Do You Ever Get the Feeling That Something Is Just Wrong?

pupfoster1

I am about at my wits end.  I had a pretty comfortable summer, relatively stress free from cancer thinking, but now it's basically almost all I think about again and the possibility of a recurrence/mets. 

I've had this weird feeling in my abdomen (beginning on right/cancer side) under the rib area that has now moved over to the left side.  I can not sleep on the right side for long as my ribs start to hurt there.  The area where my nodes were removed is hard and sore, kind of bumpy in areas.  I had clean scans done early summer, and I've had 2 clinical exams and blood work done last week (all in normal range including tumor markers), and I'm starting to think the doc's office is starting to think I'm a hypochondriac (the RN said to see how I feel in a week--huh?).  Right now as I'm typing this I can "feel" something weird in the right rib area, not a bump, but internal.

I just feel like something is just not right, and am so frustrated.  If it's not cancer that's great, but I feel like I'm not being taken seriously.  I'm even afraid to tell my husband more because I think he just wants to trust the doc that since the clinical exams were OK, that I'm fine.  I feel like if something is going on, although I will freak out I'm sure, I want to know sooner rather than later.  I feel like I waited too long for surgery (7 weeks to get into Johns Hopkins) and regret that decision because of my high node count.  It's to the point now where I am definitely feeling depressed and just want to sleep in the mornings when I know I should get up and go exercise and do stuff with my kids.

Any guidance here would be appreciated.  This is really getting me down.........

Sharon

KerryMac

Sharon, it is funny, as one would think that the further out from treatment one goes, the less worried you become. I find I am actually more stressed about a recurrence now than I was after finishing treatment.

I don't have much advice for you, except if you really feel something is wrong, then don't be put off by someone (ie a nurse) telling you it's nothing. I think one thing I have learnt from this whole mess is to trust your instincts. On the other hand if you think it could just be "canceritis", then maybe just give things a week or two and see how you feel. I get all sorts of twinges that I get freaked out about that just disappear, and it is something I have gotten better at living with.

Also, really, if you think you are depressed, get some help for it. Lots of people find an antidepressant to be very helpful, or maybe counselling. There is no need to be living in misery. 

littletower

Hey Sharon:

So sorry you are going through this...and I totally get it. I agree with Kerry. If you have an "instinct", you should pursue it. We should never ignore that inner voice. That being said, cancer makes us nuts; the overwhelming, never-ending worry about what we're feeling, where and when. It's almost impossible for me to give myself a mental break from it. I admire that you were able to do that over the summer. I know it's hard, but exercise helps so much with depression. It does for me anyway. Makes me feel like I have some control over this body that has both betrayed me and now feels (and looks) so alien to me. And absolutely, anti-depressants are a huge help for lots of us here. Don't know if what I said helps at all, just know that you're not alone.

pupfoster1

Thanks girls,

I have already been on Lexapro for a while, but need to find a new psych doc.  Just don't click with the one I had, and she basically was just a script writer.  I need a therapist to deal with this s#%t. And I get what you mean Kerry, while we were in treatment we felt like we were "actively" doing something to keep it at bay. Not that I WANT to have to go through that again, oh God no, it's just that there is definitely SOMETHING going on, cancer or not, I just need answers.  

Sharon

KerryMac

Do you have an Oncology Psychiatrist?? I saw one a couple of times during Chemo, and she was great. She really settled my mind on a lot of things. They would maybe have more on an insight than a regular Psychiatrist, and be more helpful.

skigrl

pupfoster1

I feel i could have written those exact words! I to have the same pain you have internal, same side everything. I told 2 docs. about it, had a scan this summer as they were thinking ribs. I couldnt get it through their heads that it didnt feel like rib pain. Scans came back clean, but i still wonder if there is something that they missed? My latest blood work showed my calcium levels high and white blood cell count very low. I have no idea what any of that means.

I also noticed hard bumps forming on my head on top towards the back that i dont remember them being there before, or were they  there and i am just noticing every bump and pain ten fold now???

I try and stay busy with my 2 young kids, keeping the family life as normal as can be. I dont see the oncologist until feb. and i am sure when i mention the pain AGAIN he will just feel that area and say  HMM, i dont feel anything.  SIGH. I also waited 6 months before i had my lump checked  because when i pointed it out to my husband his reply was, " you just had a mammogram last month and it showed all was good!" So i didnt call the dr. but feeling it hurt and grow all summer, i should have listened to my intuition.

I hope you can find some answers soon. For sanity's sake.

diana50

hi sharon

i am glad you have this forum to come to; husbands and friends just always don't get it.  i think the fear of relapse is always in our minds....i also think our bodies have a lot of healing to do ....even after treatment.  what i have found is this; in the early stages after treatment i found myself going back to doc on things....i was very hyperviligent on any symptom i had...i wanted them to check everything....you are still recently "out"  and it isn't weird or unusual to be tracking your body very carefully.  i suggest that you follow your instincts...don't beat yourself up ....and let the doctors do their thing.  you have just been through a big trauma....and still working your way through this cancer stuff.  just be where you are; don't second guess. if you want stuff checked....get it checked.  our doctors do this for a living...that is what they do...and they don't know you as well as you know yourself.

hang in there. one day at a time.

diana

clariceak

I really understand where you're at, and I'm a big believer in trusting your instincts.  I think Kerry's suggestion of a onc psych is good.  I feel like I need help moving forward as well.  I'm not obsessing but last week I had an episode where every night before I went to bed I kept thinking "im going die of this shitty disease".  I have no idea what triggered it. 

 And i'm like kurt cobain - "just because you're paranoid, doesn't mean they're not after you".  I received a phone message that said "your bloodwork is within normal range", but I hear "it's normal but it must be creeping toward the high end of normal".  Why can't they just say it's normal? 

I do think that while we're not in active treatment, we can treat ourselves by exercising.  Not that I've done very well in that department lately.  The weather is crappy here.

You're not a hypochondriac, You know your body better than anyone else. 

SpunkyGirl

Gosh, Sharon, where you are is a tough place, and sometimes you don't know whether or not to pursue an issue that you are having.  I have to give you a different perspective than I am reading here.  I can tell you that there were so many times that "my inner voice" told me to get on the phone and shake it up until someone helped me figure out if there was something wrong with me-my back would hurt in a weird place, I had a little lump on my neck that wouldn't go away, my hip hurt, etc.  Fortunately, so far nothing has been anything to worry about, yet I've spent countless sleepless nights on it all.  Not all the time, thank goodness; most of the time I feel unbelievably great.  But I can tell you that our indefinite state of heightened awareness predisposes us to worrying without cause at times.  It's just something that I think we need to be cognizant of, and it makes it hard to know when to call the doctor.  That's why I think it is a good rule of thumb to give it a couple of weeks before you call (unless the problem is really obvious or you are having a lot of pain).  Does this make sense? 

I hope this little niggling pain goes away soon, and that you are feeling better in no time.

Hugs

Bobbie

TammyLou

Radiation sequelae.

TammyLou

I am personally very familiar with the aftermath of the LEVEL / DOSAGE of radiation that is delivered for locally advanced cancer.

The scar tissue gets tighter over time / hurts more.

tl

TammyLou

The hard bumps on your head are probably a side effect from steroids.  (go to the dermatologist).

The low WBC is "normal."   I'm barely scraping a 4.0 and I'm almost 6 years since my last "hard" chemo.

The craps is that the treatment has alot of LONG TERM side effects...that I take prescription medicine for!!!

IMO, you need to go see a good doctor (preferably one who has a lot of geriatric patients!!!) and try to treat some of your symptoms.

And, yes...you gotta' see the cancer doctor, too (blah, blah, blah)...personally, I rely on my old GP to keep this 46 year old body running.

She who takes Indocin for "arthritis" (translation:  damage from chemo/rads), and a host of other potions (Clobex = steroids for my head problems).

What doesn't kill you....may cause side effects!   (like out the WAZOOOO).

I'd be guessin' that you have some radiation damage to your rib cage (very common), and hurts like h#ll.

tl

raincitygirl

pupfoster - this may or may not be helpful.  BEFORE I had cancer, I had the same feeling for a few years, off and on.  Because I didn't have the cancer then, I was thinking it was more of a digestive connection.  Ultimately, it was.  It was heavy duty gas pockets collecting on my sides.  It wasn't the "I need to poop or pass gas" kind of thing, it was more than that and it was somewhat ever-present.  They kept thinking it was my gallbladder until it went to the left side. I had to add tons more fiber.

I don't mean to be at all simplistic or dismissive, as it sounds your doc may be.  I mean to offer hope that it is unrelated to your BC....fingers are crossed for you.

Anonymous

Sharon,

I agree with Kerry about fear of recurrence the further out you get.  W'e also, because of going thru this disease have become so attuned to our bodies.  Listen to your body and if  it's telling you things are not right, that go check it out.  I went thru this last summer with all the scans, because I felt something just wasn't right, and though there was no cancer recurrance they did find the explanation for a lot of my clavicle pain and actually named it  "bone marrow edema".  You need to be sure in your heart that something is not wrong.  Go have it checked.

Barb

pupfoster1

Once again thank you ladies.

I am definitely going to call tomorrow and see what I can get done.  This has been going on for more than 3-4 weeks now and it is getting worse.  I would LOVE for it to be gas pockets raincity---hah, isn't it funny how we now consider stuff like that a "good" thing? 

Guess I better brace myself for the inevitable tests.

I'll keep you all posted.

Love,

Sharon

KerryMac

Sharon, let us know what they say. ((((hugs)))), I know how stressful this all is.

pupfoster1

Well, my RN called me back today and said she wanted to speak w/the doc before scheduling any scans, etc (she returns tomorrow).  She sounded really hesitant about scans, saying I just had clear ones earlier this year, and my blood work was fine.  She asked me if I thought it was BC related, and I said "I really don't know, but considering my stage and the amount of positive nodes I am very concerned about it".  She said they may refer me to my GP or an gastro or internal doc.  Sheesh, maybe I am being paranoid, but like I told my husband, there is definitely SOMETHING going on, maybe not cancer, but something, and I am getting frustrated.  So, I'll let you all know what the doc says tomorrow...............

Sharon

raincitygirl

Hey there pupfoster - how did it go today?

TJW

Sharon,

Have you considered truncal lymphedema?  I see you had quite a few lymph nodes removed.  I had 14 and have truncal lymphedema (along with breast and arm lymphedema).  The truncal lymphedema hurts under my ribs and in my back when it flares up.  Early on, I had pain and had to have x-rays of my ribs-but nothing showed up/  Visit the Lymphedema forum - there are some very knowledgable people there.  This may be what is happening.  It's worth considering.

Good luck and hope it all works out for you,

Tina

Anonymous

Sharon,  let us know how it goes.  I think you need reassurance from your onc.  You know I still get paranoid with everything even after the recent scans I had over the summer that cleared me. Barb

pupfoster1

You all are so awesome!  It's so nice to have your support through this.

No word yet on the results.  The doc's office had said I would hear something today, but the tech said they would have it in a day or two.  So I guess I need to just try to be patient until then.  I'll let you all know as soon as I hear something.

LOVE YOU ALL,

Sharon

Lowrider54

Well, I just want to add my addage - if you feel like something is wrong - check it out.  When you find it is nothing, ahhhh, back to relaxing.  If it becomes something - it is likely caught at a point where something can be done.  Being tuned in to your body is the best thing.  And it is amazing how many 'normal' things happen that one is soooo convinced is the cancer back - they used to think I was nuts where I cheered about having a sinus infection or a UTI. 

But then again - I got blind-sided - 10 years, clear scans and BAM, bone mets with no symptoms at all.  Or, did I get so confident that all the 'nothings' I had checked out over the years that I wasn't as tuned in?  Never stop being vigilant - but don't let it consume you so that it is all you think about and living takes a second chair. 

Here's to it being nothing!

Hugs...LowRider

Anonymous

Always love your encouraging comments, Lowrider54.

Barb

DC197

Hi ladies,

I am posting here with great fear that I will be posting in the Stage IV room next week. Originally diagnosed as Stage I by the biopsy, it became Stage IIIc after surgery. Last Mon. I was sent for  pre-chemo tests (chest xray, CT, bone scan and echo) and on Wed. my onc called and said that two of the tests were conflicting .. the bone scan was clear, but the CT showed something on my spine. Now I'm scheduled for an MRI on Wed. I do not have a good feeling about this to say the least. How could I go from a Stage I dx to a possible Stage IV within a couple of months?!  I am terrified, but don't want to upset my family.

Diane

pupfoster1

Diane,

Oh my gosh, I am SO sorry you are being put on such a roller coaster ride!  It always irks me when I hear how someone is told a particular Stage just after biopsy.  It's impossible to do accurately until they get the damn tumor out (I was told mine was "about" 3cm---ended up being 6.5!) and they see about node involvement!  WHY DO THEY DO THAT?????

I know how you feel though, the waiting is awful, but hopefully the MRI will show nothing bad.  Sometimes the CT will pickup something that ends up being nothing.  I had a spot show on one of my ribs that ended up being from one of my drains after the mastectomy.  So I will pray for you that this goes no further.

Feel free to PM me anytime if I can help you in any way.

(((HUGS))) 

Sharon

DC197

Sharon - Thanks for your support ... it was because of you that I was able to share my story.  My surgery was a partial mastectomy with clear margins. It looks like I'll be getting the same treatment you went through last year - 4 dose dense A/C and 4 dose dense Taxol followed by radiation. The plan right now is to start Dec. 28, unless the plan changes after the MRI.

 I will pray that you will get good results soon.

Sending good thoughts, 

Diane

AdaTurner

I hope you get better soon. My dad is fighting cancer right now. Cancer runs in my family. I am advocating cancer-awareness in my social net accounts and I think people should do the same thing. By the way, Internet feminist community Feministing.com is motivating females who want to show support for cancer awareness, cancer charities or any significant charity to grow a "Decembrow".

pupfoster1

Diane,

Glad you felt like sharing.  I sometimes just read or take a break from time to time.  Not that I don't appreciate each and every one of you, but just for me, I can sometimes leave this site feeling worse than when I started.  You know when you hear some bad news, it all strikes so close to home.

Did they give you the low down on what to expect from your chemo?  I'd be happy to answer any and all questions you might have.  Feel free to contact me anytime.  One positive thing about when you are starting is that you will still have your hair for New Year's Eve!  I literally had my husband shave mine on Christmas night last year.  It was starting to come out in hunks (my scalp hurt a couple days before so I knew it was going to happen) and it had to be done.  I now LOVE my new hair!  After having it long for so long, I get tons of compliments (even from people who didn't know I had cancer) and feel more fashionable!

So, keep us posted on how you are doing, and try to stay busy till Wednesday!
Love,

Sharon

AnacortesGirl

Diane,

I'm hoping that your MRI confirms the bone scan.  False positive are tough.  I've gone through many with the PET scan I've had (I volunteered to be in a study).  I finally got to the point where I would be adamantly assume that the cancer hadn't spread.  That they would have to have undenial proof before I would accept that I had mets.  Believing that kept my sanity as I had many months of chemo and scans.  It kept me living my life while waiting.

Let us know what they find. 

DC197

Busy time of year ... I don't always get to the computer, so forgive me if I don't answer right away.

My onc called today to ask whether I want the results of the MRI before Christmas or after. Since that is all I'll be thinking about anyway, I will want to know sooner rather than later. She would rather give me the results (good or bad) in person instead of by phone. So I will be seeing her next Mon.to hear the news. Since nothing has gone in my favor so far, I am preparing myself to hear that I now have mets cancer. I am still praying, however, that the CT scan was wrong.

Thanks for your support 

Diane

3jaysmom

Diane: i'm usually elsewhere in these threads, but caught your header and poof! you are having the SAME exact feelings im having! the onco's nurse has also blown ME off, and given me the same reasoning.. my scans ok, bloodwork ok...etc. etc.. however, i'm going to have a simple Xray done on my ribs , thurs.. just starting there, with my GP; figure it'll show anything thats' there.. or not.. I DO have major digestive problems from chemo; and i also had a BMX, followed by some "cleanup " 6 mos. ago; so, any of that could cause it.. thank God, my GP is good about cking everythimng out. he also says the PET can give false results sometimes. so, he cks. it all out. i hope you can find a GP that'll take you seriously..

  i started with a guess , the 1st mamogram, they staged me at stage 4.. followed by a biopsy that they thought was really bad. from there, i had the radical masectomy. cancer and pre cancer, was PLASTERED on my chest wall!!but, it was stage iib.. with one node positive. I did A/C, followed by taxotere. just about ruined my digestive tract.. i do have pockes of gas, constasntly, so im hoping thats' what it is... but i, too, am going to follow my gut, and have it cked out. since ive had every scan known to man; it'll probably be more of the same. i hope its' just gas , for you, too.. let us know. im marking this site to ck in...do follow it all up: an onco should understand that you'd be concerned. i also got a therapist that i work with from the bccentre i go to.. it has helped alot with the PTSD he says everyone of us has, after tx.. so, don't beat yourself up!! i think i'll always be careful, and yes, worried about reoccurence, who here, wouldn't be? i really don't care if they think im a hyprochondriac.. they thought i was when i went in for another.. lump. and, after all the years of "watching" my dense breasts, i had cancer!!! we know our bodies best, girl...

    i will be praying for you to have good results. let us know...      3jaysmom