Stage III and Terrified

clairebear

Stage III and Terrified

clairebear

Hello everyone -- This is my first post -- I am looking for some reassurance from those of you who are further in your journey.  I just completed 9 months of treatment on New Year's Eve.  8 chemo, bi-lateral mx TRAM flap and 33 rads.  Before surgery in Sept. '09, my onc. said I was likely Stage II, but would know after surgery.  With all that was going on with surgery recovery and then rads, I did not ask my stage until this week at my scheduled appointment. When she told me Stage III "localized advanced cancer" I was shocked.  I know that sounds crazy after all the treatment, etc., but to hear it really rattled me.  My onc. says they do not like to focus on stage due to all of the advances in customized treatment.  I think their policy is not to tell unless asked.  And she said my "biology" was very good and that is what is important. The neojuvant chemo did its job and my surgery was successful.  But ever since that appointment a few days ago, I have been frozen with fear about the cancer surfacing somewhere else.  I was really excited for the new year to begin so I can move forward and put all this behind me, but I am having trouble getting past all the worry. Up until now, I have been upbeat most of the time. Now I want to focus now on nutrition and fitness, but am not sure where to start.  I just started tamox. on Jan. 1.  I have a young daughter and am planning to go back to work next month after 6 months on disability leave. I really want to get back to some level of normalcy and learn to live with this, but can't see my way clear yet.  Can you share any words of wisdom?  

-- Claire

Let-It-Be

Claire, welcome, but as has been mentioned on many first posts, sorry you've joined the club!

I was also frozen with fear post treatment. Upbeat during treatment then somehow awareness caught up with me at my path report after surgery.  Do whatever makes you feel empowered.  I spent the entire month of July just gathering information on diet, exercise, prevention. 

There are many good books out there that will make you feel like you have a grip on what you are eating.  Just knowing what certain foods can do to help with prevention is a wonderful thing!  You will come down from the fear ledge.  Now it's something I move through everyday, but I get through it.  Come here often, participate in the fitness thread.  There is also a Natural Girls forum and there is a plethora of info. with regards to complementary medicine.  I see a naturopath as well.  Also, read through a thread called "success stories" in the "Inspiring Stories" forum.  This will help you to realize that you do have a very good chance to watch your child grow up and then some!

Many of us have also had zometa for bone mets prevention.  I am in the process of getting mine.  Ask your onc about this as a possibility.

 You can PM me if you need any advice.  Hang tough!!

Christine

KerryMac

Claire - just remember - Your Cancer doesn't know what stage it is. It will come back or not - regardless of what "label" is put on it. Nothing has changed at all, just your perception. Your Onc seems encouraging, there is no reason for you not to be hopeful too.

Focus on the fact that you have medically done everything in your power to stop it coming back. Do what you can yourself, with regular exercise and diet; take your tamox every day.

Come here as often as you need to for support and advice - one "good" thing about being Stage 3 is that the Stage 3 girls rock!  We will all be here for you.

SusieMTN

Claire - I can certainly relate to where you are sitting at this moment.  I also was there several months back and for me time helped.  Time and a survivorship program and reading the Cure Magazine on Survivorship which is free to cancer patients (and their care givers.....) you can find them on the web. 

YOU ARE A SURVIVOR!  Fear does go along with that unfortunately!  You know you, that said do you think reading up on this stage of the game would help?  For me it did!  Being a survivor can feel like being in "limbo" at times, your are no longer on treatment but have had cancer.......

I also, after I read the Cure Mag Survivor supplement, decided I needed to handle "Survivorship" like I handled treatment, sort of a "just tell me what I need to do" .....  Focus on eating, exercising, taking care of "you", read more about Survivorship.

Not sure if this will help, feel free to PM me, and I am sure you will get others opinion also.  Lots of GREAT help here by those that have been thru it!  

Big Hug to you!

 

apple

gosh Claire..

i'm very late stage 3... really I could be classified as Stage IV or would have been a few years back.

I did chemo twice.. (once again after the chemo, surgery, rads routine).  I'm NED and feel great.  I sure hope it lasts.  For some reason, I am totally ok with my diagnosis.  Even If it resurfaces I feel like I will have many more years.  My stage IV girlfriend is still up and at 'em.. 12years later.  She was diagnosed stage IV at her cancer discovery and is still an active soccer mom.

lots of exercise, water, a good diet with lots of vegetables and fruits.. easy on the fats.  I take vitamin D, fish oil and the omg awful Femara which actually is quite doable.

the way I see it, cancer is a disability, but in comparison to the crosses other people bear as they pass thru life not really challenging... i guess i just assume I'm going to live quite a while..  It is important to be happy and positive.

good luck to you.

lovemyfamilysomuch

Dear Claire,  you have been through so much!  No words of wisdom from me, but sending you lots and lots of suppport and love!! xo

diana50

dear claire

we are here for you; as kerry said the stage III girls rock**  what helped me was i knew i got great treatment and i trust my doctor. give your self some time to "heal" physically, emotionally and psychologically.  you have been through a "war" and you are now on the other side. if you can take one day at a time and not get too far ahead of yourself and avoid the :"what if" thoughts..stay focused on the here and now....that may help you put some of your fears and anxiety behind you.

hang in there claire. you can do this** and you have lots of people here who have your back**

diana50

Annie62

HI Claire,

Great advice from these ladies. I recommend you search this Stage III forum and look for postings with headlines of 5 years out. Recently a number of us have reached our 5 year  mark. Reading those threads may help.

 Annie

yellowfarmhouse

HI Claire,

You'll see that my dx was super similar to yours except Her 2 positive.  I got through my first 9-12 months of treatment OK too and then the fear started to set in and  felt so shaky and not knowing how to proceed.  I didn't know what to do next with my life-- if I should work, stay home with the kids, do a clinical trial, meds, fitness and diet stuff etc..... Seemed like while I was in treatment I had a plan.  And then after that was over had to make a plan.  I ended up going back to work part time, moving our family to a different home, trying to eat better and exercise, got to know other ladies in my area with breast CA for an informal support group etc... I think one helpful thing was attending a retreat to give myself some time to process the whole experience. 

by the way.... I'm  coming up on 5 yrs since dx... so thankful.... praying for all my friends here every day....

My youngest daughter ( adopted from China) is named Claire-- love the name.... Clear and bright! 

Come anytime to post/rant/question/ -- I still come here daily.

blessings,

Wendy

Anonymous

Claire:  Did your onc doc ever explain what led her to believe you were Stage 3, and not Stage 2?  It's good that she said don't focus on stages and if you notice, depending on the cancer sites you look up on the net, definitions of stages can vary.  I am most terrified of what the present technology does not see, i.e., PET and MRI scans.  Please all Stage 3 or anyone else out there, be an advocate for better testing so we know what we're dealt right up front.   I went from a Stage1 to a 3 after surgery, due to ineffective results on the pre-surgery testing. I'm planning on doing just fine and you will too.  Hang in there! 

weesa

claire, my pathology was very similar to yours, and I am fine now except for being a little neurotic about my past breast cancer. More than seven years ago. We will all go on this journey with you--granted not a journey you ever wanted to go on--with you. You will discover it does have some good moments.

DCMom

Claire- I am so sorry you have to be in this gang, but I've decided we are making LONG TERM friends here.  You won't find a better place for support.  Our diagnoses are very similar although my was classified IDC (Invasive Ductal Carcinoma) not sure of the difference to locally advanced, but our stats are very similar.  January 17th makes 2 years for me.  My hair reaches my shoulders again (while wet without curls), I am exercising regularly, back into volunteering with my kids (and carpooling, and homeworking, and , and, and), finishing my Masters in Elementary Education and will be student teaching this year.  In other words I am back to normal.  Yes I still panic over every ache, but I am better and better at being realistic about whether it is something to worry about.

That stage III diagnosis sent me over the edge as well.  I was ok with stage II because that was clearly early stage, but oh my gosh stage III?  Well since then I have discovered that staging has changed over the years so it is not exact, stage 3A is actually still lumped with early stage breast cancer in most studies, and we stage 3er's come out of chemo and surgery CANCER FREE.  Meaning it has to come back we don't have it now any more than someone with stage 1.  I'm banking on it never returning, not competely fearlessly, but I am planning.

I am actually proud to be linked with such a great group of ladies as are online here.  Take advantage of their sage advice.  This is my support and I don't know what I would have done without them.  Oh and start exercising with us...it really is a great motivator to stay active and get out and move. 

helena67

Can't add much more to all this great advice already. I think what you are feeling is VERY normal. I feel worried still too - but less so than in the beginning. It's a process, not unlike grieving... 

As you can see, there are quite a few of us with a fairly advanced stage and doing well.  - I believe your oncologist got it right. The stage thing is less important nowaways. Once you get busy with other things (family, friends, work, hobbies), you will gradually feel better and more confident.

It may also be good to request another meeting with the oncologist (assuming you like her) and try and talk through your fears. Sometimes, a little repetitive "yes, you are likely going to be fine, even long term" may just do the trick....

Take care,

-Helena.

alexandra_CURE

SusieMTN - Thanks for pointing out CURE and the survivorship information we have to offer!

The survivorship guide can be found in its entirety here: http://www.curetoday.com/index.cfm/fuseaction/magazine.show/id/3/magazine_id/37.

Claire I hope what CURE has to offer will help you to feel confident and know everything you are experiencing is completely normal. If you would like me to send you a care package with some magazines and a cancer resource guide please let me know!

-Alexandra @ CURE magazine

jenn3

I remember being told I was more than likely Stage II, but surgery would confirm the stage.  Once I was out of surgery and told it was Stage III it seemed so much worse in my mind.  However, like the others have said with the new staging and treatments our chances are as good as if we had been diagnosed with Stage I.  I don't want to repeat what the others have said - they have great words of wisdom and experience.  

Also, I just went back Monday after being out 6 months and while driving home the first thought that came to mind was "this feels so normal".   I am going in half days for the first week and will push it a few more hours next week, then hope to be back to full time soon.  The normalcy of it all has been wonderful these last few days and talking to people about something other than me or "the cancer" is such a relief!!!!

I know this isn't where you want to be, but Welcome.......  I have found a tremendous amout of support here and am sure you will too.   

YATCOMW

Claire....

Your doctor is right.....you have good biology......run with that!

It is certainly daunting to hear the words but just stay on this board and you will see many, many women hitting five years and beyond.  Every month someone is jumping on and giving us all hope that we will hit 5-6-7-8 years and beyond......it really helps take the edge off the "locally advanced" wording.

It is hard to believe but in a few more months I will be hitting 6 years.....and this was with a huge tumor (8cm)....and at least 17 nodes positive.....

There is hope on this board....tons of it.....and these ladies here are rock stars.

Jacqueline 

Anonymous

Welcome to the stage 3ers Club that none of us wanted to join.  Like you I was told at first I was stage IIb, after my mastectomy.  But the following week I had to go back for more surgery to take out 17 lymph nodes because the sentinal node cultured out with positive cells, so one more node was positive for cancer cells.  That brought me to stage IIIa.  This diagnosis is scary but the more I've thought about it is that I've come to learn that many with lower stages have found themselves with mets.  So, breast cancer, no matter what the stage is just so terrifying because you are left always wondering if it's going to come back again with a vengeance.  This group of women here at stage III is a wonderful group.  They are all awesome.  Stay close.

Mom3

Hi Claire, we all understand what you're feeling. I have a 3 and 5 year old, when I was diagnosed my son was just 1 and my daughter was 3. I cried for weeks thinking that if cancer returned I'd never see them grow up, but then one day I woke up and realized that I was wasting precious time thinking of the what if's. I thought, what if it doesn't come back? I will have spent all this time just thinking of negative thoughts. From that moment I decided to move forward and not look back. Here I am, 2 years out and I continue to look forward, never look back and fight, fight, fight. You can do it Claire!! You've come so far already. Stand strong and know that you have a lot to live for!!

Leah_S

I can only echo what everyone has said about the fear that comes when treatment ends - it's normal, and it might be the first time since you started on this rollercoaster called bc treatment that you've had time to catch your breath and think about what's been happening.

I had a tumor that was 1.6cm, grade 3, 6 nodes involved. According to some sites that's stage IIb, according to others it's IIIa. I haven't asked my onc how he stages me because I don't want to know. The truth is, it was an aggressive cancer that I treated aggressively. No matter how it's staged, the treatment was right for the disease I had. As you see from my signature line I call myself stage II but that's really because I feel better doing so.

In truth, it's a number, nothing more than that. You did everything you could to get rid of this beast, and that's what counts.

Leah

lkc

Hi Claire,

Gret advice from out stage III ladies. I was dxed May 05 Stage IIIC , relatively small tumor , but 12 pos nodes, Shook me to the core.

Now I am fine, and you will be too. take good care of yourself. the iniyial days are hardest. Once you have a tx plan in place , you will feel more empowered. Don't google, lots of oudated stats out here. Eat well, rest, suround yourself with ONLY positive people. With confidence in your medical team and yourself ,you will get through this. As you see you have lots of company. we will help you.

God Bless.

Flamin_nora

Hi Claire

 was also in a "scared and confused" frame of mind not too long ago......what was helpful to me was to try to control the "inner voice".  so I made sure that every day (usually before naptime and bedtime) I take a few minutes to systematically review all the reasons why my health is now under control (surgery removed tumour, chemo, radiation, tamox all inhibit other tumours from starting, I'm eating very well, exercicing, etc...)...Personally, for me, it was important to have this type of discipline in my mind so I could keep a handle on things....also, I believe for me that healing my mind is going to contribute to healing body....

I find you brave starting back to work so soon after rads and starting tamoxifen...I personally ended up "crashing" about 2 weeks after my rads finished (no energy and a bit depressed).  It's been 2 months now and I am starting to envision going back to work in about 6 weeks from now...but of course we all need to listen to our own bodies...

Gitane

Hi Claire,

There is so much great advice here, I couldn't add more or do better.  Here I am, 4+ years out from my diagnosis.  Each day it gets a little easier to move past the worry and live the life I want to live.  There are times I feel confident and times I don't, it changes and that's so normal.  Each of us finds our path, and for each of us it's a little different.  Exercise and nutrition are good ways to take back some control and start to heal.  Wishing you well.  You've found a fantastic spot to make friends and get/give support.  Welcome!

Annaanne

Hi Claire:

I'm another stage 3er (after neo adjuvant chemo!), with BAD biology and knarly prognostic factors.  But that was almost 5 years ago  and I'm totally well.  No big life style changes except taking lots of Vitamin D.  Before bc, I worked out, worked hard, raised kids, traveled, and I'm still doing all those things.  Time will restore your confidence, and --gradually -- dissolve your fear.

Annaanne 

Bugs

Claire,

I don't have much more to add to what these wonderful ladies have said.  Just wanted to pop in and welcome you to our stage III board.  Not that you wanted to join..but we are pretty awesome!  Come here often..we get it.

Bugs

clariceak

Claire

It is a shock to realize you're stage 3 and all that it implies.  I made the mistake of reading my pathology report when I was headed home the the plane.

The wonderful women on this board helped me accept the diagnosis with their support and words of wisdom.  One thing to remember is your cancer was treated  aggressively from the start.  In some ways I think it might be harder to be a lower stage and have to decide whether to have chemo and at what strength. 

caaclark

Hi Claire,

Great advice from all the women here.  The same thing happened with me.  I thought I was stage IIB all along.  I knew from researching that I was probably a IIIA but all my reports showed stage II.  I finally got the courage to ask one of my docs and he said, "you were a stage IIIA".  The key word in that sentence is the word, "were".  My husband told me after treatment that I really should consider myself a zero since surgery, chemo, rads, tamox, hysterectomy and femara have hopefully done their jobs. I'm goin' with that.

I remember being very fearful after the doc confirmed what I already knew-I mean, wouldn't we all rather be stage II instead of stage III.  You know how it is...we look at people who are a lesser stage and we think, "wow! they are so lucky".  But, I really think that stage does not matter as much as we think it does.  There are tons of stage IIIers who will never have to deal with a recurrence.  On Jan. 22nd I will mark 4 years since diagnosis.  I NEVER thought I would be here.   Do I still feel fearful? Sometimes.  But the fear is managable and does not consume my life like it used to.  The best thing I did for myself was to find a great counselor who helped me with that.  I was at a point where the fear was impeding my daily life-although no one knew that because I was fantastic at hiding it from most people.  But internally I was a mess.  Counseling helped within just a couple sessions.  I thought I needed medication to help control the anxiety I was feeling but as it turned out I really only needed to speak to a good counselor who specialized in cancer patients.

pip57

Hi Claire,

I think most of us stage IIIers started out thinking we were earlier stages.  All was good for me having DCIS.  Whoops, biopsy shows IDC but caught it good and early.  Oh dear, surgery didn't get clean margins and a lot more positive nodes than we expected.  Yikes, your remaining breast was full of IDC and DCIS.  Yep.  At every step the news just got worse. And here I am. 

 But there are positives to being stage III.  They throw everything at you.  There is no big gut wrenching decisions about doing rad, hormonal therapy etc.  You just do it.  Well, most of us do.

And then there is the bonus of not having regularly scheduled scans and tests.  For most of us anyways.  We just ride the river Denile until we are symptomatic.  No fretting about results on an annual basis and then wondering if they just missed something that we will have to wait another year to check out.  

Check in when those fears and doubts start haunting you.  We have all been there  and will be here to talk you through. 

SusieMTN

" prettyinpink100 But there are positives to being stage III. They throw everything at you. There is no big gut wrenching decisions about doing rad, hormonal therapy etc. You just do it." 

Thanks for saying that, very true, and is a positive way of viewing stage III.   Yes, you do just 'DO IT" and yes they do "throw everything at you"  So thanks again for pointing out the positive when we deal with so much ! 

Susie

KerryMac

AND we ask for more! Who else would do that??

Diana63

Welcome to the best group of ladies you will ever meet, I am 2 years out and I still have my moments. Just keep going and take your life back, these ladies will pull you through the dark times.