11 Things Metastatic Breast Cancer Patients Are Talking About

by GregP_WN

There are over 1,200 Metastatic Breast Cancer patients registered at WhatNext. These are some of the conversations they are having about the issues they are facing.

Metastatic Breast Cancer Info

Just curious about how long everyone has been living with cancer, or I guess if you're in remission, how long has that been? I am told I might have to have treatments periodically for the rest of my life. That sounds scary. ~JulesMom

I had a large melanoma in 1964 as a very young woman. Then 6 years ago had a series of sarcomas. Then, every 6 months I go to my dermatologist & get a squamous cell or whatever the other skin cancer is called, removed. It's just life, no big deal anymore. ~ Molly72

Read more responses to this question HERE.

Port Pain 

I have a 5-year-old port. Anyone else have a pain issue with it? It's been no problem for these 5 years. Now when my cat steps on it, sometimes when someone hugs me, and a couple of times when I sneezed or moved wrong, I get a searing pain. I guess you'd say. It's a pain that is like icy cold. ~Grandy

I have had my port for four years. Usually, it is no trouble. I have woken a couple of times though and experienced some aching pain at the site but after a time it dissipates. ~ Lynne-I-Am

Read more responses to the question HERE.

I have bone mets and was in remission on Ibrance, but my tumors are growing again. Doc wants me to do Carboplatan and Abraxane weekly for six months and then if in remission, to try options thru Stanford or UC. ~ PinkPeony

Hi PinkPeony, I have stage 4 Tnbc mets. I've been on all the above and more. Carbo & Abra should be a lot easier for you to tolerate compared to tax & cytox. When I was on Carbo they gave me a combo with gemcitabine which worked wonders. As I traveled to CTCA,UNC and MD Anderson, all places recommended the exact same so ask your Onc about them. It even caused my hair to grow back. ~ TracyT

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Nerve Block Procedure

Has anyone had a nerve block? My pain management doctor mentioned this to me and I don't know anything about it. ~ Gap122041

Yes, I did have a couple nerve blocks when I developed RSD after breaking my wrist. It helped tremendously. I couldn't have done physical therapy without it.

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The "cancer card", have you used it before? What was the situation and why did you use it?

One evening I really wanted some ice cream. I asked my husband if he would go out to get me some. He said " but I have my pajamas on", and I said, " but I have cancer". He went out to get it. ~ AngelaVT

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Do I need a second opinion before treatment starts? ~ Lily

I would get a second opinion. I did and went with my second opinion doctor and hospital. So glad that I did. Wishing you the best. ~ Judytjab

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I will begin taking Ibrance soon because My tumor markers are increasing on Xeloda. What length of time have patients been on it? Have tumor markers reduced? What are common side effects? ~ ConnieGuth

I've been on ibrance since June 2015. I'm now on 75mg, lowest dose as my white blood count is always low and I've gotten sick very frequently, low immune system. But I'm still here and that's most important! ~  DianaLynn

 Read more responses to this question HERE.

The Fear Of Dying

How much does fear of dying affect your decisions? Where do you draw the line between dealing with the side affects of treatment - which are worse than the disease - and quality of life?~ AnnieKell

I am not personally afraid to die. The worst that will happen will be that my Faith in the Lord Jesus Christ is unfounded and I will simply cease to exist. But, if my faith is right, and naturally, I believe it is, I will wake up in Heaven when I leave this earth. What could be better than that? ~ LiveWithCancer

Read more responses to this question HERE.

How can I live a little longer than 5 years? ~ Aby

Becoming very proactive about your health goes a long way both to boost your treatment and healing, Not just about cancer but in other areas of health, My prayers are with you. ~ BoiseB

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Double Mastectomy Clothing

Care for after my double mastectomy. I want to think ahead. Like getting a plastic sits bath after having my children. Or buying a spray nozzle for the shower and some chair I can put in the shower. Any thoughts or ideas along these lines? ~ Grandy

Before my bilateral mastectomy, I went to Goodwill and bought about 20 tank tops. I tried to get cotton, or mostly cotton. I started wearing these under my clothes shortly afterward and found them to be most comfortable! ~ YDnar2xr

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Does the phrase, "lost their battle with cancer" bother you? ~ It'sMeJennifer

I have never had a problem with the image of me fighting cancer as a battle...as a pediatric nurse practitioner I would often draw pictures for the little ones of their white cells and fevers mobilizing to fight their infections...these were mostly done as stick figures as I never presumed to be an artist...once I got over the shock of my diagnosis and met with my surgeon, oncologist, and radiation team I felt the plan of action (or "attack") they mapped out was exactly what made me comfortable. It has been 5 years since my diagnosis. I do not feel like a warrior but I am a survivor. ~ Gabba

Read more responses to this question HERE .

How you survive on chemo(oral) for rest of your life? ~ Angimary

Angimary, I was on Femara for five years. After five years they have put me on Tamoxifen. Now I am having tingling and numbness in my feet which my oncologist doc thinks may be a side effect of the chemo drugs. Well, at least I am still alive. I just have to LIVE with it. I had concerns about the meds too. Be thankful that you are alive and live each day to the fullest. ~ MyahsMom

There are hundreds of conversations going on at WhatNext about issues that metastatic breast cancer patients are facing. Just drop over and join the conversation. Or if you have a question about an issue, just click here to ask your question to the community.

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