Really Hard Days ...

Posted by angiemal @angiemal, Jun 28 6:06pm

I was diagnosed with Breast Cancer Stage 2 , almost three months ago. I had my surgery and I´m about to start Radiotherapy while wating for the Oncotype results to define if I´m going to need chemo or not...

Only thinking in the scenario of loosing all my hair , having everyone wondering if I have cancer and the hardest part communicating my child that is 8 years old that her mother is sick is making me cry like a baby. How do you handle this? I ´m trying to tackle one step at the time as I don´t know yet if I´m going to receive chemo or not but I´m really worried about it ....

Any advice would be helpful... thanks for reading!

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@windyshores

@angiemal do you have your pathology results: ER, PR, HER 2? Waiting for the Oncotype is very stressful. I got an Rx for Ativan which I barely used but knew it was there!

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Yes ER and PR positive and HER2 negative. Yes I repeat my self all the time , there are only three things you need to worry right now , Having good food , continue lifting weight at the gym and my mental health. No easy though ....

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You should wait for the test which determines what therapy you need before you start radiation. If you need chemo that should come first. The test results might also make you feel less frightened and more hopeful. I was all ready for chemo until the test indicated it wouldn’t be necessary. Stay positive and wait for results. You may be able to paint a much more positive picture for your child.

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@jgallagher04921

I am 1 year out from my DM. I was petrified at thought of needing chemo. We celebrated when my oncotype came back that I didn't need it. As of right now however, PART of wishes I did get chemo. I deeply fear recurrence but if I had chemo I think my mind would be a bit more at ease. I have not communicated this to my family. I was so against it from the beginning they would think I've lost my mind to say part of me now wishes I got it.
But if I get a reccurence and have to have I know I will be ok, even though my hair is the only thing I like about my looks. I would for sure get a wig, and I know I woyld be ok because I made it through DM and ovary removal surgeries. When I talk to people who had chemo I have a guilt feeling that I didn't have to have it .
I understand your fears!
Please believe that either way, you will be fine.
As far as communicating to children, we told our son the day I got the results. After I asked him how he felt about us telling him and not waiting for " a better time?" Or keep anything from him for his protection. He said most definitely he was glad we told him right away and gave him all the info. We offered him to come to any appointments but we wouldn't ask him. We would just tell him when I had an apt and he could let us know if he wanted to come. He came to 2 apts and was with us when I had the DM. He was in high school and just turned 17 when I was diagnosed. May God grant you peace about your worries!

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Thank you so much for your words , Yes I think the other part waiting ahead is the fear or recurrency....I´m trying to take one step at the time but is not easy at all.

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@engelwags

You should wait for the test which determines what therapy you need before you start radiation. If you need chemo that should come first. The test results might also make you feel less frightened and more hopeful. I was all ready for chemo until the test indicated it wouldn’t be necessary. Stay positive and wait for results. You may be able to paint a much more positive picture for your child.

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Hi ! Thanks for taking the time to answer. How did you manage to be ready for chemo?.

I don´t live in U.S , I´m from Colombia so the tests results could take even longer , that´s why my oncologist told me to begin with Radiotherapy and Tamoxifen . I will have 5 sessions next week. Hopefully that would be all that I need.

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@angiemal

Thank you so much for your words , Yes I think the other part waiting ahead is the fear or recurrency....I´m trying to take one step at the time but is not easy at all.

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I completely understand. Waiting is so so hard!!! I had a blood test a few weeks ago because I have been battling exhaustion. I checked my chart no joke every 30 mins waiting for the results and that's all I could think about. It is hard, but you will get results. And my husband told me " don't make waiting hard, it only makes you stress and won't make the results come any faster." You got this girl. 💪

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@windyshores

@rom828 didn't the Oncotype also tell you that chemo would be of no benefit? Chemo works best on cancer that is fast-growing, I was told.

I am 9 1/2 years out from a highly hormonal cancer, grade 3, with lymphovascular invasion (cancer cells in my lymph vessels but not nodes). I did letrozole for 5 years, no chemo, since Oncotype was 8 (despite high grade). My report from Oncotype showed no benefit from chemo. I think that is different from it not being "needed," Maybe ask your doctor to clarify this!

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Yes. Sorry I should have chosen different words. How it was explained to me was.... no benefit to if a recurrence comes back or not. My survival rate was still the same whether I did chemo or not. But now I can help but think what if there were an traces of cancer left behind. I had no chemo to kill it. But maybe being on an AI would be enough to not allow any traces to grow?? I should ask my Dr this.

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@jgallagher04921

Yes. Sorry I should have chosen different words. How it was explained to me was.... no benefit to if a recurrence comes back or not. My survival rate was still the same whether I did chemo or not. But now I can help but think what if there were an traces of cancer left behind. I had no chemo to kill it. But maybe being on an AI would be enough to not allow any traces to grow?? I should ask my Dr this.

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@rom828 yes your doctor can explain how helpful the aromatase inhibitors are for hormonal cancers like ours. Again I had grade 3 and cancer cells in my lymph vessels and after 5 years letrozole, no chemo, am 9 1/2 years out knock on wood.

I did another test after 5 years- the Breast Cancer Index- that showed high risk but no benefit from further treatment with an AI. They have changed the risk categorization since then. My risk was 5.7% and they found that patients interpreted that "high risk" label with a lot of fear, though it is in reality a pretty low risk and similar to the Oncotype's low risk for me.

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@windyshores

@rom828 yes your doctor can explain how helpful the aromatase inhibitors are for hormonal cancers like ours. Again I had grade 3 and cancer cells in my lymph vessels and after 5 years letrozole, no chemo, am 9 1/2 years out knock on wood.

I did another test after 5 years- the Breast Cancer Index- that showed high risk but no benefit from further treatment with an AI. They have changed the risk categorization since then. My risk was 5.7% and they found that patients interpreted that "high risk" label with a lot of fear, though it is in reality a pretty low risk and similar to the Oncotype's low risk for me.

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@windyshores how did you manage the fear of recurrence? , I guess that is something challenging as well after treatment.

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@angiemal

@windyshores how did you manage the fear of recurrence? , I guess that is something challenging as well after treatment.

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@angiemal it is trite and easier to day than do, but it does "go on the back burner."

A few months before my cancer diagnosis one of my kids was hit by a car while walking in the city. ICU for a month, rehab inpatient for a month, outpatient rehab. To be honest I barely noticed my cancer. The hospital alternated my mastectomies and my child's brain procedures so I could take care of them. Even now, when I recount that year, I forget my cancer.

I don't recommend that as a way to put it on the back burner, however! For most of us, time alone does that.

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@windyshores

@angiemal it is trite and easier to day than do, but it does "go on the back burner."

A few months before my cancer diagnosis one of my kids was hit by a car while walking in the city. ICU for a month, rehab inpatient for a month, outpatient rehab. To be honest I barely noticed my cancer. The hospital alternated my mastectomies and my child's brain procedures so I could take care of them. Even now, when I recount that year, I forget my cancer.

I don't recommend that as a way to put it on the back burner, however! For most of us, time alone does that.

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Dear @windyshores:
My broken heart goes out to you and my spirit's being strengthened upon reading your moving story; for I lost my beloved son more than 2 decades ago in an accident near the campus of University of Pennsylvania when he was a college junior attending PENN and I felt like a walking death ever since...
I truly admire your inspiring courage and strength that continue to help people along this journey in spite of your own challenges in life! Thanks for sharing your experience to help us!
God bless!

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