Odd pain going on 4 weeks...

tougherthanithought

So sorry you are still waiting...I don't know if a ruptured disc would show up or not.  Sending positive thoughts to you.

chicago-37

BAD NEWS!

"Moderately intense lesion is seen in cervical spine at about C6/7 on the left side.  This represents interval change since the previous study ans is suspicious for metastatic disease.  Further evaluation CT scan CT or MR study is strongly recommended."

The Blah News:

"Subtle uptake is seen at posterior left 10th rib and is grossly unchanged from prior study.  Previous trauma is considered a possible explanation.  Previously seen focus of increased radiopharmaceutical uptake in the left posterior eighth rib not visualized."

 Depressed, freaking out..talked to Onco's nurse, and Onco.  They are putting in an order for an MRI.  All the Onco said is "this could be," ... I am sure it is.

A brief history:

36 - Pain in both breasts, shooting at times ... very strange... tried to convince several doctors to order mammogram...none would said I'm too young.

close to 37 - Finally convince doctor to schedule mammogram -  bad news starts....strange lesion..might be a spiral something or other.... Breast surgeon and PCP keep reassuring me this doesn't look like cancer..but imaging center says it does (The Breast Surgeon is a great man and is well known..he just felt there was nothing ..I never had a lump).  Biopsy - IDC in right breast...left some cysts but nothing.

Surgery (decided on bilateral mastectomy with level 1 node extraction)- Recover (5th year wedding anniversary in hospital bed with husband sleeping in uncomfortable chair) - More recovery.

  Radiation was ruled out because mastectomy and nodes clear. 

 Chemo was ruled out after a few things :

1) No lymphatic/vascular invasion upon removal of the tumor.

2) Just over 1 cm ~ original mri looked huge...like 3-4 cm which lead to the mastectomy decision.

3) OncoType DX score was low.  Chemo hold little value and risks outweigh the rewards.

4) Second opinion.  Went to a top Onco who has been at it for over 20 years..maybe 30... he siad with the reports he wouldn't even consider chemo.

Now this.... scared and worried.  I'm already worried about further treatment...surgery was so difficult before...

now what?

chemo?

radiation to my neck?

more drugs?

I just know that the MRI probably won't happen before the weekend...now my weekend is ruined.

I just know that the MRI is going to show something bad ... and a lot more than my weekend will be ruined. 

LRM216

Can you call the dr and find out what's going on????  This waiting is disgusting..... but I'm still here with you Chicago, we all are.

Stay strong,

Linda

LRM216

Now that I re-read your post above and understand it, I deleted what I had written, thinking you did not hear anything yet.

I hate it that you still do not definitively know something and will have to wait for yet another test and the results of that.  I wish I could speed it all up for you, the waiting and the anxiety is a nightmare.  Any ativan or xanax to help get you through the next few days????  I'm still here with you, we all are, and will keep checking on you. Stay strong - and Breathe......

Linda

chicago-37

MRI scheduled for Saturday.

chicago-37

Is it common or does it happen to have a single lesion on the c6/c7 area?  I was hoping for something like a herniated disc....but this...now I'm sure it's something not right...the pain is still there today and it isn't going away.  It doesn't keep me up at night or cause pain unless I am moving.  If I keep my head still, there isn't pain, just a feeling of soreness in my neck muscles.... I tried advil it seemed to make it feel better..but never went away... i tried tiger balm and other topical lotions for join pain.... nothing helped.... I fear it is this disease progressing.

LRM216

Yeah, it could be - but until we know for sure, I prefer to think it could also be a herniated disc, or cervical spondylosis (have you googled that one yet - sounds just like what you have been having with all the same side effects), or bone spurs, and the list goes on.  So glad to hear they are doing your MRI on Saturday.  This will be over shortly, you will know soon, and then we go in whatever direction we have to. 

Linda

chicago-37

Linda,

  I would love to think that... I just get stop thinking the worst... I'm trying to convince myself it could be something else....the injection was Tc-99m MDP which shows uptake if people are using iodine for thyriod issues..I've been taking 32mg of iodine a day for awhile....I would like to think it's just a false-positive...which also happens in the neck area with Tc-99m MDP....but I think this pain has to be something not good.... it just is unexplainable..even though it seems to be getting better..it won't go away....

depressed. 

chicago-37

Linda,

 I appreciate the comment about Spondylosis....but that would be too odd.  The most likely issue that is there because of my history is that my 'C' has returned..this time might be the worst.

perky

A slipping disk shows on X-Ray as an adnormality or shadow. An MRI can show if the cartiledge is doing something funny, it isn't dense enough to be picked up on X-Ray and the process of being sent for MRI is so scary.

I get the sense that your gut is telling you something and I am glad you are chasing it down for piece of mind if not everything else.  Just in case, I did want to offer another explanation.

Fingers are crossed!

chicago-37

Perky,

  Did not have an x-ray of my spine..only the bone scan.  The x-rays I had recently were for my arm (which was a pain point), those were clear.  Right now it's a 'moderate intense lesion' on my cervical spine that's worrying me from the bone scan.

LRM216

Chicago - just don't let the word "lesion" be your guide.  They referred to what is seen with the spondylosis as a lesion as well, and that's not cancer.  I wish I had a crystal ball to stop this horror you are going through, as we all know there is nothing worse than fear and projection of that fear.  Hang in there until Saturday and I'm not even going to say try not to think about it, as I know if anyone said that to me, I'd want to strangle them!  We are here for you - I'll sit up with you all night if you need me to.  We have to wait this time out, that's all we can do right now.  I'm just so grateful you're going Saturday, and not sometime next week!

Linda

chicago-37

Linda,

  My mamogram said the same thing "suspicious" that time it was cancer..this time I know this will be too.

chicago-37

What is the likelihood of a negative MRI after positive bone scan?  From my googling it looks like bone scans have a very unlikely false-positive rate. 

sueUK

Hi Chicago, Im sorry...I just replied to your post to my thread before reading your updated news. Jeez, its all a load of gobbledygook really isnt it - possible this, suspicious that - the term lesion which as Linda said is not necessarily sinister. The term they have used with me so far is 'highly suggestable'  - of course we expect the worst, what else can we think with these daft and meaningless messages.  Im glad your MRI is only a couple of days away...still too long, I know - you feel depressed and utterly cr*ppy and Im sure there is nothing anyone can say to take that away - we need answers and nothing else will do. I hope you can just hang on in there with some small semblance of sanity (whats that you ask?!), and I truly hope that your fears are unfounded. But whatever happens, if more treatment it is, then WE will cope my lovely...we will!

Big hugs to you, Sue x 

sueUK

Hi Chicago, Im sorry...I just replied to your post to my thread before reading your updated news. Jeez, its all a load of gobbledygook really isnt it - possible this, suspicious that - the term lesion which as Linda said is not necessarily sinister. The term they have used with me so far is 'highly suggestable'  - of course we expect the worst, what else can we think with these daft and meaningless messages.  Im glad your MRI is only a couple of days away...still too long, I know - you feel depressed and utterly cr*ppy and Im sure there is nothing anyone can say to take that away - we need answers and nothing else will do. I hope you can just hang on in there with some small semblance of sanity (whats that you ask?!), and I truly hope that your fears are unfounded. But whatever happens, if more treatment it is, then WE will cope my lovely...we will!

Big hugs to you, Sue x 

chicago-37

Sue,

  Thank you for the support... my head is killing me... the stress is getting to be too much.

sunnyhou

Hi there..

I just saw your post on the actve thread. It caught my eye because I have a herniated disc in the same place. C6-7. I have never had  a bone scan but wonder if it would show up there. I am by no means an expert but you have a low likelihood of mets. Esp with your diagnosis. I know there r suprises out there but please try to calm down. I think it could be rare to have mets only in your neck. I have pain constantly in my neck. My neck never stops hurting and I am your age. I am hoping for news that the MRI says this is something else. I will pray specifically for you tonight. I hope you get some good news that this is not a mets lesion. God Bless!!!!

dlb823

chicago, I've re-read your OP several times today, and I keep coming back to what you did on 8/14... intense crunch workout program... first time in 1.5 years... and all I can think is, that's exactly when your neck pain originated.  I have no idea what a "moderately intense lesion" means, but it sounds to me like you injured your neck with those intense crunches, and that your increasing pain with movement is related to that.  I'm glad you're getting it checked out, but in reading through all of your comments, including your later posts (pain when moving... soreness in neck muscles), it sounds to me like you have an undx'd injury from the crunches.  Hugs & prayers that this is all just a bad scare  ~  Deanna

chicago-37

Deanna,

   It is hard to stay positive because it's hard to find any reason for a simple injury to not get better for almost 7 weeks and also to find any injury which would show up as a spot on a bone scan.  We will see what the MRI shows tomorrow.  I just tried to see if I could move it up to today, but no luck.

chicago-37

When a pain starts,and doesn't go away....after awhile you know something's wrong and then you submit to the testing.  The technician running the bone scan said "{pause} good luck with everything,"  my husband calling with the report he picked up "{pause} it's not good..." my oncologist  calling after my husband called about what to do next "I wish I had good news, but I need more pictures to see what's going on..." and the wording from the bone scan results all add up.  It is no good.  MRI tomorrow....I think it's time to make plans to travel the world before this thing does me in.  Here are my bone scan pictures (not high quality, but you can see the brightness on the neck).

Front: 

 

Back: 

 

 Tomorrow I already know the MRI will show bad things, but I won't know about it until Mon/Tue.  Don't know when the Onco will see me, but this is getting to be too much.  I don't know how I can keep strong knowing that life is going to turn into work/hospital/work/hospital....  Even if I get through this, only 1.5 years after Stage 1...I am going to get confirmation that I am stage IV ...  and I want to live...

jacee

Which is the most definitive scan in a case like this...the bone scan, or the MRI? Do you have to have a bone scan first? Just wondering if an MRI can show exactly what it is? I have the same pain in the same place, Started about the same time I started femara, so I just attributed it to that. I've had tons of CT scans, and like you, didn't want any more radiation. Just curious if an MRI would be sufficient. 

My heart is with you, I can sense your fear and will be praying specifically for God to calm your spirit. Bless you, Joni

chicago-37

Joni,

  I wish I had that answer.  I think the bone scan is sensitive and has a low false-positive rate.  I think they want to do the MRI just to see more details regarding the tissue.  Bone scan can light up if there is inflammation in the area.... I think the pain I'm having is not bone pain, but muscle pain caused by the muscle trying to protect the spine due to the changes happening there....  

1Athena1

Chicago - what a bloody miserable situation for you and a prolonged wait. I won't ask you to "stay positive" for the same reason that I don't believe in tooth fairies or talking snakes. Just know that many here will surely have you in their thoughts this weekend.

chicago-37

Thank you everybody for your prayers and positive energy.

sueUK

Hi Chicago, just checking in to top up some positive vibes for you. As you know, I am in that scary place too...waiting and waiting, and I know that the fear is unbearable. At my worst, I feel the panic right down to my finger tips...does that make sense, its like every atom of my body is screaming - take this away NOW! However, I have had a couple of days where thankfully I have got myself under control...the odd vallium, pain relief - as much as is allowed, and lots of deep breathing. Like you, I simply detest the out of control feelings of fear and panic and I know its no help really, but just so you know that I understand exactly how you are feeling right now.

Would it be at all possible for you to ask to wait and hear the MRI results straight away. I was told that they have all the images within 15 minutes.....15 minutes and yet they want you to wait a couple more ENDLESS days to be told the findings. Can you perhaps beg for mercy and ask that someone come along and speak to you - I know everyone is anxious when they have these tests, but if you get across just how 'out of your mind' you are feeling, just maybe they will cooperate and help you...it must be worth a try.

Like everyone else, I pray that your results are clear and simply a result of all your crunches and things...my, I wish I had such energy, Im such a lazy moo!

Hugs & sparkles, Sue x

CoolBreeze

Hi Chicago,

I just got home from my bone scan.  Pain in my lower left back/side for about six weeks now.  

It's hard not to read into what the tech says, isn't it?  But, they do this all day long and probably don't think about it.

Mine took the first pictures, came out and said, "have you ever had broken bones?"  I said no, and she went back, took the next  set, and came back out, 'Have you ever had arthritis?"  I said, no, she took the third set and came back out.  "Have you ever had osteoporosis?"  No!  Took another, came back out and asked me my height and weight.  By that time, I figured she's looking at something and coming to check.

But, probably, she is saving time and instead of asking all the questions up front and then starting the test, she does it in between because it's faster.

When I left I asked "Can I see my bones?"  I've had techs let me see before.  But, she went "Uh, um, {pause} no.  Uh, your doctor may or may not have them.

Well, you can interpret that her not wanting me to see anything or her just  being a rule follower (if that's the rule)

Lesion just means they say somethiing.  But, maybe you do have metastatic cancer.  Maybe I do.  It doesn't mean you are about to enjoy your last vacation or your last weekend.  I have a friend who was diagnosed ten years ago with breast cancer, which spread to her brain.  She is NED.  Check the Stage IV section.  Lots of women there have lived for years with metastatic cancer.

Take it one step at a time.  I plan to do the same.  Just like we did with our cancer diagnosis. 

Good luck to both of us!  I'll be watching your thread!

LRM216

Positive thoughts for tomorrow, Chicago.  I will be sending them all weekend.

Same good thoughts and hopes are going out to you Cool Breeze and to you too, Sue.

If wishes were money, the three of you would be millionaires right now.

Linda

jacee

Thinking of you today and hoping you get some answers, somehow today. After reading Sue's post above, I now remember, with both MRI's I've had where they suspected something, they had me wait 15 minutes or so to let the radiologist look and give me a report. Even my last breast MRI before my recon, I had some concerns about an internal mammary node and the radiologist actually called me in and let me see the exact pics from that area. He said, everything looks great....of course there are over 500 pics, but just a quick scan of them, he gave me the all clear. I would think, since they are looking at a specific area in question, they could give you some idea immediately after. The technicians might say ,"no", but ask if you can speak to the radiologist.

Keep living and know we are here,

Joni

chicago-37

I hope to get answers, though I know I most likely won't.  My Onco called the imaging dept and they told her it would be done by Monday.  What frustrates me is that I called the imaging dept and asked if they could read it today, they said if the doctor puts a stat read it should be read same day (even saturday) ... I trust my Onco, so I assume she either doesn't want to rush it or the person from the imaging dept gave me bad information.