PET scans after treatment
Comments
-
I had mets in my skins (removed by surgery). I have a Petscan every 4 months for one year (one done, NED) then a Petscan every 6 months for the following year. After this, I will be considered in remission.
I want to do a CTC test but before I will have a treatment of doxycyclin and Azithromicin + Vitamin C (supposed to kill 90% of CTC in a mouse model).
0 -
I had mets in my skins (removed by surgery). I have a Petscan every 4 months for one year (one done, NED) then a Petscan every 6 months for the following year. After this, I will be considered in remission.
I want to do a CTC test but before I will have a treatment of doxycyclin and Azithromicin + Vitamin C (supposed to kill 90% of CTC in a mouse model).
0 -
Misstic I would be very interested to hear your results once you do the test if you dont mind sharing.
I think I could push for more aggressive treatment with my ONC if I knew I had CTCs. I plan to wait for my 5 year date though.
Also on the point that earlier diagnosis of mets doesnt change the outcome, those ASCO guidelines were based on very old studies. I know that if you can treat when tumour burden is lighter, then you can get a better response. There are pros and cons to this (and numerous other threads debating it) but I am a logical person. If I can find a small bone met and deal with it before my bones fall apart and I need surgery, then that is a better outcome.
0 -
To be honest, I might feel differently if I were a Stage 1 though. If I were stage 1, I probably wouldn't be on these boards.
0 -
trinigirl,
As someone stated earlier, CTC's may be indicative of something and tx plans may change if you are stage IV, but if not what are you treating? If there are no mets present on imaging, but one has rising CTC's what aggressive tx do you choose and what area are you targeting? Remember, CTC's mean nothing for some patients so why go for aggressive tx when there is nothing to treat?
I had a single, asymptomatic bone met, 2 cm, which was an incidental discovery found during imaging for a non-cancer related issue. I received local tx, rads, and have been NED since. Are there still tumor cells moving about my body? Quite likely, but I'm definitely a less is more kind of person, so I have simply been on AI's all these years. I do believe that part of my longevity at stage IV is that the bone met was found early by accident and that it is grade 1, i.e. due to the incidental discovery I've just known about it longer. I don't believe that treating that bone met early will ultimately spare me because those sneaky little cells are out of the barn. They may be dormant right now, but they haven't disappeared. Treating when the tumor burden is lighter may be helpful (hence the argument in favor of mx for stage IV) but that's not universally the case. I am a very logical person as well, but bc is not logical. Perhaps that's why we still have no cure ☹️
This conclusion is from a 2015 study. It does indicate that there may be benefit to early met discovery, if imaging confirms their existence but further study needs to be done to see if this prolongs survival.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4453962/
CONCLUSION
Summarising our findings, a reproducible tumour marker increase based on individual baseline values followed by whole-body imaging is highly effective for early detection and localisation of tumour recurrence in clinically asymptomatic breast cancer patients. We could also show that patients (except patients with TNBC) developed distant metastases more than 60 months after primary diagnosis, which probably could result in continuing follow-up care beyond 5 years in a more intensified way. Whether patients might benefit from earlier and more accurate tumour detection and improved therapeutic options with a prolonged survival has to be investigated in further studies. Therefore, a large prospective randomised trial will be needed to draw any firm conclusions.
0 -
Hi muska, if I am understanding correctly, did you not get any type of scan work done at all? I'm meeting with my MO tomorrow to discuss a treatment plan, and my stomach has been in absolute knots all week knowing she's going to rush for these tests. I have absolutely no symptoms, and I'm just terrified for these potential scans and what they may show. Although, I would love peace of mind... I'm so torn.
0 -
Dear vmv,
You have not published your profile, so I don't know whether you are about to start treatment, in the middle of it or have completed it already. This thread is on stage 3 board and about PET scans after treatment, so I assume you are stage 3 and have completed active treatment. I think a lot depends on what your scans were like before treatment. If they were all clear before treatment and blood work including tumor markers is stable, and you have no complaints they probably won't do any scans at all. If there was something suspicious on your pre-treatment scans and/or you have some worrisome symptoms they might order a scan (what type of scan, depends on what is suspicious or what your complaints are.)
Speaking of scans, i got an MRI and chest CT before treatment. I continued getting chest CTs for two or three years after treatment because I have multiple nodules in my lungs they needed to monitor. I wouldn't have gotten them if my lungs were clear.
Best to all
0 -
My pet scan was clear prior to surgery except right breast and lymphnodes. My OC said that it is not necessary but she will do a bone scan after rads to relieve my mind. I am stage 3.
0 -
We sound similar... My cancer was in my right breast, and even after chemotherapy (basically taxol-AC), the same two lymph nodes had cancer in them at time of mastectomies and LN removals. They had said chemo didn't work well for lobular breast cancer, but recommended I do it regardless--that even 10-30% help is better than none. I didn't start anti-hormone specific treatment (letrozole) until after chemo and after surgery. So, from my perspective, from when I had the PET scan in May, to when I started letrozole in January 8 months later, we weren't doing anything to curb any metastatic circulating tumor cells.
0 -
After messaging to my oncology team, they are going to add on a Brain MRI and a bone scan to my next appointment (which is basically a 6 month follow-up). Any thoughts on if this is sufficient? I guess it eliminates the radiation from PET-CT.
0 -
exbrngrl
You make good points. I get it, BUT if I did have circulating tumour cells at the 5 year mark I might push for Xeloda which I notice newer posters are getting, or add Fulvestrant or Kisqali. Of course my oncologist might flat out refuse but I dont mind being a guinea pig.
I am a less is more person too, and I dont do scans and I have stopped doing tumour markers every 3 months because the anxiety was killing me but if I have CTCs I am going to want to get rid of them if possible.
Here's to better research sooner rather than later. In fact, I wish they would just find a cure already.
0 -
My anxiety is through the roof. I had a clear petscan in March (other than right breast and nodes) Surgery in April, in May AC/T. Went to radiation onchologist yesterday and she wants a petscan to restage me before radiation. All of my chemo blood tests were good and my oc saw no reason for scans. I have no symptoms but I am Stage 3. Really scared and the test isn't until Tuesday.. Anyone had more than one petscan during treatment??
0 -
mpv459. That seems unnecessary.
0 -
mpv - In my opinion, you should be glad of the chance to get another PET/CT.
I had a pet scan before neoadjuvant treatment for my recurrence to make sure the CT & MRI were correct in showing only one area & not more mets. I had another after 6 rounds of TCHP chemo with out pCR. Then surgery & 4 rounds of AC chemo because I didn't have a complete response to the TCHP. Then a third scan at that point before rads. And finally (at my insistence) one more before they removed my port two years later.
I hear what ExBrn is saying. I do know they have a high level of false positives so many docs don't like to run them at all. I know it's extra radiation. Still I found it to be very reassuring that every possible test had been run and that the SOB was FINALLY out of me. At least I had a base line in time when I knew I was NED.
Try not to worry. The more data you have, the more you can plan w/o being hit over the head again.
0 -
Thank you Minus Two. You are right. I wish these tests didn't make me so anxious.
0 -
You got this!!! You are totally right -- the scans DO induce anxiety. Just think of how great you will feel after you get the clear, especially since you had a clear scan in March. You got through it that time, you can do it this time! I know it's hard (I had to take 2 Ativan and an SSRI to get through it). It was by in far the hardest thing I ever did, but SO glad I did it. I know you will be too!
I know you got this! xo
0 -
mpv - forgot to mention - no way can I sit still for the 40 minutes for the contrast to spread. The only time I've ever taken a Xanax (low dose) is before a Pet/CT or an MRI. And they are welcome. vmb is exactly correct.
0 -
Exactly... my Onc gladly gave me a prescription for Ativan for the scans. It really helped. Good luck and let u know what you decide!
0 -
-
thanks so much for the support. YOu will never know how much I needed to hear from you guys who really understand the fear... THANK YOU ALL !!!!
0 -
I'm happy to announce that my new Petscan is clean. So I'm still NED. They finally decided that the next Petscan will be in 6 months with a 3 months clinical exam by a surgeon to check all my scars and my skin.
0 -
Misstic: congratulations on NED!🎆🥂🍾
0 -
congrats, I'm so happy for you!!!
0 -
yay misstic
0 -
misstic- outstanding news!!!!!! I have my pet scan tomorrow
0 -
After 5 days of Ativan, fear and tears I got my petscan results today... NED thank goodness. So I can go into radiation and the holidays without fear. Thank you all for your support and kind words.
0 -
misstic & mpv - great new for both of you. Congrats.
0 -
G1973 Good luck with your scans today.. VMB and Minus 2 Thanks so much for the kind words. I think only we can understand the fear and anxiety that we have over scans.. Our little group is having a good week.
0
