Scaring myself silly

Ladyblue68

I joined this website not too long ago. A couple days ago all I could think was......I'm scared. And had myself in tears for the first time since my diagnosis. 

I was diagnosed on May 11, 2009 with breast cancer (first in my entire family line). This was after my very first mammogram in February and a biopsy on May 8th. From there it moved pretty fast. I was given the choice of lumpectomy with radiation or mastectomy.  I chose a mastectomy with reconstruction because I wanted it totally gone with no stressing or worrying. My family was amazed by my positive spirit and strength in the wake of the news.  And I was. Still am. I met with a plastic surgeon and a surgeon. On June 11th, I had the mastectomy with a tissue expander put in. My implants will be put in when I get to the size I want to be.  After the surgery, I was informed that no lymph nodes were affected. Yay! Recovery wasn't too bad.  

I met with an oncologist on July 1st and he gave me the news......I had to have chemo.  Needless to say, I was in shock.  I just knew I was "good to go". He told me I was Stage 1, grade 2.  Because I was young (40), my tumor was just a hair under two centimeters and I was grade 2, it was necessary to have the chemo. The fact that I would possibly lose my hair didn't bother me so much. I have had super short hair before.  It was the word "chemo" that got me. For the first time, I was truly scared and went into a depressed state. 

I have a bone scan tomorrow, a CT scan Wednesday and my teaching lesson on Friday. It's all so hectic and tiring. I am now stronger since reading the posts in these forums.  It has made me return to the positive spirit and strength that I had since first diagnosed.  And I am very thankful and blessed to have found this site.  It has given me hope. I am fighting with all that I have and I know that I will defeat this. I put these words on my mirror to see daily.........Dominate, Conquer, Defeat, Obliterate.  Those are my keywords to win this battle. I am a survivor. 

fairy49

Giggles, love your attitude girlfriend! Yes you are a survivor! Welcome to the boards, sucky way to meet fabulous women, but they are, every single one, just amazing! I have a question, did you have the Oncotype DX test done, to determine the whole chemo issue?

Lorraine ox

pk0199

Giggles, you ARE a survivor! I wish you all the best in your treatment. I didn't have chemo so I can't comment on that, but I know what you are going through, it is not easy. Try to keep thinking if the first part wasn't so bad, the second part won't be either.

Best of luck.

yasminv1

Giggles,

Best of luck to you. You will fight this. I admire your attitude.

Yasmin

karenz01

I understand what your are going through.  I'm waiting for my Oncotype to see if Chemo will do me any good.  I would suggest a 2nd and 3rd opinion.  You have to weigh the benefits versus the risk.  I want to do everything I can to fight this but confused on if Chemo is the right choice or not.   Please keep us posted on how you are doing. 

Ladyblue68

I'm not sure if that test was done.I've had so many tests done that it's overwhelming. I'll have to check on that when I see the doctor on Friday.  I'll let you know if I had it or not. Thank you for the great words of inspiration and strength.  Yes I am one of this fabulous group of strong women.  Didn't expect to be, but I am proud to be part of it!

Ladyblue68

I have to get a copy of my test report from my doctor. I was reading in other posts about ER+ and PR+. I am positive on both of those counts.  I don't remember the numbers though. My oncologist did tell me that I would have to go on hormone therapy(?) after the chemo. Does that mean I had the test done?

apple

Stage 1 grade 2 is good.  you'll be fine.  I started at a much later stage - had to have 2 sets of chemo and the works.  i'm finally fine.

my chemos were a piece of cake.. very tolerable.

good luck to you.

Mary

Anonymous

Giggles

I would DEFINATELY ask about the OncoTypeDX testing......I see many women on here that have similar dx's and age as you who are not taking chemo..

As like Apple, I was further along that you as well, but I did not do chemo, only lumpectomy and rads...then tamoxiphen, now onto Femara for two years...

Best wishes

Jule

PS-edited to say: yes the er/pr positives would mean that they have testing the hormonal side of things...it is good to be positive on those two as it gives you the option for post treatment meds to help keep it away and to fight it from showing up in the other breast.

Ladyblue68

Thank you both so much for your thoughts and words. I will definitely ask my oncologist about the Oncotype DX testing when I see him Friday.  I will keep you posted.  I have to go back to the doctor's office in 30 minutes to do my bone scan.  I had to wait 2 hours after the injection to do it.  Tomorrow is the CT scan.  My liver levels weren't good and he wants to take a look at it.  He wants to see if it has anything to do with all the prescriptions I take on a daily basis. 

Thank you again and best of luck

Felicia

vision4utoo

giggles124, we have similiar issue, I was 43, over 3 cm, er+ hr+, her - m multifocal and multicentric (i thought those meant same thing).  My docs said chemo to be safe and they weren't sure if I would need rads(didn't - yeah!)  Onc said safer for my iffy dx to do the chemo and I am not doing the Tamoxifan...I am very sensitive to them and couldn't handle the mental and emotional reprecussions of Tamox - I'd rather do chemo for a year than that stuff - but that is me - each of us are different in DX, treatment, etc.  I too struggled with the decisions we are faced with.

A note about ONCO type: No one even suggested to me prior to chemo...I am choosing to overlook that with my Oncologist.  But it is good idea to get test.  I would have gone with chemo anyway, but I am borderline, in the middle on everything.

Chemo is very doable, wasn't the boogey man I thought - though for more agressive types of BC, the different types of chemo are rougher.  The A/C/T went well, the side effects are almost all gone now. (Oct was last chemo).

 We are here for you ~

nelia48

Giggles, I love your spirit, and you WILL get through the chemo!  If I can do it, anyone can.  It seemed awful going through it, and there will be days you wonder if you are road kill, but after it's all over, you will bounce back faster than you ever thought and you'll be on with your life. 

I never heard about ONCO type, etc. For all I know, my oncologist may have done that.  As I've gotten to know him better, I've found out that he only tells me what I need to know and keeps to himself what HE needs to know.  If I ask, he will tell me right up front.  But I need to know what to ask!!!!!

We're all here for you when the going gets rough or you need a shoulder!  Keep up the great spirit!

simmonba

HI Giggles - I have a pretty similar diagnosis as you - check your path report for HER2 status, because if it's positive that is one indication your cancer may be slightly more aggressive - but when I met with my medical oncologist, he said I would have to "twist his arm" to get him to agree to chemo for me - he felt that clearly the risk of side effects would outweigh the benefits. He said for me (also ER+) tamoxifen would increase my 10-year survival rate by 4%, while chemo would increase it another 1.5%.  But even if I did nothing more at all, my 10-year survival rate would be 90%.   Recurrance rates were similar.  So I thankfully agreed to NOT have chemo and just do tamoxifen for 5 years.

A second point my doctors made for me through all my decision-making:  YOU DON'T HAVE TO RUSH INTO THIS DECISION.  Given you are grade 2, unless there is a lot of info in your report showing your cancer is aggressive or growing quickly (or other info about you your doctor has) you do have time to decide whether you want to do chemo or not and to get a second opinion if you feel you don't know enough.  My surgeon told me my cancer had probably been"growing away in there" for 3 or 4 years before reaching detectable size.

 And finally, my family doctor said that 2 years ago, when a younger woman (under 45) was diagnosed, it was standard practice to "throw everything" at them - chemo, tamoxifen, the works - because it was felt younger women could handle chemo side effects better, and because of living longer, were statistically more likely to have a recurrance.  But now, better methodology and better tools for treatment options - like the Oncotype DX test - are used to avoid unnecessary treatments, and/or to make sure women like you and me really understand the upsides and downsides of treatments.

Sorry to go on - as others have said, it's a big decision and it's YOUR decision.  There are some good threads in here on Oncotype testing, costs, etc.  too.    Hugs.

 

sheri47

jp we almost have the dx i am stage 1c grade 2 no nodes er pr pos her2 neg  is see you are stage to just wondering why stage 2  thank you sheri

adenacb

Giggles - I would definitely make sure you have the Oncotype DX test before you make the final chemo decision - I went through a lot of stuff with my oncologist - she seemed to be leaning towards chemo - but the Oncotype showed that I would have little benefit from it. You might also get a second opinion. I agree with the others: don't rush into this.

Anonymous

Sheri

I was told Stage II because the measurement of the tumor was over 2 cm by .4 at surgery. Everything else fit the Stage I bracket but that so they said they had to formally Stage at II, but that everything else showed early Stage I

The entire Stage II thing freaked me out quite a bit at first. This stuff is sure hard to figure out isnt is....

Best wishes

Jule

Ladyblue68

Today I had my CT scan that my doctor ordered because my liver levels were high and it concerned him.  He wanted to see why before I have anything else done.  The waiting for the test was horrible.  I have been up since 5 a.m.  The test was at 10 but I had to be there at 8 to drink that HORRIBLE tasting barium.  Then I ended up having to wait 2 1/2 hours.  Needless to say I was very tired.  When they took me, I also had to have in IV with dye in it as well.  It made me warm all over and have a metallic taste in my mouth. But the test itself was easy.  Tomorrow I go to see my plastic surgeon for a "fill-up".  I'm gonna try to do more cc's this time. I did 80cc's 10 days ago.  I want to try 100cc's this time.  We'll see.

Best wishes and God bless to everyone

Ladyblue68

Today I went for my teaching lesson with my fiance and mom.  I went into it pretty sure I would most likely take the chemo to fight this thing hard and have some peace of mind.  Having them two there kind of unnerved me because I can tell they don't want me to have the chemo.  So now I am confused. Do I get it now or not?  They feel that since I had the mastectomy that all the cancer should be gone so why do the chemo. My oncologist says chemo once every 21 days for four treatments.  I am to have Cytoxan and Adriamycin.  After the four rounds of chemo, I am to have hormones for five to ten years.

Am I making the right decision now? I thought I knew.  I had the mastectomy so I wouldn't have to worry about a lumpectomy and it coming back.  When he said chemo, I will admit it threw me for a loop. But then I decided, ok let's do this to fight back hard.  Now I'm unsure.  Having them with me has made me unsure.  I know they love me and don't want me to go through any unnecessary treatment.  I want to fight back hard and defeat and obliterate this thing. 

Please share what course of treatment you decided to go with and what made you decide.  Thank you so much!

fairy49

Giggles, I would definately wait until you get the oncotype DX results, chemo has shown to have little benefit for  stage 1, node neg, ER+ , but that's just my opinion. Hugs to you!!!

L

ox

Anonymous

Giggles

I too would wait for the Oncotype test results.....

The other thing is: yes they love you, but ultimately this is your fight....you need to be able to look yourself in the mirror and live with your decision.....Do what you feel is right, the others will abide by your choices. Do what you feel is right for you!!!

Did your doctor say why he is recommending chemo???? it might be a question you can ask...I know alot of times in younger ladies they recommend it because of the length of expected life span being longer than someone older.

Jule

dlb823

Felicia ~ I agree with the other women here about getting an OncotypeDX test and waiting for those results, which will quantify your chances of a recurrence with and without chemo. 

If it turns out that you do need chemo, you might also want to ask your onc about the Adriamycin, especially if there is any history of heart disease in your family.   In the last year and a half or so, many oncs have stopped using Adriamycin as much as they did previously, in favor of TC, which is Taxotere + Cytoxin.  Adriamycin and Taxotere each have SEs, but a landmark study presented in 2007 showed that TC has slightly better long-range outcomes, with significantly less heart damage than AC.  Many women still get Adriamycin and do just fine with it, so I don't want to scare you about it.  But you need to be aware of the risks (there is also a very slight one of developing leukemia on Adriamycin) and have input into what drugs you are given.  

Please keep us posted!     Deanna

kimby

Hi Ladies, I'm a newbie. All your posts so far have been very helpful. I have a similar dx. Age 42. My BS said I would definitely have to do chemo. My medical onc said she didn't think it would be necessary but suggested the Oncotype test to be sure. She called and said the result came back low but on the higher end of the scale and we'd have to have a face to face to decide on treatment. My appt. with her is on Mon and I too am confused. Scared to do chemo. Side effects freaking me out. DH doesn't want me to put myself throu chemo. I think it might put my mind at ease in the long run. I know i can do it if i have to....but do i have to?? Totally confused.

 I know how you feel Giggles. 

nelia48

I just have to be honest here about how I feel.  I know others may feel differently, but this is just my heart speaking.  I would go for the chemo.  In fact, if there was other stuff to take, I'd take that, too.  I know how positive and up we are all supposed to be, but this is just too serious to play with.  Is there a reason why your family doesn't want you to have the chemo?  If your oncologist is on the fence about it, I would go WITH the chemo.  I would want to know in my heart down the line that I did everything I possibly could to get rid of the cancer.  That's just me!

comingtoterms

Doctors today put much of the decision-making onto the patient.  Sometimes this is a good thing; other times it is just too much pressure.  When I was trying to decide what to do, someone on this board suggested asking myself this question:  I you had a recurrence, would you be more upset if you had done the chemo or if you decided against it.  For me, there was no other answer:  I would never be able to live with myself if I did not do everything in my power, right here, right now, to take this to the end.  When I put my Onc. on the spot, he finally did  say that he thought chemo was the right thing for me because of my pre-menopausal status, age (48), size of tumor, the fact that it was multi-focal and stage 2 grade 2.  I am one chemo away from the end (just had my second last Taxol today), and am at peace with the decision I made.  It is an EXTREMELY difficult decision, especially because you are Stage 1 - I agree with the other ladies about Oncotype testing.  You must ask for it specifically, though, because many insurance companies will not cover the cost and it is quite expensive.  Best of luck to you and remember: whatever decision you make is the right one.  Tammy

kim40

I agree with Nelia48.  I would do the chemo as well.  The side effects of chemo are not that bad.  They give you drugs ahead of time to prevent  you from getting sick.  You will feel yucky for a day or so, but overall it is doable.  When I had chemo, I got sick the same night, tired the next day, but I was up and about the following.  It took me about 4 days to get back to feeling like myself.  I had no choice, I had to do chemo, but if I was given a choice as to receive it or not, I would take it.  I would want to do everything I could to prevent this from coming back.  If there were such things as "chemo boosters" I would do that too!  That's just me.  Whatever decision you make, you have to be comfortable with.  I'm not trying to persuade you, don't get me wrong, but I would not be able to live with the "what if's".  I hope I didn't offend anyone.....

Ladyblue68

Thank you to all of you.  I appreciate and respect everyone's opinion.  I did ask about the oncotype test and was told that it was more about those with a genetic trait leaning towards it.  That my insurance may have a problem with paying for it. I will also find out about doing TC instead of AC.  Thanks for the info on that.

I am just of the mind that I want to fight this with all I have and not have any regrets.  If there was a chance down the line that I didn't do all that I could to fight for the this life that I've been given, then I would deeply regret it.  My mom is onboard with my decision.  Ultimately it is up to me.  And I choose life.  I am not saying that those who choose not to do chemo, please don't misunderstand.  I am speaking for myself personally and how I look at it in reference to me.  

I start the chemo in 2 days and am ok with it.  I am a little nervous about how it will be but I am strong and my mom and fiance will be with me.  That makes me happy.  We have a future we're planning for and kids that I want to live for.  And my beautiful grandson, who took his first steps two days ago.  I am so excited! So I have alot of things to keep me smiling and strong.

God bless everyone and I will keep you updated as I start my chemo.