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

disneyfan2008
Posts: 5334
Joined: Oct 2010

I "ONLY hae RADIATION" like not really cancer? I had one nurse say that too me (not in cancer center) and then she said she felt bad. I am greatful of course I did not have go endure what many have-I have seen two very close friends go through years and years of treatment.

Until I joined this group-I never thought i was a survivor (that is why i looked up this site to find out)-a close friend had skin cancer/ surgery and said I am survivor-until then i said I HAD cancer and still do to this day.

Also I was under the assumption my last day of radation I was done with Cancer Ctr until year later I got a call saying time to come back and SEE us!

Denise

 

HOPEFULLY 5 mths until I finish tamoxifen

 

helen e's picture
helen e
Posts: 222
Joined: Sep 2009

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.

disneyfan2008
Posts: 5334
Joined: Oct 2010

never heard 'cancer fraud"..lol

 

I should be completly my fifth year mid Aug  this summer..

 

denise

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

I did not have chemo either. But I still consider myself a survivor. I did have cancer and had a lumpectomy and radiation. I just consider myself to be among the lucky ones who did not suffer nearly as much as some do. I have been on Femera for 2 1/2 years and have 2 1/2 years to go.

I do think about those who have a lot more going on than I did and I wish them the strength to get through it all. I am here for the support that I can give to others.

Hugs,

Georgia

disneyfan2008
Posts: 5334
Joined: Oct 2010

georgia: i totally agree

 

Denise

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

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

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

Ask those ladies that are 30 years post-cancer (I have....)...they 'only' had rads...and usually mastectomies...

Bottom line...you hear those 3 words, it changes your life forever....just like everyone else...no matter what cancer, no matter what treatment.

 

That's my 2 cents....but I've been dead now for 7 years....*grin*.....(6 months to live, 8 years ago...)

 

Hugs, Kathi

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

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

 

 

Double Whammy's picture
Double Whammy
Posts: 2275
Joined: Jun 2010

Those of us who had chemo, had it to reduce our risk of recurrence - probably to the level of those who did NOT have chemo.  I'm pretty sure that's the case for those of us who had chemo for early stage cancer, anyway.  We're all in this survivor game together.  Your cancer is the same cancer that might have traveled outside the breast, making it a higher stage.  Because it didn't (rather they see no evidence that it did) and because of its biology, the risks of chemotherapy outweigh the benefits. We actually risk our lives having chemo, but we do it because we want to live.   Chemo or no chemo doesn't  mean the cancer is  gone forever! 

I'm on a rant right now because I have just been informed that I HAD cancer, it's gone now - by one of my stupid "friends". 

And that's why I continue to hang around with you lovely folks.  We are all in this together and understand.

Love you all,

Suzanne

disneyfan2008
Posts: 5334
Joined: Oct 2010

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

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

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

Best,

Doris

disneyfan2008
Posts: 5334
Joined: Oct 2010

Vino? I assume a DRINK...

i am 53 yrs old and yet to try, stip, taste any alchol....so i'll have a diet coke for you instead! lol

 

Denise

disneyfan2008
Posts: 5334
Joined: Oct 2010

i NEVER HEARD THOSE 3 WORDS...ODDLY..

 

I CALLED FOR MY RESULTS (MIND YOU BLOOD WORK THEY MAKE YOU GO IN FOR MOST TIMES)

mY LONG TIME DR WHICH I STILL HAVE AND LOVE-SAID "IT'S NOT BAD BUT NOT GOOD' THEN HE USED PHRASE

'dcis...NO CLUE WHAT IT WAS -STARTED SEARCH ONLINE AND FIRST THING THAT I SAW WAS "CANCER"...AND WENT FROM THERE.

dENISE

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

It is hard to conscentrate on hearing what you don't want to listen to be described.  I always ask for the paper work, so I can go home and digest it.  

Now after all these years, I have the paper work before visiting the doctor.  There are no more surprises.

I knew what my surgeon was saying but I didn't take in much either.

 

Doris

 

disneyfan2008
Posts: 5334
Joined: Oct 2010

Doris: My daughter now works at the Imaging ctr and got me print out of all my reports for past years..ONLY due to her working there..I would have never asked to see them...

 

NOW I know better..

 

Denise

ColoMom
Posts: 1
Joined: Apr 2013

Hi there - I read your post.  My cancer was the same Stage ) DCIS...I opted for a bi-lateral mastectomy.  I was DONE with all of the lumps and the panic it brout on each month.  I did not have reconsrtuctive surgery.  I have to admit that I felt panic when I read your post about the cancer coming back on your scar line. Did you feel or find a lump? How was it detected if you do not mind sharing with me.  Thank you.

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

 

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.

 

 

 

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1653
Joined: Jan 2011

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!

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Tamoxifen is an old drug and the only one available in 1995 when I began using it.  For me, it didn't work.  I had a tumor the whole time growing in the axilla.  My first bout of cellulitis was in 1996, 18 months after starting Tamoxifen.  It was a simple plumbing problem, bacteria entered via a paper cut, the lymph was block by a tumor and therefore a backup.  No one saw this, they said, "it happens when women have lymph node dissection" (no sentinel node biopsy at the time).   Three months later, I had another even worse bout of cellulitis and was hospitalized.  I was lectured in having disinfected with me and to be extra careful.  I had another infection in 1998 and this time I had pain, eventually a tumor was found and my surgeon (at my request) tried to remove it.  The tumor had sucked in two nerves (reason for pain) and wrapped itself around the large arm vein.  Radiation was needed.  It took a year longer to learn that it had spread to two ribs.  Arimidex gave me 8 years of no evidence of active disease (NEAD).

I tried rebooting Femara in 2011 and 2012 with no luck the way Dr. Ellis said was possible (SABCS 2008).  It works 50% for some women and doesn't for others like me.  I did reuse Faslodex after a higher dose was approved by the FDA from 250 mg to 500 mg and got 11 months out of it.  I thought of retrying Tamo again but with the new and sizable tumors in the left lung, I didn't want to wait for another failure.  I decided it was best to agree this time with my oncologist.

Rita Arditti who was diagnosed with bc at age 39, then 3 years later discovered cancer in the lungs used Tamoxifen for 17 years with great success.  Then she went on the other hormonal and chemotherapy dying at age 74.  She lived 30 years with mets.   You can hear or read her story by copying and pasting the following:

http://mbcn.org/get-involved/details/my-story-rita-arditti/

Tamoxifen is a great drug.  Use it as long as you can.

 

Best of luck to you,

 

Doris

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1653
Joined: Jan 2011

I took chemo, but I think everyone who goes through a cancer diagnosis is a survivor and has carried a very HEAVY load. It doesn't matter, chemo, no chemo, radiation, etc. It is a diagnosis! To me that's the heaviest part of the process. So for those of you who didn't take the chemo, you're still a hero in my book! <3

ah also! Radiation was more mentally overwhelming than the chemo itself! Being exposed to radiation, every morning, not being able to move and have this huge machine all over me...that's crazy!! UGH

 

Love you ladies!

Patti1967
Posts: 186
Joined: Mar 2013

Well they way I have looked at it is, some women have/had it easier then me, some women have and are having it way worse then me but we are all on the same team.  We all have breast cancer, we all want to beat breast cancer and we all know how it feels, no matter what stage, to be told you have breast cancer.

I had chemo, just finished three months ago....a very good friend of mine didn't have to have chemo...we are no different.

What a great group you have here:)

Patti

disneyfan2008
Posts: 5334
Joined: Oct 2010

Patti: I so agree...all the same team..MY very close friend (since they day i was born) has had lung and then Breast cancer-well over a year of chemo-radiation, many many surgeries....but she had helped me through mine (never thought twice about mine being so much less treatment! Sadly her mom died after BC 3 x over about 20 yrs...she was like a mom to me...

 

Denise

sdukowitz
Posts: 250
Joined: Nov 2011

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. 

disneyfan2008
Posts: 5334
Joined: Oct 2010

Thanks for all the thoughts, comments!

 

Denise

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