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7 Years Later, I Still Can’t Believe I Need an Oncologist!

Here we are, seven year later and 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, I said 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, also partly because she was a woman. That relationship was a disaster.

I am back with number four and over the past few years, 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 and if it’s option, it pays to shop around.

At this point, my follow-up 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,” or that “difficult” patient, which is always nice.

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 once again about how sneaky cancer can be and that’s it’s probably best to avoid the “cure” word. He’s had patients’ cancers recur decades later too.

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 that 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?

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7 years later, I still can't believe I need an #oncologist! #cancer #breastcancer #womenshealth

Kathy

Monday 31st of July 2017

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.

Beth Gainer

Monday 29th of May 2017

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.

Nancy

Wednesday 31st of May 2017

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

Rebecca

Friday 26th of May 2017

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

Nancy

Wednesday 31st of May 2017

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

Donna

Saturday 20th of May 2017

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.

Nancy

Monday 22nd of May 2017

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.

Annette Schmid

Friday 19th of May 2017

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.

Nancy

Monday 22nd of May 2017

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.

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