Hormone Negative

Unknown

I'm having a hard time finding other women who are hormone negative, like me. I'm also Her2neu negative. Most of the literature I read says that I have a poorer prognosis because of this, which makes me depressed. I was diagnosed in Oct. 2003 w/stage 1 BC. I had lumpectomy, chemo, and radiation. I'm 40 yrs. old.

Any other survivors out there who were hormone negative? It would be very encouraging to me. Right now I really need some hope. Thanks in advance.

Jade

inkblot

Hey Jade:

I can't imagine your not finding more hormone neg. women. There seems to be quite a few of us here.

I was hormone negative also. (Was Her2/neu positive though) Perhaps you need to rethink the scenario about being hormone neg..

When one is hormone pos. then one is a candidate for Tamoxifen, which has been shown to be helpful.
It is not, however, an infallable or 100% reliable drug, as women do have recurrences and/or mets while taking it. I wouldn't want to try to convince them that their having been hormone positive was a big plus. Truth is that things work for some people and not for others, even with the same dx..

Saying that our prognosis is less bright, due to being hormone neg. just means (to me) that we don't take aromatase inhibitors to "up" our chances of not having a recurrence and/or a new breast (hormone pos.) cancer, during that 5 years of taking it. However, women who are hormone pos. and don't take a.i's, likely have about the same rate of recurrence/mets as those who are hormone neg..

Perhaps someone can provide some specific stats on this???

In my own case, since I was Her2/neu pos. my statistical chances of recurrence/mets are a bit higher still, since Her2/neu is a more aggressive element. How valuable is that bit of info to me, all things considered? Not terribly actually. Do I worry about it? No. What's the point? There it was and here I am and worrying isn't likely to change anything...aside from perhaps lowering my resistance and having a negative effect upon my immune system. THAT, we don't need!

So, chin up and think about all the wonderful things ahead of you. Think about all the opportunities you have to show people your love. The kindnesses you can share. The smiles you can flash to brighten someone's day a bit, who may really need it at that moment. In the end, percentages are just a roundabout figure, (often arrived at through questionable methods of computing) because the medical/scientific community absolutely must have "percentages" in front of them in order to continue computing. In truth, we are each so unique and individual, there's no predicting who's going to remain healthy and who isn't, based simply upon hormone status. No one factor of our pathology report is predicitve, in and of itself, as to what our future experience will be. We could literally make ourselves sick trying to apply reason (and figure out our exact percentages) to something which holds so many variables. Sort of like the Farmer's Almanac predictions: Some years it's more right and other years, it's more wrong. Why is that, since they use the same computing methods each year?

I'm 4 years out from dx now and I'm not willing to give my energy and thought processes to worrying about exactly what my chance/longevity of disease free survival may be. I consider that each day I live is a wonder and a gift and I want to appreciate everything and give to other's. If and when I should ever again have active disease, I will deal with it then and that's the only time it deserves my energy and attention. In the meantime I take excellent care of myself and enjoy my life. Just as we can make healthier choices in our diets, we can make healthier choices for our emotional well being. As all of us here know, none of our recovery processes are easy or simple.

Unaddressed or overwhelming fears can be paralyzing and counter productive. It's worth taking the time to work them out and put them to bed. Seek professional counseling if you feel stuck in your healing. It's definitely worth the fight to regain balance and perspective, to get to healing and move forward.

Focus on the positives as much as possible and when the blues creep in, don't doubt yourself...go ahead and have a blue day but stick to your convictions and carry on. Full steam ahead. The truth is that there's no time to waste in this life. Every day is special and important and when we can embrace that, a lot of the "what if's" fall away and we find ourselves caught up in the sheer joy of living and giving. A far better place to be.

Hope that may help you in some way.

Love, light and laughter,
Ink

seeknpeace

Hi!

I, too, am hormone negative. They never tested my her2neu, I was dcis, but, a large and aggressive form. It is funny, I did not understand and when the oncologist told me that I was negative, I got so excited. I thought it was a good thing. ha. But, of course, found out differently.

I am a year out and I understand how you feel. When I first studied the hormone issue and read about my kind of cancer, I was so upset, but, I guess that time just eases the fear, or keeps it from being in your mind all the time.

Hang in there. Like Ink said, try to not focus on the negative, if you can. It can be easier said than done and it may be an issue of time passage. Good luck and keep us up to date.

Jan

roxanne53

Yes Hang in there, Jaded.
I am Her2/neu positive and hormone receptor positive so mine is a bit opposite from yours.
My doc said that good to have homrmone positive and not so good to have the her2 positive.

I was pretty unsettled about that too. Over time, it appears that one adjusts to the information and treatment that follows.
We just keep moving forward and doing what is necessary to be alive

Take care. Hugs
Roxanne

SusanAnne

Hi Jaded,

When I was first diagnosed, I spent an awful lot of time trying to find someone with the same diagnosis as me. After doing much research and speaking with others I realized that even if I did find someone the chances of us responding identically to treatment (even the exact same treatment) were slim to none! It is a waste of your time and energy to worry about how others respond. Grab onto the fact that you caught your cancer EARLY. You have the best chances, regardless of your hormone status. You have done all and everything possible to reduce the chances of recurrance. Now if you take care of yourself as far as diet, exercise, stress reduction and follow-up care, relax and enjoy your life as it unfolds! It is a fine line between being caught up in the past because of what you went thru and using what you have learned because of it and living a good life in spite of it. Make the choice to live a good life!

Take care,
Susan

tlmac

Hi Jade, My cancer was ER++ and HER2NU- and I'm now taking Arimidex. Guess I just wanted to say that hormone receptor negative status may be the trade off for a better quality of life. I suffer extreme joint pain and neuropathy in both hands as a side effect of the Arimidex. The pain shooting down my arms frequently wakes me up at night and I continue to take Bextra, despite warnings of heart attack and stroke danger, because I'm not sure I could stand the pain. It's important also to remember that some of us will recurr despite Tamoxifen, Arimidex or Femara. There simply are no guarantees.
What we can all do, regardless of receptor status is:
1. Eat healthy, regardless of cravings or depression.
2. Keep the weight off or lose it, regardless of how difficult this is. There is a significant increase in recurrence for overweight survivors.
3. Make the time to exercise on a regular basis.
4. Do whatever it takes to support your body's own immune system and keep it strong.
I've come to believe that this gives all of us our best chance for long term survival.
Keep thinking positive thoughts.
terri

Unknown

tlmac said:

Hi Jade, My cancer was ER++ and HER2NU- and I'm now taking Arimidex. Guess I just wanted to say that hormone receptor negative status may be the trade off for a better quality of life. I suffer extreme joint pain and neuropathy in both hands as a side effect of the Arimidex. The pain shooting down my arms frequently wakes me up at night and I continue to take Bextra, despite warnings of heart attack and stroke danger, because I'm not sure I could stand the pain. It's important also to remember that some of us will recurr despite Tamoxifen, Arimidex or Femara. There simply are no guarantees.
What we can all do, regardless of receptor status is:
1. Eat healthy, regardless of cravings or depression.
2. Keep the weight off or lose it, regardless of how difficult this is. There is a significant increase in recurrence for overweight survivors.
3. Make the time to exercise on a regular basis.
4. Do whatever it takes to support your body's own immune system and keep it strong.
I've come to believe that this gives all of us our best chance for long term survival.
Keep thinking positive thoughts.
terri

I want to thank everyone for responding. I have these huge bouts of depression w/all of this. I'm feeling better today. I am going to try to work hard at keeping things in perspective and being thankful for each and every day. It's also good to know that I'm not alone in this fight.

Jade

epgnyc

Hi, Jade. I hope it's not too late to respond to you. I had exactly the same diagnosis - Stage I, er negative and hr2neu negative - except I was diagnosed in May 2003. Being er negative used to bother me a lot....it made me feel like I was among the few out there flying without a net! But I think time eases these concerns, since I rarely think about it any more. I guess knowing that I did everything I could at the time to give myself the best odds has made me let go of the things I cannot control. I did read last year that Dana Farber in Boston has started doing research into er negative breast cancer....I guess looking for possible life-extending medications, etc. So while it may seem like nothing is happening for we minority er negative women, behind the scenese they're doing research on our behalf. I hope with time your concerns will lessen as well. Good luck.

lynne40

Hi Jade,
I had the same diagnosis as you in May 03 and I had a lumpectomy and chemo and I opted out of radiation. There are aloy of us out here. I guess no one ever really stressed to me that it would be so much better to be "positive". Cancer is c ancer and I didn't feel any more unlucky to be hormone negative , and as others have stated the drugs that you take for 5 years have a whole slew of side affects that everyone tolerates differently. I am not a big believer that chemical substances taken into the body are the end all be all. So try to take a deep breath and realize that even the same diagnosis, the same age, etc doesn't gurantee the same outcome! We are all individuals(thank God)and in some ways that makes the cancer journey a solo one. everyone's outcome will be different. Try not to worry and enjoy your life.There are no gurantees and we are still here so that says something! Hugs,
Lynne

Sullivan

unknown said:

I want to thank everyone for responding. I have these huge bouts of depression w/all of this. I'm feeling better today. I am going to try to work hard at keeping things in perspective and being thankful for each and every day. It's also good to know that I'm not alone in this fight.

Jade

Hi my name is Pattie and i have er/pr neg. also and i have had a **** of a time trying to find info. It too makes me depressed, im 44yrs. and 2003 was my surgery and chemo and rad. im so tired all the time and just cant seem to get moving. I know that the other ladies advice is good but still i cant help wonder what the negitive means for us! my e-mail is pattie_sue1978@yahoo.com if you would like to talk more. good luck....