Stage 2A, Grade 3 tumor, need chemo, radiation but can't take Tamoxifen

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Hollying
New Member


Date Joined Oct 2004
Total Posts : 1
   Posted 10/11/2004 10:05 PM (GMT -7)   
Hi, I am looking for information- hormone receptors are negative so Tamoxifen is not an option after chemo starts on Friday. 6-7 treatments of chemo then radiation. I am not sure what to do since I will nto be able to take Tamoxifen. Any ideas? Maybe remove the ovaries so there is no estrogen production? HELP!

postal2
Veteran Member


Date Joined Jul 2003
Total Posts : 1106
   Posted 10/12/2004 12:22 AM (GMT -7)   
I really can't help you as I was hormone receptor positive and am on Tamoxifen. I don't understand why you would have to take out your ovaries if you are not hormone recpt. positive. I know there are ladies here who can answer this, but I'm sorry I can't. I would like to welcome you though and say you are in a great place to get support and information. I am sure you will get some answers here. Hugs, Gail
 It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.   Elisabeth Kubler Ross


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 10/12/2004 3:53 AM (GMT -7)   
Hi and welcome, Hollying! Mine was also a stage IIA (2.5 cm, node neg) but I was strongly ER/PR+. I am in my last 8 months of Tamoxifen, which followed 4 chemos of AC and rads to the breast (had lumpectomy).

This debate to have an oopherectomy or not comes up often and you are sure to get lots of comments and great information. How old are you? If you are pre-menopausal, this will throw you into sudden menopause, which can be difficult on many people. There are long term changes that will be irreversable. My opinion is to talk to your onc and then get a 2nd opnion. You might consider chemical menopause, in the form of injections, to shut down your ovaries, and give it sort of a trial run before opting for surgery.

How much benefit will you get if you have an oopherectomy? If your tumor was negative, how much will this reduce your chance of recurrance? Of a new occurance? these are questions to ask the doc. You will have to decide if the consequences and side effects outweigh the risk of not doing surgery.

This is not easy, and I would encourage you to research as much as possible, weigh all the pros and cons, get feedback and then do some soul searching. I know of gals who regretted their decision to remove the ovaries and gals who were did not regret it. There is no one size fits all.

Good luck-
Lori


Post Edited (Tavish) : 10/12/2004 8:31:51 AM (GMT-6)


MNlady13
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Date Joined Jul 2003
Total Posts : 2044
   Posted 10/12/2004 7:22 AM (GMT -7)   
Holly, I can't answer your questions either since I was hormone receptive and took Tamoxifen for five years. I just wanted to welcome you to the board. I am sure someone will give you some feedback on being ER/PR negative. Good luck. Lauri
"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.


jessiecat
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Date Joined Jan 2004
Total Posts : 693
   Posted 10/12/2004 7:35 AM (GMT -7)   

Hi,

I am ER/PR - as well.  That means that your cancer was not caused by estrogen, nor was it being fed off of the estrogen in your body.

If you have your ovaries removed you will not be preventing a recurrance of another ER/PR- tumor. All you would be doing is decreasing the  odds of the chance of a recurrance of an ER/PR+ tumor.

Some people can have one cancer that is ER- and then have another that is ER+. But that is rare.

Also, you are doing the chemo and the rads and you are doing all that you can for THIS tumor- which is now GONE. Removing your ovaries will not change your current situation. And it might make you feel worse overall.

I don't know how old you are or if you are pre or post menopausal but there is a lot to weigh in terms of your ovaries staying or going.

I have chosen to keep mine for now.

You really ought to weigh all the pros and cons to this before you make an irreversable decision.

NOW- did you know that ER/PR- cancers ARE MORE RECEPTIVE TO CHEMO??? According to the ACS if you are ER- chemo works better on your cancer!

Good luck to you!

Jessie

 

 


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 10/12/2004 8:19 AM (GMT -7)   
I really don't have any information to help you, so I will just say welcome and let the others share their knowledge. As you can see there are others here who have the same type of pathology, like Jessie and can help. Hugs MK


wackygal
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Date Joined Jul 2003
Total Posts : 857
   Posted 10/12/2004 12:39 PM (GMT -7)   
Hi Holly-
I too am Er-/Pr- and was dx with Stage IIA (4.5 cm) tumor in 2001. I had a mastectomy, chemo (AC + FEC + taxotere) and also had Herceptin weekly for one year, which is for tumors that are strongly positive for the her2neu protein. Do you know if you are positive for that? I also had 33 rad treatments, and low-dose chemo during rads. I know how you feel about being "left out" of the whole Tamoxifen thing... it's hard to read encouraging articles and get half way thru and realize "oh, thats for hormore positive cancers". It can get very discouraging!! BUT there ar new for treating breast cancer being approved every day, and so we really have to stay hopeful.

let me know if there is anything i can try to help with...i too am struggling with the question of whether or not not have my ovaries out... i am meeting with my onc next week for my 6 month followup and will talk to her about it then... so far I had left them in because I was tired of being a 'patient' for so long and I needed a break from it all, but now I may be ready to take that step. we'll see.

good luck and please keep us posted on your situation!
hugs
Stefanie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004


DiVanDyke
Veteran Member


Date Joined Jul 2003
Total Posts : 734
   Posted 10/13/2004 9:41 AM (GMT -7)   
Hi Holly,
I am also ER-. I sure do understand how you feel. I had a hysterectomy but that was because they found the beginnings of cervical cancer.
I hate to say this at this time considering the Vioxx thing, but I take 400mg. of Celebrex to prevent another recurrence. That is all that I have. I will continue to take it as long as I can get it. It was recommeded for cancer by Judah Folman a leading cancer researcher. After my recurrence of a 5cm tumor, I am doing well after four years. Doctors say it is a miracle though, and I fully believe that
Welcome to the board.
I will share anything I can with you. I am leaving for Chicago though and won't be back until Sunday. I may be back on the board before I go though. Hugs, Di

wackygal
Veteran Member


Date Joined Jul 2003
Total Posts : 857
   Posted 10/14/2004 3:59 PM (GMT -7)   
Di- Are you referring to Dr. Judah Folkman, the leading researcher and visionary on the whole theory of angiogenesis???? What does he say about celebrex?? i am so curious!! do tell....
stefanie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004


Chemosabe
Regular Member


Date Joined Dec 2003
Total Posts : 257
   Posted 10/14/2004 5:42 PM (GMT -7)   
Welcome!
 
Thought I'd weigh-in on the ovary discussion as I just went through meeting with 4 different docs about this. 
 
Like many of us who are er/pr negative, my tumor was stage IIB, big, and strongly Her2/neu+.
I had chemo before surgery, in the hopes of shrinking the tumor. And, boy, did it work! That sucker shrank to a pea size.
 
I had AC followed by Taxol, then the surgery and rads. I really wanted Herceptin, but my oncologist said that I would have to pay for the total cost since my insurance wouldn't cover it (because it is not the "standard of care" for those who are just stage II).
 
I, too, wondered about removing the ovaries and went to many doctors in search of the right answer.  So, after many appointments and some serious outlay of cash, I was told by 2 to remove them and by 2 to keep them in! (I guess the moral of the story is go to an odd number of "experts"!)
 
What I really took to heart was what my surgeon said, which was basically, "I wish I could tell you what the right answer is here, but there simply isn't a clear path.  We just don't know enough about these types of cancer in young women and what effect, if any, the ovaries may play in the future."
Now, I am ONLY considering an ooph due to other factors, such as hormonally triggered migranes and ovarian cysts.  I do not think it would be wise to remove them unless you had other issues as well.
 
But, again, I think you should research and get more info first.
 
Best of luck to you. I wish there were some easy answers with this whole cancer thing!
Hugs,
Erin


kmonke
Regular Member


Date Joined Jul 2003
Total Posts : 352
   Posted 10/16/2004 2:57 PM (GMT -7)   

First and foremost "Welcome" to this board.  If nothing else you will get a variety of information.  We have all been affected by BC a little differently.  I too was ER/PR- with a Stage IIA 2.5cm tumor.  I had a radical lumpectomy followed by Adriamycin and Taxotere combination (it was a study that the results should be out on any time), followed by 36 rad treatments.  I also had lymph node involvement.

This was all 5 years ago and I was just given an 'all clear' earlier this month.  I never considered the Ooph because I was periomenopausal at the time of surgery and treatment and went into instant menopause.  Other than hot flashes that I have not been able to take anything for, I feel very fortunate.  Like you, I felt 'left out' when I couldn't take Tamoxifen, but guess it wasn't something I needed.  Unlike so many on this board, I didn't have the means to research a lot before decisions were made on my course of action.  I trusted my Dr, my ONC and God for everything.  I only became involved with this wonderful support group following my treatments.

Get as much information as you can, but in the end you and your Dr's will need to make the decisions on the treatment appropriate to your tumor, stage, your age, etc.  Whatever the decision, please keep us informed as we will be with you in prayer and in spirit.  Amazing how we circle around those MRI machines and in those treatment rooms, without you even knowing we are there.

Hang in there and keep posting.  Good luck and God Bless,

Kitty


DiVanDyke
Veteran Member


Date Joined Jul 2003
Total Posts : 734
   Posted 10/19/2004 6:05 PM (GMT -7)   
Hi Stephanie and all,
Oh dear, yes, in my hurry to get out of town I misspelled his name. This information came in an article he wrote about having less chemo at a time over a longer period. He said that if an antiangiogenic drug was not available to take Celabrex, a Cox2 inhibitor to fight inflamation, I believe. That is also why I try to avoid sugar and carbs, it's anti inflamatory, I believe. Many doctors have been giving Celebrex to prevent recurrences.
Well, it's like everything else. We take the information we have and make the best decision we can. Hugs, Di
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