Scared and not sure where to go from here ...

Racquel

I don't even know where to start.  I'm scared and I'm tired of crying.  I updated my stats on here to unknown grade and stage because my onc isn't even sure.  There were quite a few discrepancies between mammogram, core biopsy and path reports.  He said it "could" be anywhere from 1 to 3 depending on what info he goes by.  That's reassuring!  My BX was June 4th of last year and I started chemo (taxotere/cytoxin) in July.  Was supposed to have 4 but skipped last one because I was so darned sick.  I just couldn't do it anymore and wanted it all behind me.  Wrong I know but honestly I've done so many things wrong since last summer that if I've written my own ticket then it's my own doing I'm sure.  I just didn't want to face it nor did I want to deal with it so for me it was easier to pretend it didn't happen.

This brings me to now.  I've been horribly sore in the far left side of left breast and arm pit area into my back for almost 2 months now (side of cancer).  Because I'd already run to my onc worried about hard bumps going down my left arm and he said they were fatty cysts (due to weight loss) I chose to let this go because I didn't want to look like a hypochondriac.  I've been so horribly exhausted in the past few weeks, nauseous and barely able to eat and go between totally constipated to living in the bathroom on rare occasions.  My whole damned body hurts and sometimes I feel much older than my 40 years.  I had a sore on my face that I picked at then I couldn't get it to stop bleeding.  After soaking a paper towel bleeding for 20 minutes I resorted to putting ice on it to try and freeze it.  I have bruises that can't be explained and when I can explain them they are pretty severe.  Sunday the guy I'm seeing and I were messing around "fighting" -- all in good fun.  But today I can still barely touch my wrists and I've got bruises on arms, rear-end and legs.   I feel like a hypochondriac with all that but I started to write things down and track them so I knew it wasn't all in my head.

I go in for my regular check-ups but at no time has onc tested anything.  He's done no bloodwork or anything.  He always just says "you're fine".  When I ask how I'd know if I'd be sick again he says to watch for symptoms.  HELLO!!!  The only symptom I had before was that my left breast had a pain in it.  I saw him last week finally for this and he wants to watch it for a month because he didn't "feel anything". 

I'm terrified.  I have a very strong family history of various cancers on both sides of the family.  I smoke ... I know, bad but even BC didn't get me to stop ...yet.  I stopped taking my Tamoxifen in December and recently started again.  Why?  I don't know.  I can't answer that.  I think maybe it's because I just wanted to forget.  Since last summer I lost both breasts, my long red hair that took forever to grow, my home, my fiance who dumped me this past February and I went straight into menopause.  I wanted to forget it had ever happened.  I avoided mirrors if I was naked and taking that pill each day was just another slap in the face.  I didn't stop drinking ... in fact I think I've drank more because of my mental state.  I didn't avoid sugar or eat clean.  I've done everything that I shouldn't have.

I think part of the other issue with my head is I am truely alone.  If I would be sick again I've really got nobody.  I have an ex-husband and friends but no longer do I have that person who's with me through it all and helping me each day.

Is it even possible to have mets in just over a year out?  I've broken so many other odds in life that this is really scaring me.  Hell I got preggers on Depo once ... that's a 1 in a zillion chance.  My onc seems to be very nonchalant about it all which is surprising because he's known to be very aggressive.  I know this isn't all in my head.  Is it even possible that with clear nodes that they can go positive?  Is it possible that rogue cells were in my body?  I wasn't worried a couple months ago but now I'm pretty scared.

Any advice is really appreciated.  I'm just so tired of crying.

shadow2356

I sent you a private message

soulswithin

Hi Shadow, it seems normal to worry alot for me too. I insisted for my doc to do an ultrasound on my other breast because of ongoing pain for over a year, because I thought 'why go thru all this for one breast if the other has it too, maybe even worse?'. I finally talked them into it for my own peace of mind so I can move on. Well I had to have two more biosies! My heart sank when I saw the two cysts. Not again! This was after 4 biopsies and 3 cancer surgeries on the other breast and I hadn't even started radiation or chemo.

I got a thrilled message yesterday that they were benign!!!!! Yes! B9! I can quit worrying for now! But one hour later another call from my Oncologist that my Ocy test didnt look good, so I need chemo also for the first cancer. Bad day after all, but at least I made sure the other breast was fine right now. I'm always an advocate for going with your instincts, make your decisions on what is best for you. Before it all drives you nuts!

You might get a second opinion from a well known doctor. We all deserve that after all we have been through! Good luck to you, hun. I hear ya.

changes

Racquel,

You sound so distressed - I wish I could say something that would reassure and comfort you.

Being single, I understand the fear of facing cancer alone. I do have to say that friends can really come through for you, even when you don't have a partner. Yes, it would have been easier to get through this with a supportive boyfriend/husband, but it is possible. The women on this site have been a tremendous source of support, even though I have never met any of them.

It sounds like you don't quite trust your oncologist. What about taking your pathology report, mammogram, etc to a new doctor, sharing with him or her your concerns, and getting a second opinion? Don't worry about being a hypochondriac - a good oncologist will understand why you are panicking over symptoms, and will be able to provide you with some reassurance about what symptoms are nothing and what symptoms warrant testing.

It's hard to change all your lifestyle habits overnight. However, it may help give you some sense of control to start trying to make small improvements. Even something as simple as eating one more vegetable than you otherwise would have is a step in the right direction. If you tell yourself you have to change EVERYTHING you are setting yourself up for failure.

Hang in there!

Karen

misssimpson

Racquel,

You are not alone.  I'm just starting down this road.  My cancer has changed now that more test have been done and the results have come in.  The size is now bigger.  My port goes in on Aug 30.  They have decided to do chemo first.  I find out what kind on Sept 7.  My doctor's appointment was today and I felt alone and decided to come here to see what others are talking about.  I feel better already.  We can't meet in person but we are here!!!  Friends do help.  It's not your fault this has happen to you.  Although it's a good idea to take better care of your self.  It's the only part we have some control over.

 Rest well tonight !

Penny

Barbie7

Racquel, I don't really have much to add from what the other ladies have said.  They have said it all so eloquently - I will just agree with them.  Anxiety and concern about your health is very normal, and you know your body more than anyone else!  If you are feeling that something isn't right, you need to listen to your body and keep seeking help to determine what is going on.  Maybe a second opinion will also bring a second personality to boot.  I sought a second personality instead of a second opinion, and my "new" onc is the best ever.  I'm glad that I didn't just stick with the first one when I didn't really feel like I was part of the decision process.    Also, as a singleton, I understand your concerns about not having a partner to go through this with, but friends and co-workers and even strangers step up and help beyond my wildest expectations. 

Most of all, remember that this forum is a lifesaver.  The women and men who post here are compassionate, knowledgable, funny and always here for you!

davisfamily70

Racquel,

Breathe-honey-Breathe-

Sounds like you need to make some changes-starting with your Doctor, with all due respect to these often brilliant people, they are not God. We are still their customers and sometimes you need to shop around.

I have also inexplicibly stopped taking my Tamoxofin, I never figured out why until I read your eloquent post. You have great insight into yourself.

 and guess what when I started to take it again I had horrible constipation and wrist pain-check out the side effects you will see that you are not alone. It is a powerful drug. 

Now is the time to find a way to treat yourself better, it might involve cutting back on smoking and drinking-it may be just going to the hairdresser for a pedicure and a new hair cut-it might mean taking a drive to no place in particular.

Do something unexpected and know that there are many people that understand you, and support you and are praying for you.

Racquel

Thank you to all of you.  You have no idea how much it means.  I'm sitting here at my desk in tears.  I have an appointment tomorrow with a different onc.  She's the doc I saw initially but switched to a different network because that hospital didn't have a PS on staff to do the recon.  She's at our rinkydink little hospital in my tiny town BUT she's only there part-time as she's primarily with University Hospital here in Madison.  My insurance said I can get a referral to be treated at University if necessary so that charges will be covered as it's out of network.  Call it sixth sense but I can just "feel" that something isn't right.  My breasts have gotten so painful.  The current onc told me once that "cancer doesn't hurt".  I told him that I was there to tell him it does because that's the only reason I found it.  I was in pain.  Looking back at it I was told they'd take all breast tissue but then was told by PS when recon started that the GS had left quite a bit to allow for expanders.  They said this was fine because the cancer was far enough away from my chest wall that they weren't "concerned".  HUH???  WTH???

As a side note, yesterday was a sad day.  Cancer seems to be rampant in our tiny little town of 1200 with many being rural.  I was told yesterday that a friends dad was just diagnosed and the wife/mother of two friends passed yesterday.    My heart sunk when I heard that.  We had the same doc and our initial surgeries and chemo were around the same timeframe last summer.  From what I was told she'd gotten a clear bill last fall after bilateral and all that crap.  It popped up in her neck beginning of summer and she's gone now.  Another good friend who'd barely had a sniffle had cervical cancer within 2 years of moving into her home.  She lived 3 houses down from me.  I moved in Dec. 2007.  I'd had my yearly gyn (breast exam too) visit Oct. 2008 with clean bill of health.  I was diagnosed in May 2009.  You can literally walk from one side of our town to the other in about 15 minutes.  You blink twice and you miss us.  I can name off the top of my head a dozen people who are either sick currently, NED or dead.  And these are just my acquaintances and/or friends.  And these are only people I know personally.  Another very good friend was at doc just 2 weeks ago.  She called me scared ... they've told her it's very suspicious but want to watch it for a couple months.  (  I told her she needs a second opinion in the city.  Someone joked once ... right after I was diagnosed ... that maybe it's in the water.  Back then I laughed ... had to to keep from crying.  Now it's not so funny.  There's been 5 of us diagnosed with BC since late last spring.

Racquel

Went to new onc (a woman) this morning and glad I did!  She was surprised former onc didn't do anything for follow up except a pat on the back and my little bottle of tamoxifen.  Had chest x-ray ... came back without any sign of activity!  Yeah!!!  Then 5 vials of blood drawn.  Hopefully I'll have answers this afternoon.  Am being scheduled for MRI.

davisfamily70

Racquel,

I am hopeful that everything was okay. It is good to hear that you are getting some onc care that you are comfortable with. Let us know how you did-and we will go from there.

Racquel

Onc called.  I posted this in other thread but thought I'd update here also.  I thought it was odd that the MRI tech said she was going to "expedite" my results.  Onc said there's an "issue" which is more posterior.  She said that because I didn't get an MRI last year and the US didn't go that far back they didn't catch it.  WTH???  She said she's scheduling a US asap.  How odd that this issue is in the same damned place that I tried to tell former onc that I hurt so bad.  He's always maintained that cancer doesn't hurt.  BS!!!  I think she said something about LN but I was pretty much in a daze the whole time she was talking.  I was lymph negative last June.  She told me in appt 2 weeks ago that has no bearing on it.

Lowrider54

Some cancers hurt.  Glad you switched and getting to be somewhat comforted and taking action.  Take control and move forward...treatment is out there and you are never alone as long as this board exists.  I live alone with my fur-child and at stage iv, it has been rough but I am getting through it.  It is a year since the mets dx and I am not doing too bad!  Hang in there - the 'issue' that was initially found in my beginning of testing turned out to be nothing - lets hope that is the case for you.  For me, it led to more testing and the ultimate discovery of distant mets in my spine.  Sounds to me like you may have a 'local' recurrance, if anything at all.  Prayer it is all nothing!  Hugs...LowRider

Racquel

I've called my granny, my mother, both aunts, exhusband and 2 best friends.  I keep thinking that if I tell them then doc will come back after it's all said and done and I can tell everyone it was nothing and I blew the whole thing out of proporation.  Does that make sense?  In my head it does.  I keep hoping that by telling them then it won't be anything.  It'll just be me and my wild imagination.  Inside me though I feel the same way as I did last year.  I've been sitting at my desk since 1:00 going between laughing and crying but I think I'm back to just numb all over.  Bring on the rollercoaster again.

squidwitch42

Racquel,

I just read through your posts.  Wishing the best for you.  Have you had the US yet?  And I am a creature of habit and ritual...if I talk about the worst, it won't happen. Not everyone enjoys this, but it works for me

traci

Racquel

Traci --

That's exactly the way I think.  If I talk about worst case scenario it'll all be ok.  LOL  Only wish that were the way it really way.  Doc was calling to schedule US and said she'd call when it was done.  I'll be calling medical imaging in the morning to check on it.  Told my boss I needed to take a break.  He said "you took one just over an hour ago".  I said "I realize that but I NEED a break ... my MR" and that's all I got out before he said "yeah, yeah, i know, whatever, you have work to do get back to your desk".  God I need a new job.  He bitches at me every time I need to go to the doc.  I reminded him one day not long ago that my doc appts might just keep me alive.  He said "Racquel, we all have issues in life to deal with".  Uh yeah but I think this is a just a bit more important than deciding which golf course to hit.   He'd like my appts during off hours.  I'd like my boobs back.  LOL  Some things just aren't possible.

chicago-37

Just FYI... my cancer was only painful, no lump.  IDC Stage 1.  If you have pain, have it checked...I had to fight to get a mammogram because everybody said I was too young.