Monday, December 10, 2012

In Charge

One of the hardest things about being diagnosed with stage 3 malignant melanoma was losing the control I had over my life. OK, I know none of us have complete control of our lives, but our daily schedules are made up of what we want them to be. Early coffee alone on the couch, 8 hour work day, dinner with the little guy and Mr. Spots, heck maybe even five minutes for  a cuddle session with the dude. That's my typical day. While ideally I would like a yoga session mixed in there, it hasn't been happening lately. When I was first diagnosed, my schedule went to crap. My newly diagnosed life consisted of meeting with yet another new doctor, flying to New York to visit my new cancer center, flying home to Virginia to recover from surgery, to moving home with my family to begin 12 weeks of treatment, etc, etc, etc. I lost all control over my life. (Well, during the angry stages I experienced, I felt like I lost that control.) It made me crazy.

All I felt like I had--and it wasn't always--was the opportunity to share my concerns, ask my questions, and pick a new doctor if I did not feel comfortable with the one I had. I was the patient, and while we like to believe that every doctor is on our side, if we don't feel comfortable, how can we have complete faith in the one making life saving decisions?

I'm sharing this because today I received a message on my Facebook page from a woman who had a mole removed 10 years ago. The mole was benign; however, over the past few years she noticed the pigmentation returning. She double checked the area with multiple dermatologists to see if she should be concerned with it. Cathy wrote to me, "...they all told me no - since it had been removed it could not come back and was only pigmentation." Today Cathy went in for her yearly check-up with a new dermatologist. Sure enough, this dermatologist zoomed right in on this suspicious area & removed it. The new dermatologist told Cathy that moles can come back and can become cancerous. Now Cathy is waiting for the pathology report on an area that has been bothering her for years.

I'm like Cathy. I tend to be very trusting. I figure these doctors have had years and years of education and experience, why shouldn't I believe what they say?

While I'm not saying you should doubt every doctor, I do encourage you to find one you trust and feel comfortable with. This is your life we are talking about!

I want to thank Cathy for sharing her experience & encouraging me to share it with you all. She wrote, "It angers me that we trust our doctors so much (with our life!) and we can be told incorrect information that can cause devastating results. I'm so glad I found this new Dermatologist!"

Lesson that I'm still learning: I have no control over melanoma, but I am still in charge of what I do to deal with it. Be your own advocate.


*A huge thank you to Cathy for wanting my readers to hear her story & learn from her experience. We are all impatiently waiting to hear your good news!


Rose ~ from Oz said...

I too will pray for good news for Cathy Chelsea, and thank you for sharing her story with us. I have had doctors who were right about a concern, and at the other end, my original doctor did not believe my stage 2 melanoma was even a melanoma when he biopsied it. Sometimes,one does have to have the courage to speak up and make courteous but very firm demands.
Thanks Chelsea.
Good wishes

Respect the Rays said...

I always trust my gut with all things related to my body! we have to be our own advocates! thank you for this reminder!

Kisma said...

I read a story much like hers not to long ago- wonder if its the same gal! I don't how you manage all the traveling back and forth. I am grateful to have an amazing set of doctors close to home. My longest drive is 20 minutes.

Cancer changes our priorities in way we don't expect. We look at things very differently and what once mattered may not and what didn't matters more then anything.

Thanks for sharing and hope you are having a good week!

Anonymous said...

I have a mole I would like looked at but feeling hesitant to go see my dermatologist. I will make an appointment to see him. Hope he tests it. Either way, I haven't been down to Sloan Kettering in a while and will go down in the spring. So I understand what Cathy went through in regards to not sure if she trusted her doctor. So we will see.

Kait said...

A big, huge thank you to Cathy for sharing. And hugs to both of you!

Strong Steph said...

I know being my own advocate saved my life. Good advice!

Melissa said...

I don't think the message of being your own advocate can be shared enough! Recently I had 2 moles biopsied, and my doctor said he was not concerned at all, but I'd pointed them out and because I have a history with melanoma, he biopsied them anyway. Sure enough, one was melanoma, and luckily was caught very early so it'll just require a little excision. We should never be scared to voice our opinion, or to find a new doctor if we aren't comfortable with the one we have. Also, I can totally relate to your initial anger over losing control after being diagnosed with melanoma! I know I never REALLY had control to begin with, but I hated (and still hate) the fact that there was/is something in my body that I could only do so much about!

Jennifer E said...

Praying that she gets good news! Thanks to you both for sharing her story.

sieglertned said...

Always do what you feel to be right even though your doctor might say something different. My fammily doctor told my husband his mole was nothing... so my husband did not have it taken off. A mole that I had watched grow and darken over time. My husband waited 6 more months until it started bleeding to go in and have it taken care of. Looking back we should have went to a dermatologist instead of our family doctor but we were def not educated with skin cancer and did not know where to start. All said and done my husband ended up with a stage 3 malanoma diagnosis. Trust yourself. You know your body better than anyone, including your doctor!

Cathy said...

Thank you for posting this, Chelsea! I have some fantastic news about my results! The mole came back mildly atypical, but fine!! It's a really great thing she removed it, since it was mildly atypical! I'm so glad to be able to share the great news with you and all of your followers! Thank you again for sharing my story!!!

Unknown said...

That is how I was diagnosed with Stage 3 Melanoma. Back in 2002 I had a 'normal', flat brown mole on my back that seemed to be spreading some. I went and had it biopsied and came back benign. Fast forward several years and the spot they biopsied developed in to a 'rice krispy' looking thing on my back. I didn't think twice about it because it has already been biopsied and was benign. I finally went to a dermatologist to have it removed. I never thought it was serious. I was even joking with him about the cost of Botox for some wrinkle I have. Well...4 or 5 days later he calls me back and says I have a 4 milimeter malignant melanoma. 2 surgeries, 3 scars, and 26 lymph nodes taken out of me, I've been cancer-free for just over 2 years. I'm in a double blind clinical trial at the Moffitt Center in Tampa for Ipilimumab/Yervoy. I go every 12 weeks to donate my body to science. I was there Wednesday for my CT Scan and MRI and will be back tomorrow to see my doctor, get my results, and my "treatment". I never thought this would happen to me. Life is great though. I've never had a bad day since I got that phone call. Positivity and a pretty good/messed up sense of humor have kept me sane!

Naples, FL
Diagnosed 10/2010
Cancer free since 12/2010