Denial is a great thing?

 

This photoshoot took place ten days ago.

 

Here I am

 

Let’s start with body image.

You will see the different shots through this article.

I am going to share my thoughts with you today.

I’m talking about all the times I’ve stayed away from a social media post that deals with breast cancer. Are they all sharing the whole story or the entire truth?

When first diagnosed in 2016, I had not been personally involved in or sat beside anyone else dealing with this disease.

I believe that if you haven’t experienced it, you will remain naive.

I believe this works in our journey of life.

October cannot serve as a pink profit capitalization. The five-year survival rate after a stage four breast cancer diagnosis is 22 percent.

The color pink is not a cure.

Breast cancer is one of the most funded cancers in the world. However, more research must move forward, metastatic breast cancer, spreading to another part of the body.

We are losing too many loved ones from a breast cancer diagnosis in 2020.

Let’s not subject ourselves to pinkwashing and forgetting the reality that breast cancer presents.

and now

Another short rant from me

I believe we should always work on ourselves.

If you have experienced this as a late-stage or metastatic patient, I know you understand and have experienced this.

You learn to bite your tongue.

Suppose I am asked specifically about this.  I will share what I have learned.

But

If I had a dollar each time I hear from an earlier stage breast cancer patient or their family member mentions.

“I was in stage 1-2 ” It has been five years. My cancer illness is complete.

I pray these people are one hundred percent correct.

There is a percentage out there that cancer will return to their body at some time and place. The more years you stay cancer-free; yes, the better the rate and your chances that this doesn’t happen.

Those first five years are frightening.

You hit that five-year mark, and you haven’t had a recurrence, and that is a huge deal.

Positive and realistic is what I pray we all can be.

Please don’t ruin your life by obsessing about cancer.

We always need to be working on ourselves.

This is how I feel about being a stage four patient.

She said it so well.

Oliva Newton-John

“You know what? I don’t know what my time is, but I need to enjoy my life. So, I’m going to eat a cookie if I want it. And I’m going to have a cup of tea if I want it. And if I want to have a little bit of wine, I’m gonna do that. Because of the joy of life and everyday living has to be a part of that healing process as well.”

And Scene

September 2015 Less than a year before mbc diagnosis

How do you stay in the moment and stay present and not let it consume you and worry you?

Why me?

“Why me?” has never been a part of it

I have never felt victimized.

Shortly after my diagnosis in 2016, I was internally asking myself—this question.

“Why not.”

Maybe I needed to create a reason to make it ok for myself.

I’ve told so many of you through the years.

You choose to.

I keep the following this close to my heart.

Cancer isn’t necessarily a death sentence

Compassion and empathy for others is a healing force

Gratitude is the best medicine

feelitonthefirst 2018

The Prognosis

The percentage of people who pass away because of metastatic breast cancer is very high. If I were to focus and obsess on those numbers, I most likely would not have surpassed what the doctors told me in 2016.

Yes, it does cross my mind. Specifically, when I get reminded that I have tumors growing in my brain or repeat PET scans due.

So I sit there, and I feel it. I get scared and emotional. I’ve learned to work through these emotions and, most importantly, move forward.

I focus on finding peace in every moment.

I search for the positive and the intention behind my thoughts and actions.

As well as others.

I dream of the future.

I affirm what that future looks like.

May 2019 – a year before dexamethasone. I thought I was overweight and out of shape. Fat has always been my own body image. zzz

I do my best not to think about it all often. It is easiest to explain this by simply stating I don’t obsess.

I work on keeping my mind and heart at peace.

And the metastatic breast cancer path that I have chosen.

When I write my thoughts and experience with you, they are raw and fresh on my mind.

This is my perfect place to process and work on my mind and attitude.

Sending well wishes and health to us all.

 

Symptoms & Diagnosis – Breast Cancer IDC, Stage 4 Triple Positive

 

What were your first symptoms?

I noticed the lump in December of 2015. It appeared out of nowhere. It wasn’t sore or anything. It didn’t change or get bigger after I started watching it.

I really didn’t have any other symptoms that were apparent. I had decided to get back into shape in the Fall of 2015, and I had done that before and not had any issues. This time around, though, it was harder. It was weird for me.

I did notice a little heaviness in my chest, and now with hindsight, that might’ve been something that was a symptom of cancer.

 

How did you get diagnosed?

I had a mammogram in April of 2016. The radiologist saw that mammogram while I was still there and told me I needed to go see an oncologist.

I had saline implants, so instead of a needle biopsy, they went in surgically for a lumpectomy. It was a same-day surgery. The next week, I got the diagnosis of breast cancer.

They took out the lump and the margins were fairly clean. They said they had good therapies for triple positive and HER2, but then they wanted to check the lymph nodes. They did a PET scan. The day I went back to the oncologist to start my chemo while waiting on the full diagnosis and staging, I found out it was metastatic and I was stage 4.

That was a lot to take in that day, but the treatment was still the same. My oncologist said it was a lot of information for me to take in on one day and was willing to reschedule my treatment, but I didn’t want to. We were treating it aggressively. I was there and ready and wanted to get started.

 

How were you thinking and feeling after the diagnosis?

My original oncologist isn’t my oncologist now. His bedside manner isn’t the greatest. The day he gave me the diagnosis, he kept asking, “Do you have any questions?” We didn’t know what to ask. Finally, my husband asked about prognosis. He said I had 2-10 years depending on how well my body reacted to the treatment.

By the time I got home, I’m googling everything. I read that the next place it can go is to your brain, which the doctor didn’t even mention. I’m thinking, “Is it there too?” We hadn’t done any testing for that. My surgeon ordered an MRI for me, and at that point, it was clear, so that made me feel better.

“My husband and I just thought of it as a chapter and something we were going to get through. It took a while to realize that this would be the rest of my life. We’ve definitely started living our lives how we want to.

There’s always a reason to not go on vacation or something, but now we don’t let those things get in our way.

How did you tell your loved ones about the diagnosis?

My husband was there with me. He’s always there with me. I have four adult boy children. I told them all early that I had cancer and thought it was early stages. I had to call them all back and tell them it was metastatic, and they all dealt with it like they do with Google and research.

My parents had a hard time with it. One of my first thoughts was, “Am I gonna outlast my parents?” We told our closest family first, and then I had to tell work because I knew I was gonna start losing my hair.

The full article is linked below

Breast Cancer IDC Triple Positive A Patients Story

A Patient’s Experience – My Interview for Curia

A conversation with Shari Sheranian

05. 05. 2020, Eschborn, Germany.

Being your own medical advocate can be daunting as a cancer patient, but it’s what has helped Shari the most throughout her journey. As a breast cancer warrior diagnosed in 2017, mother of 8 children, and motivational speaker, Shari holds a wealth of advice and anecdotes on the challenges of cancer. Now, during the Covid-19 pandemic, her advice is more applicable than ever.

Thank you for sharing your story and experience with us today, Shari. Could you start by giving us a brief overview of your current medical state? Are you still receiving treatment?

Yes, I am currently in active treatment since June 2017. As a triple positive metastatic breast cancer patient I am currently having Herceptin and an aromatase inhibitor every three weeks. In June 2017 I had metastasis in both lungs, liver and one spot on my back. In March 2018 a PET scan from the neck down showed that my body was showing NEAD. Which means no evidence of active disease. My treatment was continued because I was already considered a late stage cancer patient. The Herceptin has served me well in helping to keep me NEAD from the neck down since that date.

Are there any resources that have been useful to you through your journey that you can recommend to other cancer patients?

I have learned a lot through women who have a similar BC diagnosis. The place that I have found them open to sharing is in a private Facebook group. I’ve gotten the best information and support when I joined a specific group that only accepts a patient who has the following diagnosis: stage four, triple hormone positive breast cancer and the cancer has spread to their brain. As my cancer has progressed and I’ve found myself dealing with new fears and unknowns this private group has given me the knowledge and support that I need. Unfortunately, it isn’t always a pleasant discussion to read but late stage cancer never is. I am a bit of a realist and I’m a say it like it is individual. I would rather know the good, the bad, and the ugly. It helps me emotionally prepare for what might be next. It often reminds me that I am doing very well physically considering my diagnosis. This also helps my emotional mindset.

We agree with you on the importance on staying informed. What are your thoughts on support groups? Are you involved in any?

I have tried a few support groups. Have I found one that I feel is a great fit? No, I haven’t. My experience has been that breast cancer patients tend to get together when their diagnosis is different. Those who are early stage and hopefully curable, to those who have a metastatic terminal prognosis. I feel that often early stagers have not been educated regarding the fact that once you have been diagnosed with an earlier stage cancer and even been in remission for over five years there is still a chance that your cancer will come back. People don’t understand this or some choose to keep their head in the sand. People are scared to talk to people who have a terminal prognosis and they certainly don’t want to talk or learn about EOL issues. I’ve found it impossible to find a resource or support group in the state that I live that is specifically for metastatic breast cancer patients. It is difficult to connect with national groups but I have been active in them when they do offer things and I am able to spend the money to travel.

What are the biggest unanswered questions you are asking yourself?

When will I need to make a decision between quality and quantity of life. How will I know it is time to make that decision for myself? I want to do this before I end up unable to enjoy the time I have left.

Are there any big questions you have regarding coronavirus and your treatment?

Is there any reason that my current treatment will change because of the COVD situation. It hasn’t for me.

How do you feel about the current messaging in the media (e.g. news, social media, etc.) about Covid-19 and cancer?

I feel that there has been little media that is covering the issue in my state. If I wasn’t on social media daily I wouldn’t know the information that I do. The message is getting out by cancer organizations and nonprofits. But most of the information that I see is coming from the cancer patients themselves as they learn more from this organizations as well as their own cancer and coronavirus experience.

Lastly, what advice do you have for other cancer patients reading this?

Learn what you can about your specific diagnosis and the current treatment protocols. Everyone’s cancer is different. Learn from other patient’s experience but don’t expect yours to be the same. It will have similarities and this can be helpful. Speak up and don’t be afraid to keep asking questions. Don’t be intimidated by the oncologists. Learn what you can before you go to your appointment and always have a few questions written down. This is all part of being your own medical advocate. Often a patient becomes a number. I don’t believe that the medical professionals mean or want for this to happen but at times you will feel this way. Develop a relationship with your oncologist. This will happen over a course of time. For myself as a stage four patient there are often difficult and uncomfortable conversations to have. Forming the trust and communication with my oncologist helps both of us feel more comfortable.

Shari’s Links:

Website: https://notoriousmbc.com

Instagram: https://www.instagram.com/notoriousmbc_

Twitter: https://twitter.com/notoriousmbc_

Facebook: https://www.facebook.com/thecanincancer

About Curia:
Curia is a mobile application dedicated to providing information for cancer patients on Treatments, Clinical Trials and Experts. Curia is a part of the Innoplexus AG, an AI-based Drug Discovery and Development Platform, based in Frankfurt, Germany with offices in New Jersey and San Francisco, US, and India.

When Estrogen goes from Friend to Foe

 

 

We all have our dates – dates that no matter how hard we try, we’ll never forget the sounds in the room, and the feeling in your stomach the moment you either experienced complete bliss or absolute trauma.

 

For me, it was April 22, 2016.

 

It was 8:30 in the morning when my right breast was firmly pressed for the mammogram.

By 9:00, the radiologist was telling me I am going to need an oncologist and surgeon, and the words you have cancer came out of his mouth.

That was that and off to work and the rest of my life.

 

Fours years ago, cancer disrupted my life.

It was just ten days later when I first heard the words metastatic breast cancer but I had no idea what that meant.

 

I made a decision just days later on how I would choose to understand what this diagnosis would mean for me.

 

I had already learned through life experiences that depending on how I chose to tell my story would determine the life I lived moving forward.

I can not look into the future, but I can look into myself.

 

I can ask myself questions. The same concern often pops into my mind.

Who am I, and who do I want to be.

 

People ask what keeps me moving forward.

I do believe that miracles happen every day.

I know that I can create miracles.

 

More important for me is to keep in mind that life’s journey may not always be straight or perfect.

 

My path is full of missteps, lessons, and at times suffering.

 

But honestly whose isn’t?

 

This life of mine is pretty incredible.

Difficult?

Sometimes.

Conflicting and confusing?

For sure!

A little heartbreaking at times?

 

Maybe, still, I think I’ll keep going, you know, to see what happens next.

 

Yes, when you find you have pulled the card and the hand of terminal illness, it changes you.

 

When you make a decision to change how you look at the world, you change the way the world looks at you.

 

Today is April 22, 2020, and I am marking it as my Four-year Cancerversary

 

My wish for you all this next year is filled with love and health.

Shari

COVID19/CHEMO

The oncology treatment clinic is always a space in time when thoughts catch up to me.

My goal always to live in the moment, and each treatment reminds me of the reality of my prognosis.

My experience of social distancing during COVID19 can be similar to sitting in a chemotherapy room.

You look around a room and wonder who will be next.

Which patient will be missing from the treatment room?

I walked into the building and interrogated with COVID19 questions before I was allowed to head to the second floor for my actual treatment.

The overcrowded reception room empty.

They called my name, and I entered the infusion room. There are too many chemo chairs compared to the four of us who are receiving treatment today.

Four patient’s at a time and a handful of the usual healthcare professionals.

The nurses were all wearing their surgical masks. I couldn’t help but notice that the elderly cancer patients were not.

Next week I am scheduled for a pet scan to help make decisions regarding treating my brain tumors.

I’ll update you again at that time.

I am sending healthy and joyful thoughts to each of you.

Shari

The game you play

Steve and I often refer to the treatment of stage 4 cancer as whack-a-mole.

It is constant and rarely takes much of a break.

My almost four years since diagnosis has been smooth sailing for most of the time.⁠

I am one of the lucky ones, and I have outlived my prognosis.
.
The MRI showed that the three spots have increased in size since the last scan, which was approximately a month ago.⁠

Yes

I am happy to report that steroids have helped with the headaches and given me a fantastic boost of energy and mental clarity.

No

Taking the steroids did not reduce the edema or the growth of the three lesions.⁠

We are in the same place that we were last month when we first met with the neurologist.

These three little buggers have been around since 2017.

First, we have already treated the three spots with radiation.

Stereotactic treatment quieted the lesions down for a year. But most likely also has caused some brain necrosis. Thirty percent of all patients treated with any radiation in their body ends up with disease in the area. And is referred to as necrosis.

So now what?

We have been crossing off possibilities.

And I am ok with that. This is what it looks like when you have metastatic breast cancer.

Doing the steroids and repeat scan was one way of waiting before surgical removal of any of the lesions.⁠

We will speak with the neurologist soon.

In the meantime, a new PET scan will take place to make sure that the rest of my body is still considered NEAD.

I can be thankful for Herceptin helping to keep my lungs, liver, and bones in this state.

As I write this update, we are all dealing with the desperate situation of the coronavirus.

I send my love to each of you.