Cause for concern? Or am I just going crazy?...

Adelaide77

Cause for concern? Or am I just going crazy?...

Adelaide77

I feel like I am going crazy. I am convinced the cancer is back. In my bones, or in my brain, or in my liver, or in all of the above. Logically I know it's not likely since I was stage 1, no lymph nodes, low oncotype score. Logically I know I'm just being anxious and paranoid...but I don't have the wherewithal to listen to logic right now, and these worries are CONSUMING me and eating up every ounce of my mental and physical energy. It doesn't help that the tamoxifen is contributing to my crazy. I do not handle tamoxifen well--it severely affects my mood--and I know that the tamoxifen is probably a big player in putting me into the mental state (and, oh, what a fine state it is!) that I'm in right now.

I worry that I'm a malingerer, that when I see my MO next week and ask her for some scans for peace of mind, that I am pulling energy and resources from those that really need it. But what IF I'm one of those who needs it? I have lots of niggly symptoms, but nothing (I don't think) that screams, "This is metastases." I think the worrying all started when I found out a week and a half ago that my osteoporosis is worse than I thought. A spine xray showed demineralization & kyphosis and also confirmed a suspected T12 fracture. Immediately my crazy brain started wondering if mets could somehow lead to osteoporosis, since all the bloodwork my endocrinologist has ordered to date has not found an underlying cause for such an advanced case of osteoporosis at age 33. And now I worry that every symptom is somehow mets.

So, I'm going to share my symptoms. Please tell me honestly, is this just anxiety? Or is there enough here that I should ask for scans/imaging? If nothing else, I feel like I need the additional imaging for peace of mind, because I really think I will go off the deep end if I keep living in this state of wondering and "what if." I don't like who I've become with all this worrying. I feel I'm a horrible wife and mother right now. This is driving me crazy.

Anyways, symptoms are...I have been having headaches that keep showing up in the same spot on the right side of my head. I've had a few flashes of light. I've had a few instances of what I think is called phantom odors...where I smell something that I know is not there...like very strongly smelling cinnamon raisin bread while driving on the freeway miles away from any sort of business or civilization. I have a hard time thinking of words and also struggle to get words out (sometimes I struggle with this when sleep deprived, but it's way worse than usual). I struggle to remember what I'm doing when I'm in the middle of doing it (like if I'm on my way to do a simple task, I forget what I'm on my way to do literally 10 seconds later...this happens probably a dozen or more times over the course of a day). I have become EXTREMELY angry and irritable, but I think that is the tamoxifen. I've had intermittent nausea for the past month that I was beginning to think might be gluten-related, but now it seems to not be related to my gluten consumption based on when I feel it. (I did get some bloodwork done this morning to check for gluten intolerance and will find out later this week.) Yesterday afternoon a sharp pain started on my upper right abdomen that has continued constantly into today, but now I only feel it when I breath in deeply. And this morning I started getting sharp chest pains, also on the right side--sharper than the abdominal pains, but more intermittent. I've had chills and low-grade fevers (99-99.5...which is a fever for me since my normal is a solid 97.5) on and off for about two months. And my energy is so, so very low. Sometimes I feel like my energy is so low and simultaneously that everything in life is DEMANDING all my energy and focus that I seriously wonder if my body might forget to breathe under the weight of all the other pressing demands. I  know it sounds crazy, and this is probably the anxiety and depression, but it is tearing me apart. The low energy is probably also from my low iron. Recent bloodwork showed I am severely iron deficient. I just started taking a good iron supplement, so hopefully that helps on the energy front.

So, should I be concerned? Or is this all anxiety? I cannot think straight anymore to sort any of this out.

GemStateGirl

As someone who suffers from anxiety, it mostly sounds like anxiety to me.  I recently had a three month period of various aches and pains that didn't go away but held off contacting my oncologist because I couldn't decide if I was exaggerating things to myself or if I had mets, in which case, I wasn't sure I wanted to know.  When I finally saw her and mentioned my symptoms (back and hip pain), she ordered an xray mainly for my peace of mind.  It turned out I had some degenerative changes (i.e. arthritis) which they consider normal at my age (59).  By the time I had the xray I had worked myself into a major state of anxiety and when I got the results all of a sudden I felt so much better physically and mentally.  I think stress can make you feel bad physically and my advice would be to ask for the scans or whatever other test you doctor thinks might allay your fears.  The stress can be very harmful to health if it goes on for a long time.

I think alot of cancer patients go through what you're going through so I'm sure your oncologist is used to helping people in your situation.  

One thing I was surprised that helped me were relaxation tapes by Belleruth Naperstak.  Here's a link to them online:  https://healthy.kaiserpermanente.org/health/care/!ut/p/c4/FcpBCsMgEEDRs-QAwyAkOnYXor1Ca3eDGVIhahCbXr8Nf_f4-MJ_hc-0cU-18I5PDFFKl3bjz5oqnGmVio_rOxpvmTGUCpHjWy7j1lPcBYPz1iyT86Ct1qCUVzDb0QERTUYZM95pwSNn-s7D8AN76O4U/.  She has them for all different situations, including cancer and anxiety.  It's often good to listen to them at the end of the day so you can get a good night's sleep.

Here's a short one on YouTube:  http://www.youtube.com/watch?v=WhTSaNwnip8.

I hope you can talk with your oncologist soon because I think you'll feel so much better after getting things checked out.  My lesson from my experience was not to wait to express  my concerns to my doctor.  By doing that, I caused myself alot of unneeded stress.

Take care and let us know what happens.

Alicethecat

Hello Adelaide

I'm sorry you're going through all this.

In case it helps, I've had a few odd lumps and bumps and odd things happening since I was diagnosed in January 2012 but they've turned out to be nothing. In brief, I've had:

. A false positive bone scan

. A fatty lump in the knee that turned out to be a lipoma

. A few headaches on the right side - eye and brain MRI clear

In addition, I've recently had a biopsy of a lump in the left eye - awaiting confirmation but surgeon says it looks like it's part of the lacrimal gland (tear gland) that has dropped down.

But worrying is very tiring so if in doubt, get checked out.

We all worry but quite often our lumps and bumps and sensations turn out to be something other than cancer!

Best wishes

Alice

shoppygirl

Adelaide

I also suffer from anxiety and unfortunatly this BC journey had added to it. So much that I seem to always have symptoms of something that could be mets. The strange thing is that once these symptoms clear up and I start to feel safe again, new ones crop up! As an exampleI was convinced that I had colon cancer during chemo as my bowels were in such bad shape but now they are fine and I no longer worry about that. Unfortunatly that has been replaced by other fears. I think many woman that have been through what we have are plagued by these fears and concerns. I find it very helpful to connect with other women on these boards and realize that I am not so crazy after all. I am just recovering from something very traumatic. Gentle hugs!

kathleen1966

I also suffer from anxiety and a lot of your symptoms I have also had. A person can get hyper sensitive to body sensations when they have anxiety and have also had cancer. I think a lot of your symptoms could be caused by the tamoxifen. However, you seem to be soo very, very worried about it regardless of your anxiety that I think a scan would put you at ease.  Then you will know where to start.  You will see that it is clear and you will remember this when your symptoms call out to you. I too worry, although I know this is a waste of time, I still do...and yes a lot.  My cancer was more advanced but I think the worry is the same for all of us, regardless of how extensive our cancer was at diagnosis. But you are right, these thoughts are too intrusive for you to function and feel good. It is hard to think straight, don't feel badly about this. You could ask for a prescription to help you and also get scans to ease your mind. You shouldn't have to be soo worried!!! And you also don't need to feel any guilt for wanting the scans.  Your worry is important!

CJRT

I just stumbled upon the posting. I know I am your worst nightmare because I did have mets. However, I also know what it is like to struggle with the anxiety part of things. Some people are just hyper-sensitive to physical sensations, and I think that breast cancer can tend to magnify that. Not only are we attuned to things, but at every visit, we are asked the standard questions making us survey whether we have experienced pain, neuropathy, falls, etc. As was said to me, just because one fluke thing happened does not mean every other time you hear hoofbeats it will be a zebra. However, I think any reasonable MO realizes the tendency to feel this way and will do reasonable things to alleviate some of your more realistic concerns. For example, I had headaches while on Tamoxifen and was sent for a brain scan though I was told that she was sure it was the Tamoxifen, that she did it for my peace of mind and to move on treating them for what they were (rather than brain mets!). As for the Tamoxifen, I had migraines with it. The neuro symptoms that you are describing (including the olfactory hallucinations, word-finding difficulty, and difficulty concentrating) can be migraines, and I know first-hand that Tamoxifen caused me migraines. I've also been told that regardless of our normal temperature they don't consider upper 99's a fever and that menopause can cause temperature fluctuations. Obviously you are young (as am I), but the hormonals are messing with our body and thermostat (thus hot flashes, night sweats, etc.). Enough of my rambling, but what might be helpful is to bring your list to your MO and jot down the course of action for each consider (i.e. monitor for certain period of time then scan if no improvement, etc.). For me, it always helps to know a plan and then I am more at ease with the not knowing because I know they will be addressed as needed. Good luck!