Topic: Post Treatment, are You Getting PET/CT Scans?

My onc says the same thing....no scans unless there are symptoms....freaked me out at first, but I will ask for one if I feel worried. 

Since my type of bc (metaplastic) tends to spread to the lungs first, at least I can get a chest xray whenever I want one from my GP, although I won't have that done too often, because I have read that too many chest xrays are bad....I have had CT scans due to a blood clot in the lung, they scanned from my knees to my neck like 4 times now to check for new clots(due to symptoms I was having), and haven't seen anything else there, so that's good.  I have to get another CT in Nov to establish whether or not the clot is gone, so that makes me feel better.  I know they're just looking for blood clots, but figure if they saw something else there, they'd tell me.  I also had a CT of my head when my van hatchback door slammed down on it.   All scans I've had have been for something other than checking for cancer, but they made me feel better.  But no bone scans or PET unless I have symptoms.

I figure that if I feel I need a scan, I will do like you did and complain of some other symptom in order to get one if I have to.  Hey, we gotta do what we gotta do, right?

My onc said the same thing - no scans unless there are symptoms.  I had the bone and CT scans before treatment, but have not had a brain CT or MRI.  I've always had headaches, so that is just normal for me, but now I'm wondering if I should have pressed for a brain scan?  My next onc appointment is in November, so maybe I'll bring it up then.

Prior to chemo and after surgery, I had a whole body PET scan and a bone scan and even ultrasound of organs and all were clear. Post chemo, I had a brain MRI and a chest scan, as I had some headaches and caught a flu and worried. MRI and chest scan were all clear, thank God.

My onc do blood check every 2 weeks and every two months tumor mark. My tumor mark was normal prior to chemo and raised during chemo and normal after chemo.

I can see my onc every week if I want or whenever I want.  

Meggy,

I had all the scans prior to surgery. I had my surgery 5/21/2009. I did surgery first and now doing chemo. I do have a question about the EXTRA chemo. Please tell me how much EXTRA you did. I too am young with children...I NEED ALL THEY GOT. I am doing 12 weekly taxol which I have completed 10 of. Then I will be doing something that contains 3 different drugs. I will do that once every three weeks. I want to say it is FEC. The E being easier on the heart. Not completely sure about that. I will then do radiation. My ONC.told me she will scan me every six months. I thought that was too long. I was thinking why not every three?

Thanks....MAY GOD BLESS US ALL

Angelsabove, I did a lot of chemo...more than most who don't have metestatic cancer.   I did it because somehow my body let me.  We've done different chemos.  For all I know, your chemo could have been the best for me.  It helped me that I did some before surgery and some after although for killing cancer it's probably better to have it all in a row.  I'll tell you what I did and I think it's also in my signature line.  4 AC every 2 weeks, then 4 taxol every 2 weeks, then surgery with some invasive still found in one node, so 2 more AC (I had to beg) and 4 Taxotere/Carboplatin every 3 weeks.  This wouldn't be right for everyone.. Some people are cured with far less...just for some reason my body took chemo really well.  Surgery on the other hand, I don't tolerate well.  My oncologist (a true champion in the breast cancer world) got melanoma skin cancer as I was asking for more chemo.  She also had little ones and I think she just really understood my desperation. 

You guys are too much - I've been thinking about complaining about a headache & here some of you have done it already.

To emphasize what was said above, the usual treatment used to be ATC - they did drop the "A" because of toxicity and because people seemed to do just as well without it.

One thing that confuses me is when the 3+ year marker starts. From the day you are dx? From the day you end treatment? What?? 

I am new to this site and have recently joined because my youngest sister (age 40) was diagnosed with TN Stage 2, node negative Breast Cancer 10/07 and is now Terminal with diffuse bone mets. 

She had no follow up scans until she presented with back pain (unexplained cause) and was ordered a bone scan.  The cancer resurfaced in her spine and at that time she became known as terminal.  She fought for a PET scan as recommended by people from various breast cancer sites.  Finally we were able to get one ordered and it came back with the worst news that the mets were too numerous to count. 

So yes, I agree that you need to have follow up scans and that both CT and PET scans are important.  Would it have changed my sister's outcome, we will never know, but fight like h___ to be closely followed.  TN is nothing to play around with.

hi Meggy

Did you have any vascular invasion?

Some women are nodes negative but later developed mets, is it mainly because they had vascular invasion or how did the cancer cells otherwise travel if nodes are negative? What did your onc say? My onc did not say much about it. He just said no vascular invasion is good. (I did not have vascular invasion). 

 You mentioned your onc had skin cancer. How is she doing? Did she take also chemo ?  

After being dx's with Stage 111a TN on 9/16/09, with at least one large positive node, a PET was ordered asap...which besides nodes, was negtive...started chemo only yesterday, AC 4 rounds of AC, then 4 more rounds of more chemo we are still discussing what. Looking at probable masectomy at least and all lymph notes will come out, oncologist said chemo may be recommended again if residual is found, then radiation. If chemo works, I will go for it again and take my chances.  She also ordered a breast MRI, which I can do in a week.  My pathgy report said suspicious vascular invasion possible, so I just hope chemo will take care of that...I feel that the PET was totally necessary, not only for my treatment but to know for myself an to see how far I was and to make sure that the most aggresive treatment could be planned. Maybe it's only recommeded for the later stages?  Anyway, my thoughts are with all of you...

I'm a scanning junkie.   I get scanned every 12 weeks (PET, CT, and brain MRI).  I had a single mastectomy so I also got a mammogram, US, and MRI of the other breast at ~ 6mos.  I'm having a prophylactic mastectomy of this other breast in Nov.  I can't handle the worry associated with it...

I like the reassurance of the scans but I do get really, really stressed out while waiting for results (just ask Judy!... hi Judy <waving>).  My onc said that he scans all of is TN patients (regardless of stage) at 12 week intervals 'till 3 yrs and then goes to every 6 mos for yrs 3-5.  He also said that if you have surgery before chemo, then your surgery date is your anniversary.  So, Jan will be a yr for me... <knock wood>

my oncologist scans every 3 months...bone, ct and labs...the insurance sometimes denies the ct but always approves the bone scan....

Oh wow, I live in California and there is NO WAY you could ever get a PET or CT scan without symptoms, we are mostly in HMO's and their only referral is to Dr. Krevorkian!

But not to say that checking is important.  Dr. Love says, "let it go, if you met out, you will know it soon enough, so why find out 6 months sooner?, since there is no cure".  I don't know, just her opinion.

Gentle hugs, Shirlann 

For those of you who are getting scanned and scanned again, you might want to read this:

Safety Radiation Exposure in X-ray Examinations