Invasive Lobular Breast CA pre menopausal PET SCAN quetsion

MJJ64

So i'm realizing i'm very lucky. I'm young, 47, Premenopausal, W Invasive Loblular CA had 3 masses spreading away from the original one all in my breast. Estrogen and Progesterone positive; HER 2 Negative; Post Masectomy now 4 cenntinnel nodes all clean and margin to the chest wall good enough so no readiation. So went going through 4 rounds of chemo cytoxin and taxotere (last one is tomorrow) as my insurance policy.
I'm thinking after this is done i want a PET scan...but MD not so sure that is needed or necessary...but couldn't this CA spread through the blood_stream and nodes still have been negative and couldn't it have taken root in bone, liver or brain; so once i've got the chemo out of my system wouldn't it be wise to do this type of total body PET scan to see if i have any areas of concern? And if so shoudl i do this before starting the meds to keep the hormones at bay ( Tomoxofin i think)
Of interest is my sister had the same ca pre menopausal (same sensitivities etc) as well 6 years ago (she is doing great) ...we both test negative for all the genetic markers...go figure! I'm told by all it's a definate familial link and odds are they just haven't found the genetic marker for our cancer. Any thoughts or experience here would be great..i will be talking with my Oncologist tomrrow. Thank you

Megan M

I haven't had a PET scan
I haven't had a PET scan either. My oncologist, and I think many feel, that unless you have some sort of symptons, they won't order a PET scan, bone scan etc. But, if you really feel strongly about it, please talk to your oncologist and explain your reasoning. I understand how you feel.

Good luck and Welcome to the site,


Megan

Lighthouse_7

Megan M said:

I haven't had a PET scan
I haven't had a PET scan either. My oncologist, and I think many feel, that unless you have some sort of symptons, they won't order a PET scan, bone scan etc. But, if you really feel strongly about it, please talk to your oncologist and explain your reasoning. I understand how you feel.

Good luck and Welcome to the site,


Megan

I've never had a Pet either.
I've never had a Pet either. My oncologist has never even suggested it.
I have had 2 bone scans though. First one was BEFORE lumpectomy to see if it had spread to bones.
The second was because I complained of a lot of back pain. Both were clear, thank goodness.

I also had a CT of my chest prior to surgery because I was told they wanted to check for spreading to the chest.
That showed some lymph node swelling so then an MRI and chest node biopsy. That was also fine but they CT my chest
yearly to make sure they haven't changed. I am stopping the CT's of chest wall for a while because I haven't had any changes
with 2 follow ups and I don't want unnecessary radiation.

Of course if I have symptoms that's a different story. So long story short, I think my doctors have been overly cautious ( not complaining ) but never mentioned a Pet Scan.

Go figure.
Good luck and Welcome.
Hugs,
Wanda

Annette 11

I had 4 rounds of chemo Cyt.
I had 4 rounds of chemo Cyt. and tax...also I didn't have any spreading into nodes. I had a pet scan before mastestomies and another when I completed chemo just to make sure they didn't see any area of concern, as you said. Many dr's don't do this and each cancer is handled differently due to many things.
Let us know what onc. said today.
Annette

poplolly

I had a PET scan before the
I had a PET scan before the mastectomy. My oncologist ordered it. Now that I'm done with chemo and rads, she doesn't seem to eager to do other tests. I told her I didn't want to sit around and wait until I recognized a symptom; sometimes that too late. I have an appointment in July and I plan to ask about this again.

cahjah75

Your situation
is very similar to mine except I'm post menopause. I'm the oldest of 4 daughters and the 3rd with bc. I had Invasive Lobular Carcinoma in left breast (tumor 6.1 cm) and LCIS in left breast. Grandmother and 3 aunts round out the bc in our family. I was also negative on the genetic testing. I had bilateral mastectomy June 2010 and just received my clean bill of health. I also did not have any cancer evident in any lymph nodes. My onc recommended PET scan before I started chemo. Nothing showed other than nodes in lungs. Not all insurances will cover it. I had 6 rounds of Taxotere/Cytoxan and 28 rads. I had no reconstruction so instead of mammo had a xray. I saw MO today and again in 3 months.
Char

SoyFuerte

Wow... almost the same )
I cant believe it, yours is almost exactly like my story. Exactly the same kind of ca. My sister had it too, genetic test negative... two weeks ago I had double mastectomy, good recovery. All results came negative after surgery, nodes clean and margin very good, doctors are very optimist, I will see my doctor in 3 months! I am seeing the plastic surgeon and oncologist. I'll take tamoxifen, I guess. All doctors told me that with all the test being negative there is no reason for any concern. Just keep your doctor's check ups, medication and good attitude.... is what they say. God bless, please keep us posted it.

Vicki

susie09

Annette 11 said:

I had 4 rounds of chemo Cyt.
I had 4 rounds of chemo Cyt. and tax...also I didn't have any spreading into nodes. I had a pet scan before mastestomies and another when I completed chemo just to make sure they didn't see any area of concern, as you said. Many dr's don't do this and each cancer is handled differently due to many things.
Let us know what onc. said today.
Annette

I have never had a PET scan
I have never had a PET scan either. I have had CT scans, a bone scan, ultrasounds, mammos and MRI's, but not a PET scan.

Kylez

poplolly said:

I had a PET scan before the
I had a PET scan before the mastectomy. My oncologist ordered it. Now that I'm done with chemo and rads, she doesn't seem to eager to do other tests. I told her I didn't want to sit around and wait until I recognized a symptom; sometimes that too late. I have an appointment in July and I plan to ask about this again.

I've never had a PET scan
I've never had a PET scan. I thought it was mainly used if someone had mets.