Still NED, still grateful & still pissed off

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


32 thoughts on “Still NED, Still Grateful & Still Pissed Off

  1. Yes, my paternal grandmother died of pancreatic cancer. My sister is a breast cancer survivor (diagnosed at age 35 and BRCA 1 & 2 negative), and my dad has chronic leukemia and is being watched for a small pancreatic cyst. To this day I am fortunate to have never had cancer (to my knowledge- though I am always aware of my risk and family history).

    This is a little bit off the topic, Nancy, but might be an idea for a future blogpost on physician engagement. I find your description of your oncologist’s response to a little pat on the back interesting. (Also very glad it sounds like he isn’t into dancing either!) The docs are people too and are subject to a lot of pressures, especially as health care has changed to such a tight business model (I call it the factory model). I am so glad you have a good and caring doc. Most of them really do want to do a good job and are facing ever increasing challenges to being as thorough and caring as they want to be!

    I find that a little empathy for the docs goes a long way.

    I recently attended a public health meeting to roll out the Colorado Cancer Coalition’s two year cancer plan (Colorado Dept of Public Health & Environment)- with over 150 people in the room, and there was not a single oncologist present. Mostly survivors, public health workers, and social workers. What’s wrong with that picture!!? It’s wonderful to have the docs in their offices seeing patients, if they are doing good work. However, the way health care is evolving as a factory means doctors will have even less time to pay attention to what’s going on outside their offices, in the public, where the real people live. The pressures to see more and more patients and serve the executive interests of profit and efficiency lead to burnout and myopia among physicians. This means missing a lot of important cues about what people want and need to make their lives as good as possible while they live with the constant shadow of recurrence anxiety.

    What I urge all patients and their family members to do, is be increasingly vocal about making working conditions better for doctors, nurses, and all healthcare workers, to stop the funneling of resources to the upper executives who get outrageous bonuses and perks, when they could have used that money to hire more oncologists, more nurses, more staff, to allow patient care to be conducted in a more thorough, attentive way to ensure follow-up and follow-through.

    In order to provide the care and attention that patients need and deserve, and to ensure that resources get used for patients, not for second and third homes and yachts of executives, fill out those surveys every time you have an appointment, be vocal. Let the powers-that-be know that you demand better resources for actual patient care.

    Sorry for my long tangent but your description of your doc made me think of this.

    1. Alene, Thank you for sharing your valuable insights. They are so valid. I’m sorry about cancer’s intrusions into the lives of your friends and family too. And I just received one of those surveys which I generally don’t fill out. I will now. Thanks again.

  2. Dancing with ned sounds ridiculous to me. I don’t know who came up with the term. I like to think we are all unique and have our own challenges to face. No one is dancing to the tune of a possible or actual metastasis. Why would they, unless as a cruel joke ? But it sounds like you have a great doctor with realistic expectations. I do, too, and am grateful.

    1. Jan, I am so glad you have a great doctor, Jan. I don’t know why that phrase annoys me, but it does. Of course, this doesn’t mean someone else can’t or shouldn’t use it. As you said, we are all unique. Thank you for reading and sharing. Thinking about you. xo

  3. Nancy, I’m so glad you are still NED. I like your onc’s attitude. I hate that you have to think about other kinds of cancer. I can relate. Still have to think about melanoma, ovarian, and colon cancer myself, and I’m not even BRCA positive. But still have family history of those. Oy. I have yet to feel like dancing after I get an all-clear, I must admit. I feel more like collapsing with relief after the stress of getting screened. Collapsing with NED? LOL. xoxo, Kathi

  4. Hi Nancy,
    So happy that you are NED, as am I after nearly two years… I still hate cancer too and it’s insidious way of creeping in to your life!
    Sending you a happy hug 🙂
    Susan x

  5. Hi Nancy, it’s wonderful news about you continuing to be NED. Congratulations. I am part of an online community and they use the phrase ‘dancing with NED’ a lot. The phrase doesn’t bother me but I never use it to refer to my situation. I am afraid to get too excited. I just gratefully accept it and thank God for another good report. But I am aware anything can happen.

    My gene also carries an elevated risk for pancreatic cancer, but I don’t believe anyone in my family has been diagnosed with it (only breast, colon, ovarian, prostate and leukemia). When I talked to my Onco about my risk for pancreatic cancer, she stated there was no screening option. Thank you for sharing those articles. I’ll be sure to ask my doctors.

    I am not sure how my onco feels about me. I like her and I want her to understand me. Truth is I am a very concerned patient — some may call that being difficult. I often demand answers and ask tons of questions. That being said, I asked for my markers to be taken 2x a year, in addition to blood work to test for blood count and liver enzymes. I am aware markers aren’t accurate, but when I asked my onco how many of her stage 4 patients had elevated markers, she said most of them did. That was all I needed to hear. She is kind enough to do those extra tests for me, even when it isn’t part of the protocol. I feel ‘safer’ this way. She also doesn’t use the word ‘cure’ to refer to my current health status. My onco is careful in general.

    Happy to know you received a good health report. xo

    1. Rebecca, There really aren’t any reliable screening tools for pancreatic cancer, but there are a couple that are sometimes offered to patients who meet certain criteria. And of course, all oncologists have opinions on this. Mine didn’t seem in favor of doing any tests, but he was open minded and said he’d do whatever I felt right about. I appreciate that about him. So we both agreed to think more about it. I don’t believe my oncologist thinks I’m difficult, but at this point, I don’t care if he does! I’m glad you like your oncologist and that she listens to you. I’m sorry there’s a history of cancer in your family too. That shadow never goes away, as you know. Thank you for reading and for the good wishes. xo

  6. Nancy, I’m glad you’re still NED minus the dancing. I don’t care for that term either. It’s hard to put in words, but it’s along the same vein as dancing in the chemo room. It seems to deny how vulnerable we really are even in the face of good test results and health.

  7. Congratulations on still being NED. I truly hope you always remain so.
    I get scans every 3 months because I am metastatic, and bloodwork monthly. Even the short times I was NED, they continued that schedule, because I don’t seem to stay that way. It always comes back, often in a new place, except most recently it seems to like recurring in my liver.
    I do have a family history of cancer, but am BRCA negative.

  8. Nancy,

    Your oncologist sounds reasonable, and I’m so glad you are still NED.

    I also don’t know who thought up the term “dancing with NED.” I don’t feel like dancing, even after a clean bill of health. I feel like it takes all my courage just to breathe.

    I’m grateful you’re fine thus far; I totally get being pissed off.

    1. Beth, My oncologist is very kind and very reasonable. Most importantly, he always listens to me and doesn’t merely dismiss my concerns, opinions and so on. But he is my fifth one! Thank you for reading, sharing and totally getting it. xx

  9. I love this post. Have you read my mind? As usual, your every word resonates with me. My Onc. only does blood work and a physical exam, too. I dislike “dancing with NED.” I don’t want to dance with anything having the word “disease” or “cancer” in it. No family history of pancreatic cancer here.

    I’m so glad your appointment was not exciting! I am on pins and needles as my 39-year old daughter gets a mammo/ultrasound for suspicious symptoms tomorrow. I am convincing myself it’s just a hormonal problem or a blockage or something else, anything else, than FBC.

    1. Jeannie, I’m glad my post resonated. My oncologist doesn’t even do exams anymore. We just talk. And yes, that dancing phrase just feels dismissive to me. And trivializing. But of course, many people like it and use it and that’s fine. Glad to hear there’s no family history of pc for you. I hope your daughter’s mammogram and ultrasound went okay. Thinking of you both. Thank you for reading and sharing.

  10. I am 22 yr breast cancer lymph nodes in study high dose chemo less treatments 10months lung cancer left upper lobe removed no treatments needed. 5months ago cea level went up to 25 lots of scans pet scan good can’t find out why Anyone else have this problem?????

  11. Hi. I have never heard the phrase dancing with NED (but I have been living in out of the USA for a long time so I am kind of out of the loop). I do know that being NED hasn’t made me feel like dancing. I am 1 year post early stage diagnosis and my Drs here in France seem to follow the exact same protocols as some American Drs. No symptoms means no scans (at least for me with the DRs I chose). There is no history of pancreatic cancer in my family…

    1. Meredith, Well in this case, it might be good to be out of the loop! The guidelines are pretty much standard of care all over as far as I know. Of course, some doctors still do things their way too. Glad there’s no history of pc in your family. Sorry about your recent bc diagnosis. Hope you’re doing okay with everything. Thank you for reading and sharing.

  12. 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.

    1. 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.

  13. 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

    1. 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.

  14. 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

    1. 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

  15. 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!

    1. 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!

  16. 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.

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