ER negative Follow-up care

pollyana

I had an ER negative tumor with a high HER-2, which is a very aggressive tumor with a high risk of recurrance. I have completed all chemo and radiation treatments. If my cancer were ER positive I would now go on to tamoxifen and then the new drug just approved. I feel very vulnerable just going to my Oncologist quarterly and taking blood tests to see if there is a recurrance.
Is anyone who had a similar tumor taking any meds to lower the chances of metastasis/recurrance? Or are there any trials that would be appropriate for me?

Thanks for your help.

live42day

Pollyanna,
I too had an ER negative tumor that my Surgeon told me was very agressive with one positive lymph node. I had a mastectomy followed by 8 chemo treatments but no radiation. It has been 19 months since my last chemo and I go to see my oncoligist every 3 months for blood work and check ups, and I see my surgeon yearly. While going through chemo I felt like I was fighting the cancer and when I was through with it I had an odd feeling. It's sort of like what do I do now. Just wait and see? I am not taking any meds as a follow up and am doing fine. We just have to trust our Drs and do self breast exams on the side that is left along with mammograms. I am just thankful for every day of survivorship and try not to worry about every ache and pain. But I do tell my oncologist about anything new. I know how you feel.
Janet

lindatn

Take good care of yourself, diet, excercise and might look into herbs and vitamins. I found giving up sugar,coffe, white flour and all diary has made me feel in control of my life.Drs are opposed to some of this aproach and might not be right for you but it is your life. Linda

jeancmici

If you had taxol along with AC, the taxol has been found to be more effective in ER negative women than in ER positive women - hope that makes you feel a little less apprehensive. And be aware of anything that doesn't feel right in your body and tell your doctor.

Good Luck,
Jean

obliva

I know you are feeling vulnerable. I'm not ER negative, but at the end of my taxol treatment I felt like I was standing on the edge of a cliff. What next? My oncologist told me that they use to do monthly testing on breast cancer patients, but found 1)the women's anxiety levels were always high,and 2) it didn't seem to find any more recurrences than had the check ups only been every 6 months. He said just to get on with living. How would I know to come in for a check up if something didn't seem right. He said if I seemed to have a pain or symptom in an area that wasn't part of my "normal" aches and pains, to call him if this continued over two weeks. So that's what I'm going to try to do. Just get on with life. I know mine isn't at the level of yours, buts try to savor each day.

24242

Yes I too was negative with stage 3 11/21 positive nodes. Chances for reoccurance huge but one can't live their lives worrying. I know stress and worry wasn't working for me before cance and I certainly have decided to change the coarse. In fact I truly believe we are 100% responsible for what happens to me but he trick is in acceptance and moving on. Coping does seem to come more easily with every experience I make it through. Or is that just age.
Cancer has shown me the worst of what life can bring and if I didn't know before how one's life can change in an instance I surely know how, both ends of the spectrum at once sometimes.
Many here have proven doctors wrong time and time again. Yes it is sad to have to accept the lives who have gone before but none of us get out of here alive. I think the sooner we see how short life can be the sooner we will be able to find a life for ourselves, even better than before, if allowed. I not only prove doctors wrong but myself on a continual basis. Now folks I will have to ready myself for the picket line. If having a mother inlaw loosing her battle with her cancer wasn't enough, now I am on strike. One good thing is won't have to use so much of my holidays giving my spouce the help needed. Life does work in mysterious ways. My story can be found in the Gallery under Living well With Cancer. Welcome to the site I hope you find much comfort here.
Be good to yourself always,
Tara

JKAlley

24242 said:

Yes I too was negative with stage 3 11/21 positive nodes. Chances for reoccurance huge but one can't live their lives worrying. I know stress and worry wasn't working for me before cance and I certainly have decided to change the coarse. In fact I truly believe we are 100% responsible for what happens to me but he trick is in acceptance and moving on. Coping does seem to come more easily with every experience I make it through. Or is that just age.
Cancer has shown me the worst of what life can bring and if I didn't know before how one's life can change in an instance I surely know how, both ends of the spectrum at once sometimes.
Many here have proven doctors wrong time and time again. Yes it is sad to have to accept the lives who have gone before but none of us get out of here alive. I think the sooner we see how short life can be the sooner we will be able to find a life for ourselves, even better than before, if allowed. I not only prove doctors wrong but myself on a continual basis. Now folks I will have to ready myself for the picket line. If having a mother inlaw loosing her battle with her cancer wasn't enough, now I am on strike. One good thing is won't have to use so much of my holidays giving my spouce the help needed. Life does work in mysterious ways. My story can be found in the Gallery under Living well With Cancer. Welcome to the site I hope you find much comfort here.
Be good to yourself always,
Tara

Pollyana, I too am er neg and her2 pos at 3+. I'm now finished with chemo and rads but am taking herceptin through a trial. It's because of the over expresion of her2 that I was accepted. Herceptin is a drug that has been approved for metastatic cancer. Obviously, what they're looking at is why wait, maybe it can help prevent the spread. The drug is not with out it's risks and you would want to do some research to see if it's something that interests you. It may be too late for you to get into the trial, I don't know, it would be worth asking if you are interested. I do know there are others who have received herceptin as part of treatments with out being in a study and you could inquire about that as well. For me, being in a clinical trial is a win/win situation. Not only do I have an opportunity to help others with possible future treatments, (like my daughter!) follow up care is more intense in the trials as well. Good luck, and keep us posted. Judy

blossomtime

Your post echos everything I feel. I am also er/pr neg and her 2 pos, 3+, and had 6 pos nodes. So at the end of treatment I felt so uncomfortable not being able to do anything else except hope and pray that I will not have a recurrance. I finished treatment in march of this year. I see my oncologist every 4 months and my surgeon every 6 months. So far this year I have had a bone scan, brain mri and abd ct for symptoms but thankfully all negative. Seems there is always something that needs checking. Now my white count is 2.0 and since it should have come back up by now, I get more blood tests this week. I feel good so am not very worried. Ironically my friend finished chemo 6 weeks ago and finishes radiation tomorrow. She is supposed to take tamoxifen but refuses to fill script. Says too many side affects and doesnt feel that it will make a difference. I cant get her to change her mind. I only wish I had the option to continue taking something so I would feel I am doing something proactive. Anyway you hang in there, we are all here to help each other and listen.

SusanAnne

You didn't say what your PR status was. I'm ER-/PR+, HER2+ and I'm on tamoxifen. They say it also reduces chances of a new cancer in the other breast.

Think about it though. It's not just your oncologist you'll be seeing. You have follow-ups with your surgeon, radiation oncologist, gynocologist, mamograms and self exams. Good luck.

Susan