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Another Trip to the Oncologist – Still NED, Still Grateful

Recently I had my six-month oncology checkup. In some ways, these appointments have become routine-like. In other ways, the very fact that I have oncology appointments at all still seems quite remarkable. Requiring an oncologist is not something one ever expects. Still, after four, almost five years, I am not as nervous about oncology appointments now. For the most part, I know what to expect. I know that more than likely there won’t be any big surprises because my oncologist follows the guidelines. This means he orders no tumor marker tests. He orders no tests period unless I have symptoms, which thankfully, at this time I do not. I do have lingering side effects from chemo and other various side effects from Aromasin, but I have no symptoms suggesting cancer recurrence. I am still NED (no evidence of disease). And yes, I am grateful.

But cancer still has a way of reeling me back in. This is the nature of the beast.

Oncologist number four (I’ve had five) and I meet for about half an hour and talk about how I’m doing. My blood pressure is elevated, but this is normal for me at these appointments. They even have a name for it, white coat hypertension. Pretty self-explanatory I guess.

We talk about my AI (aromatase inhibitor) side effects; fatigue, hair loss (yes, we even talk about my hair at these appointments), hot flashes, joint pain, bone health, weight gain, sleep issues and so on. We talk about other medications I’m on. We continue the discussion started six months ago; the one in which we discuss me staying on an AI longer than five years. I tell him I am undecided at this point. He suggests I should consider continuing because the data is starting to indicate this might be wise for someone like me. He picks that moment, the perfect moment, to remind me that I am still young – his words, not mine. It might be worth it for someone my age. Of course it’s totally up to me he quickly adds. I appreciate that. He reminds me I don’t have to commit to another five years. It’s not like I have to sign a contract or something. I could keep going another month, or two, or six, or twelve, or none at all; however many I choose. Again, I appreciate his reminder that it’s up to me.

“But, Nancy, remember you did have node positive cancer,” he gently reminds me. As if suddenly I have become too far removed from my cancer reality.

His comment pulls me back in a bit.

Next we have the discussion once again about my brca2+ status. I ask the same question I always ask at these appointments, “Am I at higher risk for recurrence since I’m brca+?”

He answers how he always answers, “Probably not, but no one knows for sure.”

“Am I at an elevated risk for other cancers?” I ask. I always ask this too. It’s like we both have our scripts to follow.

“There is still much we do not know he reminds me. But yes, you might be at higher risk for a different cancer altogether; such as melanoma or pancreatic. These are the two most common new cancers for someone like you. Is your PCP on top of this?”

“Yes, she is,” I tell him.

I’m reeled back in little bit more.

And then we discuss my kids and siblings. I am reminded why there is that shadow in families like mine.

I’m reeled back in further still.

We end the meeting exchanging pleasantries. “It’s been good to see you,” I say and then immediately think to myself, really? It’s been good to see an oncologist, seriously? Still, it was good to see him.

Finally, I get a nice  surprise at the end of the appointment. “Let’s schedule our next meeting for eight months from now,” he says.

Wow, eight months I think. Progress!

And that it’s it.

Then as I always do, I make a beeline for the doors, the cancer doors. I can’t wait to be on the other side of those cancer doors.

I step out into the cold January air and breathe it in deeply. It’s an escape of sorts, and I literally pull away.

I will not allow myself to be reeled back in any further, not today.

Today I am NED and I am grateful.

How often do you see your oncologist?

If applicable, does your oncologist follow the guidelines ordering no tests without symptoms of recurrence?

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Mae

Thursday 26th of February 2015

I'm a little late to this party but Woo Hoo! NED for another meeting is worth a big cheer. About your other decisions, follow your gut. When my problems were big they only let me pick the time I would prefer to be operated on. I noticed I had more power when the decision was less life threatening. There are no guarantees either way on the aromatase which is why it's about research and then what your gut tells you. Have a wonderful 8 months!

Nancy

Thursday 26th of February 2015

Mae, There's no such thing as late to this party. You're so right; sometimes we do have to trust our gut. Thanks for the sound advice and for the woo hoo!

Rebecca

Friday 20th of February 2015

Hi Nancy,

I recently found your blog and I'm enjoying reading it.

Congratulations on still dancing with NED. My wish is you continue to dance for many more years.

I was dx at 32 (IDC/stage 2a) and my Onco wanted to stop seeing me only 2 years after I was done with treatments. She said she would put me in a survivorship program so a nurse can see me instead, and if something ever comes up, I can go back to seeing her. I said, "NO WAY!" How could she abandon me so quickly?! So I am back to seeing her 2x a year. My decision, not hers.

My Onco is not a big fan of tests and scans, unless I have symptoms. For example, I've been experiencing pains by my liver for a long time. After driving her insane, she decided to do an MRI of my liver. The results showed a "calcification." Glad that was OK. (But a calcification is still a nodule in the liver, right? Hum!)

I opted to continue doing the markers test. My Onco doesn't believe in them, but to me, doing them helps me feel "in control." Even if research shows they are not always accurate.

I never had a PET because I was getting chemo anyway, per my Onco. Plus I didn't have nodes involved - not that this matters too much anyway. cancer can come back regardless which we all know. I did have lymphvascular invasion.

I am not a BRCA gene carrier but a carrier of the ATM gene (without the cash). Yes, this is a relatively new gene they discovered which has a moderate risk for breast cancer (anywhere from 20-40% risk). Although I carry this gene, my Onco doesn't want to change my treatment plan which for now continues to be Tamoxifen (for 10 years!!), MRI and mammos every year.

I wouldn't feel comfortable if my Onco stops seeing me. For now, I am OK seeing her 2x a year.

The mental game is challenging.

Wishing you well, today and always.

Rebecca

Nancy

Sunday 22nd of February 2015

Rebecca, I'm glad you found me. Welcome! The mental game is challenging indeed. Thanks for sharing and thanks for the good wishes too.

Mandi

Monday 2nd of February 2015

Woohoo! 8 months! That is graduating to the next level. :)

Nancy

Monday 2nd of February 2015

Mandi, It is indeed! Thank you for being excited for me. I know things are rough for you right now. xx

Claudia Schmidt

Friday 30th of January 2015

Hi Nancy, Eight months between visits certainly is a step in the right direction. Glad to hear the visit was relatively uneventful and that all is still status quo with NED. xo

Nancy

Sunday 1st of February 2015

Claudia, It is a step in the right direction for sure. Uneventful in this case is perfect. Thank you for stopping by.

Renn

Wednesday 28th of January 2015

Nancy, Brava on still being NED and going to every-8-months!

I am switching oncologists, never been happy with mine since diagnosis 4 years ago... No personality, no bedside manner, not very concerned about ME. Always thinks I'm doing well. How does he know? He told me he didn't believe in tumor marker tests, that they are only useful in advanced BC. Then after my first year, he started ordering CA 27-29. I didn't say anything because I thought, maybe he did it by mistake! But I prefer to HAVE the test so I don't say anything. He also listens to me about my SEs on Tamox and now Femara but he really doesn't get it.

I have never had any imaging tests done post-double mastectomy. I've been told by Onco (and by PCP, who I am also ditching) that if I have no symptoms, there is nothing to test for. What symptoms, exactly? I have plenty of lumpy scar tissue from my delayed healing during reconstruction. How do I know it's just scar tissue? Because these doctors tell me it is? Without suggesting I get a scan? If they are not worried, then I should not be? I find this whole followup stuff really frustrating I do not feel like anyone *but* me is worried about me! I can't imagine how people who are not medically versed get through cancer. Though I like learning about everything I'm going through medically, I also resent having to know it at all.

The bottom line is all we really have are our instincts, and we have to keep employing them.

Thanks for giving me the the space to rant!

Nancy

Thursday 29th of January 2015

Renn, I feel your frustration. I have had imaging tests post surgeries/etc because I have had symptoms in the past that needed checking out. In all honesty, I wish my oncologist did the tumor markers testing at least once just to establish a base or something. But the data suggests that doing them doesn't improve long term survival. It all seems illogical partly because we've all been hearing for so long how important it is to "catch it" early. Now concerning metastasis, it's let's just wait and see. Regardless, I hope you find an oncologist who 'gets it' or at least listens to you better. And a PCP too. And you're right, we do all have to listen to that little voice, too, and trust our instincts. As with most things, it's about balance. Thanks for 'ranting'. You know me, I love a good rant.

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