Mets scares, a part of the new normal.

newter

I was reading recently about AlaskaDeb's mets scare and at the same time I was going through one of my own.  The entire time I was making my negotiations with the powers that be that I could probably handle anything other than the death of one of my kids and the possible mets dx I was expecting.

Well, unbelievably, I did not get it and as shocked and relieved as I am, I know this is just part of my new normal and every little symptom will lead to a scan/mri/biopsy/procedure of some type plus lots and lots of anxiety.

Here is what happened to me.  I had my ooph at the end of July and started Femara about a month later.  About the end of September I started feeling off balance, like I might fall easily, there was a bit more motion around my head than there should be.  I thought it might be the Femara and stopped it for about 5 days and really did not see much of an improvement plus I was afraid to be off of it.

Went back on the Femara and things were not worse or better so I stopped all my meds for about a week.  Still no real improvement now but I am now in a bit of a fog from the stress of thinking I have brain mets and going through all the fun treatments in my future.

I called my onc and they immediately tell me I should have a brain MRI before going to the office.  So, last Saturday I had my MRI and was so scared  to hear the results I had my husband call.  It came back fine but OMG, what stress I went through.  I still do not know what is wrong with me and I now have an appointment with my PCP to see if it is an ear thing or something else.   But, I actually feel a bit better, not great but better. 

This is how weird I am, I was half expecting the Oncs office to call and tell me they had read the wrong person's MRI and that there really is a problem with my brain.

I really am greatful right now but I am not looking forward to the next scare and the one after that and so on and so on.  Am I alone in feeling like I am stage 4 waiting to happen?

Thanks for listening,

Newter  

NoH8

My 2nd scare was so much easier than the first one. I freaked out a lot for the first one and decided I wasn't going to put myself through that again. I used a lot of positive self talk during the 2nd one, reminding myself that worrying wasn't going to change anything, just make me more miserable and that whatever is is already there. The tests are nothing to be worried about, because knowledge is power and without that knowledge there can be no plan of attack.  I also told myself IF i had mets freaking out beforehand wasn't helpful. I was surprised just how much all that helped. I don't delude myself into thinking I'm fine and will always be fine, just to proceed cautiously optimistic until I see the evidence.

gsg

newter-

you are absolutely not alone in feeling like a stage iv waiting to happen...and that's an excellent way to describe it.

as i'm coming up on my 1-year anniversary of the completion of all treatment this week...i'm completely preoccupied with recurrence.  it's all i think about.  i'm constantly examining my breasts...but kind of with trepidation...picture sticking your finger on a hot burner...because i'm scared i'll find something and i don't want to feel it.  i still have a seroma where my tumor was and that's unnerving to feel.

i've spent the afternoon googling recurrence statistics for people with my diagnosis...it's given me a headache and made me nervous.

i'm relieved for you your tests came out fine....and wish i had some advice on how to get rid of the anxiety.  "talking to myself" doesn't work for me like it does for Amy.

LizM

Newter, Unfortunately this is our new normal.  I just went over my 2 years from diagnosis.  I am constantly worried about my aches and pains.  The beginning of the year I was worried when I had bloodwork come back with slightly elevated liver enzymes.  I switched from Arimidex to Femara in August and am now experiencing new and different joint/muscles aches than while on Arimidex.  I am worried again even though I know these new side effects hit at about 8 weeks after I switched drugs.  I am constantly talking myself out of thinking I have mets.  It is a horrible way to live.  I just  hope it gets better with time. 

Also, my sister was having dizzy spells after being on Femara for a while.  She did not even think about it being related to the drug even though it is listed as a side effect.  She also had a brain MRI and all came back fine.  Happy to hear your scare was just that. 

Take Care,

Liz

wallan

HUGS to you. I know how you feel. It sucks and is totally normal.

I tell myself is aches and pains get worse they go see the doc. Otherwise don`t stress too much. But, I do stress. I am 3.5 years out now and I think my cancer has more a chance of showing up now than it did a year ago. How weird is that..

You are not alone. Come here and vent all you want

Wendy A

Member_of_the_Club

I think hormonal changes can describe what you were experiencing. It sounds like what i was experiencing when I first went on tamoxifen, scared the crap out of me. I thought I had brain mets and my (previous) onc didn't take it seriously like yours. I started having terrible anxiety attacks and then went on effexor and both the anxiety and the weird head thing went away. So if it comes back, consider effexor.



I just had FOUR (I always capitalize it) breast biopsies in a little over a month, the last one being for an area deemed highly likely to be malignant and while it wasn't a mets scare, it was awfully scary. And I was feeling like it was a harbinger for mets. I also feel like I'm way behind on everything I wanted to accomplish this fall because I was careening from scare to scare.

Hana

Well - listen to this new one! I finished 3 1/2 yr Tamoxifen and finished 1 1/2 yr. Femara. Everything seemed normal and 2 months later I started terrible hot and cold flushes every 20 min. Pain in lower and mid. back, dizzy spells, tired to death - three weeks later I broke down and went to doctor sure that I have bone mets.

I am still waiting for blood tests results but doctor is convinced, that I am OK - only suffering from Femara WITHDRAWAL and my hormones are all over the place.

I didn't hear about something like that before. I was told that it takes long time to get Femara out of our body system. That is why she is also making me take pills for bones for another 8 months after I finished Femara.

Lucky me.

gsg

i hate new normal. i want old normal.

Odalys

I know what you mean.  Life will never be the same.  (((((hugs)))))

Glad your MRI turned out to be ok.  I'm also on Femara and have experienced similar SE but my onc thinks they are from the drop in hormones.  Similar to pregnancy, a decrease in hormones can cause our bodies to be out of balance.  I hope that is all you are experiencing. 

newter

Hi everyone and thanks for responding.

Amy, this was not my first mets scare.  I had one right off the bat at my original dx with my liver.  My surgeon saw a spot on it and I had to have a couple of follow up CT scans to make sure all was okay.  I was so freaked out at the time with the dx, surgery and starting chemo that the liver thing barely registered for me.  I also had something show up on my chest xray that turned out to be b9 after a really fun CT guided biopsy.  This held up my original surgery by a month because it took so long to get the results.

Member, I am confused about your biopsy, is everything okay or do you have a new primary?  I am keeping my fingers  crossed that all is ok.  Funny, I was so worried about my brain that the day before the MRI I had my 6 month mammogram and barely blinked an eye when I was called back into the xray room for some compression pictures. 

Gsg, me too,  gone are the days when I could bask in just worrying about my kid's ear infections etc.  Now every little twitch has me wondering if mets are settling in.

Hope everyone has a great rest of the weekend.

Member_of_the_Club

I'm sorry I wasn't clear. The docs thought it was highly likely that I had a new primary but the biopsy was benign, so all is well, though it was harrowing.

saluki

Hana-- I can tell you -- I've had most of those SE's for the four years I've been on Femara.---

Yep hot flashes every half hour--you could set your clock by them----What is an almost sixty year old doing with hotflashes like that?  ---Much worse than chemopause---- Fatigue --relentness.

Dizziness for years.  --although balance has always been an issue with me--femara only made it worse.

So glad to hear MOTC that all is well. Sorry you have had such a horrific time. Did not realize this was going on as I've been in self preservation mode lately.

I agree with you Wendy--don't think that fear is weird at all. --The farther out from Dx the more familiar we are with what is normal for us---when something doesn't fit that norm its terrifying.

I've spent since the end of August out of my mind in fear--Bad cough that would not leave and unending heavy green phlegm into November.  I was inconsolable figuring the worst...... and I know the rule of thumb --tell your Doc's anything that lasts more than two weeks and I kind of hinted during my Doctor appointments but never actually told them what was going on.

One of my Docs a few weeks ago tried a new med on me to help pump up my immunity and whatever it was finally left!  Horray! I've been a wreck for months----

A few days of peace and now my PCP is nagging about liver scans again---keeps handing me newly dated scripts for abdominal US beause me liver enzymes run high.  I've had the scans repeatedly and I do have a benign hemangeoma and the last line of those CAT scans and US always read --we cannot rule out solitary met--They very rarely biopsey a hemangioma for fear of bleeding problems.  But my breast surgeon says if it squalks like a duck and talks like a duck its a duck so he has said to put it out of my mind.  But others won't let it go---

My liver enzymes have always been marginally elevated --that is normal for me---And since my oncologist is not requesting the scans, ---I'm filing them away----If my PCP wants to put notes in my chart that he requested a US on such and such a date--so be it.   And, I will get them done if my next labs in three weeks should be elevated beyond what is normal for me----I go nuts just with these repeated labs every few months.

  I need to get off this merry-go-round of panic.----Just want to be able to take a few deep breathes before the next fear grabs hold.  -No way to live.

GSG--I'm with you---I hate new normal! You are so right Newter---very apt description

"you are absolutely not alone in feeling like a stage iv waiting to happen...and that's an excellent way to describe it."

 

Wishing all peace of mind in this holiday season surrounded by nothing but warm, fuzzy, good thoughts.

JoanofArdmore

Awwwwwm, Newter, I'm sorry.Yes it's terrifying to have something that could be mets.Yes we bc survivors are always looking back over our shoulders, as we try to outrun the devil.

Last winter I grew really dizzy.I now know it is "positional vertigo"--if I raise my eyes (from the sidewalk)when I'm walking, or turn my head to look behind me...dizzy!

I KNEW it was Femara.Everything so far (over 3 and 1/2 years, has been Femara SEs.

My onc had me stop the drug--three week vacation.To "make sure it's from femara."

I did, it was.

But Honey, it took much longer than 5 days to go away!These AIs are VERY, very strong drugs, with VERY long half-lives.It took over 2 weeks for the dizziness to leave.

(But it took MONTHS to return, so that was good!)

Best to you, Joan

Anonymous

Newter, girl, you must have been terrified and I'm so sorry you've had to have not one but two scares already! I must say that I've been especially lucky in that all of my scares were self-induced and vastly in my imagination. I spent my first year post-tx at my oncs awaiting various tests that I was certain would reveal mets. And believe me, I ran the gamut from brain to lung to bone to liver and sometimes 'had' all at once....plus a recurrance and a new primary! Fortunately, nothing was found (so far), but I'm beginning to realize that, like Amy, my panic and constant anxiety won't alter in the slightest whether or not I actually have mets (somehow, I've always felt like always being on the alert & worrying about the worst could prevent its happening!). Furthermore, I'm coming to see that time spend obsessing about mets and scaring the shit out of myself was time that could have been spent embracing this awesome life that I've been given this reprieve to enjoy.

Okay, so I know that that all sounds way schmaltzy, but it's true! And it's how I really feel on the issue...so just call me freakin' Susie Sunshine!

~Marin

caaclark

I'm coming in a little late here but I feel exactly the same way-just waiting for that other shoe to drop.  I'm not sure what the answer is and to tell you the truth I am a little tired of people telling me that it is normal to be scared.  I hate thinking about cancer but I have not yet perfected not thinking about it.  I definitely go through the motions of my day and no one would even know how freakin' scared I am, but I can feel the stress of it and at times it becomes overwhelming.  Then I take a step back and feel guilty since I know there are so many women who are stage IV and they would love to have been diagnosed at stage III.  I keep thinking that as more time goes by that I will get a handle on it but so far that is not what has happened.  What I have done is gotten really good at acting like I am not scared.

kimvidito

OMG you guys.  I have the stupid dizziness thing too.  I am pretty sure it's due to menopause but I will see the doctor next week.  I am also causing myself to have such anxiety over it.  I think I will probably postpone going back to work another month so I can get over this.  It feels so good to share with you guys because I don't feel like a freak.  You all feel the same way.  Thank god for this website

Kim 

JoanofArdmore

Kim, this website is totally wonderful!It got me through all the bumps in the road, my whole journey.

It's a very BIIIIG site, full of women of all ages, from all over the word.Anything someone can go through, others here have gone through and can lead them through it.

My dizziness advice to you and everyone dizzy() is

if you get very dizzy, and feel as if you will fall, STOP!!Because you WILL fall!

Stagger, grab something, do whatever you have to.

I learned this by falling right in the street (in front of Macys!)People came running to help me.Embarrassment city, AND I was lucky not to have broken anything--teeth dont like hitting pavement.)

Yes it's embarrassing to actually reel and stagger, but a person does what she's gotta do!

newter

You guys are all so wonderful and supportive.  Joan and Marin, you both are always there when I post something that is bothering me.

Carol, I know what you mean about the women already dx'd at  stage 4 and the guilt.  It is almost as if I am trying to prepare myself so it does not come as such a shock if and when it does happen.  It is impossible for me not to think about it and worry, especially when weird symtoms arise or I am waiting on test results.  I hope it gets easier as time goes by but I doubt it will, at least not for me.  Hey, we were dx'd the same time, Jan 2006.

Susie,  I was wondering where you have been, I had not seen much posting from you in a while.  I am glad your cough is better and MOTC, I am glad your biopsy  was B9. 

I wanted to answer everyone a little better but I don't feel great (my daughter had strep Saturday and now my throat is feeling a bit icky) and I just want to go to bed now.