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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: The Forgotten Ones..

Topic: The Forgotten Ones..

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jul 13, 2017 06:55AM

nowaldron wrote:

Hi Everyone,

I hope all of us are having a good day!

I have been thinking lately, that those of us who live with metastatic breast cancer are like the forgotten ones. I was diagnosed in February 2016 which was followed by radiation, six months of chemo, and now am on immuno/hormone therapies. In the times since I finished chemo, my hair has grown back and I am really feeling quite well. I was one of the fortunate ones who had very few side effects of any of my treatments with the exception of the loss of hair. Now that my hair is back and I am looking "normal," it seems that most people have forgotten that I continue to life with this killer inside my body, I have two sisters with whom I am close, but they absolutely refuse to recognize that this disease will eventually kill me. They keep saying "oh, you will be fine," and I have difficulty talking to them about the future. At my work, I am a college professor, I never missed a day throughout all of this. (Fortunately, I was on sabbatical when I was diagnosed in 2016 so I initially kept the news to myself.

I guess this rant doesn't make much sense, but I still live with the anxiety and terror of knowing that at any time the monster inside of me could go on the attack. Because of the mets, the lump in my breast wasn't removed, but did shrink significantly with treatment. In the past week, however, I have been thinking that it has gotten bigger - not sure if is my mind playing tricks on me or not - I have my regular appointment on Monday, so we will see. Needless to say, I have not mentioned it to anyone and am just counting the minutes until my appointment.

Oh well thanks for giving me the opportunity to express some random thoughts. I enjoy reading everyone's stories and experiences. At least here, we are not forgotten!

Good health to all!

Nancy

P.S. Had mets to skull, spine, ribs, femur and liver.

Dx 2/5/2016, IDC: Medullary, Left, Stage IV, metastasized to bone, ER+/PR-, HER2+ (IHC) Radiation Therapy 2/8/2016 External: Breast, Chest wall, Bone Targeted Therapy 2/18/2016 Herceptin (trastuzumab) Chemotherapy 2/18/2016 Taxol (paclitaxel) Hormonal Therapy 9/15/2016 Femara (letrozole)
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Jul 13, 2017 09:14AM Kandy wrote:

Nancy, it really sounds like you have done very well, congratulations. I hope that lasts for a very long time for you. As far as your sisters, and others, I've came to the conclusion that there are many different reasons why people say those things. Maybe they are in denial, where they just can't believe any other way. Sometimes I think people really don't know what to say, so that comes out because they don't want to sound pessimistic. My personal feelings is that people really just don't know what to say, I think the majority of time they have good intentions even though we don't perceive it that way. Although I do believe some people are just ignorant about breast cancer. After all, the way it is broadcasted breast cancer is just pretty in pink. My mom actually told me when I was originally diagnosed, that I would be fine, that no one died from breast cancer. What's so sad is she truly believed that and probably still does. As time goes by for me, it is easier to let people's comments just roll off my back. Just find at least one person that truly understands that you can discuss things with. Best wishes to you. Enjoy the moment

Dx 1/20/2009, IDC, 1cm, Stage IIIA, Grade 3, 4/9 nodes, ER+/PR+, HER2- Surgery 2/26/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 3/9/2009 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Navelbine (vinorelbine) Radiation Therapy 10/7/2009 Breast, Lymph nodes Hormonal Therapy 1/4/2010 Arimidex (anastrozole) Dx 10/31/2013, IDC, Stage IV, Grade 3, ER+/PR+, HER2- Radiation Therapy 11/18/2013 3DCRT: Bone Hormonal Therapy 12/3/2013 Faslodex (fulvestrant)
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Jul 17, 2017 12:35AM Groovywilma wrote:

Hi Nancy! I know just what you mean. I was diagnosed stage IV in 2011 but I LOOKED so good, so normal. I think in time my friends seemed to forget I had breast cancer because I didn't go through the "standard" treatments they're used to seeing. Just recently have I been on a chemotherapy where I have lost my hair for the first time. So now it is very obvious that I have cancer and am going through chemo when really I want people to know, I've been going through this for six and a half years!!! A little frustrating! It has been helpful to attend a metastatic support group and to talk to others going through similar things. Wishing you good luck at your upcoming appointment! Take care!

Dx 1/3/2011, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Hormonal Therapy 7/25/2013 Faslodex (fulvestrant) Hormonal Therapy 9/2/2015 Femara (letrozole) Targeted Therapy 9/2/2015 Ibrance (palbociclib) Chemotherapy 12/18/2015 Xeloda (capecitabine) Chemotherapy 4/7/2016 Gemzar (gemcitabine) Chemotherapy 3/31/2017 Navelbine (vinorelbine) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 17, 2017 05:27AM - edited Jul 17, 2017 05:28AM by dtad

Hi everyone. I agree! There is just not enough support and awareness for stage 4 BC. Pinktober never addresses it and thats a disservice to all living with it. I respect and applaud all of you dealing with it so bravely. Good luck and I have not forgotten you!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 17, 2017 06:38AM exbrnxgrl wrote:

The pinktober nonsense aside, I too believe that most people have good intentions and simply don't know what to say. I am fortunate to have have had few se's from tx and look completely healthy. Those who love me, of course, want me to be fine and that's very understandable. Every now and then, I gently remind them that things can change in an instant. They shake their heads in acknowledgment but don't dwell on it. In all honesty, neither do I. I don't think anyone I know is in denial, They are supporting me by carrying on life as normally as possible, which is my wish. However, if anyone wants to talk about bc, I am always completely open and honest . It is never a secret or a forbidden topic. When the day comes that things go south, I know they will be there for me.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole)
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Jul 17, 2017 07:50AM DivineMrsM wrote:

nowaldron, I am glad you have faired well with treatment.

I agree with everything that everyone has said here. It is true that many people who do not have bc have an erroneous perception of what that "looks" like, and this is often due to what the media puts out there. Of course, the media wants to make money off of the disease, so they either plaster the horribly sick looking women with no hair or eyebrows, fragilly thin and anemic looking, for the sympathy vote, or they are flashing the look-at-me, I am practically as beautiful as a celebrity (or I am one) while I go thru cancer treatment and my life is filled with positively pink promises of stamping this disease out forever, the feel-good vote.

So there often isn't a true portrayal of mbc out there and it puts those of us dealing with it at a disadvantage. One woman I know seemed crushed that all I was currently doing to treat this was taking a daily pill, as tho I were getting quack treatment like I was badly misinformed oe uneducated on the matter. That's because so many people dealing with different types of cancer at lesser stages do go thru hectic treatment and look like death warmed over during the process, but then they move on. And the public seems only aware of stage iv cancer patients that pass quickly after the diagnosis and not ones who,become exceptional responders managing to stay stable for longer stretches with treatment.. At times, I have to remind myself I am not an mbc imposter! Because I worry that some people might think so because I look "normal".

I too have learned to accept the way other deal with my diagnosis. No, it isnt always easy. This forum is a godsend to be able to connect with women having the same experiences. It helps my sanity.


found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~ radiation~arimidex~

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