Nervous nelly

DianneS · 08-18-2009, 04:12 PM

Hi all,

I will be having my 3 month checkup with my new (yay!) oncologist Aug 26.

Question: how often does one get tumour marker tests? My previous onc had not ordered one so this will be the first since I was diagnosed in Aug. 08.

MRI's and CT scans are typically not done here in B.C. (same for Toronto, Caya?) on a routine basis as they are seen to cause more problems...being exposed to radiation or whatever, but I'd like to know what tests I should be having every 3 months....I want to keep on top of this thing but I don't want to be overexposed to MRI's, etc.

Having a rough day...some days it just seems an impossible thing to wrap my head around. One thing about Herceptin, it makes my eyes teary so no one can tell if I'm crying or having a drug side effect. I want to feel happy again and not have this monster hanging over my head. I truly have not had a moment of peace, unless asleep, since I was told about this disease. Maybe it came too fast on the heels of having aneurysm surgery, I don't know, but my coping skills are pretty minimal. I am living in a remote area and just feel like...what's the use. I can't even plan a year from now, for anything.

Well thanks for letting me rant and rage.

Diannes

DonnaD · 08-18-2009, 08:45 PM

You are going to get tired of me. Responding again to you dear sister. First and foremost you are not alone and what you are feeling we have all felt. It gets easier with time. You have just recently finished treatment and are one year out. We all still have bad days. It is hard being in a remote area, but we are here. "Talk" to us any time.

I did not have watery eyes. My issue was a runny nose all the time.

I did not start out having tumor markers and routine CT's. I developed an issue with fractured ribs and then the tests started. You are right about tests showing other things and adding radiation. After a bone scan lit up this June (I was having rib pain again) more tests were suggested. I have decided to wait on any further tests, and more radiation and let the ribs heal.

I would suggest sharing these feelings you are having with your new onc on the 26th. I wish I could have one day without thinking about cancer, but that has not happened. But I do look forward to the future. Thinking of the positives and blessings helps me.

Remember you are not alone and we are here for you.

A big cyber hug is on its way. Did you feel it?

Paty · 08-18-2009, 09:17 PM

Dear Dianne,

I echo Donna's words that we are always here to listen and also that we all have felt many times the way you are feeling now. Doctors and countries may have different practices. I will go next week for my three-month check up, I do not get tumor markers, I get mammogram once a year, bone scan once a year, mamma ultrasound every 3/mos., pelvic and abdominal ultrasound every 3/mos., torax x-ray every 3/mos., just that if there are no other symptoms. With Herceptin I got a lot of joint pain and also runny nose. Hope you feel better soon, I am sure you will.

Paty

08-18-2009, 11:18 PM

my diagnosis was somewhat similar to yours (although I had a satellite tumor in same breast) and I had tumor markers done constantly during treatment; now that I am in follow up (about a year and a half out on herceptin), I get them every 3 months at follow up exams (which continue until the 2 year post-herceptin mark, then go to 6 month exams for a while, then to every year).
I hope!
I have arrived at the point though where there are times I don't think about it as much as I did.

DianneS · 08-18-2009, 11:30 PM

Hi Donna, Paty, and rl2,

Seems like there is no standard for followup. I should think, tho, that tumor markers at the very least would be done the first several years at the 3-6 month checkup. I am just tired out from worry. My dog is sick, my husband is having a prostate biopsy (his brother had prostate cancer at the age my hubby is now) and it seems everything is going more sideways than ever. And now I have to worry about a stupid kidney stone in my right kidney as well. How much is a person supposed to take? I used to believe that God doesn't give a person more than they can bear. Well, guess what? That isn't true.

Thank you for the kind words. And support. There are people on this forum who need it more than I do.

Diannes

Lien · 08-19-2009, 12:14 AM

Hi Dianne,

I think that what you are feeling is quite normal. Your whole world was shaken up twice. It takes time to start trusting your body again. Don't worry, it'll get better. I'm 5,5 years out from diagnosis and most of the fear has gone. It just rears its ugly head when I have a checkup or when I have any kind of unexplained symptom.

About tests: Tumor markers are notoriously unreliable. Here in the Netherlands nobody gets them tested on a regular basis. Mine were done before surgery, when I still had the tumor in my body, and they were normal! I know that they are sometimes tested when someone is having chemo or hormonal therapy, to see if the numbers go down with therapy. We do mammo's once a year, and other scans are only done when someone has symptoms.

I believe that in the US sometimes doctors perform tests because they want to cover their asses, or because they can charge for them. Perhaps that would explain why some people are tested for things others are not.

Ofcourse there are situations where testing is warranted: High risk situations, someone who had high markers at diagnosis, symptoms that persist for more than two weeks, etc.

I must admit that it was a relief when I needed a scan for abdominal problems and the radiologist took the time to have a look around with an ultrasound to see if he could find anything else that might have popped up. I was clear and it felt good to "know". Although, of course, there are no guarantees.

We have to learn to live with the fear of our cancer coming back or a new cancer developing. You will manage to do that. It just takes some time.

In the mean time, we are here to help you get through the tests, the fears, the worries and the doubts.

Hugs

Jacqueline

Lien · 08-19-2009, 12:16 AM

Oh, and Dianne, there are never people who need support more, they need it too. You need support when you need support. Even if it is because one is worried about an itchy toe!

Love

Jacqueline

Mary Jo · 08-19-2009, 07:02 PM

Hi Diane......Awww, I hear your pain and I hear your anger. It is all understandable and it is so hard to fathom why these things have to happen. Trying to figure it out gets us no where so better to accept it - acknowledge the pain you feel and let it out - and then try to rest in knowing God will see you through. I think we all would like to know (from time to time) why things have to happen the way they do. Why bad things have to happen to good people. What in the world the purpose could be AND why some of us have to be given so much more than someone else. None of those questions I can answer though. The only thing I do know, and believe, is that God sees the whole picture - the finished portrait, as it were. We only see what's in front of us and it makes no sense.

Asking God to give you peace and to help you as you struggle through this time. I'm sorry you are having to deal with this all Diane......also praying your husband's biopsy result is benign.

Love and gentle hugs,

Mary Jo

harrie · 08-19-2009, 11:56 PM

Hi Dianne! I'm Maryanne. I responded to your hair growth thread.
I had the same tx as what you are having. Just wanted to let you know that you are not alone. I know it gets tough sometimes, but if it can ease your mind somewhat to know that I am about a year past you and life is pretty much good again and I'd say back to normal.
Take care.

suzan w · 08-20-2009, 09:14 AM

I also think aabout cancer every day...then try to immediately change the thoughts into positive "I love life, glad my treatments are working etc"...my onc. does tumor markers every time I see her...every 3 months for 2 years, year 3;every 6 months, and now yearly. Although every time I go for ANY bloodwork I ask for tumor markers to be checked...they are drawing blood anyway, so why not!!! It is so hard not to worry, eh??!! XO Suzan

DianneS · 08-20-2009, 01:13 PM

Hi dear ladies,

You all seem to have developed some coping strategies. I have not, and I think it's because too much has happened in such a short time (my aneurysm surgery in '06 which was scary enough and life threatening).

I just don't know how to cope anymore. Sometimes I feel like ending it but I can't because there are people who love me and need me. I guess. I'm such a wreck anymore that perhaps they would be better off without me.

The ironic thing is, my neurosurgeon said he would perform a surgical clip of the aneurysm because I was a worrier and this way I could go on to live a normal life. Hahaha. What a joke.

caya · 08-20-2009, 06:37 PM

Hi Dianne,

I have a digital breast mammo once per year, and a breast MRI once per year - alternating every 6 months. I now see my onc. twice/year - I can't remember if he did bloodwork last time, but I see him next month so I will ask him. I don't know if he does tumour markers, I will ask him this too. I think he does not hold too much weight with them, as others have said they are often unreliable.

I go to my gyn. for a pelvic ultrasound and gyn. examination once/year. My onc. does a physical exam when I see him (2x/year). He does not do any other tests, that is the the protocol, unless of course I had any symptoms. (which I have not had).

My DH had an aneurysm in Jan. 2006 (he had the coiling procedure done), I was diagnosed with BC in Oct. 06 - went in for a breast reduction after a clean mammo and breast ultrasound. Talk about shock and anxiety. Dianne, please do not give up - are you on any anxiety meds? I am on Effexor XR - 75 mg./day, helped with the hot flashes and anxiety. I have been on it for nearly 2 years now, I have no plans to go off it.

all the best
caya