Post Treatment, are You Getting PET/CT Scans?
So, thinking about how Triple Negatives are less likely to recur if we get past 3 years without recurrence, a question comes to mind. Is everyone else being scanned regularly? I was scanned when I was diagnosed. Then did chemo before surgery so I know chemo wiped out nearly all the cancer....but I haven't had an upper body scan since DX.
I had a brain scan (after complaining loudly about headaches...in order to get a brain scan) and got a bone scan because of joint pain...both negative. But no overall PET or CT scan. Is everyone else getting whole upper body scans? My new oncologist says no need unless symptons. I personally think that is bull $#it, but haven't pushed for it becuase I've done so much to my body and didn't want the extra radiation. I did a lot of extra chemo because my kids are so young. Figured I'd stop poisoning myself.
What do you ladies think....is it crazy to go without a whole upper body scan? If I hadn't done the extra chemo, I'd push for the extra scans...what is everone else doing?
Comments
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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?
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Gcpommom you are so enjoyable. I totally agree. Thank goodness for that blow to the head. LOL hey, at least you get peace of mind afterwards. I think chest X-rays aren't that bad. I once looked up all the radiation exposures for each test and I think it wasn't much for an X-ray. I think I'll demand one. The lung is a common place to go so that sounds like another good one for me. Hope I don't have to fake a cough. LOL
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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.
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Hi Everyone!
I was just newly diagnosed in July and have already received my first TC chemo treatment for a tumor no larger than 2cm with no lymph node involvement. I am thanking my lucky stars for that one. I am discouraged that my oncologist did not explain more details about my Triple Negative status. I asked about a body pet scan and the subject was dismissed. I too am concerned now about the metastatic factor of this particular diagnosis and am curious why they do not do this in advance prior to treatment!!! I am told by a medical professional that once you have started chemo that with a body pet scan or ct scan, that the chemo can cause false positives in other sites of the body. BUMMER!!!! SO WHY DO THEY NOT DO THIS IN ADVANCE?? I am especially concerned because before the breast cancer was discovered, in 2007 and a follow up in 2008 testing found a benign hemangioma on my lower left lobe of my liver. Now I am flipping out about that - this was even made known to all the breast docs. and STILL no prior body scan was done. I don't think it fair that we should have to wonder. I understand that the breast cancer needs chemo regardless and I guess the docs assume if it is somewhere else in our bodies that the chemo will shrink that too automatically??????? Also I find it interesting that many of you out here have had AC for chemo first and then the TC....have they found that the AC combination is just not as effective in shrinking? Thirdly, why does Triple Negative have a 2 year marker instead of the 5 year marker for other types of cancer? This all really scares me. It has only been about 3 1/2 weeks since I was diagnosed and I have already had the lymph node surgery, 1st chemo treatment, hair is starting to fall out as I type this...I am really having a hard time being positive about future. My husband was talking about a retirement house on the gulf in Florida - I am only 47 and I just felt sad that he may be making those plans without me. This is too new still to me...I feel angry, sad, scared, and not positive as I should be right now. Thanks for everyon'e posts!!
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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.
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jramick is the TC taxol and carboplatin? or is the same C as in AC? Some oncologists are taking out either the A or the C in AC (I can't remember which)...because of toxicity I believe but AC worked really well for me.
They talk about 2 years (really more like 3 1/2) as our critical recurrance period because our cancer is likely to show it'sself within that time. Triple negatives tend to be more aggressive and thus, recur faster, but the GOOD NEWS is that chemo tends to work better on triple negatives than other breast cancers. Love your chemo...its a gift from God.
Have you had your tumor removed? Thank goodness for negative nodes. That is huge. When they remove the tumor ask them to comment on whether there was evidence of vascular invasion (cancer entering your bloodstream inside your breast)
This site will help you so much. You will become your own best advocate. So many triple negatives are cured.
If you've only had one round of chemo, its not too late to get a CT scan. I think the PET part of PET/CT shows inflamation....that's probably why you can get false positives (just my educated guess) but the CT should still be done immediately. Demand it within days before the chemo makes it all dissappear!!!!!!!!!!!! Just because its too small to show up on a CT scan dosn't mean its not still there. You need to have at least an upper body CT scan right away to have all the information. Also a bone scan. AFTER you have those, you can start to demand a brain scan. I don't think the chemo enters the brain (without them doing something special) so I think a brain scan after chemo will still give you valid information. Hope I'm right about that.
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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
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Hi there - the FEC with the "E" bit : epirubicin. If you have a look through the posts over the last say 3 or 4 days, you will find a couple of FEC threads.
besy wishes -
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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.
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Meggy,
I think I may just BEG for a litte extra. That sounds crazy that we would actually BEG for this stuff, but it beats the alternative. I did surgery first and then chemo. They did find 3 positive nodes when they removed my breast. I did not have chemo prior to surgery. That bothers me at times, I think mmmmmm how do I know this chemo is working. I guess that is where faith and HOPE come in...
May God Bless Us All
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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??
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I do get scanned regularly. Full body Bone. Head, chest and adomen CT. I started with 6 month spacing and now I am at 9 months. My chemo was 6 rounds of TEC. I personally would feel nervous being triple neg and not being scanned.
GG; I have also asked the question of when the "magic" anniversary date. After much discussion, for me it is the date that I finished treatment...May 29th, 2007.
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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.
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Same thing I thought too!! In fact, I was beginning to think my onc was a total quack because how can you tell if everything is ok with out rescanning the body?? My surgeon said 11 of the 12 nodes she took out of me still had active cancer so who's to say where else it would be lingering!! I'm definately going for a second opinion and insisting on being rescanned regardless of poison/radiation. They are pumping us full of that stuff anyways at least this one will give us some peace of mind instead of nausea/heartburn/gas/blahhh...
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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 ?
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I get a pet and cat scan every 6 months. I have had one false positive already, but am overall glad to have the reassurance with the scans.
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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...
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I had all the scans after surgery, Upper CT, lower CT, PET. But, my cancer team dropped the ball on me one month after rads finished. I had a brain MRI because of severe headaches, and then nothing. I will celebrate the 6 year anniversary of finding my TN tumor next month. My new onc is setting me up for CT scans, after the hoidays, after a cancer scare last month. She told me at my visit 5 years after official diagnosis (I diagnosed myself as soon as I found the lump) that my chance for recurrance of TNC is less than .2%. She said that didn't rule out a different cancer rearing it's ugly head, but I have a good prognosis.
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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>
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Hello,
Does anybody know of Dr.'s Oncologist that scan in the Northeast area of PA. My Dr. won't scan and it is eating away at me. Also TNBC, Mom died from spread of breast cancer in 2 short years.
I get very scared..Just finished chemo in Aug.
Thanks,
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my oncologist scans every 3 months...bone, ct and labs...the insurance sometimes denies the ct but always approves the bone scan....
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Hello,
Just happened across the thread. Finished rads 10/7 and am now waiting for a full scan.
No questions yet, just reading everyone's posts.
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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
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I asked my oncologist at the Stanford Breast Cancer clinic which anniversary date to use and she told me my diagnosis date. I like that date the best just because it's sooner. I'll hit 2 years this January.
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For those of you who are getting scanned and scanned again, you might want to read this:
http://www.radiologyinfo.org/en/safety/index.cfm?pg=sfty_xray#5
Safety Radiation Exposure in X-ray Examinations -
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".
OMG this woman is ...... wow I mean Im not even sure I can say what I really think of her. Damn
My onc also believes in scans when I have a issue. I dont like it and I have had several scans because of my fear. He told me that stats show that when you discover mets doesn't show to extend survival. Personal thats crap. I think that someone that is found with one small lesion on her liver or one small spot on her spine and starts recieving treatment immediately will possibly due better than someone who is found with a liver full of lesions or mets all over. Now its no guarentee of course but seems to make sense to me. Of course Im not a doctor but stats dont make much sense sometimes.
Just my thoughts.
also if I offended anyone with my comment about Susan Love, I am sorry. Not for what I said because I think she has shown very bad judgement lately and I personally think she's crazy. But I dont like offending anyone.
Teresa
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Saw oncologist this week and requested scans. I didn't have scans before chemo, surgery,radiation and wanted at least a base line scan. He scheduled scan in 4 months just prior to next visit. I remember my first oncology visit and they were in such a hurry to do liver blood work and chest xray, but no ugency now. Extremely frustrating.
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I just asked my onc today when I will get follow-up scans and he said I won't be getting any. I am totally freaked out about that. He said after chemo I will see him in 3 months. He said the chemo is just preventative(?). How does he know that it worked? I had 15 positive nodes.
Can I ask my BS to send me for scans? Or my primary dr? There is no way I am going to go through all this and not get a scan sometime down the road to make sure it helped.
Sorry, had to vent
edited-forgot a word
Diagnosis: 6/29/2009, IDC, 3cm, Stage IIIc, Grade 3, 15/21 nodes, ER-/PR-, HER2- -
I am 4 1/2 years out and I haven't had any planned CT scans. I did have one when I was diagnosed with a kidney stone, so that was a little bit of a glimpse inside, but my oncologist has never wanted to have one. She does blood tests, chest x-rays and I have had a bone scan after a spot on a breast MRI that ended up being nothing, but no CT's or Pet's. I did have a Pet after my lumpectomy and before chemo.
Hope this helps
Shannon
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I finished treatment (chemo and rads) in June 2008. My oncologist sees me every 3 months and does lab work-- liver enzymes, metabolic panel, CBC, and tumor markers. He only recommends a mammogram once a year and no other scans/tests. He is always citing research studies that show scans don't improve survival, yada yada yada. (I actually really like my onc and trust him, but it is just hard to wrap my head around the idea that finding a recurrence earlier cannot improve my chances of survival... it just doesn't sound logical, does it?!)
My surgeon, a surgical oncologist, was a big believer in scans, so I had a brain MRI and PET Scan last October before my port was removed. Unfortunately, he has since moved, so I've lost my "scan man"...
I had a lot of aches and pains after Taxol, but they disappeared last fall. Sooo, when I started having new pain in my spine, pelvis and legs, I went to my GP and asked for some tests. She recommended a PET Scan, which I just had Monday. I called my onc to alert him to my new symptoms and he ordered a bone scan, which I will have tomorrow.
The PET results were good, so I'm hopeful that the bone scan will be normal as well. So, this may well turn out to be a very expensive way to get peace of mind, but I'll take it.
I don't necessarily want to spend my life in the radiology department, but an annual scan doesn't seem like a lot to ask for follow-up. Will I ask my GP for another scan next fall whether or not I'm experiencing any new problems? You bet.
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