans, anymore?

Those moments came and went during the post-dx, post-surgery, and mid-chemo phases.  Mostly there wasn't time to dwell on the gloomy stuff, because every few days (or weeks), there would be another battle looming.  I guess I really did get through this thinking about it as a battle I was waging.  I had to identify the problem (Mast or lump?  SE's of rads?  Is an SNB reliable? Recon now, later, or never?  Where are those #!&!! Oncotype results?  Will a wig be too itchy?  Why are my feet peeling?), investigate the issues, come up with (or understand) the options, and devise (or accept) a plan.  And I had to steel myself to the effects -- seeing the surgical incision, handling the drains, understanding the testing, accepting the not-so-good lab results, sitting down in that chemo chair, managing the loss of eyebrows & lashes (who says it's not about the hair???) ...

But, worry?  Who, me???   Of course I worried, some.  Actually, I worried quite a bit, but not about the important things.  I worried that we would get caught in traffic on the 2-hour drive to the cancer center and be late for my appts. (we weren't).  I worried that the venipuncture site in my arm (from the morning blood draw) would start to bleed when the chemo nurse put the tourniquet on for my afternoon chemo session (it didn't).  I worried that I would have an acute (mid-infusion) reaction to Taxotere (I didn't).  I worried that my susceptibility to motion sickness meant I would get sick as a dog from chemo (I wasn't ever sick).  I worried that my 2-year-old granddaughter would be scared when she saw my bald head (hah--no problem there!  She rubbed it, grinned, and went on with life).  I worried that my husband was worrying and not telling me.

Wait.  That last one was important.  I think the thing that bothered me the most was how other people were handling my dx and tx.  Some people -- the ones with the pity they desperately wanted to lavish on me -- I could do nothing about; so I tried to avoid them.  My greatest concern was my dh, who started out much more optimistic and upbeat than even I was.  He was stunned to learn that my recurrence risk was not zero (or near zero) after chemo, much less after mastectomy alone.  He just didn't realize this stuff was not necessarily "cured" with today's medicine.  We hugged, and cried a little; then we acknowledged that, whatever might happen months or years from now, we had to move on with our lives.

So, here I am, nearly 2 years out from dx and 18 months post-chemo.  I do not feel like I had cancer.  Some days, I doubt it actually happened.  I think I watched it in a movie -- we get Netflix, and I keep forgetting which ones I've seen.

I do get to visit with some really nice doctors every few months (6 month intervals now), and they ask all sorts of questions and check me over thoroughly.  Then they pat me on the back, tell me I'm doing "Grrrrreat!" (say that like Tony the Tiger does), and send me on my way.  Unfortunately, my cancer center sets up appointments as long as one year in advance, so I already know when next year's visits will be.  But, that's okay.  So far, so good... And, I'm really not worried. Usually, anyway.

otter 

Otter,

I think you said it very well.

When I was 1st dx'd, I remember some people at the coffee shop talking, and they were saying to my dh, 'she has to stay positive!'  Well, yes, that is true...  but I don't think anyone can be POSITIVE ALL the time...  I remember thinking "I'm a goner!", so yeah, I had my moments, especially right after I was dx'd.  

The worst part for me was all the decisions I had to make.  I took a long time deciding some of my treatment options, and I even got an Oncotype test done, which ended up in that 'gray' area, so no help there...  In the end, I decided to get the most aggressive treatment I could, because as you said, Otter, I felt I was putting on armor to fight this beast...   My family didn't understand why I would get such aggressive treatment, for such a 'small' cancer...   But I did what I thought was best, after much thought.   Oh, and my family stopped calling.  This bothered me.

My treatment went well.  Some people, friends and neighbors, would see me walking in the neighborhood, and everyone kept saying how I looked so good, and I seemed to be doing very well.   The day after my bilateral mast., when I got home from the hospital, I went for a walk... drains and all.  And, Otter, I had worried, too about things that never happened...  I worried I'd be very sick from the chemo, I worried that I'd end up in the hospital from the chemo, but I didn't get sick, and I didn't end up in the hospital. 

I'll be 3 years out from dx on March 15th 2010.   I feel pretty good; I also have those kind of appts. with my drs.  When I saw my onc a couple of weeks ago, I even hugged him... something I would NEVER have thought would happen.   I don't get scans, and at first, that bothered me.  But I think I would probably feel so anxious, waiting for results. 

But, for me, it IS a new normal, because there are always so many things to think about...  reading labels at the store, to be sure nothing has soy in it, thinking about switching from Tamoxifen to an AI... there always seems to be some kind of decision I have to make, because I want to do everything I can to make sure this bc monster doesn't come back.  I don't know if I would have the strength to fight him again!! 

Harley