I am having PET scans about every three/four months. There is one scheduled for 2 February. I abhor them and I'm afraid of all that radiation. If anyone has information on the degree of radiation and if other scans are computable, please enlighten me.
Are repeated PET scans an overload of... - SHARE Metastatic ...
Are repeated PET scans an overload of Radiation?
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jersey-jazz
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Ask if you Can I have a CT scan instead. It is much less radiation! I’m treated at Lombardi an Georgetown in my oncologist there tonight is PET scans. Well I have to have a bone scan I get that and the CT still less than the pet scan
Thank you! I think that I will ask for a scan other than the PET scan when I do the tele visit with the oncologist.
Pretty sure they get more money with PET not that it should matter to docs BUT. Maybe you can get CT with contrast mire on schedule and bone scan less frequently
That is my thinking as well. I get curious about why I have so many office visits and scans scheduled. As noted before, I have very good insurance. I will push for scans that have less radiation. This is absolutely due to the confidence this stream has given me from all you good people.
I agree, this site is awesome. First, we can get advice and opinions from other talent soldiers. But, for me, more importantly, I am energized by helping anyone that I can. This greatly assists me in this journey. So, thank ALL of you for being encouragement.
Also, PET scans are based on sugar and cancers response to fast dividing cells. Breast cancer is not one of the faster cell dividing cancers. Therefore, not determined by numerous oncologist to be the test of greatest importance. Also, remember the staff that administers the radiation (at a crazy amount) leaves the room and shuts the door as no one wants to come near you!! Well that tells me something right there.
Thats interesting because I've only had 2 in 18 months and only because I asked for it. My insurance says they are too expensive. It seems like overkill unless you have other reasons for so many. Just my opinion.
thank you for your response. That is interesting. I am worried about having way too much radiation with the PET along with all the other scans with radiation.
I’ve had one pet scan since my diagnosis three years ago. I follow with ct scans because it’s less radiation. I definitely would question the doctor.
Thank you! May I assume that you live in NJ, also? This is the support and the info that is going to help m.
I’m in Rockaway. I just read a post from you from months ago. Sorry I missed it before. I go to an onco group in Morristown/Denville.
I grew up in Sparta. 🙂
I had a house in Sparta on Stanhope road. Small world.
MayCos, blms and HopeinNJJerseyites! Great! We need to talk more. I grew up, got married and had my children in Ridgeweood, NJ. Left and went back to my true love in Scotland, After his death, I returned to what was our summer home in Sussex County NJ, I call it God's country. However, very recently, I've been calling it Deliverance Country.. What are your stories?
We've spoken by phone before. I changed my username, though. Was LeprechaunOg before! Needed something better/shorter than that. 😁
Dear MaryIt's nice to make your new acquaintance. The new name is good. I hope things are going well for you.
Frances
Thanks, Francis! Doing pretty well on this side. Hope you are, too!
Would love to have a get together with our NJ “locals” weather is getting nicer. Covid lessening. Let’s make a plan. I’m available anytime except a couple weeks in June.
I can meet as early as tomorrow., Wednesday or Friday, at 1pm, I have an appointment at 10am with a neurologist in Wayne.tomorrow. I would be happy to meet with you at a place of your choosing. The Clinique counter at Macy's is missing me and I am missing it. I think that you live in Rockaway. Is that right? We can invite anyone from Jersey that is interested. Marycos may be interested in joining us. We can meet at some restaurant in the mall at 1pm. I'm excited. What say you?
You've already answered my most recent question about where you go for treatment. Sorry! Further to the earlier of my posting, today, perhaps we can arrange to meet, with masks of course, in Rockaway when the vaccine is ready.
I’ve already received my first vaccine, second is next week. I am a nurse and was fortunate/blessed to receive it. Anytime you’d like to meet I’m game!
HopeingNJ
Am still waiting to get the first vaccine. I've been mostly hiding out in house, almost afraid to go out. My adventures out are always having to do with doctors and hospitals. I spend an inordinate amount of time the internet trying to get the vaccine. Also, quite frankly, I am not feeling that well, lately. When I get the vaccine, I would love to meet up, perhaps in the Rockaway Mall or in Sparta.
I can’t get Pet scan’s anymore, I have a bad reaction to the radioactive dye, but when I did years ago , when I first was diagnosed with breast cancer in 2008, my Oncologist then would only give me them once a year, now was diagnosed in 2019 with MBC and I get ct scan’s every 4 to 5 months and had some with dye and this last ct scan without , to prevent less radiation from the Machine !
Thank you, Djd60! Your history of a bad reaction to the PET scan is scary. Over the last few days I have realized that I will not have to go for any scan. I will just use the COVID as an excuse to do a telephone visit and skip the scan for the time being.
Welcome, it isn’t normal to have reactions to the Pet scan, I’m one of a very low percentage but for the few women I know that have MBC do get Pet scans but not every 4 or 5 months , but they do get ct scans and I do to every 4 to 5 months because the radiation I was told from a technician that it was lower dosage of radiation with a ct scan, but they need to do ct scans to compare the results from previous scans to make sure there aren’t any changes with the cancer, or tumors, bones etc in the body to see if the medicine your on is working etc. or maybe needs to be changed or what ever the diagnosis is, so it’s important to have done my Oncologist suggest but it’s my choice, but I do listen to my Doctor because I trust him 100 percent , good luck and God be with you !
How to detoxify from X-ray radiation googol it
Thank you! I've gone on to look up the detoxification remedies. I am a very healthy eater but, now, will be making extra efforts to emphasize the foods with potassium magnesium and sulphur and to investigate glutathione further. Again, thank you for your response. It is very helpful.
Jersey,You should mainly be getting cat scans.
Please tell your oncologist you don't want them and that they are not supposed to be used frequently. I just had one and it was my first in three years. Blessings, Hannah
Thank you, dear Hanna.
Last week, I had my first CT scan after two previous PET scans (since July 2020). So this issue just came up for me. I asked my oncologist about scheduling my next PET and she said we would be doing a CT (and a bone scan) instead, due to elevated radiation exposure with PETs. She said the CT/bone scans are cheaper to perform, and offer the same information needed.
Thank you! I have had too many, now, and will be pushing for any scan that is with less radiation. I personally like the MRI scans with no radiation but do not like the stuff they put in your arm for contrast. Sometimes, I feel like we are just bodies that are being pushed through the mill.
I think it depends on what they want to see. I just reached out to my oncologist about my CT scan report, which makes no mention of my affected breast. (It mentions the other one, which contains a benign tumor I've had since the late 90's.) She said that at stage IV, they don't pay much attention to the actual breast tumor to gauge current status, but, rather, what is happening outside it.
Anyway, she reached out to the radiologist to see if he could answer my question about any reduction in the size of my breast tumor. I already know there is reduction, because I can visibly see it (my breast now looks almost the same as my unaffected breast, where it was deformed prior to treatment)... but I was hoping for some confirmation on this, along with some info on what is happening that I CAN'T see.
Just heard back, and while the CT scan is not the best tool for this purpose... he 'thinks' the tumor in my affected breast is smaller than 3.5 months ago. So, I guess my point is... what scan they use probably depends on what they hope to find out.
We are!
I also wonder if all the scans are helping or causing future problems. I don't know how dangerous they are but when I am having the scan I visualize that the scan is sending healing rays into my body. I try, by using these visual pictures, to neutralize the bad effects. Don't know what else to do. I know they use the scans to guide the doctors in our treatments. But I do worry about it too. I will talk to my oncologist in my tele-health visit tomorrow and raise those concerns with her. If I learn anything useful I will send out a message. Hugs Vienna
Yes, of course the scans are potentially causing future cancer and problems for us. But, appears we need to only worry about getting there. Take iodine drops to help.
How many iodine drops do you take. Would it help with my osteoporosis as well as my Hashimotos Thyroid disease? Hugs Vienna
Is it advised to have Iodine treatments when you have an autoimmune disease, like Hashimotos Disease?
My husband is a radiation oncology physicist. He says there is less radiation from the PET than a CT with contrast. And both are certainly less than external beam radiation therapy. Check with the radiologist if you have questions or your local physicist.
Wow! That information is gobsmacking to me! Thank you so much for this, Anna! It creates so many more questions. They do a PET/CT to me. It's really quite unnerving. Does that mean that I get radiation from both the PET and from the CT scan?
No. That is only one test; that is just the full name of the test, PET/CT, positron emissions tecnology CT. No fears. It's like around 10 or so chest x-rays but it gives the dr so much good information.
Thank you! I am confused and because your husband is so qualified, I believe what you wrote me. Why is the PET scan so notorious for high radiation levels, then? Is this common thought connected to its' very high cost?
I don't know but that certainly could be part of the reason.
Ten or so chest x-rays sounds like a lot! I had PET/CT with contrast when I was diagnosed and then every 3-4 months for a year. Everything went well; shrank or disappeared with treatment, so she went to six months. Of course, that time, something new showed up that she "has to keep an eye on," so I am back to 3-4 months. I asked her about the effects of radiation, and she said that the risk of not detecting mbc progression is a greater threat to my life than the effects of radiation. No one told me about special diet, only that I can have nothing to eat or drink except water for six hours before the test, and I am supposed to drink 32 ounces of water in the hour or two before. I never get that much water down in the morning. I also learned I don't have to drink all the stuff they give me during the hour before the test.
I had the last PET scan a few weeks ago and then, a week later, they removed the cancer in the liver by microwave ablation. The nurse told me just before the surgery, that they were going to use PET to guide them, the only hospital that did it that way. While I am writing you, it is occurring to me that perhaps all these scans have made me feel so bad.. Just before the surgery, I was diagnosed with B12 anemia. My body does not convert to use. The blood results are going down instead of getting better. On Saturday, I had complete blood work after taking three weekly B12 shots and the results were disappointing. Yesterday, I had my forth and I really am not anywhere up to snuff. Sorry to dump this on you.
PET is over twice the amount of radiation as the CT. Look it up.
I am supposed to have a PET scan next month and an MRI. I was going to do the PET scan so I would not have to do a CT and a Bone scan as I figured the radiation from those 2 tests would be more than 1 PET scan. I am not sure now if that would be correct. I have never had a PET scan but have learned you have to follow a special diet 24 hours before having it.
? Haven't heard of a "special diet".
My nurse practitioner said that you can't have sugar or carbs the day before. I actually looked up online if there was a special diet and there was. There were several foods and drinks that should be eliminated for 24 hours before the test.
Yes reason for that is PET injects one with a huge amount of sugar based drug so that the fast spreading cancer cells will gobble up that sugar, which they need to live, and shine away.So they want that to be sudden and cancer cells to get excited with the newly introduced sugar. An easy way to explain
Thanks for the tip, Sandra!!! Was wearing a regular, wired bra. Now... to buy a good sports bra!
Thank you, Sandra. That is excellent primary, straight from the horses' mouth info. I think that, at this time, I will be cancelling the hospital visit for the PET scan and will be tele- visiting. I am trying to stay at home as much as possible until I get the vaccine. I've registered with NJ state but seem to be way down on the list. It will happen when it happens. Again, that you.Frances
What is the NJ status for vaccine?
Thank you for going to the source and getting these numbers right off the machines. Although I noted earlier that I was probably going to skip this scan on February 2, I may rethink that. There is so much good information coming from so many of our group. Thank you to all who took the time to answer.
Thank you all for thinking about my concerns about PET scans and contributing to the body of knowledge on this post. The interventional radiologist who may be microwaving my liver lesion has advised me that the PET scan is best in my case. So, because of all the input, I have more confidence in the situation and am going forward with the PET scan on 2 February, next week. To all of you, thank you, again!
Yep Sandra, just saw this but it is the info I was stating to look up. So, you made it easy for others. Thanks
Friday would be great! Just say where? Want to have lunch? Rockaway Mall? How about the other Jersey girls?
Great! You know Rockaway better than me. Will you please pick the spot? I will continue on the chat room.
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