Follow up scans for early stage

ravdeb · July 2007

I keep reading about the reasons why most doctors do not ask for scans aside from mammogram and US for follow ups.

I have been told it will make no difference, early signs don't show up until there are symptoms, and so on.

I've read that triple neg bc has a higher risk of distant mets than local recurrence. If this is true, then why would they want my affected side mammogrammed and ultrasounded every 6 months? Why would I need that?

Also, I've read of women on the boards here who have had routine scans (PET, CT)and they have found mets without symptoms. Wouldn't it be wise to get the scan and catch the mets before they spread further if in fact, they could be caught on a PET scan without symptoms?

And...what if we are not aware we HAVE symptoms. I have back problems. The last CT showed it was not cancer. What if it were today? My doctors ignore my complaints now because I've already been scanned.

And..could it be that insurance doesn't want to pay for scans on us early stagers? Isn't Triple Neg more aggressive? Grade 3? Wouldn't it make sense to find out early and extend lives before symptoms and pain happen?

Am I just not "getting it"?

I should add that I'm not really that worried but on the other hand, I am one that usually likes to know everything and be sure all is being taken care of.

nosurrender · July 2007

Hi Ravdeb,
I hear ya!

My former onc- who I still adore but he stopped taking my insurance- believed in scans. That is how my new primary was found.

I am not sure if my current onc believes in them but I am going to insist.

I am just one example of how scans can find something before it turns to mets.

I have a friend who was also triple neg who was never scanned. She had a tumor return to her mast scar and they just removed it and never re-staged her. If they has run scans at the time of her new tumor, then they would have seen it was already in her lungs and liver and she would have been started on the correct protocol. She wasn't. And she is gone now.

When my new tumor made its appearance I was re-staged to see if I had mets someplace else.

I don't understand insurance companies. It is MORE expensive to TREAT something they could FIND EARLY and prevent from getting bad.

I believe in scans as you know!
Before my bilat I alternated mammo with breast MRI. Had a bone scan and PET every couple of years and I am glad I did.

I agree totally with you. I want to KNOW what is going on so I can be in control of it.

We have to stay two steps ahead of cancer in order to beat it- that is why we need scans.

Love,
g

ravdeb · July 2007

I remember your story, Gina. This is why I don't get it. I'm not a "candidate" as my onc put it, for a breast mri. I understand that candidates are those whose moms had bc. Well, thank G-d my mother did not have it and at 80 years old, I hope she never gets it. But I did get it for some unknown reason. No history..just this rare triple neg that they have yet to figure out. So, since they have not figured it out, isn't it kinda dumb that they don't scan us all regularly in an effort to keep things under control?

How are you doing, Gina?

Anonymous · July 2007

I am confused by the scans also. I had a PET/CT last Tuesday, Bone Scan Thursday and then started chemo on FRiday. When I asked my onc what teh results were she replied. "it shows activity". That was all she said. I have now learned from other's that may just mean healing from my surgery. SO now I wonder, why am I going thru hell with this chemo and nuelesta...if I may have no cancer there at all?

cheekymonkey · July 2007

I was going to post this same thing. My sister has had a bad recurrence, and we both had the same type of cancer (Triple Negs and Stage 3). If she has a recurrence (hers surfaced because she had horrible back pain, nothing showed up on a bone scan, but she insisted that do a PET/CT and it showed uptake near a rib, activity on her right side, her previous chest area lit up (where she now has a rash of tumors), and pleural effusion in her lungs.) If they had done a PET scan earlier, maybe they would have found it earlier. She had to BEG her insurance company when she was first diagnosed for a PET scan because they kept turning her down.
Now I'm wondering whether I should get a PET scan too! I just had a prophylactic mastectomy, and my right breast was "FILLED" with pre-cancerous cells that would have turned into cancer within the next couple of years. Obviously the chemo I had didn't kill those cells, or my body is just making more cells. Shouldn't I be asking for a PET scan too??? This triple negative thing is crazy.....

mitzi

boobbuster · July 2007

Ravdeb-
The exact thing happened to me and I ended up having to go to my breast surgeon to get the scans done. By any means neccessary, follow your intutition and listen to your body; nobody can hear it like you can. God is able, Stephanie

elf146 · July 2007

I feel the same way, however, my Onco has me on a schedule that I like. I to am triple negative, grade 3. I will have a CT scan and a bone scan every April and a PET scan every Oct. Also my radiologist is having me do a mamo every 6 months in July and Jan. This gives me some comfort that they are being pro active.
I really hope and pray they find something us triple negatives can do or take besides just wait and see.
My father's siblings (8 total) 6 had some type of cancer and most of them had it twice. It did come back someplace out. only two with breast cancer. My dad had lung cancer the 3 years later a brain tumor that took his life.
Sure I'm scared, but try to just live one day at a time. I just recently have been able to make myself plan for vacationa and a future with possible retirement.
The whole cancer thing and being triple negative had been very hard mentaly to deal with.
I read these boards every day and they sure are good for me. I finished my treatments in April. Had chemo, CMF x 6, surgery then rads. Feeling fine right now and pray I can stay that way.

Renairis · July 2007

I was given a 2nd PET scan prior to going through with a preventative double mastectomy because I am triple negative and BRCA1 positive. This Pet showed I had mets to the chest wall and lungs. Becaue I had to wait for a clinical trial including Avastin my onc. told me that I can wait a month because if the cancer already metastisized - if the meds work, they"ll work in another month and if not, then they won't be effective in a month either or visa versa.I'm wondering if this is true, and I am fortunate that up until now the meds are helping.
The PET SCAN can of course be a very good indicator for the earlier stages and if they can catch the growths before they are mets then this test can surely help stages 1-3 to be "ahead of the game". The big question is :How to inluence the onc. and insurance companies to allow for PETS and MRI for early stages.
Rena

playwriter · November 2007

i was stage 1, grade 3, as well. i'm glad to have elf's input, so i'll know what to ask for in regard to tests.

ravdeb · November 2007

Well..I started this post back in July. It's almost Dec and the update is that the radiologist who read my most recent mammo and ultrasound last month told me I have such dense breasts that these tests can't be accurate.

My onc said that at least my breasts are easy to manually exam. She and my surgeon wrote referral letters for a breast mri but it was rejected. My onc called them and spoke to the top doctor in charge and he said no promises but I'm to call in another week.

I also want a PET. My onc isn't aware of this yet because I'm working on one thing at a time. Knowing that women have found recurrence without symptoms because they had a PET means I need to have a PET. The question is..how to trick the insurance co into giving it to me???? hmmmm Wink

FloridaLady · November 2007

Ravdeb,

The trick Embarassed is to have a complaint that they will not want to do some other kind of scan. PET is the best for soft tissue. CT Scan does not do a great job with this but it is thousands cheaper. (CT is better for organs...so they say) You don't want to complain about anything near a bone of course. So I would go for...collar area (common for mets) Hopefully they will not want to do a MRI. I have a double mast., so I can say "chest wall" area because they can no longer do mammo's anymore on me. Also high on the chest wall where the mammo's can't reach.

Isn't this terrible we have to have this talk. I don' know if I'm lucky or not but I have had PET scans every 2 to 3 months for two years.

Living in hope

FlaLady

Shirlann · November 2007

Hi sisters, here in California, with most of us in HMO's the only referral we get for any additional treatment is to Dr. Krevorkian!

Kidding aside, they do very little (additional or advanced testing) with this type of plan, because they make more money the LESS they do. So here we are.

If you have really super insurance, ex government or military, it is better, but most of us just muddle through.

I finally got a bone scan, but it was negative, I had such bad rib pain, but nine years later, I still have the rib pain. Go figure.

Hugs, Shirlann

Follow up scans for early stage

Comments

Categories