7 Years later, I still can't believe I need an oncologist

Seven Years Later, I Still Can’t Believe I Need An Oncologist

You might think after seven years I would have adjusted by now to having an oncologist, but I have not. Not entirely anyway. It still seems strange to have need of such a person in my life. As I’ve written about before, I’ve switched oncologists five times. Yes, five. 

To briefly recap, oncologist number one relocated. Number two was a sub, which no one bothered to tell me. Number three was a total mismatch; we lasted one meeting. Number four, who is also my current doctor, was totally fine but I opted to try number five because of her extensive experience with brca+ patients and yes, I admit it, also partly because she was a woman. That relationship was a disaster. I am back with number four and over the past four years or so, we have developed a stable doctor/patient relationship based on mutual respect, among other things.

Switching oncologists can be stressful for a lot of reasons, but if you’re not satisfied with the one you have, it pays to shop around.

At this point, my followup appointments are rather boring which is a good thing, a really good thing. I hope to remain boring from here on out, as far as cancer goes.

My oncologist and I don’t chit chat much. Our relationship is warm and cordial, but for the most part, we stay on topic. We don’t hug, though we do shake hands. We don’t overshare personal stuff. He has no idea I write a blog and have authored three books about cancer. Why I’ve never told him I do not know, but I suspect it has something to do with the introvert in me. His tone is always pretty serious and I respect that. Besides being knowledgeable, the best thing about him is that he listens even when I’m pretty sure he doesn’t agree with me. I never get that look or tone suggesting, here she goes again. I am never made to feel like I’m “just the patient,” so what do I know.

Last week, I had my six-month checkup. Btw, some oncologists turn their patients loose or switch things up to annual visits after five years or so.

(If applicable, has this been the case with you?)

Thus far, my oncologist continues to opt for seeing me every six months.

At last week’s appointment, we talked about the usual stuff:  my meds, (reluctantly, still staying the course with Exemestane) if I’m having any new symptoms (I am not), side effects (ugh) I deal with, blood work results and brca stuff. We talked again about screening tests for pancreatic cancer due to my brca+ status (not doing any as of now) and revisited the topic of the Breast Cancer Index Test (still contemplating).

We discussed my recent skin cancer which I forgot to mention at my last appointment (oops). And of course, we talked (again) about our mutually agreed upon avoidance of using the word, cure. We both are more comfortable with NED (no evidence of disease). He chuckled when I mentioned I prefer to live in reality. He concurred by iterating once again how sneaky cancer can be. He’s had patients’ cancers recur decades later.

I was in out of that exam room pretty fast, though not fast enough.

It has now been seven years since my diagnosis. Seven years!

I am grateful.

But as I’ve mentioned before, I do not nor will I ever say, I am dancing with NED. I realize this phrase works for some, but it does not work for me.

I am still NED. I am still grateful. I am still pissed off. I am thrilled to still be boring.

And one more thing, those great life lessons supposedly gleaned from cancer continue to elude me. 

I remain a resistant “cancer learner.”

If applicable, are you still sometimes gobsmacked by the fact you need an oncologist?

If applicable, how would you describe your relationship with your (or your loved one’s) oncologist?

Do you feel the word “cure” is too loosely tossed around?

 

Seven Years later, I Still Can't Believe I Need an Oncologist

 

 

 

 

17 thoughts on “Seven Years Later, I Still Can’t Believe I Need An Oncologist

  1. Nancy, I am so GRATEFUL I found your website/blog! Your topics are so timely to me and my situation! I just had my 4 month check up last week (I’ve been breast cancer free for 3 years), and it was very upsetting… time I find a new oncologist! I was upset with myself after my last appointment for not being more prepared with talking points. So last week I went in having fully researched my issues and questions – mainly that I have side effects that have become unbearable, primarily insomnia, hot flashes, and dry mouth. I take so many drugs that identify insomnia, hot flashes, and dry mouth as most common adverse reactions – how do I identify which drugs are the culprits and how do I fix my situation, because I’m ready to jump out of my skin! I had a few other talking points. While waiting in the exam room (which wasn’t very long – maybe 10 minutes), I heard him very quickly go in and out of 2 other exam rooms for appointments. When he came in to see me he essentially seemed annoyed by my questions. He’s never been a warm and fuzzy kind of guy but I felt like he couldn’t end our appointment soon enough. He offered no solutions. I left dumbfounded. And pissed. He’s apparently known in the oncology community as a good oncologist and that’s why I’ve stuck with him to this point but no more… not worth it.

    1. Melissa, I don’t blame you for leaving your appointment dumbfounded and pissed. You deserve better. I would say either talk to him directly about your concerns (regarding your dissatisfaction at appointment and whatever else you choose) or find a new oncologist. At the very least, you deserve validation and at least attempts to find solutions. Good luck. And I’m glad you found me too. Welcome!

  2. In my case I was really floored when the intern (who did my initial interview) asked me why I was so upset after he explained I’d need chemo. His exact words were, “why are you so upset, we are offering you a cure”. I immediately lost trust in him and wondered if I was going to die because my doctor was not up to date on current treatments or, god forbid, not properly trained in the first place. Everything turned out fine in the end when the actual oncologist re-did my interview. He was compassionate, yet forthright and realistic, and never once suggested that chemo was a cure. I know for some, they might find those choice of words a comfort, but for me, I know enough about cancer to know that there is no cure. So when someone uses that word, their validity goes right out the window .

    1. Lennox, Striking contrast there between your two doctors. I’m glad things turned out fine in the end. Sounds like you and I think alike regarding the word, cure. Thank you for sharing.

  3. I don’t use an oncologist. Following the last surgery two years ago, I engaged a naturopath, acupuncturist, and physical therapist. Because I have gone a “natural” route, I essentially became my own case manager. Others I have met, few and far between, have found themselves in similar situations. While not optimal, it is what it is if one doesn’t do radiation, chemotherapy, or accept hormonal prescription. More than one has called to offer herself in oncologist role, but all then begin the immediate pressure of their “known therapies,” which I have chosen not to pursue. It always becomes a “my way or the highway” impasse, so I’m walking ever so carefully down my chosen path alone.

  4. I agree! In the last year, I have found myself literally feeling “over the whole cancer thing!” I’ve grown tired in the last few months of thinking about it and some days resent how it has colored my thinking. I am also an 8 year survivor for which I am extremely grateful! But in the last few months after a very long winter, I am tired of the effects of the AI (letrozole). I find that I feel stiff and achey a lot-is it the drug or because I am 8 years older? My primary care doc tells me all my lab work is normal so nothing to worry about. But it is beginning to affect what I want to do. I also now worry some about the dreaded “pre-existing condition” and what does this mean for all of us?
    I like my oncologist and he does listen to my concerns. I am an RN so I feel I know how to talk with docs; he did tell me in the last year, he would see me yearly and I would need to see a primary care in between so I am still seeing a doctor every 6 months. I am grateful to be alive- but some days I miss the normalcy of my precancer life. I could certainly do without mild lymphedema, fatigue and aching joints. I don’t think of myself as cured-it is more living with the gratitude of each day and hoping not to have to face chemo again. I had 4 months of chemo and 5 surgeries in 1 year. I appreciate being able to let this out here and know that the women here “get it”!

  5. Thank you for your post. I always enjoy them. I was diagnosed with breast cancer 2003 and had chemo and radiation treatments. I was sick with my chemo. Radiation treatments I was very tired. I did get lymphedema which suck! Then I got breast cancer again 2016 in the same breast. Did have double mastectomy this time. Which I am still trying to deal with. Just been a emotional time.

    1. Annette, I am sorry to hear you’ve been diagnosed twice. An emotional time indeed! My best to you as you deal with all that you must. Thank you for sharing.

  6. 4 years out for me, NED. I would dismiss it all as a bad dream if not for the 6 month oncology visits. And when I read those papers they give you after the appointment that read: Breast cancer, rt breast, 2/3 lymph nodes. Everytime I read it, I want to say – at what point do I get to have this off my chart? Apparently the answer is never. So in-between visits, I pretend it’s not me although the cloud remains, whether I acknowledge it or not.
    Very glad to hear, Nancy, that you remain NED. Air high five. We go forward.

    1. Donna, Yes, once a cancer patient, always a cancer patient. Sometimes a little pretending is helpful. Thank you for sharing and air high five back atchya. Forward we go indeed. Take care.

  7. Hi Nancy, I am so glad to learn you’re still NED. I hope you stay this boring for a very long time. Sometimes I feel surprised I am seeing an Oncologist, mainly because I associate them with mortality, even when their intentions are to save lives. And because I never thought I would be facing an illness such as cancer at such a young age, it is still surreal to me. My relationship with my Onco is OK. It’s just that though, not too personal, but she does listen to me. And she has never used the word “cured” with me.

    I feel the same way you do – grateful and pissed off. And the more time passes, the more pissed off I feel. Sigh. Hoping for a breakthrough during our time. It would be so wonderful to witness. Imagine that?.

    xoxo

    1. Rebecca, Yes, sometimes being boring is a very good thing. I’m glad you’re relationship with your oncologist is at least okay. Being listened to is vital. We’ll just keep on being grateful and pissed off as well. And gosh, it would be wonderful to witness a breakthrough, that’s for sure. Thank you for reading and sharing. xo

  8. Hi Nancy,

    I see my oncologist once a year now, but we both know I’ll never quite be out of the woods. Sometimes I am in shock that I still need an oncologist. I don’t know if I’m pissed off, as much as depressed at times that I’ve had cancer. I guess it depends what mood I’m in.

    I’m very grateful to be NED for now, but I also don’t like the expression “dancing with NED.” It sounds too much like a party.

    I think I’ll be writing a blog post sometime about my relationship with my oncologist. It is rare and special.

    Thank you for this post.

    1. Beth, I am envious of people who have a special relationship with their oncologists. I have a good one, but it’s not what I’d categorize as special. Yes, that dancing with NED phrase seems to trivialize things too much for my liking, though of course, it works for many. I look forward to reading your blog post. Thank you for commenting on this one. xx

  9. My employer dropped the PPO insurance option and forced all employees on to an HMO. I am in my fifth year of follow up and had been satisfied with my PPO oncologist who was quite open to discussions about the latest research, etc. Unfortunately, the oncologist I was assigned to cuts short every attempt at discussion since the doctors are all timed on their visits, and instead of discussing the pros and cons of staying on Aromatase Inhibitors for 10 years, keeps suggesting the BCI test, which the HMO won’t pay for. On my last visit I brought print outs of articles about the research which he wouldn’t engage in. I feel very frustrated. I emailed the PCP I was assigned to, asking if she could recommend a breast cancer specialist among the oncologists in the HMO and she replied that because breast cancer is so common all of the HMO oncologists are breast cancer specialists. That has certainly not been my experience or understanding. I may pay out of pocket to go back to my former MO until I can afford to retire and go on Medicare and once again have a choice in doctors.

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