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Still NED, Still Grateful & Still Pissed Off

Last week I had my checkup with my oncologist. Sometimes I’m not even sure why I keep having these appointments because as I’ve mentioned before, we pretty much have the same discussions now at each one. This is a good thing. A really good thing. I am not complaining. I don’t want to have a lot to talk about with him anymore. 

I had no tests done (other than blood work) because my oncologist follows the guidelines, which means no tests are offered without symptoms. This is still hard for me to accept sometimes. Admittedly, I wish there were a scanner I could be sent through once a year to see what’s going on in there, but of course, this is not the way things work in Cancer Land.

At this appointment one new thing we did discuss was screening for pancreatic cancer. As you probably know, I am brca2+ and this means I am at greater risk for other cancers such as ovarian (removed those parts), melanoma (can’t remove my skin, sorta need that) and pancreatic, to name a few.

As you also probably know, there aren’t good screening tools for pancreatic cancer. But there are some that are recommended sometimes. That’s why I’m bringing this up. If you think you might be at greater risk, you can discuss this sort of screening with your doctor. Thank you to my friend, Nicki Boscia Durlester, administrator of the Facebook page Beyond the Pink Moon, for sharing these two links with info about this. Here’s one. Here’s the other.

As far as screening for pancreatic cancer via an MRI (due to some family history and my brca2+ status), my oncologist and I agreed to think about this some more. He also suggested I see a dermatologist soon for some skin spot issues…

I also asked him for his opinion on using the term cured for people “successfully treated” for early stage breast cancer. I told him about my friend Jody, mentioning that her cancer metastasized 15 years after her initial diagnosis. His response was:

Breast cancer is sneaky like that. So no, I don’t use that term.

We also agreed I will stay the course on Exemestane. For now. We will revisit in six months.

I love his advice about thinking in shorter time frames (instead of five more years) and I told him so. He smiled and smiled upon hearing this. I guess oncologists like to receive compliments regarding their advice and such too.

So, six years out and I am still NED (no evidence of disease). And by the way, you will never hear me using the phrase, “dancing with NED”. For some reason I dislike that phrase. Go figure.

I am tremendously grateful to still be NED. But I don’t feel euphoric or anything; I know better. And yes, I still feel pissed off at cancer for being such a conniving, unwelcome intruder that burst into my family’s life. Things have not been the same since that day. And yes, I am allowed to remain pissed off at cancer. And no, this does not mean I am an angry person or being negative. I’m being honest!

But again, I am grateful. I move forward.

I am changed. I am not changed. I am still me.

I keep living my life as best I can.

I am still NED.

But I’ll skip the dancing.

If applicable, does your oncologist do any tests (for recurrence) without symptoms?

Regardless of your situation, how do you feel about the phrase, dancing with NED?

Do you have any family history of pancreatic cancer?

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Still NED



Thursday 9th of June 2016

I use sleeping with NED and apparently he sleeps around. . Never dancing. I don't know why those at high risk don't get any other screening. They don't even do tumour markers here anymore. We'll for me they do. Mets. I am down to one scan a year and only because I can't stand not knowing but don't want scanxiety every 3 months. My Onco is amazing and says my labs will show us first. Apparently mine have always represented my situation.


Friday 10th of June 2016

Patricia, I'm glad you have an amazing oncologist. That helps so much. Thank you for sharing.


Wednesday 8th of June 2016

Thank you for speaking up & speaking out. I am not dancing with NED either I just feel currently lucky. I didn't ring a bell after completing chemo nor did I accept a graduation from radiation certificate. Cancer didn't make me a better person either, that is my responsibility. Thanks!


Friday 10th of June 2016

Lin, I love your comment. I didn't want to ring a bell or receive a certificate either. And did cancer make me a better person? No. Love how you put it - "that is my responsibility." Thank you!


Saturday 4th of June 2016

I passed my 7 year mark in Feb. Dancing with NED sounds incredibly stupid to me. I absolutely hate these kinds of catch phrases describing cancer. Are we cured? Never Any Dr that tells a woman this has no sense of responsibility towards their patient. We all should know by now there is no cure. If it is held back we are the lucky ones but I have friends who were a stage 1 that jumped the que to stage 4 . Dr. has some explaining to do IMO... At this time I'm not dealing with Cancer, I have been diagnosed with Congested Heart Failure. along with Pulmonary Hypertension Chemo related!!

My maternal 1st cousin who I dearly love has just been diagnosed with Stage 4 Pancreatic Cancer. I am totally devastated. I am still trying to process all this new info in my head and I just dissolve into tears. She is the kind of woman you can't help but admire..

Good post Nancy.......... Take care.....Allix


Tuesday 7th of June 2016

Alli, I am sorry to hear about your congestive heart failure diagnosis. Gosh, the cancer fallout truly never ends. I am sorry about your cousin's pancreatic cancer diagnosis too. Talk about a lot to process indeed. Not sure it's even entirely possible to do so. Thank you for reading and sharing. It's good to hear from you. You take care too. xx


Friday 3rd of June 2016

Unnecessary embellishment - such a civilized way to think about it. Being angry all the time is not a healthy default position for me! Never heard dancing with NEd and I Hate it. Wait, it's an unnecessary embellishment ! Ok, I'm getting this... No Pancreatic cancer, thankfully. Nancy, I have a kind MO, too, and last week at my appt, he spent a good hour going over my list of questions and I felt listened to and respected. He is a gentle man. He follows your docs way with no unnecessary tests - won't help survivability and will drive me crazy. BUT, he listens. I'm on a vacation from Arimidex because of severe joint pain. Send me for X-rays right away - pain in both legs. I'm preparing for bone cancer but looks like arthritis so addicting orthopedist to my list. Next week. I'm on vacation. Start Exmenastane (sp) next week. I like the going slow idea. If I know I'm listened to and I can take breaks and change mess I can do this. Maybe. One year down! Thanks to the wonderful advice and stories. Peaceful weeekend to us all. ✌️❤️Linda


Tuesday 7th of June 2016

Linda, I agree about the phrase, unnecessary embellishment. And, dancing with NED, is just not something I'd say. I'm so glad you have a kind doctor and that you feel listened to and respected. Both mean so much to any patient. Good luck with the Exemestane; hoping that goes well for you. Thank you for reading and sharing. Take care.

Cancer Curmudgeon

Thursday 2nd of June 2016

Until well after my treatment ended, when I began to hear about others' experiences of being told by doctors they were "cured" or never told about the risk of mets, I assumed all doctors used what I call responsible language. None of the oncologists I've had have ever used the word cured, I can't remember if successfully treated has ever come up, but in general I've been lucky in that all of them have been measured, logical, and "straight" with me. Never doom and gloom, but always realistic in their presentation of FACTS to me. (I cannot say the same of some of the nurses and others, but can't win em all I guess.) So perhaps I have an unfair expectation that this is the norm. Sad. Now, if only logical, reasonable, and "straight" talk would be employed by celebs, the media, etc, so culturally we can move forward from slogan or pat answers --"you're cured!"--in order to get a better understanding of the complexity of cancer. Ugh, I sort of hate all these little metaphors and slang terms that crop up around cancer, so of course I dislike dancing with NED. Not as annoying as "kicked cancer's ass", but still, I find these little sayings unnecessary embellishment.


Friday 3rd of June 2016

CC, Sounds like your doctors are using responsible language. I cringe whenever I hear breast cancer is cured or that someone has beaten it. Not sure what beaten it even means... And yes, kicked cancer's ass, not a phrase I'll ever be using either. So much trivializing goes on when the various trite labels and messaging are used. As you said, such things sound like unnecessary embellishment. Thank you for reading and sharing.

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