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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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29 thoughts on “Another Trip to the Oncologist – Still NED, Still Grateful

  1. Hi Nancy,

    I am relatively new at following your blog but I must say you are spot on and such a big help whenever I read your posts so keep them coming.

    I am 19 months post diagnosis of stage 2, lobular carcinoma, double mastectomy, with 3 cancerous lymph nodes( 8 removed) so I see my oncologist about every 6-8 weeks. More often also because I developed blood clots in my lungs after the second surgery to exchange the tissue expanders for implants, so he keeps a good eye on me.

    As much as I LOVE my oncologist, I hate returning to the cancer center for blood work every 6-8 weeks. It takes me right back to those months when I went there for chemo treatments and where I returned as soon as I was out of the hospital for blood clots. Hopefully I will be off of the Coumadin in another month after being on it about 14 months. And my oncologist does tumor markers every 8 weeks. I think he does them for at least the first 3-5 years. I find the blood work somehow comforting because, even though I tense up waiting for results, I always feel like I’m good to go with NED for a while. It is downright scary to have to measure your progress by blood work so often. I HATE CANCER!!!!! And I scurry out of that facility ASAP when I am done and try to pretend it wasn’t so bad. …until the next visit.

    I have had numerous tests though (MRI, Ultrasound, CT Scan ,X-rays, PET Scan) in the last 18 months because when I see my breast surgeon for check ups she sends me for a “TEST” if I complain of any issue. But I also find it comforting that she is looking out for me.

    I have a good relationship with my oncologist, who always gives me a hug and genuinely listens. However, it is pretty much the same conversation every time.

    Any complaints Mrs. Post?…..

    Yes, I hate the AI drug Famara because it causes numerous side effects” I say

    “Ah yes, I know….I cannot make you take it but it is a very sad day when and if I have to tell a patient that their cancer has returned, so it’s best that you continue if you can.”(End of discussion.}

    We play this little conversation dance concerning every issue with every visit. I have come to expect that it will continue as long as I am under his care. I have gotten to the point where I only bring up issues that are really new because I already know his responses so well. He is there to keep me alive and to keep the cancer from returning…..the rest I figure is up to me.

    Before I had cancer I was super healthy and had very few doctor visits, mainly well check ups and routine visits.
    I once counted the number of visits I made to doctors the first year and a half after my breast cancer diagnosis…..287 doctor visits…..(that doesn’t include surgeries, hospital stays and chemo) …..no wonder going back to my oncologist every other month brings on PTSD!

    We all need a break from this endless journey which is why I have taken up Yoga.

    Mary Ellen

    1. Mary Ellen, I’m glad you found my blog and find it helpful. Always good to hear that. I am familiar with many of the ‘conversation dances’ concerning various issues too. It comes down to the fact that there is still so much we don’t know. I think I’m sort of an oddball because I don’t mind getting the bones scans, MRIs and such (I’ve had a several due to symptoms). I find them reassuring instead of anxiety provoking. Doing nothing makes me nervous… although at the same time I totally understand why the guidelines are what they are. Mind games that cancer plays are tricky. Thanks for sharing.

  2. Yep, sounds just like my oncology appointments! (Minus the children convo lol!) I was so happy to be released to annual visits. Mine also follows guidelines, for the most part. He did order tumor markers for the very first time at my nearly 5 year mark. I think more as a matter of prudence. But yeah, I’m always feeling reeled back in just at having to see an oncologist at all. And with every medical appointment. Or ache. Or pain. Or pimple. But yes, thankful to remain NED, as far as anyone can tell. And thankful you are too! =)

    1. Kimberly, I just wish oncologists were in more agreement regarding following the guidelines. But as mine mentioned to me again, not all follow them because that’s exactly what they are, guidelines. Bottom line is, I am happy to be NED. So glad you are too. Thanks for commenting.

  3. Nancy, I truly hope you continue to stay NED. 4 years is good. 5 years will be great!
    Last fall, my oncologist was so pleased with how I was doing, he suggested 6 month appointments and yearly PET scans. My husband (intuition maybe?) said no, so to please him, we decided to continue the twice a year PETs and 3 month visits a little longer. Turned out in December, the PET showed recurrence. I am now actually on monthly visits and bloodwork until my oncologist feels confident the new drugs are working and that I am not having any serious problems with one of them. So for me, when I get back to the 3 month schedule will be progress.

    1. Elizabeth, Good thing about your husband’s intuition then. I hope you are tolerating the new drugs alright, it’s always such a wait and see thing. I’m glad your oncologist is keeping a close eye on you. Hope you do get back to those three month intervals. Thanks for your comments.

  4. Nancy, I’m on my second oncologist–with a third I saw for a consult. The consult is truly the adjuvant king–writes the NCCN guidelines–and he strongly felt no tests without symptoms. Ever. My “new” oncologist–switched after my first one ignored serious toxicity of tamoxifen, and when I finally was diagnosed with endometrial cancer from it, told me “I was FINE”–he and I have the talk about extended adjuvant, and I was able to show him that the adjuvant king thought it wasn’t of great benefit for me. Still, he diligently discusses it and re-visits it.

    I find the appointments draining, but recently, due to a weird interaction with a urogynecologist, when I was prescribed estrace, I called him and he immediately called back and discussed thoughtfully and completely why that was a horrible idea.

    He discussed that lack of knowledge on ultra-low dose estrogen and said that quality of life is important, but so are risk/benefits.

    So, I have both an oncologist and a gyn oncologist, and I think both are great, and I wish I needed neither.

    And I wish I had started with my current oncologist and not dealt with the thoughtless woman who I saw for the first 5 years. She used to have a great reputation, and more and more I’m hearing about lapses in her care….Past performance is no guarantee.

    1. Kira, When I read about your struggles, I am reminded of the fact that so many women (and men) do not have the medical knowledge background that you have. So if you’re struggling to have these conversations… need I say more? Any kind of medical appointment is draining (just had my root canal yesterday and it was exhausting, as it took four hours), but oncology appointments are in a whole different league of ‘draining’. I’m glad you have found both an oncologist and a gyn oncologist. It’s wonderful when you find doctors you click with. Thank you for sharing.

  5. Thanks for another thoughtful post. I just had my 3 month visit with my oncologist, as I start year 3 after Stage 1 treatment that included lumpectomy, chemo (high onco score) and rads. I’ve been getting blood tests, tumor markers every 3 months from the first post-treatment visit. I never questioned them, except asking once what they were, and I was told tumor markers. I had no idea they were not necessary and now I wonder why I’m getting them. I will ask at my next 3 month visit in April. My oncologist is considered an expert to the point that he is a professional witness in malpractice cases in Los Angeles. So, I will be interested to hear why I’m getting tests that are not in guidelines. But which guidelines are we talking about? ASCO?

    I’ve wondered if a different doctor would be more sympathetic about the side effects from the Letrozole and Anastrazole. His usual response is to try all 3 AI’s before giving up and then he says if I can’t take AI’s then I’d have to take Tamoxifen, which I know has its own issues. I’m so tired of the whole experience.

    1. Kathy, Remember they are just guidelines and all oncologists do not follow them. And yes, I think they are ASCO guidelines. It’s too bad your oncologist isn’t more sympathetic about your side effects from the AIs. At the very least, you deserve validation. IMO you also deserve some help in how to manage them. And yes, it is all tiring. But we do what we need to do. Thank you for sharing.

  6. Still NED. Still grateful. Me too! I just saw my oncologist last week, my first annual check after being every 6 months for the three years prior. I am six years out from my diagnosis and continue on Tamoxifen. My oncologist and I discussed it and she recommends being on a medication for 10 years. Since I am not menopausal yet, I just passed 6 years on Tamoxifen. I will stay on that until I become menopausal and then switch to an AI. I seem to tolerate Tamoxifen fairly well, though the muscle/joint pain flares up at times. I like the idea of being on a medication for longer than 5 years, based on what the research is showing, but it also concerns me with side effects, if I have to switch medications, long-term impact, etc. That’s the deal with cancer treatment . . . no easy answers really, just informed decisions. Thanks!

    1. Lisa, I’m glad you are tolerating Tamoxifen fairly well. You might tolerate the switch to AIs okay too. Who knows? And you’re right, there are no easy answers, just informed decisions. And yes, being NED is something to be very grateful about. I am happy for us both. Thank you for sharing.

  7. Hi Nancy,

    I’m so incredibly happy you are still NED!! And graduated to 8 months. Wonderful. Your discussion of your interaction between you and the oncologist (who seems like a gem by the way) was so very important. I don’t blame you for wanting to be on the other side of the cancer doors. These oncology appointments are so very difficult, aren’t they?

    I see mine once a year. While I’m lucky that it’s only once a year, this causes problems for me, as then the visit becomes a “big deal,” and I’m likely to have a panic attack. I didn’t know there was a name for high blood pressure caused by doctors. Very fitting.

    I’m glad your appointment with your oncologist went as well as it could. And, yes, when I tell my oncologist it is nice seeing him, I see the irony in this.

    1. Beth, I am incredibly happy about it too. And yes, eight months, that caught me by surprise – in a pleasant way of course. Still, the fact we need these appointments at all remains unsettling, so of course, you feel apprehensive at your yearly checkups. You are only human. Thanks for reading and commenting too.

  8. 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!

    1. 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.

      1. Nancy – I know this comment is over a year old, but I keep ruminating on this issue.
        I wonder how old that data is about testing not improving long-term survival. With so many new drugs in recent years, it seems truly counter-intuitive that getting on something like Ibrance quickly wouldn’t help improve survival times. But with the state of metastasis research, we probably won’t know any time soon …

  9. 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

  10. 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!

    1. 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!

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