A little bit about you

Name: Melissa Marie Saitti

Age: 36

City: Sudbury, ON

What was/is your diagnosis?
I was first diagnosed as stage 3 triple negative breast cancer with BRCA1 positive gene mutation. I am now metastatic with mets to the lungs.

What year was it? What was your age at the time?
2017, I was 32 years old.

What is something you’ve done that you’re really proud of?
I graduated twice from college.

What is a top item on your life to do list?
I really want to go zip lining and visit Venice.

What are your hobbies?
I love to read, scrapbook, and watch Netflix.

 

Your diagnosis

What was your life like before your diagnosis?
I was a pharmacy assistant. I just finished a specialized course on running a high tech packaging machine. I was a leader in my field of work. An on-the-go, type A personality.

How did you find out you were sick? What led to your diagnosis?
I had pain in my chest. At first I could not feel anything at all and then I felt a bump. I thought it was probably a knot or something but had it checked out anyways.

What were your first thoughts when diagnosed?
When I first seen the doctor I knew it was cancer before she even told me. My grandmother had the gene mutation but not cancer. I just felt like why not me. Of course I am going to draw the short stick. My world felt like it was going in slow motion for a while.

In which hospital(s) are/were you treated?
NorthEastern Cancer Center in Sudbury, ON.

What did your treatment consist of?
As stage 3, I did six rounds of FEC-D chemo, followed my a double mastectomy with immediate reconstruction, they wanted me to do radiation at the time but I end up having a rare infection that lasted nine months and also resulted in the loss of my expanders and terrible scars and a skin flap left behind.

As stage 4 I was on Xeloda for six months which did not work. Then I did a clinical trial in SABR radiation and I am now on Lynparza oral chemo.

When I was first diagnosed, the emotions ran high. Once that passed a little I tried to have hope that I would see the other side of this in no time. I was so wrong. After my double mastectomy with immediate reconstruction, I went through something that I found worst than cancer itself. I lost my expanders due to a rare infection and I started to lose faith in the healthcare system and life altogether. None of my doctors at that time knew what to do. They were suggesting extreme measures for something they never even treated before.

The infection only kept getting worse. I had wound after wound keep opening up on my chest and no one could quite understand why they were not getting any better. All in all it took almost six months for all the wounds to heal. At any given time, I had three to six open wounds on my chests. One would heal, two more would open. This was the pattern for five months until finally the last of them closed. All and all, there were probably more than a dozen wounds I healed.

Through that journey I suffered from anxiety, depression, and PTSD. I felt hopeless and felt as though I would never make it past that infection. My doctors were so clueless and by the time the whole ordeal was done, I had it with all of them and walked away from every single one of my initial doctors to find people who wanted to actually treat me and stop looking at me like a lost cause. Then there was the year of no answers. That was probably even tougher than the infection. Every three weeks, I would go for blood work with CRP numbers they could not make sense of. Other blood anomalies that made no sense and every three months I’d have scans that would produce images a small lesions on my lungs. Nothing was large enough or aggressive enough to call for a biopsy so it was sit and wait. Maybe this is the infection still living in my body or maybe it’s cancer, but it’s too soon to determine its nature. A year of “we don’t know anything yet; it’s too soon to tell.” That was a type of torture only the bravest of souls can withstand.

After that year, it was actually a relief to hear that I had stage 4 cancer. There was no more wondering. I had a path, there were treatment options available. It wasn’t just stay home and we will see what happens.

What is your current medical status?
Currently I am stable stage 4 breast cancer thriver with a met to my lung.

 

Life after cancer

What is/was the toughest part about having cancer as a young adult?
Having to tell people that I have stage 4 cancer when I look healthy. You get that shocked look followed by that pity look and revealing this information about myself never seems to get easier.

What really helped/helps you to keep going while you were/are sick?
My family. My amazing husband is the greatest supporter and, of course, my too cute son.

What kept you/keeps you busy during treatment?
I like to distract myself with Netflix.

How are you connected with Young Adult Cancer Canada? How did it happen?
I got connected to YACC though a friend.

 

The issues

Did/Do you feel isolated from your peers since your diagnosis? If so, how did/does that affect you?
Yes, a lot of friends have turned their backs on me. My once large social circle has become very small. It only showed me everyone’s true colours and reminds me that the people who stick are real friends. There are days I feel lonely but my YACC community is usually only a quick message away.

Has your cancer diagnosis affected any of the relationships in your life? If so, how, and how are you managing them?
A lot of my family have shown that they can’t handle cancer and I have cut them out because they are not worth my time. Friends are the same way. Always remember that you can’t change people’s opinions or minds about your diagnosis and trying to is wasting your precious time. Be you and just live your best life. It’s their loss in the end, not yours.

If you have children, how has your diagnosis affected the way you parent? Do you have any tips for other parents on talking to their children?
I do have an eight year old son. I have always been honest with him to the best of my ability. Hiding your diagnosis or lying to your child is not the way to go. My son is my biggest supporter. When things are terrible he gives the best cuddles. When things are great he wants to have dance parties. Living with stage 4 cancer, I want to show him that even in the face of a great challenge such as this you put your best foot forward and fight hard.

How has your cancer experience affected your body image, and your relationship to your body?
Loaded question, I hated my body for so long for betraying me. I was left with terrible skin flaps after my infection. I have hideous scars and it made me want to cry every day. But now, I respect the journey my body has gone through. I am not overjoyed with the way things look, but I swallowed a lot of the anger and turned it into bravery and reminded myself that I am still here despite all odds.

 

Resources and recommendations

Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?
I also am part of Rethink Breast Cancer where I have gone to the Stretch Heal and Grow retreat, their Boobyball, and have attend some of their online workshops and I have written a blog for them.

 

Stay in touch

What would you like to say to other young adults dealing with cancer who are reading this profile?
That no matter what your cancer or stage, YACC has your back. YACC has been so good for me and I hope you’ll find that same level of support here.

Are you interested in helping others facing cancer challenges?
Yes!

[Email [email protected] and we’ll forward your message to Melissa]