Sometimes I find it difficult to believe it when my doctors call me ‘normal’. They aren’t just referring to my survivorship challenges but also to my current physical health.
Why can’t I just hold on to the good news and move on?
I’ve been dealing with left hip pains since November. The pain only happened when I made certain stretching movements, which suggested it might have been muscular. But it started worsening during the holidays so I contacted my oncologist. Since Tamoxifen side effects can cause such pain, she recommended I stop the Tamoxifen for a week. I chose not to, out of fear. Instead, I went outside my hospital and saw an orthopedist. He took an x-ray of my pelvis and said my bones look normal. We both looked at the images as he explained.
The orthopedist suggested I receive physical therapy for 4-6 weeks and take some pain medication, in addition to using some hot/cold compressors 2x daily. After following his recommendations, I noticed the pain was not going away. I panicked, which seems to be happening even more frequently these days than when I had just stopped chemo treatments.
I contacted the orthopedist to give him an update and he suggested I get an MRI, which I got done earlier this week. After anxiously waiting for results, he finally called to tell me the MRI was also ‘normal’. I was so relieved. But only a few hours later I had decided that I would have my MRI slides sent to my oncologist for yet another second opinion.
What am I looking for? Maybe guarantees?
Here’s another example. Since my cancer diagnosis, I have been seeing two GYN specialists, one at MSKCC and one outside, because each provides me with different types of care. The first one is research-oriented so I get a lot of useful information and recommendations for cancer testing.
The other is my regular GYN doctor, who has also been monitoring me very closely since my cancer diagnosis, and whose care feels more personal, like a concerned friend. Thanks to her, I was able to get a pap test, which would not have been part of my hospital’s protocol to perform at the time.
After having two abnormal pap tests in the last 8 months, I decided to see my GYN at MSKCC to get her opinion. Here’s the thing though, technically this would have been my THIRD opinion, because right after getting my pap results from my regular doctor, and after confirming through a cervical biopsy that my cells were benign, I had also decided to see a surgeon at MSKCC and have him take a look at the slides. He too confirmed that my cells were benign.
How many confirmations do I need in order to…RELAX?
Going back to my recent visit with my GYN at MSKCC, while I waited in the examination room I thought of all the questions I had already asked the other doctors. What could she possibly tell me that is so different? I guess I need a lot of reassurance.
My GYN finally entered the room and asked how I am doing. I told her I am dealing with a lot of anxiety due to my recent pap results. She felt the need to comfort me. She spoke very slowly to make sure I followed everything she was saying—maybe her way to calm my nerves.
She says, “What’s going on? Talk to me.” I always feel excited when a doctor opens a door for discussion instead of brushing me off.
“Haven’t you looked at the reports, the ones from my other GYN? I had abnormal cells. I had to have a cervical biopsy,” I replied.
She tilted her head and gave me a sympathetic look, then said, “this…is…all…GYN normal stuff. You are normal.” Normal.
She says that I don’t have cervical cancer and that there is no need for my cancer hospital to be monitoring me all the time for that. She then told me that MSKCC wants her to focus only on cancer patients who are undergoing treatments, and to stop seeing ‘normal people’ like me.
What I found interesting is the number of times she used the word ‘normal’ during our dialogue. Her first and last words were, ‘you are normal,’ as if she was trying some kind of psychotherapeutic approach on me.
Could it be that I am exposing myself to too many cancer stories? Maybe more than I can mentally handle? Or perhaps I am a control freak. Or just scared and looking for guarantees. But there are no guarantees when it comes to cancer. One of my goals for 2016 was to let go of such attempts to control, and so far this hasn’t been the right way to start the year.
But, they say I am normal. I wish I could believe them.
How many doctors’ opinions do you seek for peace of mind or reassurance?
I’m sorry you feel worried. And it seems strange that they are using the word “normal,” which is not exactly reassuring. Perhaps you can ask them not to say that. I feel like my doctors tend to say that I am “fine” when there is nothing to worry about.
But the larger question is how to cope with anxiety. Because that is a constant. I also deal with that, especially when I have scans coming up. I try really hard not to think about them. It’s really a mental game.
Thank you for your words.
The thing that got to me is that I still have no answers. Sure, I am thrilled it isn’t cancer. But I am still seeking some answers. And how can having pains be normal? I thought the same thing you thought about using the word ‘normal’. Perhaps I come across as someone who is only concerned about cancer. Collateral damage affects me too as well as things that may be related to ‘getting older’. Maybe I need to communicate better.
And I agree this is mostly a mental game. Maybe I need to trust a little more too.
If you are in NYC I would be happy to recommend a therapist I have worked with – she works w cancer patients. You can contact me via my blog. Be well, Deborah
Thank you, Deb! I will send you a note. I am already seeing someone at my hospital but it wouldn’t hurt to have an extra contact.
I just saw my oncologist last Thursday. (Three month check up) I told him I still have pain in my feet. He assured me it’s not the Tamoxifen. I think it’s a normal part of aging. The other day before my onc appointment I stopped to get a sandwich and when I got out of my car I literally limped in because the pain in my right foot was so severe. He said since it’s not the Tamoxifen, because Tam does not cause joint pain, it could be something else but didn’t suggest we look into it. He didn’t use the word normal to me but did say I’m his poster child for being a breast cancer survivor. lol! So I just live with the daily pain. So annoying.
I am sorry you are dealing with symptoms too. I thought joint pains was one of Tamoxifen’s side effects. I am part of a few online communities and I often hear of other women experiencing this. This may be a silly question, but have you tried seeing a podiatrist? One thing I’ve realized, is that ever since my diagnosis, I feel that my onco is responsible for every symptom I have. But truth is she is only there for cancer-related symptoms. I’ve been advised to continue to see my regular doctors and specialists outside of the cancer hospital. It is frustrating to live with pain and not know the cause of it. I hope you get some answers soon. Feel better.
Wow. Just like you needed to pause for my post, I needed to take a pause for responding to yours.
First, a big inhale and exhale over here.
Ok. I think I feel sad for you, my friend, knowing that you feel this way so often. To know you don’t feel comfortable in your body. I certainly know how that feels and I seek second opinions on a lot of things. I relate to that. When I get my mammogram and they say it’s “normal,” I ask, “Are you sure?” Because I’m not sure I believe it. I think something must be hiding, lurking, brewing. It can’t be that easy. It can’t be as simple as, “We’ll see you in one year.”
But, maybe it is. I’ve talked about this with my therapist a lot. While the fear still exists, it’s not as intense anymore. Have you talked to someone recently? Maybe you might want to, if your not, as a way to help control, understand and/or deal with these fears. I say that because, it’s no way to live. Waiting for the other shoe to drop. I know that we can never make that feeling go away completely, especially since we are so connected to the breast cancer world through blogging and Facebook. We hear terrible stories every day. But maybe there are skills to manage the anxiety.
I hope it’s ok that I said all of this. It comes from a place of love.
Carrie, I absolutely welcome your advice, especially when your recommendations have worked for you. Thank you for caring.
You just made me realize that I don’t feel safe in my own body. And this is yet another situation I have no control over. I started seeing a survivorship therapist at my hospital a couple of months ago, right around the time when we were losing so many women to MBC. It has been helping a little. You are right, this is no a way to live. My issue is not being able to control my fear when experiencing symptoms that don’t go away or when I am approaching a scan appt. I may have trust issues. My therapist and I are trying to find ways for me to cope with my anxiety better.I am glad you’ve been coping better with yours. Hoping it gets better for the both of us. .
Hi Rebecca, I find myself in this situation time to time, not often related to my health problems, but something I really care about. yes assurance sometimes is not easy to get. And I think it is a normal reaction about things that I do not understand or can control myself. Others’ opinions, especially the experts’ opinions for sure counts more and are needed in such times. In addition, I believe having a second opinion in health related matters is often a great idea. So I totally understand you 🙂
Thank you for understanding. Your words matter to me.
At the end of the day, I am the one accountable for my health. I’ve been thinking about it more — I realize that if I need to get a second or third opinion in order to reach peace of mind, then be it. But I want to stay rational. I just need to find some level of balance. I am working on finding ways to control my anxiety by looking at the whole picture. Wish me luck!
you have all my wishes of luck! 🙂
I wish I could hug you right now. Anxiety is a real, serious issue for tons and tons of cancer survivors. Which is another way of saying you’re normal, I guess! Is mental health care, like how to deal with post treatment anxiety, part of your post-treatment care? If not, demand it. For reals.
Beth, you just did (hug me)! Thank you. I started seeing someone for anxiety at my hospital but I might need to do more, on my part. I thought it would get easier as time went by, but it ain’t happening.
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For many many years i monitored every ache or pain wondering when and if I should go to the doctor… Some times I did when pain went on to long but there was never a relapse of cancer but I do have late stage side effects if my cancer treatment … I feel like my body let me down, it was quietly harbouring cancer without me knowing so how could I know in the future if cancer came back… I think many of us feel like this but when it totally takes over your life it is time to find strategies to deal with the stress and that is what you are doing by speaking to a therapist… Maybe to you might need to step away from reading all the blogs for a while till you feel more settled.. It really can become distressing take care..you are not alone in your fears.. Helen
I agree there are some trust issues when it comes to our bodies. Glad your symptoms have only been related to collateral damage from treatments (still, they should not be ignored). I experience those too. I think for me it isn’t only one thing (like reading blogs, or being part of online communities), but the amount of exposure. What I will do is take some breaks from some online communities (blogging is actually helping). I also have a dear friend struggling with stage 4 whose MRI did not show one of her original cancers, and another friend whose MRI did NOT show her liver mets, and now my friend’s cousin is struggling with stage 4. So I need to find a sense of peace with my situation and stop comparing.
Thank you for your support.
First of all, I’m sorry about your pain. And I’m sorry about all the worry. Having said this, cancer is all about worry. You were diagnosed with cancer at a young age. You have a family history. You have a mutation. I mean none of those things are “normal”, so why wouldn’t you worry? Having said this, I hope you are still able to find some balance. But this takes time. You’ll get there. Maybe you have a case of PTSD, like Beth Gainer recently wrote about. I’m glad you are seeing someone. I would suggest journaling because writing down worries sometimes helps me. Also exercise helps me clear my mind and helps me physically feel better – I have various aches and pains from my AI. So that might help. And if you need to take that online break, do it. I am not a huge worrier, in fact, I’m sort of the opposite. I always figure why worry about stuff until I have to? Of course, this method of worry doesn’t always work well either, but that’s another topic. Be extra kind and patient with yourself. You’ll figure out what you need to do to relax a bit more and find that balance. Hugs.
Thank you, Nancy. I agree with you — I think I am also dealing with PTSD. I’ve also heard that these types of pains can be connected to treatments. I believe there are benefits to not being a worrier. It’s a helpful attribute to have, especially during cancer. And yes, cancer is all about worry. I have faith days will get better. I just wish it would happen quicker.
You know, the thing is, it’s normal not to feel normal ever again in Cancer Land. And we do well to remind ourselves that when doctors tell us we’re ‘normal,’ they are using the word in a much different way than we are. And a lot of them are not very well clued-in to assessing our symptoms thoroughly. A lot of orthopedic joint-related issues come up after cancer treatment. Then there are treatment side effects, that can last for a very long time, or recur, like fatigue, joint pain from estrogen inhibitors, limited motion, cording, etc. Then there’s just ‘normal’ (!!) wear and tear, which can be hard to distinguish from the ‘what-if-it’s-cancer’ kind of symptoms. I don’t think most docs really understand what cancer patients go through with all this. I hope you get to the real source of your hip pain. And I hope your PT is a smart one, because that could help a lot, and follow up with ortho if it doesn’t, because I bet it’s something like a little early arthritis or tendonitis/bursitis. You may or may not be ‘normal,’ but you are NOT crazy. xoxo, Kathi
Thank you, Kathi. I know you are a PT expert so that must be helpful to you when it comes to being able to identify some of these issues. Or at least to be aware of them. My PT is young. I am also not having too much patience with my progress. And at times I felt like the PT was making the pain worse. I informed my ortho which is why I am seeing him this coming Friday to come up with a new plan. I am considering stopping Tamox for one week like my onco suggested, after seeing the ortho. That should be interesting.
Rebecca, I’m not sure you’re looking for more confirmation that you’re normal so much as needing affirmation of your very real symptoms and pains and perhaps some answers that go along figuring out why. You’re not comfortable in your own body and you want answers, so when you get what feels like a medical brushoff, you keep looking for someone who will delve deeper to relieve you of your symptoms so that you can actually feel normal. I’ve learned that doctors don’t have all the answers. Rather than admit they don’t know, they give you a definitive “normal.”
Eileen, thank you for recognizing/acknowledging the reasons for my struggle and for identifying something I had forgotten about — doctors don’t always have the answers. And that has to be OK sometimes. Thank you for making me feel better.
As you know, I have no trust when a medical professional tells me things are fine. Why? My experience has taught me they make mistakes. I have no trust, I’m always waiting for the other shoe to drop, that’s just the way it is. While I find my anxiety is less than it was, it will never be gone. It may sound strange, but I’m a bit self-righteous about it. I have the “proof” of my experience. Oddly the self-righteousness has made me calm! Weird, I know….
Oh yes, I remember you story. Your experience is one of the reasons I push to know more. I also know 2 other people with similar cases to yours. Once you’ve experienced a false-negative (did I get it right? I tend to get confused by the wording.), that is all it takes to question everything. I think you’re sensible.
I can relate in many ways to the feelings you are experiencing. Just a suggestion–have you considered practicing yoga? Luckily, I found a cancer survivor group that offers free yoga classes–it is wonderful mentally and physically. I strongly encourage you to see if it is available–it has been a lifesaver for me!
Barbara, I feel terrible I have not been very active since my diagnosis. I tried yoga one year, which helped a lot, but then I stopped. Then last year I purchased a DVD to practice yoga at home. A friend got me the yoga mat. I have done nothing. I agree exercising can help manage the anxiety. I realize I need to do more on my part.
Thank you for the suggestion and encouragement.
Rebecca, I think the word “normal” has no significance whatsoever, especially once one has entered Cancer Land. I’m not sure why your doctor said it so much. That being said, I wish I could give you a big hug; I’m so sorry you are in physical and emotional pain. Survivorship is so very difficult. Nancy mentioned PTSD above. As you know, I suffer from PTSD and have been seeing a therapist and taking medication for it. A fantastic treatment for PTSD is called EMDR (love these four-letter acronyms!) It doesn’t involve medications. I wrote about it in my post “Matter Over Mind”; I know you commented on the post, but here’s a link to the post, which contains information about EMDR.
Beth, thank you for reminding me of your excellent post about PTSD and the benefits of EMDR treatment. I will mention it to my therapist. And you are so right when you say nothing ever seems normal again once you’ve entered cancerland. I’m still figuring out my new ‘identity’. It feels as if I’ve been introduced to my body for the very first time. I find survivorship to be more challenging than chemo. And of course, they are also very different.
Thank you for your helpful tips and for the cyber hug.