Confused

JoyY

I had my routine mammogram last Nov 3rd and that was when everything started.  From "there is an area of concern that needs biopsied" to having the mastectomy.  It all went so fast.

Today, I went to the Oncologist for the first time and because my cancer was so small and the lymph nodes were not affected he said that I would not need Chemo but I would need to take the hormone pills.  Yet, from this news, I feel EMPTY inside and I don't know why.

I walked into the "Cancer Center" today and it all became surreal. I sat in the office looking at the wall that had the mannequin head with the different hats and wigs you could get.  I looked around at the other people, young and old, and it hit me.  I had "CANCER". 

Then, when I saw the doctor, he had a print out of what my prognosis of being alive in 10 years with not having treatment to chemo.  My prognosis of being alive in 10 years?????

Without any therapy I have a 78.9% chance of being without cancer in 10 years.

I have a 17.9% chance of a relapse in the next 10 years.

With hormonal therapy I have a 6.6% extra added on.

With Chemo I have 3.8% added on. 

The doctor then proceeds to tell me he is going to put me on Femara.  I am to see him every 3 months for the next two years.  Have test periodically and of course, a mammogram for the other breast. 

Why can't I feel excited that everything turned out as good as it did?  Why do I just want to curl up in my bed and just stay there?  Why can't I smile and be as happy as everyone is at work? 

Why do I feel so "empty"?????????

car

Joy, because cancer sucks and makes you unattractive unless you're interested in, and lucky enough to get a good recon.

Your dx is more serious than mine is, but it sounds as if your onc is on top of things. How do you feel about the quality of communication between the two of you? If you think that s/he's answering your questions and competent in his/her recommendations, then try to relax, develop a relationship and move foreward. If not, change oncologists.

Stats can be very difficult for  most folks to interpret--if you have questions, ask. Forget the wigs and hats. I have a friend who went through chemo twice for colon cancer who kept her hair. If it comes to that, you have options.

My onc sees me every 3 months, and it's a blessing. I check in w/him, we discuss what's going on, he orders blood tests and any scans necessary. I have annual mammos of the remaining breast and 2-year bilateral MRIs. I will say that it's easier now, and I feel that it's more routine. At the beginning, I was very fearful.

I think that it took me a long time to move from feeling empty because I had lost my breast and nothing was going to  make up for that--until I found the right recon after a failed saline exchange. You've been through a lot in a couple of months. My dx was in August, and after a lot of tests and BD shopping I finally had my mx in January. I had more time to adjust than you did.

You've been through a lot. Cut yourself some slack. And vent if you need to.

LuAnnH

Well DUH!!!!!  You just got told you have the "C" word.  All those feelings are normal natural reactions to what you heard.  When you first learn about your dx it is so hard to grasp everything that is coming at you and whirling around you.  It seems you get sent from test to test and doctor to doctor.  They all throw out information and words whether you understand them or not and tell you to go home take your pills and have a nice life!  GET REAL!!!!!  If only cancer were that easy.

One thing I will tell you is this, research on your own about your disease.  You are your best advocate!  In the big scheme of things you have a very high likelihood that cancer will never darkern your doorstep again, but there are NO guarantees.  That is why I say understand what you have and how it is being treated.  You are the boss and not the onc!  I work with my onc as a team and not a one person show and we both do well with it. 

If you are slightly uncomfortable with anything you have been told feel free to get a 2nd opinion and don't give it a 2nd thought!  Second opinions are quite common when it comes to something as serious as cancer.  You have to be sure that everything is exactly what you think, there is no do overs with this disease unfortuantely.  I am so glad to hear your disease was caught early and you will more than likely have great outcomes!  Things will get easier as time goes on but it will take some doing.  Keep visiting us and learn how to laugh and enjoy even though people use the "C" word around us.

iodine

Ahhh, could it be that you have finally realized that your have had Freekin' been diagnosed with cancer???  Hmm.

Empty is a good word---you have "spent" all your emotions on planning for treatment and trying to wrap your head around all this --- biopsy, surgery, (holidays!) how to tell your family and treat them.  I have yet to meet anyone who is excited for the diagnosis---or the treatment plan.  You have been eyeball to eyeball with your own mortality.  That is the biggest thing we will ever have to finally accept.  Oh, we all knew we would die one day BUT, now a medical condition and professionals have actually CONFIRMED that will die and WTF, they are putting dates on the line.  This is HUGE.

You anticipated a great deal more than Femera, and believe me, we all have been there.  Only some have to have chemo and rads too.

I had the same -- but I declined chemo and had a mast to avoid rads.  Go ahead and curl up and comfort yourself as long as you need to.---you sure as heck deserve that time of comfort.  And the people at work haven't been up nights planning how to be superwoman and go thru chemo with a smile and how to make sure to not be a burden to anyone at home or work.

How many nights of sleep have you lost?  I'd say you deserve at least that many weekends in bed to regain what you have lost.

(((((HUG)))))  Now go climb in bed and comfort yourself.  If you have a spouse, or other, curl up in their arms and let them rub your back and tell you everything is going to be ok.  God Bless

salvageprincess65

I know exactly how you feel. I can still remember the day that I got that phone call from the doctor that it was cancer. I had to tell people. what was I going to do? I told my sister first and then I had to drive to towna nd tell my husband. I walked into the shop and just bauled and told him. We drove around int he country and just cried. All I could think of was that there was no way in hell that some other chick was going to come into my house and mess with my stuff, raise my kids, and sleep with my husband. I looked at my husband and told him that if something happened he was not going to remarry soon or I swear I would haunt her ass till she left, nothing would start, the barn would burn, and everything in the oven would burn. he just said, OK- I felt better. I guess it was like an old dog, you know. Then we told the kids. Then I thought about my kids. I wanted to see marriages, houses, me a grandma, and then I saw my husband in the picture, I'm so young, what's going on. it just is a total shock. I think a tornado hitting your house would be easier, at least you would have a warning. I was just MAD, I mean MAD, I didin't exactly know how to react to this news you know. My work, people, already some of them once the word got out, had you dead. why do they do that. I can also remember the first time, like you , that I went to the doctor. I had a port put in and went to the doctor. I had just hung up my cell and was following the hurse into the room to have blood drawn. I looked up and I was in that infusion room. I am a loud person, and pretty outgoing to say the least, and I said, " what are we doing in here". She said we are going to draw your blood, you have a port, I said "No you aren't " I'm not doing anything until I talk to the doctor. you are going to draw it out of my arm, or I will. You aren't touching that with all these people in here." I saw paitents that I didn't know if a guy or a gal. I wasn't ready for that room. If I had been a mousey gal, I would have crawled under my couch and just died. It was there that more of this diagnosis set it. We talked this over and heard even stats to build a bridge. I went home and then went to the first chemo. I was casually late, and my husband was waiting there for me. I can still feel that shit- pardon the phrase going in. Voluntary Poisoning. I swear that cooked it up in the parking lot- STP, Ethanol, and antifreeze and food color. But- I got into that fight or flight mode and just went into it. that's all we can do. I'm done with treatment and made it through, I'm thankful that I made it through, I do know how you feel. You feel labeled and worry about things and every ache and pain - I know. I'm looking forward to many years, I know you'll do fine- just pull out that bitch gene and think about yourself now and let people help you. I have found that stress is not a good thing with this- that's a toughy for me. Good luck and Pray and many thoughts-

YVB

salvageprincess65

I know exactly how you feel. I can still remember the day that I got that phone call from the doctor that it was cancer. I had to tell people. what was I going to do? I told my sister first and then I had to drive to towna nd tell my husband. I walked into the shop and just bauled and told him. We drove around int he country and just cried. All I could think of was that there was no way in hell that some other chick was going to come into my house and mess with my stuff, raise my kids, and sleep with my husband. I looked at my husband and told him that if something happened he was not going to remarry soon or I swear I would haunt her ass till she left, nothing would start, the barn would burn, and everything in the oven would burn. he just said, OK- I felt better. I guess it was like an old dog, you know. Then we told the kids. Then I thought about my kids. I wanted to see marriages, houses, me a grandma, and then I saw my husband in the picture, I'm so young, what's going on. it just is a total shock. I think a tornado hitting your house would be easier, at least you would have a warning. I was just MAD, I mean MAD, I didin't exactly know how to react to this news you know. My work, people, already some of them once the word got out, had you dead. why do they do that. I can also remember the first time, like you , that I went to the doctor. I had a port put in and went to the doctor. I had just hung up my cell and was following the hurse into the room to have blood drawn. I looked up and I was in that infusion room. I am a loud person, and pretty outgoing to say the least, and I said, " what are we doing in here". She said we are going to draw your blood, you have a port, I said "No you aren't " I'm not doing anything until I talk to the doctor. you are going to draw it out of my arm, or I will. You aren't touching that with all these people in here." I saw paitents that I didn't know if a guy or a gal. I wasn't ready for that room. If I had been a mousey gal, I would have crawled under my couch and just died. It was there that more of this diagnosis set it. We talked this over and heard even stats to build a bridge. I went home and then went to the first chemo. I was casually late, and my husband was waiting there for me. I can still feel that shit- pardon the phrase going in. Voluntary Poisoning. I swear that cooked it up in the parking lot- STP, Ethanol, and antifreeze and food color. But- I got into that fight or flight mode and just went into it. that's all we can do. I'm done with treatment and made it through, I'm thankful that I made it through, I do know how you feel. You feel labeled and worry about things and every ache and pain - I know. I'm looking forward to many years, I know you'll do fine- just pull out that bitch gene and think about yourself now and let people help you. I have found that stress is not a good thing with this- that's a toughy for me. Good luck and Pray and many thoughts-

YVB

baywatcher

Joy-

I feel empty too. I feel like the person I was is gone and I miss her. My bc was early detection too and was caught on a mammogram both times. My husband says that I am a poster child for early detection but I don't want to be!! I have so much doubt in my mind and it is making me crazy. I always wonder if my body could have gotten rid of this small cancer on it's own. I will never know.  I think I could have handled it better if I had found it on my own. I don't know about you but I think this is the primary cause for my emptiness, that it was found on a mammo. I guess I'm not being helpful to you but just wanted you to know that I understand your emotions and feelings. I think in time it will get better for both of us.

Anonymous

I would say your age is a factor in this, too ....  if you are under 40, you might check into getting chemo anyway.  Therapies are targeted but 3% is 3% better than not.

sahalie

I was stage 1. Grade 2.  No node involvement but I am triple negative so the oncologist had me take DD chemo A and C.   I felt exactly as you wrote.  The day I was shown the infusion room made me ill to my stomach.  All those baby blue recliners lined up with people and tubes.  The only saving grace that kept me from unloading my cookies right there on the floor was a big poster of Lance Armstrong on the wall.  Seeing his face gave me a good feeling.  I have no idea why.   Just someone to connect with I maybe.  I couldn't get out of that room fast enough.

My treatments were there so I made the best of it and the most wonderful thing of all were the amazing women and men I got to meet while we all got our treatments together.  Such friendship in that room.  The staff were awesome and so caring.

That was in 2006.  I go next week for my 6 month blood work and the next week for my 6 month check up.   My stomach still gets wired with knots when these appointments approach.

I wish you all the best Joy. 

dlb823

Hi, Joy ~  I think some of the let down might be that you're no longer doing very aggressive treatment, so you feel a bit less in control.  Another explanation is simply that when everything happens so fast, as it does when you're first dx'd, you don't have a chance to feel and grieve the changes.  Eventually, those emotions catch up with you, and you need to go through letting them in, before you can move forward.

In reading your post, I'm curious to know if your onc even suggested taking the Onco-DX test?  As Roctober said, 3% is 3%, and actually the figure you gave is closer to 4%, or 4 out of 100.  Unless you're entirely comfortable with those odds -- and perhaps that is also part of your feeling down -- a feeling that you aren't comfortable not having the choice -- perhaps you could ask for the Onco-DX test, or get a second opinion re. chemo to help ease your mind.    Deanna

JoyY

I want to thank every one for their input.  You all gave me a lot to think about.  I thought a lot last night about everything and talked to some friends today.  I think a lot of it is for one, I never really stopped to digest that I had cancer until I actually walked into the "cancer center".  Also, from day one when all this started it was like being on a locomotive going full steam and then....boom!  The train stopped dead in it's tracks.  The road that the train was going down missed it's turn and it had to come to a screeching halt, back up and turn onto another road. 

I am 50 years old so maybe that did have come into play on his decision.  Also, no he did not suggest taking the Onco-DX test.  He said I could call him any time if I had any questions so I thnk what I'm going to do now that I am a little more clear headed, is sit down and write down my questions, concerns and go back in with those. 

Thank you all for listening and giving me things to think about.  If there are questions that you think I might need to ask that haven't been brought up, please let me know.