Critical decision: Change the medical team.

Katharyn Brady By Katharyn Brady, 24th Apr 2014 | Follow this author | RSS Feed | Short URL http://nut.bz/1_66i0tw/
Posted in Wikinut>Health>Recovery & Coping

My journey started in April of 2013 when I first found a lump in my right breast. 10 months later, I discovered that I didn’t have the right medical team.

Metastatic lumps continued to appear.

As I was recovering from the surgery to remove the metastatic lump in my waist, a new lump appeared under my rib cage on the left side of my body.

Alarm and panic rang through the very core of my being. It didn’t seem logical that this rare cancer was going to stop by continuing to cut it out. I had already been put under general anesthesia twice in 4 months. My body was quickly becoming disfigured. Don’t get me wrong, having a scarred body would be the least of my worries if cutting out the cancer was effective.

Finding a new medical team.

I will always be grateful for my support team and a friend who made some suggestions that pointed me in the right direction.

My support team said I need to be working with a Sarcoma Oncologist. A friend asked me why I didn’t have a team of doctors that were working with me, i.e., Sarcoma Oncologist, Chemo Therapy Oncologist, Surgical Oncologist.

These two comments caused me to look back at my team. I had a surgeon, but she was not a Surgical Oncologist. I had a Medical Oncologist. However, when I researched her credentials, which there were many, Sarcoma Oncology was not one of them.

I then checked one of our local hospitals and found they did have a Sarcoma Oncology department.

I called them and was able to book an appointment within 2 weeks. This is considered a “self referral”.

By the time my appointment arrived, I had a new lump in my left breast. The lump under my ribcage had grown and was starting to hurt. The lump in my breast was the size of green pea.

My new team has 20 years experience with Malignant Phyllodes Tumors.

When my appointment with my new team came due, I was very pleased. They had 20 years experience with Malignant Phyllodes Tumors (MPT). They explained that MPT almost always metastasizes.

However, what was happening with me was very rare. It is more typical for MPT to go into the lungs rather than to continue to metastasize just beneath the skin. If it had gone into my lungs they would have given me a prognosis of 1 year to live.

A chemo therapy recommendation is given.

Their recommendation to stop the metastasis was to use 6 cycles of chemo therapy which has a 40% success rate. It would require that I be admitted into the hospital for 5 days and then be home for two weeks and two days. This would be considered one cycle.

My team even consulted with MD Anderson in Houston, TX. The doctor at MD Anderson had 5 patients with the same experience as mine and used the same chemo therapy regimen as my team was suggesting.

Making my decision.

I wanted a week to think about the suggested course of treatment and have time to tell my family. I had such deep feelings of sadness. My first medical team didn’t know how to truly manage MPT. Now 10 months later, 2 surgeries and 3 metastatic lumps, I was facing my own mortality and forcing my family to face my mortality. Yet, I didn’t really have time to grieve. I needed to make decisions about my health care and I needed to make them fast.

I had two choices:

• Let nature takes its course and do nothing.
• Fight as hard as I can, choose the 6 cycles of chemo therapy.

Telling my family.

By the end of the week, I had told my husband, my mom and my sister. I was spent. I asked my sister to speak to one of my brothers and my mom would speak to my other brother.

I decided to move forward with the chemo therapy that had been laid out for me.

I’ve always been the coordinator of our lives and wanted to make it as easy on my husband as possible if chemo therapy wasn’t successful.

My sister and I spoke and I asked her to be my administrator. I got everything coordinated and sent off to her.

I then made the decision that I would fight as hard as I could to beat this. I would do everything in my power and leave the rest up to God.

Other articles by this author.

Katharyn's Journey with a rare form of cancer, Malignant Phyllodes Tumor.

Diagnosis: from benign to malignant.

Having cancer brought opportunity for healing and change.

Weigh the pros and cons of a decision and then commit.

Counting down to being cancer free . . . or was I?

Critical decision: Change the medical team.

Tags

Cancer, Cancer Diagnosis, Cancer Fighting, Cancer Treatment

Meet the author

author avatar Katharyn Brady
I have survived cancer multiple times. It took 8 surgeries, 33 sessions of radiation and chemo therapy. My focus is on being healthy in mind, body and spirit and helping others do the same.

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Comments

author avatar WOGIAM
24th Apr 2014 (#)

Sad to read about the incorrect medical diagnosis you received.
You are very brave and I wish you a speedy recovery and best of luck as you embark on your treatment.

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author avatar Katharyn Brady
24th Apr 2014 (#)

Thank you, Wogiam. I agree with you. I feel lucky that I eventually got the right team. Not everyone is so lucky.

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