It's catching up with me now.

dj59

Ok, so I was diagnosed on 3/22. IDC, Stage IIa, cell grade 3, 0/2 nodes, HR+/PR+, HER2-  Margins were a bit on the narrow side (1mm) RO was not very happy about them. 

I handled it like a champ when I was told. Even was able to make some silly joke about it all. 

Now...waiting to see the MO this afternoon. This is the doc I have had since my first diagnosis in 1999. I know him, and trust him. I know he will do what's best for me. He will have oncotype results etc....

I am guessing chemo, rads followed by arimidex.  I dread the chemo part...I haven't thought about it until this weekend. But it was hell and I dread it. The smell, the way it makes you feel, the hair debacle, everything...it is hideous. No two ways about it. 

I guess there is a possibility that my onoctype result will come back on the low end and maybe I will get to avoid the chemo...but this cancer is different from the first time. First time was Stage 1 DCIS mixed with some evidence of IDC. I was 40 at the time, so the doc blasted me with all the ammo he could, to be sure he gave me optimal results...I got 12 years between bouts...guess that's optimal. 

I have continued with life since 3/22. I speak frankly about it with anyone who wants to know, avoid it with anyone who doesn't want to know. But, I realize that the anxiety is starting to well up.

I have a full time job that stresses me out in the best of times...I don't know how I will do it if I am dealing with side effects of chemo. I had begun putting out feelers for other jobs...now I feel like I am trapped because of what I am about to deal with, which just makes all of the anxiety worse.

I know I will have answers this afternoon and that will at least give me specifics about what's next...but I dread those answers.

Thanks for listening.

Anonymous

We can wait together. A week ago I went to my BS and she found 2 lumps. She ordered a mammo and ultrasound. I had a biopsy last Tuesday. I am still waiting for my results. I was clean from cancer for two years+ and now have the sick feeling in the stomach that I am about to go through it again.

(((HUGS)))

dj59

Oh Veggy....will be thinking about you today!! (((HUGS))) TO YOU TOO....

xo

CatFromFL

Hugs to you both.... we csn wait together. I was first dx in April 2006 (R Breast IDC Stage 2A ER+/PR+ ,HER2-, Lump/Rads, OncotypeDx Score of 0 Tamoxifen.Fast forward March 3 2012- new Primary Left Breast IDC Stage 2, Er+/PR+,HER2-, Surgery scheduled for April18 Lump and sentinel node biopsy planned. Mammastrat test planned. Chose Lumpectomy after discussions with 4 MDs. No higher rates in recurrence in my case...Lump vs Mx. This time had PET, Breast MRIs and Pelvic Ultrasound.....I feel like I have been poked and prodded and stuck more times in the last month than anyone should. Then in the midst of it my 3.5 lb 2 year old dog had teeth pulled and they accidentally broke her jaw, prior to my diagnosis my husbands dad was dx with dementia and his ex wife was dx with stage 4 breast cancer ( she lives in another state).... We can not take much more stress. My best friend has been great...a rea trouper. My husband is on the hairy edge of sanity. We are hoping for a calm restful weekend prior to this next week

So I can totally identify with you...........It's catching up with me NOW!

dj59

Cat,

So sorry. Yes...as it all piles up, it gets tougher and tougher to "stay positive" and patient and stoic about it all. My hubby just keeps saying, "take it one step at a time, don't bite off big chunks..." I am trying like hell...keep thinking about that movie "What About Bob"...baby steps...baby steps....at least I have a giggle for a minute thinking of Bill Murray and his stupid antics in that movie ; )

I met with my MO last week and was disappointed to find that my oncotype dx score was 32 with a 22% chance of recurrence in the next 10 years. Knowing that I have already broken stupid statistics, I have opted to start chemo this Thursday (4/19) as well as consider the BRCA1 and BRCA2 test. as there seems to be more evidence that this may be a genetic thing...my mother has had it twice, my aunt has had it, my other aunt died of another cancer, I have had it twice. If we find that I am positive (for the BRCA2 he thinks) then I will consider a BMX and possible ovary removal...my daughter will have a 50/50 chance of having the gene, so at that point, she will need to consider her options as well. 

This cancer nightmare just doesn't stop.

Sending lots of love your way ladies. We are in this together.

xo

elmwood

New to the forum.  Just diagnosed with recurrence- same breast.  Waiting to get an appointment with a breast surgeon/oncologist who will no doubt order many more tests.  What am I up against?

Im so nervous.'

elmwood

dj59

Elmwood, Gosh so sorry to hear you are back in the boat with us. So what have they done so far for you? You had a biopsy? You have results of that? So you know a little about what you are dealing with, I am guessing. Your next appointment, would be to decide on next steps. 

My experience thus far: biopsy, lumpectomy, tissue sent for oncotype dx which helped determine our next step which is chemo - First tx of T/C  this past Thursday. So far feeling pretty well.

With this being a 2nd primary for me, my mom having two primaries, my aunt having it as well..they are now looking at BRCA 1 & 2 testing. I meet with a genetic counselor on the 30th. At that point we will see where we are with that which will determine next steps after Chemo. My oncotype was on the high risk end at 32 with a 22% chance of distant recurrence...don't like those odds, so once we have results of genetics..may decide to have a BMX  + Ovary removal to give myself a better chance of not going through this mess again. Never any guarantees of course...but doing what I feel needs to be done.

I know you are nervous. You are among like minds here. You will find fantastic advice and have a few giggles and really...just get a little comfort here.  If you have questions...ask...someone, many, will have thoughts for you.We all have slightly different experiences, but, what is great about this forum is that you are getting actual experiences from women going through treatment (a few men as well). We all react differently to the drugs, so don't panic if you see something scary. Just be aware and ask ask ask...you know that!

How long ago was your first round with bc??

Ok...We are totally here for you elmwood. 

Sending love and good vibes your way.

xxoo

Dorrie

elmwood

Hi DJ59

It took me forever to lean how to do this forum.  I am so new at the computer scene but am learning because I desperately need some comfort from those of us who are in the same boat.

I had cancer in 1998 with lumpectomy and rads- no chemo.  Clear for 14 years and now they found this malignancy -found out yesterday.  It is a recurrence and I am so scared after what I am reading.

How do i know what to expect?  Fear has consumed me and I am making my family crazy.  I need a cat scan    pet scan and who knows what.   I have to call for an appt tomorrow because I found out Saturday-  Any advise would be great and thank you for answering-  Elmwood

dj59

Elmwood. Good for you for attempting the computer scene. Oh technology! It is a good way to connect with others.

You will find some comfort here. Just remember, you may also find things that could frighten you. Keep in mind that each situation is different Elmwood. You went 14 years between bouts, that's gotta count for something!  If they did a lumpectomy and rads only, my guess is you were pretty early stage? How old were you at the time?

All you know at this point is that you have a malignancy?  You don't know the details etc yet? Take it one step at a time. Call tomorrow and get things set up as quickly as possible and then take some deep breaths. Do you know anything at all about what they have found?  You know what you know because they did a needle biopsy or ultrasound or mammo or all? 

First you want to find out what you are dealing with...what are its characteristics,  (size, cell grade, Hormone response + or -, HER2+ or-)  TAKE SOMEONE WITH YOU!!  So much better to have someone to join you in the quest for information - a husband, friend, sister, aunt, daughter...someone who can ask questions and take notes for you since you may be out of sorts about it all.

And....take one step at a time Elmwood. It really is all you can do. The whole thing is so overwhelming and going through it a second time just blows everything out of the water....but, take it one step at a time. 

Easier said than done. BUT - remember...you got through it once and you were clear for 14 years. Have faith that this will be another winnable war! 

I hope this helps. 

Dorrie

elmwood

Hi DJ59

I am getting better at this computer ... Thanks so much for answering me in my time of need.

From what I hear,  I need a mastectomy since it is a recurrence.  I don't know if it spread and if it did what can expect.  I am so scared.  I had mammo 2x  utlrasound and core biopsy malignant.  I have to set up appts and am not sure where to begin..  I have breast surgeons phone numbers and will take it from there.   I hope I don't have to wait weeks.  My new lump is 2cm.  I am er negative, which I heard it not good.  Is it?   Is there hope for me- I don't know.. Can't sleep and feel sick so I have to change my attitude.   AgainDJ thank you so much.  you are a comfort.

elmwood.    PS   what I read on the computer really scares me.

elmwood

DJ59    I am 69 years old.  First lumpectomy at 55

elmwood

dj59

Ok....you had rads last time, so they cannot use that tactic again on same breast, which is why they are telling you mastectomy.  Negative means it does not respond to hormones the way it would if it were positive, but at 2cm...there is a good chance that this is caught very early again and will be very treatable.

I am sure they won't make you wait weeks. 

 Of course there is hope! It's ok to feel upset. You will feel better once you get some more answers. 

Do you have someone who can go with you to appointments? Take someone with you - really will make a difference.  

Do something nice for yourself this evening. Watch a movie you like or read a book or chat with a friend. Get your mind off of it...Or talk it out with someone who is willing to let you do so. Saying things out loud eases the stress a bit. 

So here is my mother's story...she had been diagnosed at 59 - had lumpectomy, rads and tamox. Went 16 years cancer free. Was diagnosed with a new primary in the left breast just 2 years ago at age 75. Lumpectomy, rads, tamox again (hers was ER positive both times) ....2 years out. She is doing just fine again.

We are right here for you as you go through this Elmwood! 

 Sending love and reassuring thoughts your way.

xo

Dorrie

elmwood

Thank you Dorrie

I couldn't locate our forum.  It took me an hour to find you.  I am learning this computer .I don't know how to get to everyone I spoke to but I will practice tomorrow.

I have a wonderful husband who doesnt belive I will be sick and fatal.  He is my rock and I hate to take him to the doctorswith me to break his spirits.  He is not knowledgable about my condition.  He would be so scared.

I too am scared of chemo - don't care about mastectomy at all-- like everyone of us,  I am willing to do anything to live a normal life.

I am now reading my book- good advice

Elmwood

Faith316

Just a quick comment to those of you who originally had BC in 1998 and 1999 and now have a recurrence.  Lots has changed in the past 13 years on the chemo scene.  Lots of new drugs and lots of anti-nausea drugs that are much better than back 13 years ago.  One in particular that has helped SO many women is called Emend.  Ask your doctor about it.  I have also had BC twice.  First dx with IDC and DCIS in 2008 and then dx with IBC in 2009.  I've been on so many different chemos and have never once thrown up.  I have also now been in remission for 2-1/2 years thanks to these wonderful drugs.

Good luck to you all.

elmwood

Thank you Faith

That is encouraging.  I am writing everything down so I am prepared.  I wish I could fast forward so I can begin to heal.  I'll keep you posted/

Elmwood

dj59

I agree with Faith. They have come so far since 1999. I am on day 5 after chemo #1 and feeling pretty well. A bit achy from the neulasta, but it is manageable (did take the Claritin that was recommended) .... But, have not had nausea from T/C.

Elmwood, as soon as you know, more clearly what you are dealing with, you will feel just a bit better. You will be able to formulate a plan of action!

 Take care and good luck. Keep us posted.

Dorrie

elmwood

Hi Faith

Don't think I am crazy but I am thinking of not going through with this.   I am shaking and sick for a week.   I don't know if I can face anything they tell me.  I think I am having a breakdown.  I want to go to a hospital for my nerves.  My body aches.  Please help me.  I am a very weak person.

elmwood

elmwood

Hi DJ and Faith

Forgive my last email.  I had a bad night.   I feel always better when I hear from all of you who understand my fears.  I will try not to be negative but move forward with what they tell me to do.

I hope I didn't upset anyone.   I'm sorry just scared.

Elmwood

elmwood

Hi to both of you.    They set me up for an appointment this Wednesday late afternoon.  I have to get all my reports etc so I am kept busy..running from hospital to hospital to gather films and everything else they requested.  I am glad I don't have to wait another week but I am sure I should also get another opinion unless I really like this doctor.  What do you think?  I'm so anxious not to delay but don't want to make a mistake either.

Thank you  thank you everyone for understanding my fears and anxiety.  No one understands like the ones who went through it.

Elmwood

greenacres

Faith if right EMEND the antinausea drug is WONDERFUL - I never threw up once during all six treatments.  Best of luck to you! 

dj59

Elmwood, there is not a one among us here, who hasn't had moments of feeling like we want to bolt. It is overwhelming and, once committed to the plan, it's a long road. You are allowed moments.

Got your appointments set up!! Excellent. So much better to know what you must deal with. If you don't like the doc or have any questions about what you hear, always think about getting another opinion...it's YOUR body!! You want to do what's right for you!!

 I had a few moments of my own earlier today...my beautiful hubby talked me down. Coming off the 3 days of steroids made me extrememly crabby today.

I also had an unsettling conversation with my 77 year old mother who seems to think I am being over medicated and shouldn't bother with the Neulasta...I told her, would she prefer I get sick and land in the hospitatl?  She just said...well..you got through it last time ok. Well...that was 12 years ago and I was under a lot less stress than my life has me under now. My immune systemneeds all the help it can get, I am sure. She has gone through this whole bc twice herself. Two primaries (1 on each side 16 years apart - both Stage O - both DCIS) not even the same kind of cancer I have this time....I know, in her convoluted way, she thinks she is helping, but she was pretty much in denial that I even had cancer the last time. She figured they made a mistake. So to second guess my treatment plan, of which she has no understanding, is just frustrating.

Yes...that's how my day has been going. Other than feeling a bit crabby and sluggish...I am doing pretty well physically. Not much pain from Neulasta after yesterday, which was bit sketchy. Claritin seems to be helping!

Hang in there Elmwood - you will have answers to questions and more questions about those answers, but hang in there!

Thanks on the Emend Sandra. They didn't use that one me at all...Aloxi was my IV anti nausea...seems to have worked like a dream!

Dorrie

Faith316

Hope everyone is feeling a little more calm this evening.  Hang in there girls.  You'll get through this.  You are tougher than you think!

dj59

Thanks Faith!!  Hangin in.

A little quote from AA Milne:

"You are braver than you believe, stronger than you seem and smarter than you think!" Oh Winnie the Pooh....Silly old Bear.

Snobird

Elmwood, it really does suck right now doesn't it? I was in your shoes only 20 months ago only my recurrence was 4 yrs after my initial DX. Stressed doesn't even begin to describe it. Of course I have a type A personality so I jumped right into my fighting mode and hit the ground running. Once I knew what I was going to do and had a plan in place for treatment I felt much better. Now after a BMX/DIEP ( bilateral Masectomy with autologous reconstruction) done and no other additional treatment I am moving on with my life, albeit slowly. The test and scans provide valuable information and help the Docs and you plan your treatment. Try to look at them as being research tools for the Docs and not medical procedures. I did not know whether or not I was going to have any chemo until after the MX pathology was done. Hang in there and ask your Dr for some anti anxiety meds if you need them. They will help you calm down. Good Luck and wishing you the best.

elmwood

Thank you Snobird

It is so comforting to know someone in my shoes (of course I am  so sorry for you Snobird).   I have been free for 14 years and my tumor is 2cm.  I wonder how long it was there although I had my mammography last year this time and it was fine.  I want this done so fast but afraid to rush without a second opinion.    My  first appt is tomorrow at 4pm and I am in the process of contacting another surgeon.  I hate the thought that this is in me and want it out asap.     All they told me is that it is a malignancy at the original lumpectomy site.   I picked up my films and written reports but dare not read them -- to afraid of what they might say.  Am I crazy??

Thanks all of you for your support.  I know so many cancer cases but none like mine.  recurrence- and I am getting better at nagivating this web site..amazing what you can do if you need to.

Elmwood 

elmwood

Thanks to all of you for your words of wisdom,

I now have anxiety pills that I take 3x a day + a sleeping pill at night.   It does take the edge off and I know what I must do.  I will do everything I am told by the surgeon of my choice.  My sister said to get as many opinions as I want to make sure he/ or she is the one for me. She also stressed not to  dilly dally- work fast.   I am doing that.

I feel like I am now on the computer too much but it's so helpful    Will keep everyone posted.

Elmwood

dj59

As John Lennon once said.."whatever gets you through the night..." Sounds like you are coping with this crappy news. That's all we can do, anyway we see fit!

xo

Dorrie