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.

Quarantine should be a time of relaxation

 

 

A short update

Dr. W = Oncologist
Dr. R = Neurosurgeon

A few days ago, I had the opportunity to meet with my oncologist.

I am now tappering off of the dexamethasone
This will take several weeks before my body will be ready to be “dex” free.

I have mentioned to you that I felt my weight had increased. Thank you, steroids, and COVID quarantine.

I had one surprise at this appointment.
I actually weight two pounds less than six weeks earlier.
And to that, I ate another donut.
I enjoyed it.

Now I am sitting in an unknown.

With yet another brain MRI to be scheduled (it has been seven weeks since my last brain scan) and the opinion of Dr. R, I will need to decide on what “I feel” is best for treating the situation.

And honestly, today I don’t know which I will choose.

For now

I am waiting for the approval and scheduling of the MRI.

I am waiting for a very busy neurosurgeon to speak with a busy oncologist.

They will be discussing exploring or determining the feasibility of resection of the CNS metastasis. Will that be one, two, or the possibility of all three tumors.

Dr. W was happy to tell me that a new drug has now been approved by the FDA for treating MET HER positive brain tumors.

Tucatanib has met approval standards with possible improved Central Nervous System penetration. This, I would be taking in daily pill form and would be combined with my continued Herceptin and Xeloda infusion. I will also continue taking my daily Anazatole, which helps to decrease the amount of estrogen my body produces.

This sounds like a great option. But there are always side effects.

Dr. W specifically spoke of the choice I had previously made to have surgery. (oophorectomy “ovaries removed)

I wanted the surgery to take place because I no longer wanted to be taking the drug Lupron. I had already had a hysterectomy years earlier. Why would I need my ovaries?

My life during the Lupron phase of treatment was painful with side effects.

I just did not want the Lupron in my body.

The surgery eventually took place, not needing the Lupron drug has granted me far more quality of life over the past few years.

At the time, removing my ovaries was not fully supported by Dr. W.

But after the fact, at today’s appointment, Dr. W was admitting that the surgery was the right choice for me.

This part of our conversation is now on repeat as I think about getting to the best possible outcomes.

 

How am I physically feeling

 

My body had become accustomed to the dexamethasone and now as I am tapering back off.

 

I am now again experiencing the symptoms and side effects of brain lesions and long term cancer treatment.

 

The energy I was enjoying two weeks ago is now in the toilet.

 

I am learning to get back into the habit of taking breaks during the day.

 

I’ve always expected a lot from my physical and emotional stamina.

I am grateful I had the opportunity to have those weeks of feeling “normal”

Not everyone has that experience while taking steroids.

 

This isn’t an easy thing for me to accept but I will.

Quarantine should be a time of relaxation.

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.

My medical team is growing

**********************************************************

I had my first appointment with a neurosurgeon this past week.

Steve and I were impressed and happy with who my oncologist recommended.

I prefer to have my doctors be blunt and to the point.

And this one did not disappoint.

 

He had already seen my MRI that shows the three tumor areas. He also had my medical records showing that I have been in treatment for almost four years.

The first thing out of his mouth was; 

“Well, you look a whole lot better than what I expected. I thought you would look sick”.  

and second

“You have outlived your prognosis.”

Then he mentioned that he hoped that did not offend me, but he is blunt.

It was strange to hear a doctor mention it. I was thrilled that he did.

 

He said he was looking at edema from the prior radiation as well as the three tumors. 

After a long conversation, which included learning new things, the next step will be three weeks of Dexamethason to reduce the water/edema. Hopefully, this will help with the headaches.

I will have a repeat MRI, and a follow up with the neurosurgeon.

I was happy to hear that he was confident that two of the spots are operatable. The third may be as well, but he would have to study the area more to determine if it would be safe.

 

Depending on the outcome of the March MRI, we will have more information to make plans and next steps.

A biopsy of at least one of the tumors will most likely be needed to determine if my actual treatment protocol will need to be changed.

In a needle biopsy, he will drill a small hole into the skull, and a narrow, hollow needle is placed into the incision to extract a tiny portion of the tumor or tissue. A stereotactic biopsy uses 3-D imaging technology, as well as data from CT and MRI scans, to examine a tumor or a piece of the brain.

I have taken 2mg of Dexamethason before bed the last two nights.

I have to admit I enjoyed the energy that I had today. I feel like my old self. My stamina is impressive. Today was the first time since I can remember that my entire house is clean at the same time and I didn’t pay someone to make that happen.

***********************************