for those who did NOT have chemo---do you find yourself saying--

I didn't even have radiation. I had a lumpectomy, was told I'd have chemo & radiation but the day after I saw the radiologist I got a phone call that I needed a mastectomy. Even after that I didn't need rads because I had no breast tissue left to radiate. Had the Onco test and scored 14 so I didn't need chemo either. I have been on Tamoxifen for over 3 years and see the oncologist every 6 months. I felt like a "cancer fraud." I didn't have to go through the "hard" stuff. Sure I lost a breast and had reconstruction, but I still have all my hair and no port in my vein. It all seemed too easy, except emotionally I was a mess and confused. Slowly I've come out of it and begun to live my life again. I've adapted to the new normal. I've been told that there is no evidence of the disease and after 5 years on Tamoxifen with no recurrence they will consider me cancer free. How long have you been on Tamoxifen? Hope all is going well for you.

I simply call myself a cancer survivior because I have had to deal with cancer in my life, regardless of my treatment strategy.

We are lucky to not have had the chemo, but lumpectomies and mastectomies are no picnic!  They are a result of our cancer diagnosis, so anything else that falls into this category is related to the illness.  It took me a while to realize that there was alot of post-treatment after they had removed the cancer, but it is all connected.  Sure, some of us have had more serious moments, we are definitely lucky to be here to tell our tale.  Some poeple do not know what to say, but we now know that NED is now our most desired state.

Follow-up is important, when we return it may seem harsh, but it is in our best interest.  

Congratulations on your strong recovery!  

Annie

Everyone,

Cancer is cancer.  Some of us are more fortunate that others as far as stage of cancer, treatment of cancer, and side effects from the treatment of cancer.

I also felt like I did not have cancer because (1) I had 0 Stage DCIS (2) Had contratateral mastectomies so I wouild not have radiation nor need to take Arimidex, etc.

While I was in breast reconstruction, I told the nurse that I am not like the other women who are having chemo nor radiation.  I am not going through what they are going through.  Then a nurse told me in a gentle, soft, kind voice, "Yes, but you lost 2 breasts and they did not."   Then I thought about what she said.  I did lose 2 breasts because the cancer. 

By the way, that 0 Stage DCIS returned 2-1/2 years later as invasive cancer on my mastectomy scar.  SO...don't let anyone tell you that 0 Stage DCIS is not really cancer.

So, don't think of youself in any less light.  The bottom line...cancer is cancer and we are all survivors!!

Lots of Love,

Janelle

I have always felt no matter what stage 0-4 a breast cancer diagnosed is devastating.  There is the anxiety, the waiting, the fear, the preparing for the old slash, burn or poison as we called it in days of old.  

Treatments come in many forms and if your very lucky you will have one that does allow a target therapy.  Surgery goes back eons of time when they tried to remove the lump in hopes of killing the cancer.  Halsted mastectomy goes back to the late 19th century. Radiation and chemotherapy came into usage in mid 20th century.  Around the 1970's along came hormonal therapies.  Target therapies for HER2 didn't arrive until the late 1998.  These dates are ballpark figures, please don't reprimand me if there not totally accurate.  We are given a treatment that suits our cancer type best, if there are malignant cells you have cancer.   If the cells are breast then you have breast cancer whether you have surgery or not, chemotherapy or not, radiation or not, hormonal drug therapies or Herceptin or not, you still have breast cancer.

It is always a good thing to remember that 70% never have a recurrence.  The problem is that those who have a diagnose and treated will continued to wonder when and if the other shoe will drop.  They all fear the plunging back into the whole breast cancer experience again.  Most never do.

Stages 0-3C needs to acknowledge there are worst words than "you have cancer" and they are  "your cancer is back, it's treatable but not curable".  Some times, I become very annoyed with people who don't remember for some of us it's worst, as it will never end.   Most do remember.  That is not the same as the fear of it returning.  We don't wonder if it will return anymore, we know that it has.

For 18 years, I did only hormonal drug therapies and they were the right one for my very ER+ cancer.  I so regret that there isn't at this time another I can take.  I never doubt I had cancer, I saw the films, I have the reports and in 2008, my oncologist showed me the PET/CT scan on this see through woman on a computer.  There was never any doubt in my mind that my cancer that totally lighted up my lungs and pleura was very real and very serious.  Though it was suggested by the Tumor Board I do chemotherapy.  They didn't know me or my cancer and my oncologist who was on vacation when they met suggested hormonal therapy which gave me 4 1/2 + of time.  Now I am doing chemotherapy which for my kind of cancer and I doubt will work.  I definitely felt for 18 1/2 years that I have cancer.

Doris, viewpoint from the other side of stages 0-3C.  

My views doesn't mean I represent other stage IV who might feel totally different than me.  These are my opinions and there are no right or wrong opinions.

disneyfan2008 said:

Thanks to all for the

Thanks to all for the comments....very insightful..

 

Denise

 

just got a call my cancer center-time to go back for check up (have seen med oncolgist many time since)

 

HAD lumpectomy on sam e side in Nov **************only scar tissue...happy to say

Hopefully you get the green light.     Then, go home and enjoy a glass of vino for me who no longer can have one. 

Best,

Doris

SIROD said:

A view point from the other side:

 

I have always felt no matter what stage 0-4 a breast cancer diagnosed is devastating.  There is the anxiety, the waiting, the fear, the preparing for the old slash, burn or poison as we called it in days of old.  

 

Treatments come in many forms and if your very lucky you will have one that does allow a target therapy.  Surgery goes back eons of time when they tried to remove the lump in hopes of killing the cancer.  Halsted mastectomy goes back to the late 19th century. Radiation and chemotherapy came into usage in mid 20th century.  Around the 1970's along came hormonal therapies.  Target therapies for HER2 didn't arrive until the late 1998.  These dates are ballpark figures, please don't reprimand me if there not totally accurate.  We are given a treatment that suits our cancer type best, if there are malignant cells you have cancer.   If the cells are breast then you have breast cancer whether you have surgery or not, chemotherapy or not, radiation or not, hormonal drug therapies or Herceptin or not, you still have breast cancer.

 

It is always a good thing to remember that 70% never have a recurrence.  The problem is that those who have a diagnose and treated will continued to wonder when and if the other shoe will drop.  They all fear the plunging back into the whole breast cancer experience again.  Most never do.

 

Stages 0-3C needs to acknowledge there are worst words than "you have cancer" and they are  "your cancer is back, it's treatable but not curable".  Some times, I become very annoyed with people who don't remember for some of us it's worst, as it will never end.   Most do remember.  That is not the same as the fear of it returning.  We don't wonder if it will return anymore, we know that it has.

 

For 18 years, I did only hormonal drug therapies and they were the right one for my very ER+ cancer.  I so regret that there isn't at this time another I can take.  I never doubt I had cancer, I saw the films, I have the reports and in 2008, my oncologist showed me the PET/CT scan on this see through woman on a computer.  There was never any doubt in my mind that my cancer that totally lighted up my lungs and pleura was very real and very serious.  Though it was suggested by the Tumor Board I do chemotherapy.  They didn't know me or my cancer and my oncologist who was on vacation when they met suggested hormonal therapy which gave me 4 1/2 + of time.  Now I am doing chemotherapy which for my kind of cancer and I doubt will work.  I definitely felt for 18 1/2 years that I have cancer.

 

 

Doris, viewpoint from the other side of stages 0-3C.  

 

My views doesn't mean I represent other stage IV who might feel totally different than me.  These are my opinions and there are no right or wrong opinions.

 

 

 

Hi Doris -- I know you are very knowledgeable about breast cancer and I look up to you when it comes to information, but I was wondering, would you try to go back to any of these hormonal pills for a longer period of time? I heard from recent studies that women will be put on tamoxifen for 10 years instead of 5. My Onco already told me this at Sloan (NYC). I just started Tamox over a year ago and am planning to extend if I have to (may stop at some point to have a child since I don't have any). I am sorry if I am throwing ideas at you that you've already tried or knew about. I hope you're doing/feeling well.

BTW, something I was always curious about, is the 30% of those who see cancer again among the youngsters? I always thought about this since my grade was a 3 because I was dx at 32, cells are more agressive when we are younger.

Love you Doris!

I am in the same position as many . . . no chemo, but did do radiation and now on tamoxifin..  I have gotten

a lot of support from those on this drug . . . it is no picnic to be on these, but your support about people's experiences has helped me.

I still consider mysefl a cancer survivor, and I know it is always in the back of our minds that it could recur . . .so kudos to people

on this board for their help and support!  The worst part for me was missing work during radiation to take a daily flight to the

radiation center.   In severe snowstorms and wind . . .but I did it!  Now they are finishing a radiation center in our city in Alaskao , so

glad that others won't have to drive or fly to Anchorage now . . . it is supposed to open this summer.

So  each of our experiences are  different and unique, no mattr what the treatment plan or diagnosis, and one of

the posters in my classroom once said, "None of us is as smart as all of us!"  So glad to have this board, even

though I don't post very often, I check in on you from time to time and always find some new tip or resource. -- Sue D.