When to get final tests to show NED after treatment?

Katarina

Hi Ladies,

I'm curious when CT/Bone or PET scans should be done after surgery, chemo and radiation treatments are complete.  I thought they would run these immediately following radiation therapy and while on Anti hormone.

 How much time must I wait before I can find out if I'M NED? (No evidence of Disease)

Thanks,

Kat 

pumela115

Hi Kat, My onc will not do any scans unless i am having symtoms. However in Jan my BS wants to do an MRI because i have very dense breasts and i will have been on arimidex for 6 months. (whatever that means). So that being said i believe that i am NED and have been since i had my surgery back in June of last year. The chemo and rads were just to make sure to get any little cancer cells that might have escaped. So now i'm just trying to get back to my normal self and on to living life again. I had IDC so i'm not sure if the protocol is the same for ILC, but hopefully someone will be long soon to let you know. But i'm pretty sure you are NED too! It's kinda hard to stop thinking about cancer so much, but hoping with time that we won't think about it so often.

 Pam

gillyone

I am 2 years + out from diagnosis and have not had a single scan since finishing tx in December 09. I too believe I am NED right now and my onc will not do scans unless I present symptoms.

ma111

Ironically I just made 2 posts in regards to follow up scans. In your situation, if your first bone/pet was normal you do not need more at this time. They wouldn't show anything right after treatment. If they were abnormal they would run at least a ct to see if the disease responded to treatment. Being a 3b, I am thinking your bone scan was normal or you would be a 4. Did your pet show anything outside the breast or nodes?

Have they been following you through treatment with tumor markers? If so, they will do those again soon. If they are down you are NED. Were they able to remove all the cancer? Also remember that your family doctor can run tumor markers if you are there for something else. That's how my latest progression was found. I wasn't due a onc visit yet.

pitanga

Ma111, Regarding tumor markers, mine have always been normal although I have metastatic disease. My bone met, which was not giving me any pain, was found after my local r ecurrence was detected. My onc ordered a bone scan and the metastasis lit up (along with areas of arthritic inflammation). It was confirmed by MRI and PET/CT.

Katarina, even before I was dx'd stage 4 my onc always ordered abdominal and vaginal sonograms, along with a chest x-ray, every year along with my mammogram check-up. Sonograms are relatively cheap and they are also non-invasive, unlike CT scans which involve huge amounts of radiation.

Katarina

Okay, this may sound stupid but what tumor markers are you talking about?   I want to make sure we're talking the same language.

 Thank you all for you share and what seems reasonable on testing. My CT/Bone and Abdominal scans done just before chemo treatment came back normal so that's last result.

I finished chemo and starting Rads tomorrow. I'm okay with waiting for additional scans but just want to know that they got it and I'm in remission.  I'm not sure what "symptoms" I should watch for. I had a 12cm tumor and BMX and I don't know where to look for symptoms. Any ideas what I should watch out for?

Thank you Ladies!!

Hugs,

Kat 

Anonymous

Hi y'all,

I am 58 - I was 55 when dx with breast cancer. My mom took the estrogen pill DES in the 1950's which has been linked to breast cancer. I didn't have any of the risk factors. What a surprise to find out I had bc. I thought I had done everything right!  I don't smoke, etc. It sure messed up my plans for travel, etc.

tuckertwo

momof2greatkids

Hi Kat - finished my (hopefully) last herceptin Monday (had 6 rounds TCH aug-dec 2010, bmx 12/10, rads jan -feb 2011, continued hercep til now) and I am having a PET scan next week. My onc does not do or rely on "tumor markers" stating they are not reliable enough, and I am glad, I would much rather go straight to scans now rather then later.

pitanga

Kat, the tumor markers I am referring to are blood tests. They appear on my lab reports as CEA (Carcinoembryogenic antigen) and CA 15.3. I think they only flag metastases in specific organs but I am not completely sure.

When I went for my yearly checkups after finishing treatment for stage 2 but before my stage 4 dx, my onc always asked me if I was experiencing pains or any other unusual symptoms. At one point the ultrasound detected a small blip on my liver and he ordered an MRI. Turned out to be a hemangioma (benign growth, similar to a mole). The ultrasound also showed a fibroid in my uterus which grew a lot while I was on tamoxifen but after I finished it started to shrivel. Now US shows a blip on one of my kidneys but it looks like a cyst and does not grow so it seems to be innocent.

Lots of ladies wtih bone mets discover them because they cause pain, especially when they are in the spine. In my case however I had no symptoms and it was only detected because "luckily" a small local recurrence showed up on my mammogram. I put quotation marks because at the time I didnt feel lucky at all, on the contrary! But now, two years later, after radiation zapped that one metastasis into oblivion, I understand that I truly was lucky. Most ladies dont discover they have mets until there are quite a few of them and thus harder to treat. To discover that one is stage 4 while there is only one metastasis is very rare.

So, the thing is to be aware of your "normal" aches and pains, both chronic stuff and the ones that come and go, and stay on the lookout for anything new and persistent. A one time bad headache is no cause for alarm, a headache that lasts for a month is another thing, unless you are a person who gets migraines.

Katarina

Thank you Pitanga for the response. I don't see this CEA on my lab reports. Did they run this blood test for you when you were stage II?  Or was only after you were discovered to have mets. I'm so sorry you had to experience this recurrence. 

I know they have specific blood tests to detect cancer for just about every organ. (they don't have one for breast cancer). I had one done when they found a cyst on my ovary and I wanted to ensure it was benign. That was call CA-135 if I recall correctly.  

I asked my Onc the last time I saw him how he could test my angio -lymphatic blood system to ensure no cancer. He said there wasn't a test for that. I then asked "well then how did you test for it and find it positive from the git go". He said pathology found it in the sample of tumor and tissue removed during surgery. They don't now have a test that can detect blood for random cancer cells that could be anywhere in the system.

 Can you imagine how far ahead in Cancer cures we'd be if there was such a test? 

Thank Pitanga and all of you ladies. You have really helped put my mind at ease.

Hugs,

Kat 

pitanga

Kat,  I live in Brazil but I am American and did my stage 2 treatment in the US. My oncologist there told me that after finishing the stage 2 treatment it would just be yearly mammograms from then on, but when I came back here to Brazil my oncologist here wasnt content to do only mammos. He always asked for the whole battery of tests I described above, including the blood work, at my yearly checkup. I used to think he was being obsessive and used to complain about the bone scan especially, since it takes up almost the whole day, but since my recurrence and metastasis were detected I have changed my tune.

I have been reading on this site about the test for circulating tumor cells that is now in trials. It sure would be great if it works. I hope it doesnt take too long.

Katarina

Thanks Pitanga, I asked my Onc today for the CTC test and he said it's innacurate. He's submitted the test knowing patients have cancer cells circulating in their system but the test come back negative. It's a false negative which is not helpful but actually hurtful. 

I hope they get it right too. We need this test.

Hugs,

Kat