Ovarian Cancer Student- Samantha
Name: Sam Ainuddin
Age at Enrollment: Breast Cancer 25, 33, Ovarian Cancer: 45
Majors: Breast Cancer (x2), Ovarian Cancer
What were the primary symptoms you experienced prior to diagnosis?
DCIS Breast Cancer (1st time in 1998)- lump in breast. Needle biopsy ordered by doctor. Follow up mammogram showed calcifications.
DCIS Breast Cancer (2nd time, in 2005)- found by radiologist during a routine mammogram.
Ovarian Cancer (2016)- Debilitating lower back pain, which was initially misdiagnosed as a pulled muscle. Later, my period cramps became excrutiating and my gynecologist ordered an MRI and referred me to a gyn-onc who ended up putting me into surgery.
What symptom(s) lead you to go to the doctor?
Lump in breast (Breast Cancer), Debilitating back pain (OVCA)
(First BC diagnosis, right breast)- Needle biopsy, lumpectomy, then mastectomy, lymph node removal, tissue reconstruction, genetic testing (which showed mutation on BRCA1 gene). I opted to not have a double mastectomy at this time in the hopes of being able to breast feed any future children.
(Second BC diagnosis, left breast)- stereotactic biopsy, mastectomy, reconstruction (with implant)
Ovarian cancer- complete hysterectomy and oophorectomy with debulking, chemotherapy
What has been your biggest struggle since your diagnosis?
I've been lucky in that I've been able to understand and work the system in a sense that Insurance companies will nickel and dime the shit out of you. During my first breast cancer diagnosis, outside of work, I would spend the entire day on the phone with the insurance company with my hospital bill and insurance explanantion of benefits and asking why did I get charged for X, Y and Z. There were times where there was stuff on my bill that was not supposed to be on there. I would say, "I'm not paying this."
You have to be that thorough and diligent about how the system works. It's how the system is. This is how the insurance system has been able to flourish.
What was your hardest moment (or moments) thus far and how did you you get through it/them?
My 2nd BC diagnosis was one of the toughest things I've ever gone through. Mentally, I was not all there and I had a really hard time with that re-diagnosis. It felt like the pages of my life were thrown up in the air and everything was just scattered all over the place. I had no idea what the hell was going to happen to me. I had suffered with depression, I was in chronic pain from the expander, and the reconstruction I ended up getting was really tough. During my tissue expansion phase, I ended up getting three infections, I had a rough time with my family, I didn't really have great support, I was getting ready to move to another state for work. I was miserable- I couldn't sleep, I was in constant pain- it felt like I had an ACME anvil on my chest every time I laid down. It all really messed with my head.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore?
You're gonna Google what's going on with you, even though everyone says to not Google it. My advice would to be to check the website sources. Do not seek medical expertise on anything that looks like a personal blog- you want to go to legit sources to get your information. A lot of times there will be sponsor ads that show up in searches that look like legit sources, but they're not.
Advice coming to anyone who is trying to sell a book or product- make sure there is no product attached to anything that you are reading. If someone tells you that you need to juice 24/7, are they also trying to sell you a juicer? That might be a sign that your source of information isn't a legit place to gather your medical advice/information.
Resilience comes from being confident in your decision making process and making sure you are getting the right info from the right, credible sources. Hopefully you have the right support systems around you. There were times where I didn't have that support system around me and I had to admit that to doctors. There were moments when doctors recognized my depression and asked, "Do you think you need an antidepressant?" and i was like, "Oh no, I'm going to go to the gym and I'll work it out"- which is ridiculous.
How did your family and friends respond?
I've had family members that thought I was going to die the next day, I had friends that just disappeared, and I had friends that I didn't expect who just showed up every single time. Some friends who I thought were really good friends basically disappeared.
I asked my family a lot of questions. I had a sneaking suspicion that my genetic mutation was from my dad’s side. Then my half sister (on my dad’s side) ended up with the same type of breast cancer that I did (DCIS and IDC). I kept trying to get her to get genetic testing, but she kept putting it off. When I was diagnosed with OVCA, it came out that I had an aunt (my dad's sister) who died of ovarian cancer, but they kept calling it "stomach cancer". If you have anyone in your family who talks about "stomach cancer", you may want to ask more questions, because it could really be a gynecological cancer that they are covering up.
Also, my uncle died of lung cancer, which really ended up being lymphoma that went into his lymph nodes. When it comes to family history, depending on your family's culture, there can be "taboo" issues. It’s so important to get past those taboo topics to get the information that you need for your health.
Since your diagnosis, what does it look like to you to “get back up” ?
Are you going to "give in" to the situation you've been handed? Or are you going to deal with it head on in the best possible way using the best decisions based on your best sources of information and research? You have to be comfortable with that in order to be able to get back up and try to get back to your life. How you are able to do that (depending on the support systems available) is how you get back up. It's different for everybody, but for me, getting back up is how I was able to address the situation and how I accepted and asked for help. What are you going to do otherwise?
When you feel overwhelmed or anxious, what do you do?
I take my CBD oil.
What did you know about the type of cancer that you were diagnosed with prior to your diagnosis?
The first time (with breast cancer) I knew absolutely nothing. Second time, obviously, I knew all about it. For ovarian, I knew about some of the symptoms, but didn't know anything about treatments and it's prognosis.
What do you now want people to be aware of?
I would like people to know that compared to BC, ovarian is SO FAR behind when it comes to awareness and knowing how difficult it is to diagnose. All cancers SUCK, but in my experience, having had BC twice, I would never want anyone to go through OVCA. At the very least, BC has way more funding and awareness campaigns and potentially, some of these really great drugs that are helping extend the lives of metastatic BC thrivers. For women living with ovarian cancer, it all just feels very grim.
Have you created any meaning out of this experience? If so, what was it/how did you do it?
I've told this to my therapist-I think the meaning to me is "don't waste your time". Get the things done that you want to get done. I don't have any regrets. However, looking back I don't think I would have been as freaked out about not getting pregnant as I had been in my past relationships. I did toy with getting my eggs frozen in 2008 because I had a fear of another cancer diagnosis and I wanted to be prepared for it. If you have an intuition or sixth sense telling you to do something- just do it. If it ends up not being needed, then ok. But at least you have your safety net in place there.
How did/do you find joy during this experience?
I found joy hanging out with the friends that stuck with me, and doing the things I had always wanted to do. Every year I would mark my cancerversary doing something I had never done. I went skydiving three times, I pierced my tongue, I pierced my belly button, went to Hawaii and ran a marathon- stuff like that. It can liberate you even though you sort of have to deal with other things like anxiety.
Since your diagnosis, what new belief, habit or behavior has most improved your quality of life?
I refuse to get worked up about stuff anymore. I work in a business where I deal with a lot of personalities and different people. Everyone has their own version of a definition of a crisis. There's no reason to be mean- we're only here for a certain period of time on this earth. There's no reason to be jerks to each other. Obviously, there are going to be jerks around, but personally, I try to keep that mindset of kindness. For example, my road rage is no where near as bad as it used to be.
Did you learn anything about yourself or your life? If so, what was it?
I think I'm pretty f*cking awesome. I didn't used to think that.
If you could write anything you wanted on a billboard in NYC’s Times Square that would reach millions of people, what would it read?
"Are you bloated? It might not be what you think it is."