Need support

michka · 11-22-2010, 11:07 AM

Friends, I am calling for support. I feel very down and I am afraid.

This is the picture of the last months:
My CA 15 3 markers kept going up notch by notch from 20 to 35 within a 4 month period which is not much but still noticable.I have had a high level of C-reactive protein for months with no identified inflammation and my vitamin D is very low.
In September I had a CT scan and all was normal. And a right breast mammo and MRI. Normal also.

I complained to my onc I had a little pain on the side of my chest like if I had a bruise on my rib. But there is no bruise. So he decided to send me today do a PET Scan. He said "that way you will stop worrying".

Well the doctor called to say 2 small spots lit up "behind the rib" on the right side (my BC was on the left side). He said he did not believe it was important but still called me in for a "CT Angiography" on Wednesday!
I am scared. Does this mean spots on the lungs or something else? What does behind the rib mean?
I thought "angiography" was to look at the blood vessels. What is he looking for? Why isn't normal CT enough?
What are your thoughts?
Sorry for not being stronger. Michka

caya · 11-22-2010, 11:56 AM

Michka,

I am sorry that you are going through this. I can't really help you with any kind of explanation, but I do know that CT angiography can show different things than a regular CT can. Try not to worry too much, I know that's easy to say, mais essayez.

Hopefully all will be resolved on Wednesday, with nothing important showing up.

all the best
caya

Lien · 11-22-2010, 12:01 PM

Hi Michka,

I am so sorry you are dealing with this scare. I don't know what your doctor means, but I know that Pet scans are prone to sending out false positives. I think they will give you some contrast agent and then make a CT scan of your bloodvessels.

The procedure shouldn't be too hard. The fear is the worst part, though, isn't it? And if we can't be scared silly when we think we may have metastatic cancer, I don't know what would give us the right. Nobody expects you to be strong! We expect you to be scared and come to us for support. And that;s exactly what you are getting: hugs, cuddles and lots of love. We are here with you, and we won't exhale until we get news from you.

Hang in there: your spots are innocent until proven guilty by a biopsy. I know it's hard, but that's how it is. There are lots of other reasons for markers to creep up and pet scans to light up.

Hugs

Jacqueline

MJo · 11-22-2010, 12:22 PM

I think your spots have a good chance of being "innocent", as Lien puts it. You were very aggressive with your tumor, and hopefully you knocked the cancer out! I am 5 years out and there is an area of my ribs that is painful to this day. I also have areas that light up on my scans. THey are innocent. Scans are so scary, though. Looking forward to hearing good results.

BonnieR · 11-22-2010, 12:43 PM

Don't ever apologize for not being "stronger"! We are all in the same boat here.
I wont go into my whole big story again but just let me say that recently I had scans that lit up, everyone assumed lung cancer, was misdiagnosed with lung cancer and operated on for it! I guess my point is, even though things may appear to be one thing, they turn out to be another. So don't let yourself or anyone else jump to conclusions. It is too soon to know. Just keep the faith.

StephN · 11-22-2010, 12:57 PM

Hi -
What is normal range for 15-3 marker? I don't get that one.

I am a little puzzled as are you about the CT angiography. Are you sure this is the correct term for the procedure you are to have?

Everything I know about that type of CT (and I have had them because of my clotting problems) is for coronary disease or problems. Also, your heart is on the left, and the spots are on the right.

I guess your doctor wants to rule out certain vascular problems before going another kind of route. Were enlarged lymph nodes ruled out?

Well, you have only a couple of days to think about this and it will all be over. A fast fading memory.

sarah · 11-22-2010, 01:02 PM

Hello Mischka,
I sent you a personal message. I live in France and besides being a grateful member of this wonderful site, I am a founding member of an English speaking cancer support group in Mougins in the south of France. I live in the Var.
I can't answer your question but please read my personal email and be in touch if you would like to be.
Health and happiness
Sarah

schoolteacher · 11-22-2010, 01:50 PM

Michka,

You will be in my prayers.

Amelia

tricia keegan · 11-22-2010, 04:52 PM

Hi Michka,

I dont have advice sadly but sending lots of (((hugs))) and good wishes for great results.

Tricia xx

whatz · 11-22-2010, 05:52 PM

Michka,
Just echoing Bonnie and Lien said...please don't apologize for "not being stronger". Please girl, we're all there with you. All of us having had "scanxiety". I like what Lien said..."spots are innocent until proven guilty by a biopsy". But...those spots sure throws us in emotional tail-spins until we have that word. Hang in there. We're right here waiting with you to gladly exhale when you get the good news.

Laurel · 11-22-2010, 06:24 PM

Michka,

Scans = scary! No need to apologize. This nutty disease keeps us all off footed most of the time. Let us know what your scan shows. I am betting it will be ok, but oh the turmoil of worry and fear! Prayers for peace coming from across the pond.

sassy · 11-22-2010, 06:32 PM

Michka,

I had a sore area on my ribs also, with no bruising. A bone scan lit up that area and another on the other side. They turned out to be old fractures, that I had probably sustained the previous winter during a slip and fall. It didn't hurt at the time of the fall (probably because my knee hurt worse!) but soreness set in.

Hopefully all will be well and I will keep you in my prayers.

michka · 11-23-2010, 02:34 AM

Thank you for your kind words. They made me feel better. I did not sleep much but I am ready for tomorrow. I know that it could be a false positive and I sure remember your story Bonnie! The good part is that in France the doctor gives you the results an hour later. Love to all. Michka

KDR · 11-23-2010, 04:59 AM

Try not to worry! What an awful game we're in...but we are in it together! I made a deal with myself: it isn't something till it is. I will be sending positive thoughts your way.

The 15-3 test is an breast antigen test. I think the normal range is 0-36. I was diagnosed at Stage IV and my number was 35, still considered normal. How ironic is that? My CEA, however, was 599.1, when the normal range is 0-5.0.

Pam P · 11-23-2010, 05:13 AM

Michka - I also want to chime in with all my support as you wait for this new scan and the results. As others said so well this is scary stuff and we are scared each time we face one of these unknowns - the fear seeps right through all of our strength. We can be both scared and strong at the same time. I think it's good you are being aggressive in the testing and getting to the bottom of the questions. I also think the spots will turn out to be 'innocent' - love that term. Try, try, try, to find some calm place to get through this. Pam

Joan M · 11-23-2010, 07:09 AM

Michka,

Hopefully, nothing will come of this and it's just a false alarm.

It's not clear to me either why the doctor is ordering a CT angiography. Have you seen a copy of the report? Perhaps there would be an explanation as to why your doctor wants to do the procedure. The report would give the radiologist's impression and their recommendation for follow up.

I had the procedure in May 2009 because I was coughing up blood due to a fungus that developed in the cavity recreated by a lung RFA in August 2008 to ablate a 1 cm recurrence of a met (a year before I had a wedge resection when the cancer first spread). The development of the fungal ball was a rare occurrence (the fungus was a common garden variety type, which I must have inhaled while gardening after the procedure). The procedure inserted little coils to shore up bulging vessels. Unfortunately, in my case, it didn't work, and I ended up with a thoracotomy to cut out the fungal ball. But there was no cancer, so I guess the RFA worked, and I was happy. The procedure I had was painless and there was zero discomfort afterward. I was half asleep, but awake enough to hold my breath when asked a few times.

Joan

PinkGirl · 11-23-2010, 07:29 AM

Hi Michka
Sorry you have to go through this ... it is the pits having these 'scares'.
Your numbers sound kind of normal but I know you're concerned that they've been rising ... remember that there are lots of things that can make our blood work results go out of whack ... and they have to be super cautious with 'us' .... my feet light up like Christmas trees on scans ... maybe you've got some old/former problem with a rib ... keep the faith woman ... we're all right here with you.

Becky · 11-23-2010, 08:46 AM

Dear Michka

I have no words of wisdom but wanted you to know I am thinking about you. Never, ever feel bad about needing support. That is why we are all here for each other. As a side, my ribs always bother me alot too but nothing ever came of it. Probably weakened due to all the treatment.

Stay strong - its hard as we have all been there with scares (me too) and many of us will have our scares in the future too.

My arms and thoughts are tight around you.

BonnieR · 11-23-2010, 11:04 AM

I like what KDR said "it isn't something till it IS". I might add that "even THEN it might not be"!
So keep the faith.

caya · 11-24-2010, 01:08 PM

Hey Michka,

any news?

all the best
caya