1. < Breast Cancer

Follow up for mastectomy patient with regards to reccurence

Posted by ljoh @ljoh, Feb 7 9:49am

I am a ten year survivor of stage one, grade 2 invasive ductal carcinoma. I opted for a bilateral mastectomy since my cancer was not detected by a recent mammogram, and I felt that there is no other reliable screening device for those of us with “dense” breasts. Since my surgery 10 years ago the only follow up care I receive is a yearly breast exam. I have asked for additional bloodwork that may be used as markers for reoccurrence or imaging, but have been told by several oncologists that unless I had “symptoms”additional screening is not necessary and might provide false positives ( ie they are not reliable…) and that there aren’t any bloodwork markers. I have fortunately had no symptoms but have recently experienced the loss of two dear friends whose cancers did return shortly after their 10 year reprieve, only after their cancers had metastasized. I am wondering if this is the typical type of follow up that most oncologist prescribe. While I am so very grateful to not have any unnecessary testing and the anxiety of waiting for results, I live with the constant anxiety that when it returns it will be too late to do anything.

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Mentor
Miriam, Volunteer Mentor | @mir123 | Feb 11 1:00pm
In reply to @flygirl747 "I found away to do meditation one minute at a time. It's not that you do..." + (show)
@flygirl747

I found away to do meditation one minute at a time. It's not that you do not have patience, you body is still telling you that you are in fight or flight mode. Start with 1 minute and tell yourself you have done well to start. When you feel ready try for 1 minute 30 seconds or 2 minutes. Again tell yourself you are doing well. There is no judgement. I find if I put myself in a quiet room I do better. Somedays it just a minute, other days it's 20 minutes and I might even fall asleep. You are enough.

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This is great advice. I also like a slow silent walking meditation. Take a breath with each step. More fun outside but fine inside. Try starting with 3 minutes. I actually used to do this at work when I went to get a hot drink. "You are enough" is just the best--thanks for encouraging us all.

REPLY
ljoh | @ljoh | Feb 12 11:50am
In reply to @flygirl747 "I found away to do meditation one minute at a time. It's not that you do..." + (show)
@flygirl747

I found away to do meditation one minute at a time. It's not that you do not have patience, you body is still telling you that you are in fight or flight mode. Start with 1 minute and tell yourself you have done well to start. When you feel ready try for 1 minute 30 seconds or 2 minutes. Again tell yourself you are doing well. There is no judgement. I find if I put myself in a quiet room I do better. Somedays it just a minute, other days it's 20 minutes and I might even fall asleep. You are enough.

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Thanks so much for this encouraging advice. You made my day and have given me a new goal for the New Year!

REPLY
angiemal | @angiemal | Feb 13 9:24am

Yes I think the key is to focus in the things we can control . What is that? Nutrition , Exercise and Mental Health.
This diagnosis forced me to challenge myself to do things I haven’t done before . For instance going with a therapist, and start talking about my feelings, this practice has brought to the surface things that happened long time ago and that I didn’t heal. Now , I’m starting to heal and I feel amazing. Cancer is here to teach me something and I want to learn being a good disciple. however I don’t let cancer be at the center of my life , maybe more like a gray cloud in the middle of a blue sky.

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susan7656 | @susan7656 | Feb 13 10:16am

I’m a big fan of the Waking Up app for meditation. It has many, many different highly skilled meditation teachers. I’ve used it for 6 years. Meditation is a practice. Even if you “think” you’re not doing it right, you’re really are. Practicing mindfulness and self compassion have strengthened my ability to be present and not get lost in useless chatter in my head or running “what if” catastrophe mental scenarios.

When I was diagnosed with breast cancer, I was surprised on that day. I felt the impact of “oh I’m not in control of this.”

But, honestly, the same day I was diagnosed, I could have been in a terrible car accident or had other things happen to my physical body that would have also required dramatic, ongoing, life-changing medical treatment. But instead of a car accident, it was a breast cancer diagnosis.

I like sharing my story with others because I feel like a mammogram saved my life. I can’t keep that information to myself.

Thich Nhat Hanh says the unexpected (hardship) is the first arrow that hits you. But the second arrow is “suffering” — and we have control over how we respond to the first arrow.

I hope this helps someone who is reading this today.

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LisaY1 | @lisay1 | Feb 14 8:15pm

I am a survivor of stage two invasive breast cancer with 4 lymph nodes as well. My cancer was detected in 2021. I have MRI's yearly to look for any issues. How do they do your exams?

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1 reply
ljoh | @ljoh | Feb 15 8:41am
In reply to @lisay1 "I am a survivor of stage two invasive breast cancer with 4 lymph nodes as well...." + (show)
@lisay1

I am a survivor of stage two invasive breast cancer with 4 lymph nodes as well. My cancer was detected in 2021. I have MRI's yearly to look for any issues. How do they do your exams?

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The only thing that happen at my yearly exam ( and this has been the case for the past 10 years) is my oncologist asks if I have an issues and then she feels around the breast implants. Since going on Letrozole three years ago. She did Order a bone scan which showed significant bone loss, so she recommended that I stop taking the letrozole and have a yearly reclast injection to help with the bone loss. I did this, with a severe reaction, and I have not been back for my yearly exam since.

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1 reply
LisaY1 | @lisay1 | Feb 15 9:41am

I have Rheumatoid Arthritis and have blood tests done every 6 months to monitor the effects of the meds I'm on. My Rheumatologist saw my inflammation levels climbing very high. She kept asking about RA pain and I was reassuring her I did not feel a flare but I feel it was actually the cancer. For my breast cancer with lymph node involvement it did show in my blood work as far as I'm concerned. Best wishes🌺

REPLY
LisaY1 | @lisay1 | Feb 15 10:02am
In reply to @ljoh "The only thing that happen at my yearly exam ( and this has been the case..." + (show)
@ljoh

The only thing that happen at my yearly exam ( and this has been the case for the past 10 years) is my oncologist asks if I have an issues and then she feels around the breast implants. Since going on Letrozole three years ago. She did Order a bone scan which showed significant bone loss, so she recommended that I stop taking the letrozole and have a yearly reclast injection to help with the bone loss. I did this, with a severe reaction, and I have not been back for my yearly exam since.

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My oncologist has recommended a daily calcium supplement with Vitamin D. I also have been prescribed Anastrazole which is generic for Arimidex since the day of my surgery. The current plan is to stay on this for ten years. My diagnosis was Stage 2 due to the involvement of 4 lymph nodes in my right arm. As I have mentioned previously they do MRI's yearly. I'm not sure how long they will continue with this. I do feel my Oncologist really listens if I am concerned about something. I was experiencing pain in my breasts and she had sent me for a sonogram. It was determined it was scar tissue that was causing the pain (hopefully). I understand how you feel, it's always a constant worry. Congratulations on your ten year mark! That's a very good sign. Try not to let it consume your life (easier said than done) and remember you beat it once and you are STRONG!🌷

REPLY
1 reply
ljoh | @ljoh | Feb 15 12:16pm
In reply to @lisay1 "My oncologist has recommended a daily calcium supplement with Vitamin D. I also have been prescribed..." + (show)
@lisay1

My oncologist has recommended a daily calcium supplement with Vitamin D. I also have been prescribed Anastrazole which is generic for Arimidex since the day of my surgery. The current plan is to stay on this for ten years. My diagnosis was Stage 2 due to the involvement of 4 lymph nodes in my right arm. As I have mentioned previously they do MRI's yearly. I'm not sure how long they will continue with this. I do feel my Oncologist really listens if I am concerned about something. I was experiencing pain in my breasts and she had sent me for a sonogram. It was determined it was scar tissue that was causing the pain (hopefully). I understand how you feel, it's always a constant worry. Congratulations on your ten year mark! That's a very good sign. Try not to let it consume your life (easier said than done) and remember you beat it once and you are STRONG!🌷

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Thanks so much for sharing. I wish you all the best on your journey towards peace of mind and good health! Stay positive.

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